Revising the Dream

The End

2011-08-17T17:57:00.000-06:00

My life has turned upside down. I can't talk about it here.

Sooooo...

Goin' private.

Send your email to chrystiekb at gmail.com if you wanna follow. I need to be discreet, so don't be offended if I'm super-selective.

Man, typing on the iPad sucks!

Perhaps I'll return to this blog one day, but until then...

It's been a good ride.

To Bail, or not to Bail?

2011-07-13T13:53:00.000-06:00

You know what I'm contemplating?

Quitting this blog.

It's a burden, y'all. I want so badly to fulfill my New Year's resolution and blog 52 times this year, but I am feeling the pressure.

I start graduate school in a mere 5 weeks and I'm not sure I can devote my time to blogging. (Did I say that I'm starting school in FIVE weeks? Holy crud.)

And I can't even blog about politics anymore because I have stopped watching or reading news. No joke. I am embarrassed to admit it, but the 11:00pm newscast was leaving me sleepless and with heart palpatations. The American dollar dropped again? Panic. Another soldier killed in Afghanistan? Panic. Michelle Bachmann running for president? Panic. Stephen Harper winning a majority? Panic. Child murderer aquitted? Panic.

Thus, I have allowed myself a summer-long hiatus from all things news. Which, of course, means that I am a walking version of everything that I hate: a person who is oblivious to the world outside herself. A person who just lost 50% of all blog topics.

I know y'all love to hear about Ellie. But, honestly, there's not a lot of blog-worthy stuff going on with us these days. And while maybe that alone is blogable, how often do you want to read a "woe is me" post? Yes, my daughter has cerebral palsy. Yes, she's still using a walker. Yes, she's now using a wheelchair. Yes, she deserves better. Yes, it sucks. How many different ways do I need to sing the same country chorus, right?

We are vacationing next week, so maybe I'll be in a more bloggy mood. We'll see.

For those of you who aren't on Facebook (do *those* people even exist?!), here is my latest profile pic. How stinkin' beautiful is this little girl?!

LIFTing Spirits

2011-06-23T12:40:00.000-06:00

How do you like my new swimming pool?

Well, at least it will be a swimming pool for a few more days...and then it turns into my BASEMENT! That's right, folks, the house-building has begun! I told Richard that he now officially could NOT lose his job, ha!

It's been a bit of a rough week on the house-building front. We were hoping to start construction at the beginning of June, but were delayed by the "City" (it's still ironic to me that our town of 13,000 people is considered a city...). Our contractor called us up late last week and started the conversation with these words:

I've got some bad news. The City doesn't like your blueprints.

K, what?!

Long story short (read: I don't understand half of this, since it has to do with numbers and math) is that our yard has to drain back to front, instead of front to back, as we first thought. In order for the correct drainage to happen, we had to change the grade and slope of our lot.

Seems like a simple fix, right?

Sure, if you're building a normal house. The kind of house that EVERYBODY ELSE can build. A house with no wheelchair ramp.

But, that's not us, is it? And the slope of the garage is a HUGE deal for the wheelchair ramp. Every inch of slope requires a certain amount of ramp-length. In order to fit the ramp into our garage with the new slope, the ramp would have to extend OUTSIDE. I am not going to make my kid walk outside in the snow and minus 40 degree weather in order to get to the 17-mile long wheelchair ramp.

We tried and tried to come up with a viable ramp solution, but given the fact that our house is pushing all size limits of our lot (we REALLY like our location...which happens to come with a small(er) lot), it just couldn't be done.

So, now, instead of a ramp in the garage, we have a wheelchair LIFT. Ellie will walk or wheel her way to the house door, get onto a lift, push the button, and be hoisted up to the door level (it's a mini-elevator). It's a perfectly fine solution and may even be easier and quicker than a wheelchair ramp.

But, at $10,500, it's a heckuva lot more expensive.

You read that right: over TEN GRAND.

Sigh.

These are the moments where my head and heart wage war. In my head, I know that I should be thankful that Richard and I have jobs, that we live in a country where wheelchair lifts are available, that we've been blessed with the financial ability to build a new house, etc, etc. But, in my heart, I just want to scream, "Why does everyone else get to just build a house?"

Just build a house...

And not worry about wheelchair ramps. And not worry about where the controls on the oven are, in hopes that Ellie will one day be able to make her own Kraft Dinner. And not worry about the threshold dimensions into the accessible shower. And not worry about the diameters of doorways and hallways. And not worry about how their child(ren) will get down to the rec room in the basement. And not worry about the occupational therapist looking at every single revision of the blueprint, to make triple-sure that the house is as accessible as possible.

And spend $10,500 on 3 separate trips to the Caribbean instead of on a blasted wheelchair lift.

It's frustrating. And, yet, as soon as the thoughts are spewed from my brain, I realize that I am being selfish and ungrateful. I want to consider it a blessing and honor to do this for Ellie, who is so worth it. I don't ever want her to feel as if she is to "blame".

Sometimes, though, it's a struggle to think of this as a blessing. Sometimes, I wish we were like everybody else.

But, hey, everybody else doesn't have such a cool-lookin' swimming pool, do they?!

I Suck.

2011-06-13T15:10:00.000-06:00

Why haven't I posted regularly?

Because I suck.

And, I don't say that in an attempt to solicit a bunch of, "You don't suck, Chrystie" comments. I say it because I really have no good excuse for my blog slackerness.

Because, really, is THIS an excuse?

No.

Is THIS a good excuse?

(Just to clarify: This is a drawing of our subdivision.)

Maybe. Since we ARE building the house for Ellie. Yup. Uh huh.

Is SLEEP an excuse? Again, maybe.

Is being in a funk an excuse? Perhaps.

But, really, it's just because I've been lazy and void of blog entry ideas. Sorry, folks.

Topic suggestions are always welcome! Otherwise, the next blog post may be a book review on the history of the CBC. Intriguing? Yes. Interesting? No.

May Long (or, Too Short!) Weekend

2011-05-24T12:20:00.001-06:00

So. Richard and I went away with our youth group this weekend. Every other (Canadian) May Long weekend, our church denomination holds a national youth conference, “Abundant Springs”, in Saskatchewan. Sixteen hours of bus-riding craziness with 20 of our beloved teeny-boppers, and 3 full days of rockin’ and praisin’ and playin’. Good times.

When I was in high school, I went to Abundant Springs. And rocked it up hard. I mean HARD. I have some amazing memories from those long weekends. And, I apologize profusely to my youth leaders, who had to deal with my blatant immaturity and not-quite-as-funny-to-them antics. Now I’M the youth leader, and my heart bursts with happiness when I watch my “kids” making similar memories. (Except the ones that are made after 2am. Those aren’t quite as heart warming.)

I often joke that I’m putting in my time as a youth leader so that *my* kids can pay it back by being Ellie’s sponsor. You know, when Ellie’s rockin’ it up at youth group.

When ELLIE’S rockin’ it up at youth group.

Ellie? At youth?

It’s going to happen. And I thought about that a lot this weekend.

Will Ellie be able to stay in dorm with all her friends? Will she be able to navigate herself to the bathroom without help? Will there be a wheelchair or walker accessible shower in her dorm? What will she do when it’s time to play the “big game” on Sunday? Will the kids want her on their team? Will she even be able to GET to all the stations, with her wheelchair? How will she get on the bus? Will I have to drive her separately? Will her friends wait for her when she takes longer to get places? Will she have friends?

My heart feels panic when I process all these questions.

Because I want this for her. SO MUCH. I want her to love being a teenager as much as I did. I want her to feel safe and secure within her youth group. I want her to have BFFs that love her and love Jesus. Like mine did…STILL DO! I want her to giggle in her dorm room, as she tells her girlfriends about the guy she has a crush on (who, of course, will also love Jesus and won’t ever hurt Ellie’s heart. Right?!).

It’s just so hard to imagine. Because of all the questions. All the “what if’s?” All the unknowns.

But, there is something I know without a shadow of a doubt: If Ellie wants to go to Abundant Springs 2021, I will move the Saskatchewan Prairies to get her there.

According to our conversation in the car this morning, there will be some prairie-moving to do:

“I wish I could go to Sassassawan, Mom.”

“Well, you’ll get to when you’re older.”

“Old like you?”

“No, not *that* old. When you’re Shane’s age.” (Shane is one of our youth kids, and Ellie adores him.)

“When will I be Shane’s age?”

“In 11 years.”

“And when I get to go to Sassassawan, will you and Daddy be there too?”

“No, I don’t think you’ll want Daddy and me there. You’ll want to be there with your friends. And your youth leaders. Maybe Shane will be there as your youth leader!”

“Because you and Daddy will be too old?”

“Yup.”

“And because when I’m Shane’s age, then I won’t need you and Daddy to be there?”

(Heart-smiling.) “Right.”

“But you and Daddy will come pick me up when the bus comes back to the church?”

“Absolutely!”

“Oooh, I can’t wait till I’m Shane’s age! It’s going to be so much fun!”

Yes, sweet Ellie. It will be so much fun. And Daddy and I will be there to pick you up, anxiously waiting for all the stories that you probably won’t want to tell us until you’ve had a good night sleep. And when you say, “I love you, Mom, but I’d rather be back at Abundant Springs, hanging out with my friends,” I won’t feel one bit of sadness.

Only joy.

That is my prayer.

Relishing TODAY

2011-05-17T13:53:00.008-06:00

Ugh. Moving week has kicked my bootay. I need to make up for some serious blog slackage. There is, of course, no rest for the literary weary, because Big R and I are off to the tourist mecca of Saskatchewan for a big Youth Conference on Friday. Nothing spells "Happy May Long Weekend!" like a sleepless 4-night bout with 700 teenagers. Good thing I'm still 16 at heart!

Today has been a GREAT day!

Ellie lurved spending time with her boyfriend, Elias, at therapy this morning.

I bought new capris in an all-new, guess-this-is-what-happens-to-your-body-when-you-get-off-your-butt-and-start-running size.

Cable was hooked up in the rental house.

I just had a 9th grade student say, "Mrs. K-B, you're too loud to be a librarian!"

And. The BESTEST part of my day was receiving this email:

Hello Chrystie.

Congratulations! The School of Library and Information Studies at The University of Alabama is recommending you for acceptance to the 2011 Online MLIS cohort. The Graduate School will confirm your acceptance shortly via mailed correspondence. We look forward to your joining us and hope that your plans are developing accordingly.

Kind regards,

Beth R, Assistant to the Director
School of Library and Information Studies
The University of Alabama, Box 870252, Tuscaloosa AL 35487-0252

Yippee Skippee! Before the terror sets in, I'm going to relish the delight of being accepted to the college I wanted; one of the best Library Science schools in North America. Tomorrow I'll worry about the cost, the extra work-load, the studying, the feelings of inadequacy...But, for today, I can say, as a STUDENT at UA: Roll Tide Roll!

Wow. Just...WOW.

2011-05-02T07:49:00.000-06:00

I'm posting this on both blogs. It's just too good to leave it on just one.

I was nervous yesterday. Not nervous for Ellie, but for me. And then, of course, I felt guilty for being so selfish. I was nervous about people looking at Ellie. Not because she was breathtakingly pretty. Not because her smile was radiant. But, because of her...uniqueness.

But, then Ellie came on stage and the only emotions I felt were sheer joy and pride. I mean, LOOK AT HER. She just breathes life. Life to the fullest. Unabashed happiness. Because, as Ellie would say of herself, "God made me special and I'm a princess!"

Yes, my darling, you are.

Movin' On...

2011-04-27T20:47:00.000-06:00

Stones

2011-04-19T17:30:00.002-06:00

So, Richie and I had a hot date over the weekend. He was fabulously self-sacrificing and bought us two tickets to the Steve Bell concert. Steve Bell AND the Winnipeg Symphony Orchestra. Since Richard only listens to AC/DC and Michael Jackson, this was major out-of-comfort-zone steppage for my Yankee Doodle.

It was an amazing concert. Truly. One of the best I’ve ever been to. Even Richie was surprised at how much he enjoyed little ole Christian folk-singer-ish Stevie.

Some of the songs brought me back. I’ve been listening to Steve Bell for a long time. For those who are unfamiliar with his music, he’s a local artist whose voice is pure and lyrics moving. He loves Jesus, and, in my early 20s, I often played a Steve Bell CD when I felt like returning my heart to the cross (because there was a lot of returning to do…sigh).

I got a Steve Bell CD for Christmas in 2000, our first married holiday. I fell in love with the song, “Here by the Water” and the lyrics pierced my lonely heart. Looking back, I realize that I was stupid and naïve, but my pain was real at the time. I was homesick. We had just moved to Dallas, strangers in a city of six million. I was looking for the “perfect” job. I was sad. And, when I heard this song, I thought about the altar I’d build with my homesick stones.

• Here by the Water
Music and Lyric by Jim Croegaert
© 1986 Rough Stones Music

Soft field of clover
Moon shining over the valley
Joining the song of the river
To the great giver of the great good

As it enfolds me
Somehow it holds me together
I realize I’ve been singing
Still it comes ringing
Clearer than clear

And here by the water
I’ll build an altar to praise Him
Out of the stones that I’ve found here
I’ll set them down here
Rough as they are
Knowing You can make them holy
Knowing You can make them holy
Knowing You can make them holy

I think how a yearning
Has kept on returning to move me
Down roads I’d never have chosen
Half the time frozen
Too numb to feel

I know it was stormy
I hope it was for me learning
Blood on the road wasn’t mine though
Someone that I know
Has walked here before

If that 24-year-old girl had known about the stones yet to come, I think she would have slipped into a joy-gripping, never-ending depression.

Five years later, I found that dusty Steve Bell CD and took it with me to the NICU one night. As I rocked Ellie, careful to keep all her tubes in place, this song came onto my playlist. And I was moved. Again.

Here by the water (Medical Center of Lewisville)
I’ll build an altar to praise Him
Out of the stones that I’ve found here
I’ll set them down here
Rough as they are

Oh, my stones were rough, alright: Prematurity, brain bleeds, post-partum pre-eclampsia, medical bills, doubt, questioning, feeling like a failure, not loving my baby, complete fatigue, jealousy.

Knowing You can make them holy

In the deep caves of my heart, I knew. But, I wasn’t sure how. How could God make my stones holy? How could this situation turn out for His glory? How could I go on and sing?

I heard this song again on Saturday.

And I sang.

As it unfolds me, somehow it holds me together
And I realize I’ve been singing

I’ve been singing as I’ve watched that little tube-fed, premature baby grow up to be a lovely little girl. I’ve been singing as I’ve felt God soften and mold my heart to love Ellie just as she is, perfect and precious. I’ve been singing as I’ve asked Him to hold my hand as we walk this bumpy path together.

I think how a yearning
Has kept on returning to move me
Down roads I'd never have chosen

Oh, believe me, this is not the road I would have chosen. Not by a long shot. But, I’m here. I’m doing it. I’m living it. And still singing. The only plausible explanation for my song is that I’m not walking this (un)chosen road alone.

Blood on the road wasn’t mine though
Someone that I know
Has walked here before

Sometimes, as I travel down this road, I feel like the stones are sharp glass and each time my heart steps forward, it is ripped to shreds. The trail is stained with my hurt and tears.

But, the blood? The blood is not mine. Shed FOR me, yes. Mine? No. And the tears? They’re not all mine either. So…

Here by the Water
I’ll build an altar to praise Him
Out of the stones that I’ve found here
I’ll set them down here, rough as they are
KNOWING YOU CAN MAKE THEM HOLY

These sharp stones--self-pity, worry, fear for the future, SDR surgeries, therapy payments, walkers, wheelchairs—they’re all holy. Because I lay them at His feet and build an altar out of them. All of them. So that He can use them and make them holy.

Use ME and make ME holy.

Have I mentioned that I love this song?

Stranger Things Have Happened...Or Have They?

2011-04-17T19:01:00.000-06:00

So, here I am. Sitting on the couch. Ready to blog.

You know what I'd RATHER be doing, though? Trying out my new running shoes.

Yes. You read that correctly. I said that I'd rather be testing out my brand spankin' new, custom-fit sneakers instead of sitting on my a-double-s, writing. Truly, the world must be coming to an end.

Yesterday, with some trepidation, I stepped foot into The Running Room. You know, one of those snobby running stores. Where only fit people go. Skinny, fit people with muscle-y calves. Where people can (and insanely, DO!) spend an entire paycheck on microfiber sweat pants. I was a little bit nervous. A specialty running store is not in my comfort zone. I don't look anything like a runner. I don't feel anything like a runner.

But, after running (and by "running", I mean a mix of jogging-and-walking...wouldn't want you to assume this miracle is that over the top!) EIGHT MILES in 1:50 on Friday, I realized that new running shoes are in order. To the fit-and-swanky salesperson, I said,

"At mile 6, I can start feeling the blisters forming."

HA HA HA! I just replayed that sentence in my head..."At miles 6...." All nonchalantly, as if I've hit "mile 6" many times.

But, I HAVE hit mile 6 a few times now! And I'm hitting mile 6 faster and faster. It's IN-freakin-SANE!

I wonder which band will be playing at mile 6 here:

I'll let you know in December, because, now that I've spent so much money on snobby "real runner's" shoes, I've got to finish the dang thing.

Hmph.

Funding Schmunding

2011-04-10T18:56:00.000-06:00

A new series of books came into the library the other day. “Diseases and Disorders” is the umbrella title. One of the twelve books was called, “Cerebral Palsy”. Of course, my interest was piqued.

I paged through the book and realized how well versed I’ve become on all matters CP-related. For a very non-medical person, I know a lot about brain hemispheres, spasticity, and muscle relaxants. About half-way through the book, I came across this page:

And my heart started turning red with rage.

I realize, of course, that this is a very sensitive subject. I know that many of my readers are parenting autistic children and deal with the similar struggles. I understand that autism is as real as cerebral palsy, and the diagnosis is also life-changing and dream-revising.

But, why are autistic kids offered so much more than those with CP?

Richie and I are so blessed to have jobs, to have family support, to have resources that allow us to pay for Ellie’s therapy. But, today, when I wrote out a $1300 check to the Movement Centre (which will cover us only till June), it stung.

I have heard many of my friends complain about the cost of hockey or dance, swimming or T-ball. “Paying for all these extra-curricular activities is gonna send us to the food bank!” they exclaim, only half-joking.

The joke doesn’t sit well with me. Obviously. We spend more in one MONTH than the average parent dishes out for an entire year of hockey. And the money we’re spending on therapy? It’s not for an “extra curricular activity”. It goes towards the mere hope that maybe Ellie will be able to walk functionally with canes one day. There is nothing “extra curricular” about it.

But, again, I know that we are blessed beyond measure to even have the ability to pay for this therapy. What about the people who DON’T have it? What happens to their child with cerebral palsy?

Well, if they live in Manitoba, they get once-a-week “free” home therapy. If they live in Florida, they get nothing.

What would happen if that same child had autism? Depending on where they live, their child would have access to fully-covered intensive Behavioral Intervention Therapy.

It makes me mad. And sad.

We have seen lives change because of Conductive Education. CP kids who were unable to stand up on their own are able to take steps in a walker after a 4-week camp session at the Movement Centre. It WORKS, it’s EFFECTIVE, it’s LIFE-CHANGING. And it should be covered the same as therapy for autism.

So, who do I vote for in order to see this change? Who’s going to stand up for kids with cerebral palsy?

Richard, maybe it’s time to start thinking about running for both Congress AND Parliament. I’d make an awesome trophy wife.

Jinxed

2011-04-03T18:35:00.000-06:00

My stupid big mouth.

And my stupid big ego.

And my stupid (occasional) "glass is half full" attitude.

I should have known it would would come back to bite me in the arse. Especially if I've publicly proclaimed it on my blog; the ultimate jinx-er.

First of all, I lost. To Richard. Because of flippin' Kansas. It didn't matter that West Virginia, the team that Richard picked to go all the way in the tournament, lost in the second round. Literally ALL of my picks were out by the elite eight, while Richie's second pick (UConn) continued barking their way through the rounds. Cleaning the car out last weekend wasn't so bad, but the van....that's a different story. That's serious elbow grease. Hmph.

And, remember the house sale? The offer on our current place? The one where the "conditions" hardly needed mentioned because it was such a solid deal? Well, our buyers' buyers (so confusing!) were unable to sell their house in time, so the dominoes fell. And now our house is back on on the market, which means that I have to keep making the beds. And we had to get rid of our perfect rental house.

Moral of the story: Only flaunt a victory if it's assured, and next time, get Richard to bake cookies during the open house (which, of course, will induce multiple offers, and keep us from repeating this situation!).

Blame Game

2011-03-22T09:02:00.004-06:00

Stupid Facebook.

I have a love-hate relationship with that blasted social network. Love, because it keeps me connected to people I would otherwise rarely (if ever) keep up with. Hate, because sometimes I inadvertently find people I’d rather have forgotten about.

Oooh, that sounds terrible, doesn’t it?

Primarily, I use Facebook as a youth-stalking tool. I like to keep tabs on my church kids, and these teeny-boppers lurve to barf every detail of their lives onto their profile pages. Thanks to Facebook, I can keep much better track of who’s dating, who’s breaking up, and who’s on the verge of jumping off a bridge.

Every once and a while, I look at the side bar and take note of the people that Facebook is recommending I become friends with.

A few weeks ago, I noticed that an acquaintance from Texas had Facebook-friended my OBGYN. Of course, I was told by the website that I should also become friends with the doctor, as if doing so would fulfill a lifelong dream.

My heart started beating faster when I saw the doctor’s name. I have tried with all my might to push any memories of her, of Ellie’s delivery, of the events leading to my sterility, to the dark recesses of my mind. Back there, in the abyss, the memories are safe. They don’t lead to endless “what if?” questions. They don’t cause me to ask, “why?”. They just sit there, stagnant, minding their own business.

But, seeing her name brought it all back.

I should have closed my laptop and left it at that. I should have just gone straight to the pantry, picked out the greasiest, highest-caloric-content food I could find, and stuffed it in my heart, er, I mean mouth. But, no….

I clicked on her name and was directed to her profile page.

Which was not blocked.

I saw her profile picture. She looked more beautiful than I remembered. And she was holding a baby. And smiling. Not an OBGYN smile, but a Mama-smile.

I read her wall. She had a baby 3 months ago. Macy. I love the name Macy. Who wouldn’t want to share a name with a high-end department store? Macy was perfect. She was born at term. She was hitting her milestones. And there was no word of any uncontrollable-post-partum-bleeding-which-required-sterility-inducing-surgery. Perfect pregnancy. Perfect delivery. Perfect baby. Perfect post-partum-ness. Perfect life.

And it made me mad.

I have never blamed my doctor for Ellie’s brain injury. I don’t think it was her fault. I don’t believe there was any negligence. I don’t think I could win a lawsuit. I want to believe she did everything she could for both Ellie and me.

But, that doesn’t mean I don’t have questions for her.

Why didn’t you tell me that at nearly 7 weeks early, Ellie could actually be born not-breathing? Why didn’t you prepare us?

Why didn’t you try to stop labor?

Why didn’t you give Ellie a dose of Serfactin to give her lungs a boost?

And, of course, the most passionate question; one that I ask of God: Why does SHE get a healthy baby, and I don’t?

The doctor could afford amazing care and therapy for a disabled child. She’d know which specialists to see. She could hire a physiotherapist-nanny. It would make her a better doctor.

Irrational thoughts? Absolutely. I know that. But, I can’t help it. This is what floods through my brain when those hidden memories and feelings are allowed to resurface.

I don’t want to blame. I don’t want to be bitter. I don’t want to be jealous. I know too many mothers of special needs kids who spend countless hours replaying the delivery, asking the “what if’s?”, being consumed by anger. I don’t want to be like that.

And, for the most part, I’m not. For the most part, I am convinced that God has a greater plan for Ellie and that her cerebral palsy just HAPPENED. It’s nobody’s fault. Bad things happen to people. We need to rise above our weaknesses and allow God to use us.

But, every once and a while, I feel jipped. And I want someone to blame.

It’s all your fault, Facebook.

Convos

2011-03-20T18:38:00.000-06:00

It's a sad day when half-marathon training becomes an easier resolution than blogging 52 times in one year! But, alas, I have committed to both, so I will keep keeping on.

Life is busy. My brain is tired. My fingers, like my heart, are sometimes too fatigued to regurgitate my feelings into cyber words.

So, today, you get a Top Five List.

Top Five Conversations From This Past Week

1. "I have chosen you as 6-month tenants for my single family home."
Did I mention that we've *basically* sold our house?! I only add the asterisks because there are conditions on the offer that come off on March 30th. We have no reason to believe that the buyer will have any trouble meeting these conditions, so I'm moving along as if it's sold (famous last words?). Of course, that means we need a place to live while our new house is being built! I was really hoping that we'd be able to find a single family home, rather than an apartment, because wall-and-ceiling-sharing neighbors always scare me (or, more accurately, I don't want to be restricted by THEIR noise regulations, ha!). There was only one neighborhood house advertised for rent and the landlady had more than a dozen rental requests within the first week of advertising. All of the other tenants-in-waiting were willing to sign one-year leases. Yet, for some miraculous reason, the landlady chose US! She said that we "felt like the right fit". Well, hit me with a hot note and watch me bounce, I'll gladly fit into your 4 bedroom, 2 bath air-conditioned rental!

2. "Dear Jesus, please help Grandpa not to fall out of any more trucks..."
Oh, Ellie. My dad fell out of a semi-truck last week, and, as he was saving his face, he broke his wrist. That evening, as Ellie and I were saying her night-time prayers, I suggested that we pray for Grandpa, that his hand would feel better and heal quickly. And, well, this is how Ellie interpreted that suggestion. Funny girl.

3. "And with that, the West Virginia Mountaineers are out of the tournament..."
Oh, I have nothing against West Virginia. In fact, Richard was born there, and many of his extended family still live there. BUT, I was elated when the Mountaineers went down in the second round of the March Madness tourney because Richard picked them as grand champions in his brackets. Bwa ha ha! The bracket-loser is responsible for cleaning BOTH vehicles (inside and out, including Armor All and vacuuming!) AND the winner gets to pick the restaurant and movie. A clean car, sushi restaurant and a chick flick...it's too much happiness!

4."Mommy! Your pants are falling off!"
Guess that's what happens when you do enough of that aforementioned marathon-training!

And, by far, the very best conversation I had this week...

5. Ellie's Occupational Therapist: "I'm a nervous wreck! My daughter is a journalist and now she's in Japan, covering the earthquake."
   Me: "Oh, yes, I once had a dream of foreign correspondence. In fact, I even went to journalism school at Carleton University."
   Ellie's OT: "Really? That's where my daughter went! In fact, I wouldn't be surprised if you were there at the same time---you're probably her age."
   Me: "Oh, yeah, how old is she?"
   Ellie's OT: "28."

TWENTY-EIGHT, people! TWENTY.EIGHT.

Yet Another Reason to Loathe The Conservatives...

2011-03-11T11:40:00.003-06:00

Vic Toews, Member of Parliament
Suite 306, Justice Building House of Commons
Ottawa. Ont. K1A 0A6

March 11, 2011

Dear Mr. Toews,

It is with boiling blood and deep disappointment that I write to you today. I cannot keep quiet any longer, as the leader of your party continues to insult my love of and allegiance to Canada.

One of Mr. Harper’s contemptible Liberal attack ads centers on Mr. Ignatieff’s time in the United States. The ad features quotes from Mr. Ignatieff, as the Liberal leader verbalizes his fondness of the USA. The underlying message of the callous advertisement is that, because Mr. Ignatieff expressed devotion towards the United States, he is no longer a patriotic Canadian.

This message is an insult to my entire family, and I take it personal offense to it. I am one of the most patriotic Canadians in this country, and would, without a doubt, give my life for the Great White North. I also pledge allegiance to the United States, where I lived for nearly ten years. I love BOTH these nations, and I am so grateful for my dual-citizen family.

When I resided in the United States, I was very diligent in my quest to keep abreast of Canadian current events. We flew the flags of both Canada AND the United States from our front porch. I religiously followed both curling AND NCAA football (still do!).

Now that I’m living in Canada again, I take just as much care to stay informed with American current events. We still fly both flags, only this time, they’re covered with snow for half the year.

I truly cannot express the anger I feel at Mr. Harper’s insinuation that a devotion to our southern neighbour diminishes my love for Canada. This attack on my patriotism is infuriating! Perhaps Mr. Harper’s heart is incapable of dual affection, but this is not indicative of other (very loyal) Canadians. So, please stop insulting such a large section of the populace.

I would ask that you pass this message on to Mr. Harper, along with a request to remove the offending commercial from television.

Sincerely,
Chrystie ...

A New Day

2011-03-04T15:00:00.000-06:00

I hate leaving my Grump-a-Dump post up here for too long. Because, really, my pity parties are not worth attending. They are boring and awkward. And all there is to eat are carrots (without dip) and ice cubes (with freezer burn). Not a good time.

But, today is a better day. The sun is shining. I've had 3 cups of perfectly-brewed coffee (if I say so myself), and I've finished my treadmilling for the day (for those of you who are wondering: I'm averaging 15 miles per week, so the resolution is still resolution-ing!). AND! And. There's an unwatched episode of "V" waiting for Richie and me on the DVR tonight. Whoop!

Plus. There's this:

Ellie's first time at Disney On Ice, and she LURVED it. So did I.

Happy Friday, friends!

P.S.

2011-03-01T19:32:00.000-06:00

For those of you who have been patiently waiting for a Vancouver update, I posted it here, on Ellie's blog. It's a good 'er!

Trapped

2011-03-01T19:25:00.002-06:00

It’s March.

And you know how March makes me feel?

TRAPPED.

Trapped by old-fart-of-a-man-winter. Turning the calendar to reveal March induces visions of tulips and jackets-without-liners. But, these dreams are quickly dashed when, like this morning, I walk out the front door and turn into a statue of ice. With the windchill, it was -35 today. MINUS THIRTY-FREAKIN-FIVE. After thawing out in my not-quite-as-cold car, I start asking myself, “Why do I live here?” “Should we move?” “Remember last year, in Florida? Well, it wasn’t like this, that’s for sure.” And these panicked inquisitions make me feel even more…

Trapped.

Trapped by house-building. Things are getting serious now. We’ve got the floor plan to the “almost done” stage. We’ve set up a meeting with the builder. Our lot is just waiting for the first back hoe. And the bank. Oh, the bank. They’re just waiting for our signatures on that trapping piece of paper. The paper that signifies we’re going to be here FOREVER. Because, surely, if we design a house from scratch, “exactly” the way we want it, we’ll have to live there until we graduate to the nursing home, right?

And we can’t move. Because how on earth will we ever find a school system as good as we’ve got up here, in this Frozen Wasteland? Yes, the stellar schools in this small town have me feeling…

Trapped.

Trapped by Ellie’s teachers and therapists and educational assistants. I read enough blogs and message boards to know that the education and help that Ellie receives here is nearly unmatched. While down in Florida, I saw the tears of frustration stream down parent’s faces when they described the impossibility of securing a one-on-one aide for their disabled child. Kids similar in ability to Ellie received one-on-THREE help. Can you imagine Ellie have to share her EA with 2 other equally-challenged kids? But, in order for Ellie to go to school here, we kinda hafta live here. Here, where your schnot freezes and the closest Target is 3 hours away.

And, where else could I find a job I love so much? Yup, I am…

Trapped. Again.

Trapped by my job. The job that brings so much joy, yet requires me to physically report in for 48 weeks of the year. Report in HERE. Not on my lanai in Honolulu. Not on my townhouse deck in Lake Mary, Florida. Not on my brick patio in Lewisville, Texas. Here. Where I can’t even see out my office window because the blasted snow drift is so high, it obstructs my view.

See. I kid you not! The snow drift really IS that high!

And, since March is Ellie’s birthday month, the new calendar page breeds yet another emotion. I feel…

Trapped.

Trapped by my stupid uterus. Ellie will be 6 in a couple of weeks. SIX! I feel like the window is closing. You know, the window that I swore was already long shut…and locked…with the key hidden beneath the monstrous pile of cleared snow off of Route 90. But, every once and a while (like today), the feeling resurfaces. It makes me sad. I still kinda wish that I could give Ellie a sibling. I still kinda wish I could navigate the road of “not-special-needs” parenting. But, it’s so complicated. Long gone is the possibility of saying, “Hey, let’s have a baby!”, and then a couple months later, after peeing on a stick, start the 9-month countdown. I have no control over my reproductive organs. And, lack of control ALWAYS makes me feel trapped. ALWAYS.

To top it off, you know what else makes me feel trapped today?

This blog!

I am, of course, joking (somewhat). But, in all honesty, I was NOT In a mood for writing today. And, given the subject matter in this post, I probably should have saved you all a URL trip and simply posted a pretty picture. But, now you know where my heart is at.

Thankfully, though, I do NOT feel trapped by my grouchy mood. I know this will pass. I know that it’s reedonkulous of me to coat the good things in my life with toxic, freezing waste. What makes me feel trapped today will make me feel blessed tomorrow. I know that.

And, hey, the high for tomorrow is minus ten. With every degree forward, another cell bar breaks.

No Fainting Here

2011-02-23T19:21:00.001-06:00

Crud. I missed my "once a week" resolve. BUT, if I post twice this week, that should still keep me on target for my 52 posts. So, I'm not out! Nope.

And, I have a good excuse. This has been a super-crazy week. Super-super crazy.

Ellie and I went to Vancouver. And when I say "Ellie and I", I mean only Ellie and I. To all the single parents out there, I tip my hat to you. To all the single parents of special needs kids, I throw myself at your feet. While everything went well, and we both came back alive, I have to admit that it was a challenging few days. Pushing a stroller, loaded up with a walker, a kid, 2 backpacks, while pulling a suitcase...not for the faint of heart. Renting a car, getting all the crap in the car, pacifying a very tired 5 year-old, and finding a hotel in a big, unfamiliar city....not for the faint of heart. Packing a bag full of toys, snacks, and all of Ellie's "medical stuff", navigating our way to the hospital, and running with the stroller in the Vancouver rain....not for the faint of heart. Four doctor/therapist appointments in one day, with a girl-with-a-cold....not for the faint of heart.

Good thing my heart isn't faint.

And good thing we had so many people praying for us.

And extra-good thing that all the news we received from the doctors was GREAT. I'll post the deets later this week. Right now, I've got TV to catch up on...

BC Children's Hospital helped me out by supplying lots of toy-entertainment while waiting for all our appointments!

My Valentine

2011-02-15T18:04:00.000-06:00

I am not a mushy person. At all. When I see people gettin’ all lovey-dovey in public, I puke in my mouth. I can still remember “the single days”, when being in the presence of PDA-lovin’ couples made me want to scream and cry, all in one breath.

But, man. Sometimes you just gotta mush on the dude of your life, eh?

I have married THE.BEST.GUY.EVER. And, today, in celebration of Valentine’s Day, I’ll do some cyber lovin’ of Richie-Rich. Because he is THAT worthy.

I think what I love most about Richard is that he just lets me be me. He lets me figure things out at my own pace. He lets me make my stupid mistakes. He lets me dream. He lets me change my (our) plans. He just smiles and nods. And pays my tuition. It’s gotta frustrate him, being the “I’ve known what I’ve wanted to do with my life since I was 18” and “I’ve happily worked at the same company for the past 10 years, and can’t imagine ever switching careers” guy. But, though the eyes of his heart may be rolling, Richard never shows it outwardly. He just lets me do my thing and supports me through every decision.

I also love that we are in this marriage as equal partners. We’ve always been on the same page regarding this and Richard’s ALWAYS treated me as such. (Well, except when it comes to electronics. He doesn’t treat me as his equal then.) We talk things out. We decide things together. I can’t imagine it working any other way.

And, he shovels the driveway. In -40.

He is unparalleled as a dad. Wow. You would be awed. It’s almost too bad that we “only” have one kid, because Richard’s dad skills are so stellar. He is patient. He is gentle. He is fun. He is caring. He is stable. He’s Ellie’s rock. He is PRESENT. Richard is not a dad that’s only involved on Saturday afternoon. He is part of every aspect of Ellie’s life; just as much as I am. (Well, except for clothes-buying. I trump him on that one.) And, you know the aforementioned quality of loving-me-where-I-am? Well, that’s how Richard loves Ellie too. He just loves her because she’s Ellie. He doesn’t worry about the future or the things she can or can’t do. He just loves.

He does really nice stuff for me. Yesterday, when I got into the car after my work-day, there was a rose on my seat. When I started the car, I immediately realized that Richard had downloaded a MP3 of “Chrystie’s favorite tunes” and it was programmed to start with #3: “our song” from when we were dating. I came home to a home-made heart-shaped pizza. Those are nice things. Thoughtful things. Mushy things.

I’m in love. And I don’t care if the cyber world knows it!

The Message

2011-02-08T17:28:00.006-06:00

Sometimes, to add a bit of spice to my spiritual life, I read The Message, instead of my “regular” NIV Bible. A little bit of Message is good for the soul.

For instance, today.

I am starting to stress about the house-selling situation (aren’t you amazed that it’s taken me THIS long to start worrying about it?!). We FINALLY have our new-house floor plan finished, so now my brain has room to panic about the selling of our existing home. I try to tell myself, as I dust every corner, and try to remember to put my bra in a not-so-public place, that the state of my Tupperware drawer is not going to cause someone to pass on buying our house. BUT, deep down, I think, “but, what if? What if one more scrub, one more sweep, one more swipe of Windex, will make the difference?” And, of course, that intensifies the already-overloaded self-induced pressure I feel.

So. I needed some calming today. To The Message I went!

Luke 21:14
“Make up your mind right now not to worry about it!”

I betcha that’s how God’s saying it too. Or, maybe something like this:

“Gee Whiz, Chrystie, get that burning fork out of your ying yang and calm down! I’ve got it all under control!”

It made me laugh. And it relaxed my soul.

So, today, I’m gonna make up my mind to not worry about it. And, in my little brain, there seems to be a lot of “its” to worry about. Thus, I’ve got a lot of mind-making to do.

Amen.

Pulling at Strings

2011-02-01T17:19:00.004-06:00

Sitting.

Thinking.

Daydreaming.

Trying to come up with a blog post.

Not going so well.

It’s Tuesday, and in order to keep up with my 2011 resolution, I MUST blog today. But, my brain is blank. Probably because it’s saturated. I’ve got a lot of things going on these days. Applying to graduate school (you’d think that compiling a “Statement of Purpose” would be easy for a writer like me. Guess-freakin’-again!). House selling. House building. Singing in a church band. Being a youth leader. Trying to see my kid and husband more than an hour each day. Training for a marathon (:-)). Blogging (:-)).

There’s so much going on in my day-to-day life, that it’s hard to come up with a “Deep Thoughts with Chrystie” script.

So, maybe it’s a good day for a Top Five List?

But, geez Louise, that means coming up with a TOPIC for the Top Five List!

Hmmm…

Okay. How’s this for “interesting”:

Top Five Things About My Day So Far:

1) On our way to the Movement Centre this morning, Ellie read me her “Tangled” book. By “read”, I mean “telling me her own version of the story”. Apparently, Rapunzel’s mom was mean and bad because she didn’t go to church. I was laughing so hard that I opted to forego the theological discussion that was most likely warranted.

2) I’ve had 3 college students come up to my office this afternoon, just to say hi. I love that! Best part of my job, hands down.

3) I got to Costco 15 minutes before the doors opened this morning. So, I sat in my warm car and prayed. Prayed for people. Prayed for myself. Prayed that the house would sell. Prayed for wisdom. Prayed for a grateful heart. It was good for my soul.

4) I got into a warm(ish) car this morning, thanks to my Richie-Rich, who parked it in the garage overnight and made sure that Ellie’s stroller, walker and canes were in the trunk for me. Of course, he did this all at 10:00 last night, when the windchill was a balmy -45 degrees. Just so Ellie and I could start our day off without frostbite. That guy’s a keeper.

5) I had REAL cream in my TIMMY’S coffee. I’ve been trying to downgrade to (the much more healthy) milk in my (much less expensive) homemade coffee. But, today, I treated myself to a medium Timmy’s with CREAM, and it was SO, SO good.

Now, if only my graduate school application consisted of a Top Five List…

The Answer

2011-01-25T17:31:00.006-06:00

Hey, what were YOU doing one year ago today?

Me? Oh, I was just having a panic attack.

It was the night before my kid’s surgery and I thought for sure the worry would cause me to puke. While excited about the “after”, a year ago today, all I could think about was the “during”. And that scared me more than words can describe. I was more terrified about Ellie’s SDR surgery than at any time during her NICU stay. Because I hadn’t yet fallen in love with Ellie during that first month of her life. I loved her, yes, but there’s a big difference between loving and BEING IN love.

But, by the afternoon of Ellie’s surgery last year, we knew that she would be okay. The “danger” was over, and she had woken up from her surgical sleep. She wasn’t going to die on the operating table. She wasn’t going to be administered the wrong amount of anesthesia. She wouldn’t suffer a stroke as she woke from her medically-induced sleep. A pair of scissors wouldn’t be left in her back. She was okay.

And we could focus on the recovery, rehab and results.

The real question today is, “One year later, are you satisfied with the results of the SDR? Are you glad you went through with it?”

I have two different answers for two different blogs.

I will post one answer on “Ellie’s Footsteps”, the blog that EVERYONE reads; the blog that’s solely about Ellie; the blog that is relatively happy and surface.

But, on THIS blog, MY blog, MY heart-song, I will be more real.

I do not regret our decision to have Ellie undergo the SDR procedure. I really think that her spasticity (muscle tightness) would be much worse today had the surgery not been performed. We have seen an improvement in a lot of areas (for more details, read Ellie’s Footsteps in the next couple of days….when I get a chance to type my thoughts onto cyber-paper!). Though the week in the hospital was pretty brutal and my heart nearly broke to see her in pain, I think it was worth it overall. I’d do it again.

Where I struggle, however, is answering THIS question:

Were the results of the SDR what you thought or hoped they would be?

Sigh.

I worked feverishly to gel my heart and my head so that my expectations of Ellie post-SDR would be realistic. I told myself over and over again that it would be okay if the “only” outcome of the surgery was reduced spasticity. I tried earnestly to convince myself that it wouldn’t matter if she wasn’t walking with canes by the time we celebrated the “one year surgery anniversary”.

But, deep down, I think I wanted more.

Oh, I hate admitting this, because I don’t want anyone to think that I’m disappointed in Ellie. I desperately want to stay clear of undermining her incredible courage and hard work.

But…

I wanted her to be walking with canes. Everywhere. Easily.

I wanted her to be the miracle.

I wanted her to stand unaided in Dr. Steinbok’s office during our one year follow-up appointment.

I wanted Dr. Steinbok’s face to light up and his jaw drop.

I wanted to be the teary-eyed mom who says, “Thank you for changing our lives!”

I wanted to stay in our house. Because we didn’t have to think about wheelchair or walker accessibility. Just re-do the kitchen and put in hard wood floors. And get a flat screen TV for the bedroom. That’s all.

I didn’t quite get what I wanted. And that makes my heart a bit sad.

I got A.LOT. But, not everything. It’s like winning silver in a hockey tournament. Even though you win a medal, and you’re better than 99% of the other teams in the tourney, you still feel empty because you lost the gold medal game. I wanted the results of the SDR surgery to be gold, not silver.

Of course I realize that it’s “only” been a year since the operation, and Ellie’s improvements will certainly continue for a long time yet. I also know that Ellie can and will live a very full life in a wheelchair or walker. My heart has become surprisingly okay with that.

But, it’s still not what I WANT.

Our one-year follow-up with Dr. Steinbok is scheduled for February 21st. It’ll be interesting to hear his thoughts. I have a feeling that he’ll ask me some of these questions, and I’ve yet to determine how I’ll answer them. Or, maybe he’s dealt enough with parents whose expectations are unrealistic that he won’t even ask about my surgical satisfaction!

Despite some heart-disappointment, though, I DO know this: We could not have done more for Ellie this year. I have no regrets about the amount of therapy she’s received over the past 12 months. I don’t ever question our decision to go down to Florida. There is not a regrettable penny that was spent on rehab. And that makes me feel good.

Really, it all comes down to this; the most important part of this entire post:

I am completely convinced that Ellie has worked as hard as is humanly possible. Sometimes I actually wonder if she goes beyond human strength. She went to therapy for FOUR.HOURS.PER.DAY. for nearly half-a-year. Who does that?! My girl, that’s who! She has not disappointed me. Not once. I am so proud of her, I can hardly stand it.

I suppose it’s BECAUSE of her hard work, BECAUSE of her conquering spirit, BECAUSE of how in-love I am with her, that I had big dreams for this surgery. I wanted more for HER.

And there’s my heart. Again.

I feel like it's been a while since I've posted a pic on this blog, so I'm plugging this one in! Oh, she *is* my heart. Here she is, at therapy, playing Uno. Sweetness.

The GOOD Stuff!

2011-01-18T14:36:00.001-06:00

Ah, it's time to blog again! You all thought I'd forget to pop in this week, didn't you? But, no! I'm squeaking in with my weekly post, bwa ha ha! Take THAT, New Year's Resolution Devil!

I was skimming over my recent posts and realized that I've been Negative Nancy lately. Haven't I? While "being real" is what I'm about, I also realize that sometimes that downer-posts can get old. And, really, there are a lot of great things going on in my life right now.

So, let's "talk" about those things today, shall we?

I lurve my job. Toward the end of Christmas break, I was counting the hours until I could return to work (though, admittedly, the contempt I started feeling towards all FOUR of Ellie's annoying Zhu Zhu pets contributed to my "get me out of this house!" feeling). I love my job so much, in fact, that I'm taking the steps to keep advancing in both knowledge and position. Oh yes. I will (if all goes according to plan and the admissions committee likes me) be a Masters of Library Science grad school student in the fall. I'm excited and nervous in the same breath! I plan on still working full-time and taking one course per semester via distance ed. So, the ole plate will continue to be full. But, I think I can do it. And I think I'll really enjoy it. And, hey, Richard's a pretty decent writer, so if push comes to shove, he can fire off a research paper or two for me.

Ellie is cute. She's starting to tell stories and SING stories and play games. She's cute AND fun. Cute, fun AND funny. I like being around her. I like listening to her make up new card games, which include rules that allow her to win every round. I like watching her play "pretend school", where she's the teacher and Elmo and Cookie Monster are her students. Her language has really taken off in the last year and she can take part in pretty interesting conversations. I am so very thankful for her verbal abilities. I know that so many of my fellow CP moms would give anything to hear their child speak. I never take it for granted.

We put our house up for sale this weekend and we had two showings yesterday! I don't know if anything will come out of them, but it's a good start. I feel surprisingly calm about house-selling. It's those darn blueprints for the new house that are causing me all the stress. BUT, I am thankful that I feel at ease about selling our current house and am hopeful that someone will make an offer soon. It *is* a bit weird, though, to know that strangers are going through your house, opening your closets. I had a slight panic attack yesterday when I realized that I had left 2 of my bras hanging in the bathroom (they were drying on the towel rack). THANKFULLY, I remembered before the showing. Can you imagine?! Especially in this small town, because half the people who will see our house are either relatives or acquaintences. HA!

There are many, many more good things goin' on in my life right now, but those highlights will have to suffice. Because, oh Evil New Year's Resolutions Devil, I have to get on the treadmill now. I've got a marathon to run in December...

Tiny Bubbles

2011-01-11T18:32:00.001-06:00

(Bangs head on table.)

Why? Why? Why?

Why do I keep doing this to myself? By now, I should know that living in a flowery bubble is so much better for my heart. Don’t break the bubble. Don’t venture outside the protective shell. And, certainly, CERTAINLY, stay away from people who carry pins.

You know, like those scary, pin-wielding kindergarteners.

Pop, pop, pop.

EVERY TIME.

I walk into Ellie’s classroom with determination and zeal, ready to conquer. I pray that I will see Ellie catching up to the other kids. I rally my heart, convinced that I’ll be able to handle it this go ‘round.

I lasted about five minutes today. Then, I began fighting the battle against the tears forming in the eyes of my soul.

Every kid was writing their name on the top of the worksheet. Legibly. Every kid was reading the word “the”. Easily. Every kid was counting by tens. Effortlessly. Every kid was cutting out their shapes. Painlessly.

Every kid except mine, that is.

Did Ellie notice that she was the only one not completing the task? I don’t think so. Was Ellie happy tracing the letter-that-she-can’t-yet-recognize in her macaroni? Totally. Why, then, did *I* notice? And, tell me, why wasn’t *I* happy? It doesn’t make any sense, because Ellie’s happiness is always my top priority.

I was in Ellie’s class today because the vision therapist was coming to observe her for the first time. Of course, when one therapist comes, the whole team follows. It’s FANTASTIC that they communicate and that they’re all pulling together for Ellie’s success. But, at one point this afternoon, I looked at the scene in the kindergarten classroom and sighed.

Surrounding Ellie were SIX adults—the EA, the occupational therapist, the speech therapist, the vision therapist, the teacher and the mom. The other kids were seated at their desks, working on their writing skills while my daughter was surrounded by a special needs entourage.

Pop, pop, pop.

Another mom was helping out in the classroom. She noticed that Ellie was starting to get impatient, listening to all the “big people” talk about her. The mom, in a gracious effort, snuck into the circle and gave Ellie a box filled with Mr. Potato Head parts.

My first reaction to this gesture? I wanted to punch the other mom in the face.

Don’t take pity on me! Don’t be so condescending as to think you can shove a box of toys in front of my kid and hide your sympathy! Don’t mask the fact that you look at me and think, “Thank God MY daughter isn’t like THAT!” Don’t try to be friends with me! Don’t try to talk to me! Don’t say that you understand! You DON'T understand! I didn't want it this way! This wasn't the plan! I wanted to be YOU!

Of course, I smiled at the other mom and mouthed “thank you”, while my heart was screaming insults. Completely unwarranted insults.

I hate going to Ellie’s class. There, I said it.

What kind of mom feels that way? And, more importantly, what do I do about it?

Do I force myself to continue my monthly classroom volunteering stint? Or is it okay for me to come up with some sort of excuse that will get me out of it? Do I need to suck it up, because sooner or later, Ellie will pick up on my feelings (which is my nightmare)? Will Ellie think that I'm disappointed in HER?

Is my pretty little bubble unhealthy?

Sigh. It’s been a rough day. Thankfully, tomorrow is Conductive Education day. A day when every kid in Ellie’s class uses a walker. A day when the entourage encapsulates every student. A good day, smack-dab in the middle of the bubble.

Realty Reality

2011-01-07T15:00:00.001-06:00

Living rooms. Bedrooms. Bathrooms. Kitchens. Floor plans. Square feet.

My head is swimming with house stuff. Thankfully, that’s a figurative statement, because the LAST thing I need right now is brain matter on my clean walls.

We are selling our house AND building a new house.

“That’s so exciting!” I’ve heard people say.

You’d think so. But, I don’t feel that way at all. Instead, I feel overwhelmed and even a bit sad. And, I’m trying to figure out why. Normally, I would dance gleefully in the studio of anticipation and planning. That’s what I do. I plan. I dream. I figure.

But, my heart is singing monotone.

First, it’s a lot of work. For someone who tries to avoid physical labor as much as possible, this is a definite down-side. We’ve lived in our current house for 4 years and it’s embarrassing how much stuff we’ve acquired in that time. I’m not even a pack rat! We have one kid, but you’d think we were the Duggars by the amount of toys we’ve got strewn around the house.

Organizing all our STUFF makes me feel materialistically gluttonous. Honestly, it gives me nausea. So much money wasted on crap.

Second, I’m anxious. I want our house to sell for a decent price. I want it to sell fast, yet I’m also nervous about the interim. I kinda doubt that the buyer will give us a 7-month closing date. So, we’ll have to find temporary housing, and that’s always a bit of a challenge in a small town and when you require a place without stairs. BUT. We’ve been in this exact spot before, and it worked out beautifully. Experience, in this case, is comfort.

Third, coming up with the perfect floorplan for the new house is completely overwhelming. I thought this would be the fun part. But, it’s a thief of sleep and sanity. I feel so indecisive. I can’t wait till we have that final blue print. Cuz, you know, then I get to worry about picking out all the “inside stuff”….

Fourth, and probably the biggest joy-stealer, is contemplating on the reason WHY we’re doing all of this. We need a wheelchair accessible house. Not because Richard and I are getting old. Not because Grandma is moving in with us. But, because our 5-year-old daughter can’t walk. Sigh.

I’ve known for a while now that this day would come. It’s not like I’ve had some sort of pipe dream that Ellie would be able to navigate stairs by the time she hit school. But, every time these moments arrive, even if expected, they hurt. I didn’t want it this way. I didn’t want it to be this way for ELLIE.

It’s difficult for me to not backspace this post because I realize that my complaints are completely hollow. We are beyond blessed to have the means to build an accessible house for Ellie. So many parents of physically challenged kids can’t even entertain this option. I know that. I so know that.

And I am very grateful for this opportunity.

But, man, I’d take a 500 square foot fourth-floor walk-up apartment in a second if it meant that Ellie could navigate those stairs.

And, sometimes, I just need to blog-vent. And then move on.

The thing that excites me most about the new house is Ellie’s bathroom. Oh, I can hardly wait to start working on complete bathroom independence; something we can’t do until we have a restroom that’s big enough for her to navigate in/out of with her walker.

And, a fridge with an ice water tap. That excites me too. HA!

I'll leave you with a picture. It's mostly unrelated to this post, but it's been a while since I've posted a pic. You can, however, see the outside of our current house. Anyone want to buy it? We'll even throw in the Bama flag if you want!

Not-So-Resolute Resolutions

2011-01-01T11:30:00.003-06:00

So, here we are. 2011. Yikes!

Goodbye 2010. You go down as being one of the best AND worst years of my life.

January 27, 2010. Without hesitation, the worst night ever. The memory of that night still haunts me. I have nightmares reliving it; I hear Ellie cry for me, pleading with me to make her back feel better. Watching helplessly as your child is overcome with pain is too terrible for words. I never want to be in that place again.

February 4-June 1, 2010. Wonderful months. Just the three of us. No responsibilities. No commitments. No bills. Just warmth and water and catching our breath. It was a fantastic winter. The best one ever. If I had the funds, and I didn't give a rat's petunia about school, snow-birding would be the lifestyle for me!

I could spend a lot of time looking back at 2010, as it was one of the more eventful years, but I'd like to look forward today. Reminiscing can be great for the soul, but planning and dreaming can be even better.

I'm not a big New Year's Resolutions girl. I haven't made any for a few years. It's quite rewarding to say, "I didn't screw up on my resolutions this year!" Setting the bar low (or, eliminating the bar all together) means less disappointment and self-loathing come the 3rd week of January. Realist? Yup, that's me.

But, for some reason, this year feels different. Last year, everything revolved around THE SURGERY. Get through the surgery, get through the rehab, get through the start of kindergarten. Just get through. Coming out of 2010 sane and relatively happy is a huge accomplishment.

But, I'm ready to up the ante. I want 2011 to be about more than getting through. *I* want to do more than simply get through. I mother a little girl who sets the bar VERY, VERY HIGH. She does so much more than survive every day. She is my inspiration.

So, with some fear and trepidation, I publicly proclaim my Resolutions for 2011. I'm not hitching a ride on the lofty train; I need to have half a chance of accomplishing these things. Cut me some slack!

1. Blog here at least once-a-week. 52 posts for 2011. Given my 2010 slackerness, this is a hardcore resolution!

2. Read my Bible at least 5 times per week. Man, I have let this slide and it sucks. I know that this will be the bridge between "getting through" and "thriving in" 2011.

3. Make Ellie walk with canes at least once every day. This is an admission of my bad mom-ness. She should be doing this already. I know, I know. It's hard though. She hates it. She cries. She whines. She tries to strike deals ("I'll walk with canes after school..." And, of course, by the time we're all home from work and school, we're all too tired to fight that battle. That little stinker is a smart one!). Making Ellie walk down the hall to the kitchen every morning requires waking up 10 minutes earlier. The difference between 6:50am and 7:00am is MONSTROUS. I also allow myself to split this one with Big R.

4. This is by far the most coo-coo-foo-foo, *this* close to being the most completely unattainable resolution I've ever set. It seems reedonkulous to even put it out there for all to see (ie: for all to make fun of me when I don't complete it), but I've already committed to the BFFs, so the damage is done. December 4th, 2011. 13 miles. Las Vegas strip. ON FOOT. With 4 BFFs and 1 husband. Man, if I can accomplish this goal, then everyone's belief in miracles will be reinforced.

5. Who am I kidding? Four resolutions is MORE than enough!

So, friends, I'm counting on you to keep me accountable. Think I can do it? I dunno. But, today, I feel like giving it a try.

HAPPY NEW YEAR!

Hi Ho, Hi Ho...

2010-09-21T17:48:00.002-06:00

WOHM.

For those who are “Online Mommy Bulletin Board” savvy like me, you’ll know what that acronym stands for.

Work Outside (the) Home Mom.

You’ll also know that there are very different opinions as to the validity of being a WOHM. Yikes. You want to start a heated discussion on Babycenter.com? Entitle it, “What’s best for my family—if I work outside the house or if I stay at home? ” We’re talking FIRE.

Me? My opinion has always been that YOU need to decide what’s best for YOUR family. Once you’ve made that decision, go with it, be happy with it, and don’t expect anyone else to make the exact same choice. Because every family is different and at the end of the day, I only come home to MY kid(s) and husband (singular :-)).

Certain people, I’ve come to realize, believe, for some (what I consider to be CUH-RAZY) reason, that God has already made that decision for my family and that as a Christian wife and mother, I need to stay home and tend to the hubs and chillin’. Reedonkulous, I say. And if anyone wants to get into an argument with me about it, I’m open. In fact, I’ve got my mouth or pen & paper ready. I’ve been known to write a letter or two to the editor of a Christian publication regarding this topic.

I have always wanted a career. Sure, it’s taken me 15 years to decide WHAT that career looks like, but deep down, I’ve always known that I would work outside the home while raising my kid. There was a six-month period of time, during the last half of my (short) pregnancy and the beginning of Ellie’s life, when I thought that staying at home with her was the best choice. I was so tired. SO TIRED. And my brain, in its mushy state, could hardly tell left from right; formula from coffee cream; diaper from sanitary napkin. I was literally incapable of working outside my four walls.

But, with a little Zoloft, a lot of sleep and regulated hormones, that period (pun intended) of my life passed quickly and by the time Ellie was smiling, I was DESPERATE to return to work.

I returned to my job when Ellie was 4 months old. Although the decision to return to work wasn’t a difficult one, contemplating Ellie’s care was excruciating. Ellie had so many special needs as a preemie baby, and a large daycare was out of the question because of her underdeveloped lungs and susceptibility to colds-which-could-easily-turn-into-pneumonia. So, we hired a nanny. A wonderful, caring, sweet, gentle, loving nanny. Pretty much every penny of my paycheck went to pay Carlin. And it was SO worth it.

Being back at work gave me perspective again. I was happier there. I felt fulfilled there. I no longer felt raging jealousy towards Richard, who “got” to leave the house for 8 hours every day.

The best part of it all was that ELLIE was happy. Carlin was so great with Ellie (when she was actually awake—those were the “good ole 3-naps-per-day” times), and she became another member of our family. I truly believe that Ellie could sense MY happiness, and therefore, she was more contented. It was a smiley sort of sunshiny cycle.

‘Course, those were also the days when I thought that Ellie would grow out of her preemie issues and life would continue as “planned”. There would be no physical therapy appointments. We would have no need for a physiatrist, an orthopedist, a neurosurgeon, an orthopedic surgeon, a neurologist, an ophthalmologist, a developmental pediatrician, a gastroenterologist. Nope. Just an annual visit to the “regular” pediatrician.

When Ellie was diagnosed with CP and the reality of how our lives were going to change actually started to sink in, I began questioning my ability to build a career. How would I be able to hold down a job while ensuring Ellie received the best therapy and medical attention? Not only was I grieving for Ellie and the struggles she was going to face during her lifetime, but I was also selfishly mourning the loss of a career for ME. It was profound. Selfish, sure, but incredibly real and painful.

But, as is the case for all things in my life, God was shining down and He knew there were better days ahead. I truly believe that He created me with the desire for a career and has opened doors throughout my life path, ensuring opportunity to attend to that passion.

When we first moved Up North, I spent a LONG time looking for the perfect job. (I was going to surround the word perfect with quotation marks, as if to mock the possibility of a perfect job existing. But, I stopped myself because, honestly, my current job is THAT perfect.) I job-searched for an entire year, in fact. I was unmoving in my request for Tuesday mornings off (so that I could bring Ellie to her conductive education class). I demanded my employer be flexible in regards to doctor’s appointments. It was a tall order. God led me to my current job, my current position, my current employer, where my requests were met with high-fives and smiles.

God also led me to the perfect child care provider for Ellie. And Ellie has thrived there. I worry about Ellie being an only child, and her lack of “kiddie socialization”, but she has made sweet, sweet friends at daycare and has been loved on in ways I cannot describe.

God knew. He knew when He created me. He knew when He created Ellie. He knew when He formed a family between Richard and me. I am living in His will BECAUSE I am a WOHM.

Just as those of you who are SAHMs (hopefully) feel you’ve made the right choice for YOUR family, and that you’re living in God’s will for YOUR life.

Sometimes (bold, and often rude) people ask me if I work for the money. The answer? A little. My salary is a reflection of my talent and hard work. If my employer paid me something below what I thought I was worth, it would leave me feeling inadequate and insecure. So, of course I work for the money. Additionally, I work so that we can afford the very best care for Ellie. Also (and here’s where the controversy begins), I work because I like to have nice stuff and do fun things. If I’m going to, guilt-free, pay for Ellie’s Matilda Jane outfits or my (totally overprice, but worth every penny) cut, color & highlights, then I’ve gotta work. I’m happy to admit it!

Mostly, though, I work because of how it makes me feel. I feel smart and accomplished. I feel energized and fulfilled. I hope that every SAHM (or dad!) feels the same way doing THEIR work every day!

What brought on this post, you ask?

A stupid radio program I listened to in the car at lunchtime, while picking Ellie up from daycare and dropping her off at school (I didn’t say that being a WOHM is EASY…). I was just minding my own business, trying find a nice praise & worship song on the Christian radio station, when blasted Focus on the Family has to fire me up AGAIN.

I hate Focus on the Family. I really do. First, because I tend to hate all things that Sarah Palin likes. Second, because they perpetuate this idea that God has somehow called all women to stay at home and take care of their families. The speaker of the today’s program was telling the radio audience that families need to make the financial sacrifice in order to ensure that one parent is home with the kids, and tending to the house.

Reedonkulous.

What about the SANITY sacrifice? The SELF-WORTH sacrifice? The HAPPINESS sacrifice? For some families, like mine, it has nothing (or, at least, very little) to do with the financial sacrifice.

So, there ya have it. My two cents worth on that topic.

Wow, it’s good to be blogging again!

Happy

2010-09-11T22:00:00.001-06:00

You know what makes me happy?

FOOTBALL.

Real, Made In America, 4-down football. I can't even tell you how my heart fluttered this morning when I was searching the internet for our local TV Guide. I was going to check to see which games were televised (and, since we don't have a US satellite dish, our stupid Canadian channels carry very few American college football games). I knew that blasted Notre Dame would be on...AGAIN. But, I was hoping that, besides THE.GAME. tonight, there'd be another goodie on in the afternoon. That's when, to my amazement, I realized that ESPN's College Gameday was going to be carried on a station we get. Oh my! Truly. It's like a banquet AND a dance! Not only is the Alabama game being shown (in HD to boot!), but now we get College Gameday for 2 hours in the morning?!

Heaven.

It was the first time all week that I felt complete joy.

Not the joy that's immediately tempered by heartache. Like the joy I felt when I saw Ellie in her freakin' adorable first-day-of-school outfit, which was instantly covered over by the realization that her sleeves were a bit too long and they were catching her hands on the walker. Her walker. The thing that everyone notices before they can breathe in the beauty of who's USING the walker.

Like the joy I felt when I was greeted by the sweet, familiar faces of students returning to school (I'm a college librarian, in case you weren't aware); the "kids" who skipped up the library stairs just so they could say hi to ME! The joy that was quickly replaced by feelings of stress and panic when I realized how much I still had to do in order to be ready for classes.

Like the joy that boosted my soul when the crisp fall air hit my face on Monday morning. The glee of knowing that within a few weeks, I wouldn't have to think about pulling weeds or trimming hedges or taking out bloody perennial gardens. The joy that was tempered by the knowledge that -40 degrees is also on its way.

Sometimes, it's nice to feel complete, full-on, all-consuming happiness.

I'm just a little worried that it takes football, something that, in the whole swing of things, is pretty insignificant (though it pains me to admit it), to feel that pure bliss.

Ha! I suppose by feeling guilty for my football ecstacy, I'm cutting into that joy and actually tempering it. Can you say "Self Destructive"?

I guess what I'm trying to convey in this relatively useless post (but, hey, at least it's a POST!) is that I wish I could revel in such joy for the "big" things too. I wish I could float around in the happiness a bit longer during the situations that really count.

I wish I could revise the dream without remembering the first draft. That's all.

Just had to get ONE "Bama Cheerleader" pic in here. This one's from 2007, when Ellie was two.

Just Sayin'...

2010-09-08T18:56:00.000-06:00

I’m here. I think.

It is obviously too great a task for me to keep two blogs updated. It sucks, because I probably need this blog. It’s great therapy for me. And I should be writing more.

But, I’m tired.

I’m not sure when I got old and tired, but it happened. My brain can only regurgitate so much onto cyber paper. My heart can only expand to a certain degree.

And I worry. About Ellie. What happens when she reads this blog? Do you think I’m revealing too much of my heart? Do you think she’d feel as though I’m disappointed in her? Because, wow, that would wreck me.

But, I have so much to say. Always. SO MUCH to say.

I wonder if I should elaborate on things like…

…How I’m bothered that Ellie doesn’t seem to even care that she’s different from the other kids. The kids she's starting KINDERGARTEN with. Of course, I’m thankful that she’s not phased by it, but I’m also worried that she’s emotionally behind her peers.

…How we’re thinking about building a new house; one that’s entirely wheelchair accessible. But, my heart is hesitant. I don’t want to think of Ellie in a wheelchair. I don’t want to have to do any sort of landscaping. I don’t want to be committed to staying here, in small-town Canada, forever. But, man, if Ellie falls down the stair in our sunken living room one more time, I think we’ll all scream!

…How difficult it is for me to talk to other parents (mostly mothers) about their typically-developing children. Will I EVER be able to converse with my girlfriends and feel full, unabashed happiness for them? I can’t yet. I want to, but I can’t. I hate that about myself.

…How tempted I am to fly to Ottawa and lobby on Capital Hill in support of the long gun registry. The thought of the dictator-led Conservative party overturning the long gun registry makes me want to cry. I love that Canada (up until this point) has supported gun control. I love that, as a result, firearm violence in my Home and Native land pales in comparison to that of the United States. Why, oh why, would we want to dink around with that?

…How I’m fairly certain that unless there is Omnipotent intervention (which is surely possible!), Richard and I have decided that our family will remain fixed at three members. There are days when my heart pangs at the thought of adoption. I really would love to cross the ocean and pick up a baby or two. But, our resources, both time and money, are limited. We want to send Ellie to therapy classes. We want Ellie to have the best equipment. We want to take Ellie on trips. We want a wheelchair accessible house. I love my job and I want to work full-time (wouldn’t 2-3 kids require more “at home” time?! Certainly!). I want to sleep. All reasons why we’ve decided not to adopt. Still hurts my heart a bit though.

...How I really wish Ellie could wear cute shoes. I almost cried today when I got an email from the Gap, informing me that all girls' knit boots were on sale. I want Ellie to wear knit boots. I want Ellie to wear Mary Janes. I want Ellie to wear flip flops. These shoes would go so perfectly with her Matilda Jane outfit. You know, the way-overpriced duds I bought for her because deep down, I feel that if she's over-the-top dressed, people will overlook the fact that she's in a walker. Yup. It's all about the shoes.

But. If I write more about these topics, will people judge me? Will you think I'm a bad mom? Will you think I'm a bad Christian?

Sigh.

I need some chocolate.

Home

2010-06-08T20:28:00.002-06:00

We made it!

The drive was long, and the van was PACKED, but everything went really well on the road. Gotta love those audio books...

It's like a bad scene from "Where's ~~Waldo~~ Ellie?"

Home.

I think we're still trying to mesh our heads and hearts with geography, but, with each reunion and unpacked box, life feels more settled. When driving home from therapy today, Ellie asked, "Are we going back to our Florida house or Canada house?" We're all reconfiguring our compasses.

Speaking of therapy...Ellie has been having a grand ole time, showing off all those new skills for her therapists and conductors! And I'VE been having a great time hearing the "oooh"s and "awww"s. Perhaps our therapists are indulgent, but it's still heartwarming.

We are adding things to the "return or get rid of pile"! Specialized toilet seat (she can sit on the potty solo now!). First Kaye Walker (she's grown out of it!). Fisher Price booster seat (no booster seats needed anymore!). All things that we were using before the surgery....but not now! Whoop!

This past week of transition and travel has been exhausting for all of us, so I'll leave you with this brief update and try to mimic Ellie:

Love y'all!

Fab Five Friday

2010-05-21T07:07:00.000-06:00

I'm feeling a little blue about leaving Florida in 10 days. It's hard to explain. I am VERY excited to see our faboo friends and fam back home, but my gut feels conflicted. We have had a really great 4 months down here and it's amazing how fast your head and heart can turn a place into "home". My emotions are all over the place. Unfortunately, I don't have time to articulate today.

So, instead, I will make a (quickee) Friday's Fab Five list. A list of things that make me really want to go home. NOW.

Things I Miss About HOME:

1) Babysitters. It's been a while since Big R and I have been able to go clubbing on the town. I miss being able to hang out as adults. I miss being able to pick up the phone to dial the memorized numbers of one of our precious sitters and beg them to play with Ellie for a few hours so that Richard and I can go out. I also REALLY miss my daycare provider. Of course, I miss the ability to let HER deal with Ellie's "unacceptable attitudes", but I also really miss chit-chatting on her doorstep every day. She's a very cheap therapist!

2) My "Kids". Richie and I are high school youth leaders in our church and we are madly in love with those monsters. Every Thursday night, my heart cries a little bit, knowing that they're all together without us. Those crazies bring me MUCH joy.

3) Canadian News. I know I could log onto the CBC's website every day and familiarize myself with Canuck Happenings, but it's so much easier to just turn on the TV and watch it. I miss me some Pedro at 10pm.

4) Sobey's bread. I haven't found a good bakery down here yet (Einstein's Bagels notwithstanding...they don't sell actual bread), so I've succumbed to buying pre-packaged Nature's Own Honey Wheat, which is CRAP compared to a fresh loaf of Sobey's light white. With mom's homemade rhubarb jam. Oh my. I'm salivating.

5) My job. Admittedly, it has been nice to have some time off. I could get used to sleeping in. I could get used to going to the pool every morning. Heck, I'm even reading A. LOT. But, I don't feel the same sort of satisfaction as after a long, hard (and maybe even productive) day at work. I miss conversations with co-workers. I sorely miss the students. I miss Richard doing half the housework because we're BOTH working outside-the-home jobs!

Good things await me in 2 weeks. Yup. Good things.

PS: There are so many PEOPLE I miss, to the point of heartache, but it would simply take too much time to list them all. So, to my family and friends who weren't mentioned in my list, it's not for lack fo missing-ness that you were absent!

The Nature of Things

2010-05-13T20:07:00.000-06:00

I am not a nature freak. I'm not even a nature lover. In fact, I shamefully border on being a nature ~~hater~~ dis-liker.

If I had to make a "Horrible Ways to Spend My Saturday" list, it would definitely include:

Hiking.

Gardening.

"Real" Camping (doin' the whole tent thing).

Going to the zoo (which combines TWO of my least favorite things: nature and animals).

Etc, etc.

Here in Florida, we've been shacking up in a beeooteeful townhouse. The interior is awesome, but the grounds are equally as stunning. I often go out on the balcony in the evening to breathe in the warm air and take in some of the landscaping loveliness. The best part is that my sole responsibility is enjoyment. No mowing. No trimming. No planting. No weeding. And when it's nauseatingly hot outside, I can open my curtains and enjoy the gardeners' hard work from my air conditioned vantage point.

Believe me, I am not looking forward to the yard work that awaits me back in Canada. Hmph.

Every once and a while, though, I surprise myself. Sometimes, I succumb to the beauty of God's creation and actually enjoy taking in the "little things". The BIG things are a give-in. Even nature-dislikers are awestruck by the BIG things. When in Vancouver, I often found myself staring out Ellie's hospital window. The view of the Rocky Mountains was truly breathtaking. Every time we go to the ocean, I have to stand at the shore for a few minutes and simply marvel at the waves. More than once, the northern lights have caused me to stop the car at the side of the road. Rockies, Atlantic Ocean, Northern Lights...BIG things.

But, I actually have it in me to marvel at the little things too.

Things like the duck who made a nest right by the pool.

The duck who laid eggs in the nest she built by the pool.

Things like the crane/big bird-thingamajig that I saw in Macy's parking lot the other day.

Things like the purple tree.

Things like the cute little white church on 436. The church I drive past every day on our way to therapy. The church that sits quietly and unassumingly in between Florida Hospital and Costco. The church surrounded by tropical, mossy trees. The church with red doors. The church that steals my breath every time I drive by it.

Mmm. These are things that have made my heart smile.

Maybe, then, it's not that I dislike nature; I just dislike working in and with it...

Wish You Were Here...

2010-05-13T19:12:00.000-06:00

Oh blog. Sweet, sweet blog. I'm so sorry for neglecting you.

You are missed. You are needed. You are my therapy and there have been so many times I've wanted to spew through you. But, sometimes it's difficult to connect my tired brain to my cyber mouth.

Forgive me.

Vain

2010-04-12T09:21:00.001-06:00

It's Monday. I started out the day on the sad side of the bed. Feeling discouraged about Ellie's progress. That kind of stuff. I perked up a bit when I posted on Ellie's Footsteps. But, then, I REALLY started feeling better when I examined the pictures for that blog. Look at ME! I am a tanned wonder! For once, the Mommy-sacrifices I make have actually resulted in selfish gratification. We are at the pool EVERY.DAY. No joke. Do I like swimming? No. Do I like swimming in freezing cold water? Extra no. But, I do it. Because Ellie LURVES it. And, after seeing this picture, maybe I'll do it more willingly now too (especially as the water warms up!). It's the best tan I've had in TEN YEARS!

This One's For Ellie (And All the Other Kids Who Have "Pre-Existing Conditions")

2010-03-22T16:59:00.001-06:00

There are so many things I want to say about this Health Care Reform Bill.

First, of course, is "Thank You, Jesus!"

But, today it'll have to end with that, because:

a) I'm tired.
b) I'm going out ON A DATE with the fellow democrat in the house (though he still maintains he's an independent, silly boy) in 15 minutes
c) John H. Richardson said it all for me in the following article:

(I am expecting that only my sweet Peitricia Mae will actually read this article in its entirety, so this one's for you, my dear! Though, who knows, if I have any blog readers left, they might surprise me!)

The Next Questions We Should Be Asking About Health Care

By John H. Richardson

"We proved that this government — a government of the people and by the people — still works for the people," Obama declared after the vote. But does it?

It's done. What Teddy Roosevelt couldn't do, what FDR couldn't do, what Truman couldn't do, what Johnson couldn't do, what Clinton couldn't do, Barack Obama has done. The health care reform bill has passed.

No longer can you be kicked off your plan for the crime of getting sick. If you lose your job, no longer must you live in fear of losing your insurance when the COBRA runs out. If you get cancer, no longer can your insurance company pour over the records and cancel your policy because you failed to disclose your childhood acne.

Now, finally, facts will intervene. Is health care reform really the end of America, as so many Republicans have so feverishly warned? Is the economy really going to collapse? Are we suddenly going to start frog-marching in mass formations past our Dear Leader? Is the government really going to start funding abortions? Or was Obama just flat-out lying when he signed, at the last minute, that executive order promising Bart Stupak and the abortion-hating Democrats that the government would do no such thing?

No longer must you fear the worst. Just walk outside and see if the sky is falling.

One thing, however, is clear already: In the middle of a severe economic slump, despite all the hand-wringing and whining, Barack Obama and Nancy Pelosi and the Democrats kicked ass. Now they've got the Big Mo to reform the financial system, start paying down the deficit, reform immigration, and fix the global warming problem. The future is at hand. That hopey-changey thing is working out just fine, thank you. And you can measure it in the relentless attacks that are certain to come, because trashing health care before it goes into effect is the only weapon Obama's enemies have left.

Another thing is very clear: Every single Republican voted against reform. Their record is now 3-0. This party fought against Social Security right up until George Bush gave up its last attempt to "privatize" reform into more profits for the geniuses of Wall Street. This party fought against Medicare right up to the day Bush packed it with another trillion dollars or so in unfunded mandates. (And excuse me if I indulge in the conspiratorial suspicion that the GOP's real motive was to bankrupt Medicare so they could drown it in that government-killing bathtub they're always going on about.) Then, for the last year, this party fought against universal health care so feverishly that, by the end, the Republicans actually had the chutzpah to attack the Democrats for funding reform out of existing revenues. That's right: When the Democrats did the responsible thing and moved money around within the federal budget, paying for reform without adding a penny to the deficit, the Republican Party suddenly started crying crocodile tears for Medicare.

We knew this day was coming — I was confident health care reform would go down like this from the beginning, and never wavered — but can't we just move on now? There are certainly legitimate reasons to be concerned about the cost of reform and many specific details of the plan, and Republicans always have some useful constructive criticisms to offer — which is exactly why two hundred of their ideas made it into the bill. And I really don't want to play the anger game anymore. On the left-leaning Web sites, I see people fixating on the crazies who called Barney Frank a fag and John Lewis a nigger. Or the unknown boor who yelled "baby killer!" at Bart Stupak. Or David Nunes, the congressman who got quoted so enthusiastically because he was saying the silliest things — that the Democrats were practicing "totalitarianism" and building their "Socialist utopia on the backs of the American people." Can we just posit that these folks are flakes of the fringe? Can we just start focusing on the statesmen and the grownups?

I'm not being facetious. I correspond with a lot of angry conservatives, including many members of the Tea Party. Over and over, I find that if you correspond with respect, the nasty argument turns into a dialogue. Not always, but often. And there are still some statesmen in the Republican Party, as the bipartisan vote to pass the bailout showed, even if they have been very quiet of late.

Last week, I spent two days sitting in the Senate gallery watching the debate over the FAA reauthorization bill, and I was surprised to see Jim DeMint teaming up with Democrats like Byron Dorgan and Kirsten Gillibrand in a statesman-like effort to do the people's business. Outside the spotlight, even in the middle of the war over health care, sanity prevailed — and not one single news reporter anywhere in America bothered to mention it. So it would be really nice if we could get past all the hysteria and let health care reform speak for itself. If it really turns out that it sucks as bad as the Republicans said it would, then the Democrats will pay the price because of actual facts and not overheated political rhetoric.

But first, allow me vent on David Nunes a bit more. Just before the vote, I heard him tell Sean Hannity that the reform is the work of "crazy leftists from the 1960s, from Hollywood and San Francisco." C'mon, man. Criticize all you want, but let's be adults. The AARP is full of crazy leftists? Those fifty-nine thousand nuns are crazy leftists? The American Medical Association?

Then there was the guy on CNBC who predicted that one-hundred million Americans could lose their health insurance.

And then there were all the people who denounced the bill as a stinking compromise tainted by backroom deals. Has everyone in the Republican Party forgotten that stinking compromise is what democracy is all about? We hear a lot these days about how great the Founding Fathers were, for example: They were so inspired when they wrote the Constitution that many people believe we should follow it literally. Okay, let's do that.

Remember the Three-Fifths Compromise? Talk about an ugly deal! The Southern states wanted to count the slaves so they could get more congressmen. The Northern states said that was unfair because the slaves couldn't vote. The Southern states said. Fine, have fun with your tiny little seaside nation. So, in order to get the Constitution passed, the Northern states made a deal as dirty as it is possible to make — not only did they sell out their principles, they sold out human beings. But did that dirty compromise doom the country?

Another thing we know for sure: Despite the apocalyptic warnings, nobody really expects the markets to crash. The first hints of the direct economic impact of health care legislation that is supposed to doom the capitalist system was... a jump in stock prices. In fact, most economists expect the economy to continue to improve. Even on CNBC, where it has become gospel that government spending always depresses markets — and never mind the boost to business growth caused by the interstate highway system, or the government bureaucrats who invented the Internet — they said the economy would still be improving six months from now... but maybe (grumble grumble) improving more slowly.

Well, if the economy improves more slowly but thirty-one million new people are insured and the rest of us don't have to worry about losing our insurance if our luck or health turns bad, I think most Americans would take that deal.

But now, I have to vent a little bit more. When John Boehner said that the institution of Congress was broken and the process is broken, I couldn't help yelling at the television: Didn't we elect these people? Didn't they vote? Isn't that how the process is supposed to work? And when Boehner said the Democrats were "moving against the people's will" — I'm not conceding this is true, since the polls reflect the heat of the battle and most people do support the actual provisions of the bill — but didn't George Bush used to brag about not listening to polls? Wasn't that a major Republican talking point for years? Now they think we should give up the whole representative democracy thing and run the country by majority rule? And his line about it not being too late "to restore comity to this institution?" Really, John? Is that why you were yelling and turning red?

Another thing we know for sure: The people who say this reform will be a disaster are the same people who said that taking action during the economic crash would be a disaster. Remember that? The market fundamentalists and Fox News hosts wanted to roll the dice and let the market fix itself by "finding its bottom." They were ready to kiss the car companies and the stock market and their asses goodbye because that's what the invisible hand of capitalism wanted them to do, and free men always obey the market. But George Bush and Barack Obama and a bipartisan majority of Republicans and Democrats decided to try to stop the collapse instead. And lo, the collapse stopped. And growth is returning much faster than anyone expected — 5.7 points last quarter.

Now those same people say reform — health care, climate change, or otherwise — will also be a disaster for the Democrats. In fact, they've been touchingly generous with their political advice, as when Boehner expressed his concern about Nancy Pelosi's political judgment: "So you pass a very unpopular bill. You shove it down the throats of the American people and you lose your majority. How good is that? How smart is that?"

They seem to have forgotten William Kristol's famous 1993 memo saying that if Bill Clinton passed health care reform, it would be "enormously healthy" for the Democrats, reviving their reputation and striking "a punishing blow" to the Republicans? And oddly, so has just about every news host on every TV channel, even CNN. Now that reform has passed, the horse-race story line has become HOW BAD WILL IT BE FOR THE DEMOCRATS? Without a blink, my colleagues in the mainstream media went from WHY CAN'T OBAMA ACCOMPLISH ANYTHING? to WHAT TERRIBLE CONSEQUENCES WILL HIS HISTORIC ACCOMPLISHMENTS HAVE? And with so much at stake, it's only going to get uglier.

Only now there are thirty-one million people to remind them.

Another March

2010-03-14T19:35:00.000-06:00

You know what time it is.

Someone has a birthday tomorrow. Someone will be FIVE.YEARS.OLD.

And that someone's mom always struggles with the memories of March 15, 2005.

BUT.

This year seems to be better. I don't know if it's a result of being so preoccupied with "Florida Post-Op Life" or if time has befriended my heart. Either way, I'll take it.

Oh, I've still had my moments this week. For a second, I get caught up in what I thought my daughter would be doing, would be saying, would be wanting on her 5th birthday. For a second, I am terrified by the clock that mercilessly keeps ticking. Every year, Ellie gets heavier. Every year, Ellie's CP becomes more obvious. For a second, I forget to breathe because the desire to change things is overwhelming. I want to make things better for ELLIE. I want to take away her struggles.

Yet, the next second, I look in the rearview mirror as I'm driving to therapy, and I see a beautiful little girl, pretending to call Daddy on her Princess Belle cell phone, telling him that we'll be home in a couple of hours, once she's done working hard at Gabby's. She hangs up the phone with a smile and says, "Mommy, now I'm going to text Steph." And the isolated pointer finger on her left hand starts banging the digits.

She's happy. So happy. And that has ALWAYS been my overwhelming desire.

I don't live in a fog. I know that there are a lot of things that Ellie should be doing at 5 that she's not. However, I also know that she's doing a LOT of age-appropriate things and I am holding onto that knowledge. She surprises me every day by the things she says or does. I want to make that my yardstick. I want to be happy because SHE'S happy.

In a true picture of "life as we know it", we are spending tomorrow, Ellie's 5th birthday, travelling to Tampa so that we can go to Shriner's Hospital and pick up her new leg braces. Ellie is PUMPED to get her new "special shoes". She even asked me, "Are my new AFOs my birthday present?" She would be more than pleased if they were. She's happy. She knows a life that's no different.

Oh, the lessons taught by a ~~four~~ five year old...

On second thought, maybe THESE would be better birthday presents...

Superwoman...

2010-02-28T06:53:00.000-06:00

...I am not.

(I know that I'm pointing out the obvious.)

I am failing horribly at keeping up this blog. It's been so difficult, with posting on Ellie's blog and hosting a steady stream of visitors. Please forgive me.

It's been AWESOME having company, as it makes the time go quicker and the heart less lonely. And Ellie has ROCKED.IT.UP. at therapy this week. I actually get teary-eyed just thinking about it. She wants to walk everywhere and is getting so good at it! Yesterday we spent the afternoon at Disney with a couple of our Canadian visitors and I actually had to tell Ellie "no" when she asked to walk one time, because I was scared that she was getting too tired and that her little legs would collapse. Unreal!

My heart is very satisfied and hopeful. Sometimes I find myself a little *too* excited at Ellie's progress, as I start to feel impatient when I dream of what's in store for her. If she's come THIS far in 4 weeks, what will the next 4 look like?! It's a good impatience to have.

There are a couple of weeks in early March that we're visitor-free, so hopefully that will bring me more heart-blogging time. Until then, know that you are loved and that my heart is singing.

Roomies

2010-02-09T07:47:00.001-06:00

Ugh.

I hate that I'm neglecting this blog. I have made so many mental posts in the past couple of weeks, but finding the time to spew them onto the keyboard is rough. Maybe now that we're more settled in one place, I'll be better. A girl can dream...

I wanted to tell y'all a little bit more about our hospital experience. I know we're only a couple weeks out of the surgery and the hospital memories are fresh in my mind, but a part of me is forever changed because of our time at Children's. I bow down to all my friends who have spent countless nights wandering those sterile halls. I realize that we have been blessed by Ellie's health. We see a lot of doctors and therapists, but have been spared the hospital overnights.

Before we got to Vancouver, I already started praying that we would have a private room at the hospital. I had visions of rooming it with a baby who cried all the time, or a child whose parents were weird and wanted to invade our privacy. I was very worried about sleep (as if you can sleep any better without a roommate, when nurses are coming in to check vital signs every hour!), and figured our best bet at catching some zzz's would be a private room.

Of course, God had other plans. That seems to be a trend in my life...

Within a couple of hours of arriving in the ward after surgery, we "welcomed" our first roomie. A 14-year-old girl. With only a curtain separating the beds, overhearing medical conversations becomes the norm. It didn't take me very long to figure out that our roommate was in the hospital for curious abdominal pain.

She was sweet. Listening to the conversations she had with her mom and with her friends on the phone provided me with some much-needed comic relief. She was just a typical 14-year old, getting mad at her mama, who wanted to snuggle with her in the single bed (I see both sides on that issue!), and gushing with her girlfriends about hot guys at school. Overhearing her conversations made me love and miss my youth girls with intensity. She reminded me of them and it warmed my heart to pray for every one of my precious girls, as they crossed my mind.

On day 3, Miss Teen Roomie received an early morning visit from her mom. Ellie was still sleeping, but I was awake. The room was dark and quiet and I was just sitting there, enjoying the silence. As soon as Roomie's mom opened the door, I noticed she was crying. I heard her softly say, "I have some bad news...They found out yesterday that it's cancer."

GULP. I felt terrible for being privy to this very intimate mother-daughter moment. But, there was nothing I could do. I didn't want to make a sound. I prayed that Ellie would stay sleeping. I felt the tears welling in my eyes and I couldn't help but let them stream down my face. Precious girl. Fourteen. Ovarian cancer. Again, my heart wandered to the high-school girls who have stolen my heart and I thanked God for every one of them. Oh, what a blessing that they are all so healthy and have been spared from this kind of pain. I pleaded with God to keep them well. I looked over at Ellie, peacefully sleeping, and realized that I had nothing to complain about. We were going to leave the hospital in a couple of days and pick up with life, just the way we'd left it. Roomie, on the other hand, would be forever changed, and certainly faced a long hospital stay (at best).

I didn't know much about Miss Roomie, but I knew that she changed my heart. I find it very easy to become selfish and bitter when Ellie's CP takes over our lives. I battle the demons of jealousy and find it easy to fall down the slide of "everyone else has healthy and able-bodied kids, why don't I?" A week in the hospital is the butt-kicking I needed. It started in our room, and extended out into the hallway. Our ward was adjacent to the pediatric burn unit. I tried to avoid traveling that way, but even the sign on the wall was a reminder that other families are dealing with trauma much greater than ours.

Thankfully, Miss Teenage Roomie was transferred to a private room later that day. I was so glad for her. She needed her space and privacy and I wasn't jealous in the least. Within an hour, we had our second roommate.

Again, I was hesistant about who would be sharing "our" space. But, AGAIN, God knew what He was doing and placed the *right* person in the *right* room.

This time, our roommate was an 11-year old girl. She had been in a tobogganing accident and smashed in her skull and broke bunches of bones in her face. Poor thing. She was sedated and we didn't hear a peep from her. Our new roomie's mom remained by her side, 24/7. She approached me in the morning, asking about breakfast.

I could tell that she wanted to talk about more than food services. I did too. It's lonely spending the entire night in the hospital at the bedside of your kid. So, I chatted with roomie's mom for a long time. They lived 1500 miles north of Vancouver, in the Northwest Territories (or close to it) and were air-lifted to BC Children's Hospital for specialized care (she ended up seeing Dr. Steinbok, our neurosurgeon!). The mom went on the flight with the clothes on her back. Her husband stayed in their small town with their 2 other kids. She had no clothes, no car, no toiletries, nothing. They provided her with scrubs so that she could have something clean to wear. Their family had just moved up north about a month ago; all of their friends and relatives were still in Toronto. And here she was, by herself, with her severely injured daughter, in a big strange city, 1500 miles from "home".

Wow. I ended up crying with her. Again, I couldn't help but feel so blessed. And so selfish. Of course, Vancouver was a big and strange city to me, too, but a mile away slept my mom and husband, scheduled to soon relieve me from my bedside vigil. At my hotel room, I had a suitcase full of clothes. I had a comfortable bed to sleep in. My rental car was in the parking garage. And, my daughter was going home in two days.

I told roomie's mom that I would pray for her. And I did. I still do. I was so thankful that God led her to our room and that I could offer her some comfort that morning. I don't know if my words meant anything to her, but I'm fairly certain my presence did. Maybe, for that hour, she didn't feel quite so alone. Maybe she believed me when I said I'd pray for her.

We were discharged the next day. Richard and I took Ellie to our hotel suite and slept the night away in comfy beds. Then we went home, and on with our lives.

We are blessed. And, because God knew better than I did, my heart changed as result of not getting a private room. It's definitely a good thing that HE'S in control.

(And because I haven't posted a pic on this blog for a long time, here's one that showcases just how "on with our lives" we went after coming home from the hospital!)

The Night Before

2010-01-25T23:35:00.000-06:00

Ok.

Breathe.

Today was okay. And, honestly, I'm feeling better now than I have all day. I think I know why. There's this guy. He arrived in Vancouver today. His presence gives me comfort and stability.

AND. Today I was flooded with info on the post-op period and I think it will be better than I first thought (assuming everything goes according to "plan"). I'm not as scared. I can do this. WE can do this. For Ellie.

Ellie was nervous today. When she gets stressed like that, she tends to go to the bathroom a lot. It was frustrating because she'd have to go in the middle of a therapy or doctor's appointment. And, even though I am so very grateful that she's potty trained, it is DIFFICULT doing the bathroom thing with her. Her little legs are so stiff that sitting on the toilet is a challenge. Never mind getting her on and off the seat, heaving her up to the sink to wash her hands, etc. Doing all of this with a 38-pounder is not for the faint of heart. It was such a good reminder to me of WHY we are doing this tomorrow. Ellie will be able to move her legs apart with relative ease! Even if she doesn't get to independent walking, THAT alone will be worth it, because it's one step closer to full independence for her.

So, THANK YOU, again for the prayers. They must be working. It's the night before my baby's spine surgery and I'm sitting her feeling okay about it. Only through prayer.

I'm just gonna be bold and give y'all a list of prayer requests for tomorrow. You are so faithful in your love, support and prayers. Some of you have asked me for specific requests, so here they are:

*Sleep for tonight
*Ellie won't be too nervous before the surgery
*The IV won't hurt her
*The waiting room and hospital room will have internet access
*We'll get a private room
*PAIN MANAGEMENT for sweet Ellie (this is one of my worst fears)
*Angels in the operating room
*The waiting won't be too excruciating for Richard, me or my mom
*I won't puke
*We will be examples of Christ to all the doctors and hospital staff
*Ellie will sleep nicely, peacefully and pain-free for the first 24 hours

I'm sure I'll add more tomorrow and the next day...

Not So Much

2010-01-25T10:04:00.000-06:00

In this really freaky sort of way, it's good to feel an emotion other than fear, anxiety or nervousness. Right now, I'm just feeling plain ole livid.

I am going to try to keep this as anonymous as possible, because I realize that just because someone's political views differ from mine, it doesn't necessarily reflect the person's goodness. I have so many AMAZING friends (many of whom read this blog...love you guys!) who view the political world differently than I do. They are friends who would do anything for me, and I for them. Our love for each other is not affected by the ballot box.

So, it's not a different opinion that infuriates me today, but, rather, the skewing of my words to support an ideology I am dead-set against.

THIS is what I read on a blog today:

Update on Ellie:
The surgery she needs to walk and reduce pain has been postponed again due to the rationing of Canada's health care. This is now her third date: 26.January.2010. Then it's off to the USA for her needed post-op physical therapy.

I don't know this blogger. I am overcome with gratitude that she has mentioned us in her writings and that she has asked people to pray for my sweet girl. LOVE LOVE LOVE that.

What I HATE, however, is the misrepresentation in this short paragraph.

NEVER, EVER HAVE I SAID OR IMPLIED THAT ELLIE'S SURGERY RESCHEDULE WAS DUE TO THE RATIONONING OF CANADA'S HEALTHCARE. We live in Canada BECAUSE of the healthcare system. The reason Ellie's surgery was rescheduled from January 5th was because a boy was experiencing 100+ seizures per day and Dr. Steinbok needed to operate on his brain before Ellie's spine. It has nothing to do with rationing. The same thing could have easily happened in the US. The reason why there aren't any local neurosurgeons performing SDR has nothing to do with rationing and everything to do with population. We live in a very sparsely populated part of the country. Our local neurosurgeon actually did perform SDR surgeries for a while, but because the demand was so low, he decided it was better to refer his patients to Vancouver, to see a surgeon who performed hundreds of these procedures each year. That is NOT rationing.

WE ARE NOT GOING TO FLORIDA BECAUSE THE POST-OP THERAPY IS BETTER THERE THAN IN CANADA. We receive amazing therapy at home. And, our physiotherapy and occupational therapy is completely covered. What a blessing! I can't even imagine how much our medical bills would be if we lived in the US. Again, because we live in a sparsely populated area, there aren't as many therapy options for us. The therapy we're receiving in Florida is not free. Far from. If we lived in Alabama, for instance, we'd be faced with the same dilemma, because there are NO conductive education centers in that state. So, in order to receive the frequency of post-op rehab we desire, we'd be forced to either move to a city near a center, or spend $100 per ONE HOUR of physical therapy.

Everyone is entitled to their own opinions on healthcare. I know that. I accept that. But, PLEASE, don't EVER use my words or situation to defend a system that, in my opinion, is completely ridiculous and inhumane.

Whew, that felt good to get off my chest.

Late Night Admissions

2010-01-24T23:26:00.000-06:00

Ugh.

Not doing as well tonight.

Fighting the demons. Feeling sorry for myself.

How come EVERYONE else has healthy kids? Why do I have to go through this? Why ELLIE? It just feels so surreal. How did this become MY life? I didn't want this.

I know that I need to snap out of this. I know that these are not "God words" or thoughts. I know that I'm not really alone and that there are plenty of other sick and disabled kids out there.

But, I just need to be real and admit that I'm struggling with my thoughts. I was lying down beside Ellie as she went to sleep tonight. I kept thinking about her last surgery. She was only 9 months old. It was day surgery. The doctor "just" fixed a muscle in each eye. I thought it wasn't a big deal.

Then, I walked into the recovery room. There, on a stretcher, lay my baby, screaming at the top of her little lungs, CRYING TEARS OF BLOOD. It was a horrendous sight. I puked.

I am absolutely terrified of that moment, walking into the recovery room on Tuesday, after Ellie's surgery is finished. I love her a million times more today than I did when she was nine months old, and I just don't know if I can do that again. I know that her tears won't be bloody, but there will be tears. And I don't want to puke.

Demons, I tell you.

Pray for me. I feel terribly selfish asking for prayers, since it's my precious Ellie who really needs them, but if you're on your knees anyway, throw one in for me too. I know that I will need God's strength to overcome these fears. I know that I will need Him to carry me. I just can't do this alone.

Thanks for your "ears"...

On My Own

2010-01-23T23:35:00.000-06:00

Super-blogger-woman I am not. Keeping up with 2 blogs and a Facebook page is rough. Unfortunately, this is the one feeling the neglect. I’m sorry, sweet, original blog. I still love you. (And my readers!)

I’m doing okay.

Gettin’ the nervous stomach. Upping my dose of Tylenol PM. But okay.

There will be much surgery/hospital/recovery whining yet to come this week, so I think I will blog about a different topic today.

Independence.

It’s a word that many people would use to describe me. It’s a word I would use to describe myself. Or, at least WOULD HAVE used.

There was a time, in my early 20s, when I thought I’d never get married…because I didn’t want to. I didn’t want to ever rely on A BOY for anything. Especially something as integral as self-worth. I wanted to maneuver through life on my own, because I could, and I could do it well.

Then Richard messed it all up with his goodness and brilliance.

We’ve been married for nearly ten years. Even while we were dating, we discussed at length (prompted by me, of course) what our marriage would look like. Richard and I entered into marriage as an equal partnership, a captain-less team.

It has remained that way. I am so thankful. We lead our family TOGETHER, and it works fabulously for us. I can truthfully divulge that we have never been in a situation where one of us has been unwilling to compromise. I LOVE our equal partnership.

I also love Richard’s ability to feed my independence. He knew the woman he married! He knew I needed to be Chrystie, not just “Richard’s wife” or, later, “Ellie’s mom”. He also knew that 50% of the “work” would fall on his shoulders. After 10 years, I think we’ve figured out our roles and jobs.

It’s Richard’s job to put the car seat in and out of the car when needed.

It’s Richard’s job to blow up Ellie’s air mattress when we sleep in a hotel.

It’s Richard’s job to pick up the rental car and figure out the insurance coverage.

It’s Richard’s job to program the GPS.

It’s Richard’s job take pictures and download them to the computer.

It’s Richard’s job to drive in a strange, big city.

It’s Richard’s job to take Ellie out of the tub.

It’s Richard’s job to make a late-night grocery trip.

(Just for the record, I have my share of jobs too. That, however, is a post for a different day!)

Guess what? Richard’s not here in Vancouver (yet). So, Richard’s jobs became MY jobs this week. Before I left, we spent a few evening hours together, going through the “how to”s of each task. I had to learn.

It’s been good for me. It took this week to realize how dependent I’ve become on Richie. While it’s wonderful to have someone to lean on, I also feel better about myself when my head is out of the sand. I am really proud of myself for powering through and accomplishing each of these “Richie jobs”. (Though, please pray that we don’t have an accident in the rental car because I’m not sure I have the car seat in completely correct, nor am I convinced I signed up for the right insurance at the Thrifty desk…)

I’ve also fallen even more in love with that husband-guy of mine. He’s such a keeper. I love that he’s made my life so easy by taking these responsibilities off my shoulders.

I’m very ready for Richard to join us here in Vancouver. I’m ready for him to do some of the driving. I’m ready for him to be in charge of supper. Mostly, though, I’m ready for the emotional support he gives. He hugs my heart and the world is better when he is near.

So, rah! rah! to me, for conquering and accomplishing. And, Thank You Jesus that I only have to do it for one more day.

Lullaby and Goodnight

2010-01-18T20:53:00.001-06:00

I promised that this would be my heart-blog; a place to be real. Today, I'll keep my promise.

I am still doing okay.

BUT.

The sleeping is getting rough. I have always been prone to bad dreams, especially during times of stress. Well, surprise! This must be a stressful time, because my night has become plagued by dreams that make my heart sad and petrified.

While the nightmares most definitely suck, I have also become aware of my fears because of them. The past few nights, I have been shocked awake by images of Ellie after surgery. In my dream, she is wheeled out of the operating room and is hooked to EVERYTHING. Tubes are coming out of her mouth. Tubes are coming out of her nose. Tubes are coming out of her belly button. She turns over, looks straight into my eyes and tries to say, "Mommy", but can't, because she's intubated. Then, with a slumbered blink, the Ellie in my dream changes back to a newborn baby.

She's this:

Hooked up to everything. Tubes coming out of everywhere.

Then I wake up, paralyzed.

I find myself reliving those dark moments of Ellie's first few days. I am scared to go to that place again. I am terrified of feeling that desperation again. THAT is my nightmare.

Yet, I have hope. While I combat the fear on a regular basis, I am hopeful that seeing Ellie recover from her surgery will free me from these images. Maybe my heart will be healed a bit. Maybe I won't go to that very dark and dismal place this time and I will overcome these demons.

Till then, I will selfishly solicit your prayers. OF COURSE, pray for my sweet Ellie. But, perhaps throw in a prayer for me too. Pray for my sleep. Pray for my anxiety level. Pray that Ellie's surgery recovery will be a healing process for me. Thank you.

Look, Look!

2010-01-13T21:41:00.000-06:00

Ellie's new blog is up! I haven't yet posted the link to the world, and there's a bit of tweaking yet to do, but I thought I'd give you, my sweet bloggies, a preview. Isn't it purty? You have sweet Richie to thank for the goodness to your eyes. He's a keeper, that guy is.

I hemmed-and-hawed over the creation of a new blog. At first I thought I'd just post Vancouver and post-op therapy updates on this blog. But, the more I thought about it, the more I realized that I didn't necessarily want EVERYONE reading some of my more intimate thoughts. And, really, not everyone wants to read about my political ramblings or non-Ellie musings.

So, Ellie's blog will be strictly about...well, the Ellster. It'll be very "factual", whereas this will remain my heart-blog. You guys know that.

Love y'all!

Ellie's Footsteps--Journey From SDR Surgery to the Mountaintop

Cracks

2010-01-12T16:13:00.007-06:00

Who knew that a cracked window could induce tears, a racing heart, and a severe bout of “I just want to stay in bed” sickness?

It’s a cracked window. Whoop-dee-ding-dong. We’re homeowners and “stuff breaking” is part of the contract we signed at the realtor’s office. I know that. Under NORMAL circumstances, a cracked window would result in a heavy sigh, an “Aw, crap, now we can’t go out for dinner on Friday cuz we'll need to use that money for repairs” uttered under my breath, and a call to the glass shop. And then life would go on.

Last night, obviously, was not normal.

I was getting ready for bed when Richard said, “Oh, I looked at the living room window today and the crack that started off as teeny-weeny is now running from top to bottom of the glass, and it’s all frosted over. Guess we’ll have to do something about it before we leave for Vancouver.”

That was it. Panic. Tears. Palpitating heart.

We have one week before we leave. Can someone fix it that fast? Can we leave the window like this for our house sitters? How much will it cost? How much cold is getting through the crack? Who do we call? What do we do? What do we do?? What do we do???

My hysteria was not caused by the window. The window was merely the last drop of the potent “things to do” liquid that caused my cup to run over. I hadn’t actually realized I was so saturated until I overflowed.

I thought that I was handling things fairly decently. Things went really well last week at home with Ellie. I got quite a bit done and I was feeling this strange sense of peace and organization---both on paper and in my soul. It was good. I even told one of my girlfriends, who was sweet enough to call and check on me, that I was happily surprised at how easy it’s been to keep my anxiety in check. I said that it must be a result of all the prayers. I know for a fact that those closest to me have been praying specifically for my ever-worrying heart.

The prayers HAVE worked, and continue to, but admittedly, I have experienced a bit of a lapse in the past 24 hours. My peaceful heart has turned to chaotic mush and the thought of leaving for Vancouver in a week has resulted in some nasty-tasting vomit coming up in my mouth.

So, today, I had to stop and figure out how to combat the anxiety. I have always maintained that my little blue Zoloft pills are only a 7-digit phone call away. I will not hesitate to medicate if my heart and head start racing uncontrollably.

But, I’m not there yet. I knew I had some unused self-awareness weapons in my arsenal and I had to literally stop, stand still, and use them this morning.

Start from what you know.

I know that my mom will help. A 3-minute phone call later, I had Ellie-care for the day.

I know that reading the Bible will calm me down. After looking up “worry” in the concordance, this is the verse that shocked my heart into a soothing rhythm:

“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.” Matthew 6:34 (The Message)

I was especially struck by the fact that it doesn’t say IF hard things come up tomorrow, but WHEN. They’re coming. Ellie’s having surgery in TWO WEEKS. If that’s not a hard thing, then I don’t know what is. But, God has promised that He will help me deal with that hard thing, just as He’s gonna help me deal with all the hard things of today. Gotta love that Guy.

I know that, even though every fiber of my being wants to crawl back into bed and depress the day away, I CAN and WILL conjure up the determination to power through. I made a list of all the things I needed to get done today, and while it was a bit overwhelming to see it written down, I also knew that I could get it all done. I knew I could force myself over that hump of despair.

And I did it!

I called my insurance company. I called the wheelchair supply store. I called the glass fix-it-store. I called the credit card company (and because they said that they covered my rental car insurance in Vancouver, it saved me a called to my auto insurance company, yay!). I called the airline and changed our Florida flights. I called the couple who are going to be house-sitting for us. I went into work and finished up some paperwork-stuff. I made my application for employment insurance (doubtful I’ll qualify, but I had to try). I made 3 different doctors appointments for Ellie. I called the therapy clinic in Florida. I did the laundry. I blogged!

Every single thing on my list. Took me all afternoon (don’t even get me started on the music some offices play when they put you on hold), but I did it!

God helped me deal with the hard things.

Today was a victory. I need the victories. I need the calm. I need the satisfaction I get when looking at a list that is full of “to do”s that are crossed out.

And the glass repairman is coming tomorrow.

So, for those who have been faithfully asking (thank you!), I answer with an honest, “I’m doing okay.”

And There You Have It...

2010-01-06T12:58:00.011-06:00

Ah, Christmas. Is it just me, or does it feel like it was 3 months ago already? I truly love this holiday. I don't even mind winter....up until New Year's Day. But, come Jan. 2nd, I am ready for spring and for all the decorations to be put up till next year. Unfortunately, Canadian genies do not grant such wishes. Spring is a LONG. LONG. LONG. time away. (Except for the fact that we're off to Florida in a month!)

Christmas 2009 rocked. I think every Christmas is pretty awesome, and this one did not disappoint. We did things a little differently this year. We went (what we consider to be) super low-key. Low-key on the gift-giving. Low-key on the parties. Low-key on the decorations. It all resulted in HIGH-KEY enjoyment.

Every year I am frustrated with the process of Christmas and vow not to succumb to the commercialism of it all. And, it seems like every year I end up caving. But this year I was really proud of myself. We spent $50 max on Ellie. The only other person we really bought anything for was sweet Zach. There was no last-minute rush to the stores filled with psycho shoppers (because I NEVER fulfill my resolution to "shop early this year"). There was no wrap-fest, watching Richard sit on the floor for hours, getting all the presents ready. There will be no screams of anguish when the credit card statements arrive this month. And guess what? As far as I know, no one cared. I'm certain that Ellie didn't care. She got her Sesame Street camera and she's good to go for another year. She was absolutely thrilled to spend 4 straight days with Mommy, Daddy and all those other family members and friends.

Now, after saying all of that, I was actually pleasantly surprised that, for the first time, Ellie was into her presents. She didn't care if the gifts were $5 or $50, but she *did* care if they were given at all. For the first time ever, we were able to use her Christmas gifts as bribes, er, I mean incentives. "The faster you can walk in your walker through the church lobby, the faster we can get to the car, the faster we can drive home, and the faster you can start opening up your stocking-gifts..." And away she would run! While I'm not particularly impressed with Ellie's new-found love of "stuff", I am selfishly happy that she's displaying "normal" child-like behaviors. Ah, the story of my life.

We also *HOPEFULLY* started a new tradition this year, hosting Christmas Day Brunch with BFFs. The older I get, the more I realize that my "life-long best girlfriends" have become my family. I just can't get over how blessed I am to have family who are friends, and friends who are family. Grossly cheesy, I know, but true nonetheless.

It was a very Merry Christmas for us, though we missed our Southern Family a lot. But, hey, there's nothing wrong with Christmas in spring either!

I downloaded a few pics....so many of our pictures were centered around Ellie opening gifts. Terrible. Why is it that the present-opening is like the big fireworks-show of the night?! Anyway, here are a few snapshots of our holiday, mostly of my precious little elf. I really hope that each of you had a fantabulous Christmas too!

Playing with her new dolly

Grandma's got the ball pit. Now all we need is the Big Mac...

Forcing Zach and Ellie to hug. Yup, they really do love each other...

Nothing better than opening gifts in pajamas!

...and getting to open them on Mom and Dad's bed!

Getting a picture with all the "great grandchildren" is a gong-show. This was the best we could do! Despite its craziness, I love this picture. THIS is one of the main reasons we moved back here--so that Ellie could grow up with her cousins. Warms my heart.

We've been trying to combat Ellie's "W sitting" (what she's doing in the previous picture, beside the Christmas tree, except with her feet more spread out....so that her legs are in a "W" position), because it's terrible for her knees and hips. In order to do that, we encourage her to take breaks by lying down. Grandpa helped make this particular "Ellie, lie down, please" time a lot more enjoyable! :-)

Bang On the Drum All Day...

2010-01-04T19:38:00.002-06:00

Today is Monday. And I’m not at work.

It feels weird. And scary. And a bit sad. And a bit happy.

I’ve actually been on my official leave of absence from work for two weeks now. However, with Christmas and New Year’s, it’s been so crazy that I haven’t had time to process my membership in the Unemployed Club.

Today, though, it hit me. Everyone else was getting up for work and school, and I wasn’t. THAT was a definite perk! I did not miss the alarm buzzing at the butt-crack of dawn. But, my heart sighed when I thought of everyone going back to work and school, settling back into their routine, and chatting it up at the water cooler.

I LOVE my job. And I LOVE working outside the home. Oh, there are obviously days when I wonder how everything will get done, or if I’ll ever be “not tired” again, but 95% of the time, my soul smiles as I make my way to work. I love the way my job makes me feel. My self-confidence is boosted almost daily, because I am given the opportunity to use my gifts and the people I work with are amazing in their constant encouragement.

My mommy-confidence is also lifted when I work outside the house. It’s true. I’m a much better mom when I let other people look after my kid during the day. I hate doing crafts. I hate sitting at the table for hours, attempting to make Play-Doh look like Sesame Street characters. I hate trying to think of cool things to do with macaroni and glue. I hate looking at the clock every 20 seconds, painfully waiting for magic moment when Richard is done his work day so that I can hand Ellie-care over to him.

On the other hand, I love that feeling of anticipation at the end of a work day, when my heart starts to flutter at the thought of picking up Ellie from daycare. I love lying on the floor with her before bedtime, giggling and savoring the last few minutes of her day. I love going to sleep on Friday night, knowing that I have two glorious days with my two favorite people.

And, admittedly, I love payday and being able to spend some frivolous money without (too much) guilt.

So, needless to say, I’m a little apprehensive of the upcoming six months and all this stay-at-home-mom-ness. It’s the right thing to do, but not the easiest.

I also realize that once we’re in Vancouver, and then Florida, I’ll be kept plenty busy with my role as caregiver, chauffeur and therapist. And my paid-job will be waiting for me in July. It’s all good.

Christmas and New Year’s synopsis to come (hopefully) tomorrow! But, here’s a photo-taste of the Most Wonderful Time of the Year.

Merry Christmas!

2009-12-23T21:23:00.002-06:00

Joy to the World

2009-12-18T12:39:00.002-06:00

I always loved school. Really. I was one of *those* kids.

But, now, school is scary. Nausea-inducing-scary. I want Ellie to be one of *those* kids too. But, what if she's not? What if kids make fun of her? What if her aide is incompetent and mean? What if, what if, what if...

It was very difficult for me to bring Ellie to preschool in September. I knew that she would have a one-on-one aide, but this person was a stranger to me. I feared that Ellie would be trampled in the crowd. I was scared that the other kids would notice Ellie's "special-ness" and make fun of her because of it. I was especially terrified that Ellie would feel different.

NONE of these fears have been realized. I couldn't have asked for a better aide for Ellie. She has included Ellie in all of the activities and my sweet baby girl has flourished at school. Ellie has made friends and when the kids see the wheels of her walker turning the corner into the classroom, she is greeted to a chorus of, "Hi Ellie"s! It is glorious.

I was once again blown away during Ellie's first-ever school Christmas pageant this week. Her amazing aide made sure that Ellie was always part of the action. And Ellie loved it! I wondered if Ellie would stick out like a sore thumb, but she didn't. The precious girl was getting into each song, doing the actions as best she could. It was truly heartwarming.

Thank goodness Richie-Rich is freakishly tall, as he was actually able to get a few good shots of our little reindeer, even from our back-row seats. Isn't she amazing?!

Lifting up her Christmas Star (*I* should have been the one receiving the star, for having the self-control to not go up on stage and push Ellie's antler-ear hat back onto her head!)

Workin' hard to do the actions right...

Gettin' ready for her special part in the show, when she gets to lift up her dolly...

Perfect!

Making sure that everyone else has their letter...

Singing and resting her tired legs...

Waving her Christmas candle (aren't we all glad they're FAKE?!)

Lettin' her little light shine....

Glimpses

2009-12-15T20:05:00.005-06:00

I know I need to post.

I know I need to share my heart.

I know I need to give you new glimpses of sweet Ellie.

But, I'm tired. It's December and the calendar is jam-packed.

It's Christmas. Though my heart, head, and body are a bit weary, I am finally feeling ready to celebrate the Big Birthday. I don't always understand His ways, but I feel it in my bones that God is good and faithful. I want to really and truly celebrate the birth of my Saviour. And that's what I'm going to do!

I have to admit that Ellie's new surgery date was a hurdle I ran straight into. I am almost ashamed to admit that I was heartbroken when the nurse said, "January 26th."

I had publicly proclaimed to my little world that I trusted God would get Ellie into the operating room before January 19th. Last time I checked my calendar, the 26th came AFTER the 19th. Close, sure, but outside the parameters of my prayer. Outside the "miracle box".

I cried. Not because Ellie's surgery date was pushed forward three weeks, but because it felt like God played a nasty trick on me. Finally, I believed. Finally, I felt the faith ooze through my spiritual pores. And then, January 26th. One week short of my faith line. One week longer than my belief would stretch.

BUT. There's a reason why the last two paragraphs are written in past tense. God is a healer of hearts. Through my tears and questions, He held my hand. I don't know why Ellie wasn't miraculously fit into Dr. Steinbok's surgery schedule before the 19th, but I DO know that believing in God's ability to make it happen was chocolate for my soul. Maybe that was the point.

So, I've been making new arrangements and things are falling into place quite nicely. Vancouver accommodations are booked (and we seem to be coming and going *just* before the Olympic rush raises prices higher than those purty mountains). Flights are scheduled. Post-op therapy is a-go. It's good.

Now it's Christmastime and I want to soak it in. I want to experience the holidays though the eyes of a sweet four-year-old.

I want to go to Ellie's preschool Christmas program tomorrow and feel happy...that my daughter has made friends, that she knows who Jesus is, that she has flourished in school. And if she's the only one not singing, and the only one not standing, and the only one not doing the actions, and the only one who doesn't say a verse, I want to be okay with it. Because she's Ellie, and it's Christmas.

So, there you go:

I've posted.

I've shared my heart.

And, I'm leaving you with glimpse of sweet Ellie in her Christmas outfit.

Round Three.

2009-12-04T19:56:00.001-06:00

December

2009-12-01T13:22:00.003-06:00

I thought my time of daily blogging had come to an end when I turned over the calendar this morning.

But, my childcare provider told me otherwise. Apparently she (and perhaps a few others?) actually enjoys reading my daily ramblings. While I won't promise to keep up the daily trend, I will definitely attempt to keep my creative writing juices squeezed by posting on my beloved blog more often than I did pre-November.

It's good for me to get my feelings onto cyber paper. It's good for me to laugh. It's good for me to share my heart.

And it's SO SO SO good for me to know that you are praying, caring and "listening". You warm my heart.

So, today, I'll leave you with a very short and funny mini-story:

First of all, to catch the humor in this story, you need to be aware of Ellie's full name. It's ELLISE (isn't that beeooteeful?). And her middle name is Florence. While we don't call her Ellise that often, it does come out occasionally (and not only when we're mad at her!).

So, this morning, I was listening to Christmas music while cleaning the kitchen. Ellie was having a jolly ole time writing to Santa on the chalkboard in the dining room.

I started singing along with the song Feliz Navidad...only to hear little Missy exclaim from her chair,

"Mommy, it's not Feliz Navidad, it's Feliz Florence!"

So, on this first day of December, I wish you all a F'Ellise Navidad!

PS: I know that many of you are anxiously waiting with me to hear back from BC Children's Hospital with a surgery date. I sent the nurse another email this morning so please continue to pray. I am still holding onto this invisible, but oh-so-powerful hope that we can get in before mid-January. Keep praying!

Close, But No Cigar

2009-11-29T20:37:00.002-06:00

I never liked cigars anyway.

Though I am a tad disappointed in myself for not completing my goal of posting every day in November, it was so worth it to take a break this weekend.

I went away. To a land far, far from home. Where my cell phone had no bars. Where the internet had no name.

Instead of looking at a computer screen, I looked at this, right outside our cabin window:

And, I got to do it with 20 teenagers.

Way better than a cigar!

Thank You.

2009-11-26T22:42:00.001-06:00

My Heart

2009-11-25T11:43:00.005-06:00

Prayer.

It’s a simple word for a seemingly simple subject.

I believe in God, I believe He listens, I believe in a relationship with Him, therefore I pray.

I wish I could leave it at that and be satisfied. I wish I could drop everything at the feet of Jesus and and let Him answer and guide. I wish I could believe, always, that He is capable of big things. I wish I could give Him the control.

I wish prayer was simple.

For years, I have struggled with the concept of God answering prayer. What do “God’s answers” look like? If I’ve prayed for someone to be healed, and yet they die 3 days later, is that an unanswered prayer? If my best friend lands a great job, while her next door neighbor still struggles to find work, has God answered only one of those prayers?

Over the weekend, I spent a couple of hours at church, listening to a missionary family recount their experiences in China. They told a story of how they prayed with a neighbor, that she would become pregnant after years of infertility struggles. Voila! The next month, their neighbor found herself pregnant. As I listened to this story, I became increasingly agitated and defensive. How is it that God would answer HER prayer and not mine? What about all the other women in this world who struggle so desperately with infertility? Has God forsaken them?

I don’t want to feel abandoned by God. I don’t want to have to explain how He seems to answer some prayers and ignore others.

So, I pray safe.

If it’s Your will for Mrs. Smith to become pregnant, then please bless her with a healthy baby. BUT, if it’s not in Your plan, then give Mrs. Smith the peace she needs to journey this difficult road.

It’s the sort of prayer that gives both God and me an out.

If Mrs. Smith is knocked up next month, then God answered. If Mrs. Smith ISN’T pregnant, then God still answered, and a Big Fat Positive on the pee-stick must not have been in His plan. God answers either way. Everyone wins.

Or, maybe, just maybe, I lose out because of my disbelief. Maybe God actually WANTS me to pray big…and believe He’ll answer.

I have never prayed for Ellie’s healing. Not once. At least seriously. I’ve tried a time or two, but I’ve stopped mid-sentence because it seemed ridiculous. God knows my heart, my inner-most thoughts. He knows I don’t believe it’ll happen. There is no cure for cerebral palsy. I’ve never heard of ANYONE with CP being healed. Just as I wouldn’t pray for someone’s amputated leg to grow back, I wouldn’t ask God to heal a permanent brain injury.

So, rather than make a farce of God’s omnipotence and highlight my lack of faith, I pray safe. I pray for His will to be done. I pray for peace.

Peace is a good thing. Walking in God’s will is a good thing. And when I pray for these things to happen, both in my life and in the lives of others, I really mean it. I really want it. I really believe God can deliver.

But, today, my heart is being tugged. Yanked so hard that it hurts. I feel it. I hear it.

I hear HIM.

Pray BIG, Chrystie. And believe that I can do it.

Perhaps I have to start “small”. I still can’t pray for complete healing. I can’t yet beseech God to perform a miracle I don’t believe in. But, there are “smaller” miracles that I’m ready to pray for, to believe He can perform them.

Yesterday, in the quiet of my dark room, I succumbed to the tug.

Please, God, guide the scheduling of Ellie’s surgery. I know you can fit her into Dr. Steinbok’s schedule before Jan. 19th. I know You can. I know You can.

And then, with tears streaming down my face, I went one step further. Literally.

God, I pray for FOUR INDEPENDENT STEPS. No walker. No canes. They don’t have to be pretty or balanced. Four steps. All on her own.

Pray big. Believe.

Amen.

Grrrrr....

2009-11-24T14:50:00.002-06:00

Ok, kids.

I need your prayers. Richard needs your prayers because I need your prayers. And, Ellie, well, she needs your prayers because her mommy and daddy are on the brink of losing it.

I haven't yet blogged about this, but last week, the Vancouver neurosurgeon's nurse called to reschedule Ellie's SDR (spine) surgery. I thought someone had punched me in the gut. I had not anticipated it. I was not prepared for it.

It was frustrating that I couldn't even get snippy with the nurse because the change of schedule was for valid reasons. A little boy with a seizure disorder was experiencing up to 100 seizures per day. The seizures were being managed with medication, but only temporarily. The boy needs brain surgery and January 5th is now his day.

Ellie's surgery was bumped to January 19th. I know that it's only 2 weeks. BUT. So much is planned. Plane tickets are booked. Accommodations are secured (and paid for). Plans for post-op therapy are in place. I'm finished work as of January 1st. Two weeks puts a wrench in a lot of plans.

A good cry and a Tylenol-PM induced sleep can calm a chaotic and distressed heart. I had just begun to feel okay about things again. I was looking at the positives: Ellie doesn't have to be quarantined over Christmas now, we won't have to deal with holiday airport traffic, I can get a few more things done around the house during the first two weeks of January.

But. BUT.

The nurse just called again. It doesn't work for one of the members of Ellie's surgery team to be there on the 19th. Back to the drawing board. This time, she just left us in limbo. We no longer have a surgery date.

I just sent the nurse an email, trying to plead my case and informing her of all the plans we've made (and how much each day of surgery delay is costing us). I also told her that we would take ANY date, even one next week. Will this email work? I don't know.

LET'S PRAY IT DOES.

So much of this surgery is about mental preparation for me. Knowing the date calms my heart. Knowing when it will be over lessens my anxiety. Planning keeps me sane.

Just please pray. Pray that by a miracle we can get in for the surgery before the end of January. Pray that my heart will beat with patience and understanding, not with fear and worry. And, always, always, pray that we do what's right for Ellie.

Thanks y'all.

Saturday Stories, Part III (The Late Edition)

2009-11-23T19:08:00.003-06:00

I know the timing is impeccable, with it being American Thanksgiving this week, but this story actually takes place in October, during Canadian Thanksgiving. See, this story marries my two worlds. Awe, precious moments...

Thanksgiving Surprise
By Chrystie

My extended family goes to the bustling metropolis of Grand Forks, North Dakota every Thanksgiving. And when I say EVERY Thanksgiving, I mean EVERY. THANKSGIVING. They started this tradition before I was even born. To me, Thanksgiving weekend is not about turkey or cranberry sauce. It’s about shopping at Target, eating at a local dive of a buffet restaurant, and swimming. It’s about sitting poolside till we get kicked out and modeling our new Christmas dresses. Thanksgiving ROCKS in my world.

I absolutely LOVE the fact that Ellie can now make this HER (Canadian) Thanksgiving tradition. She loves spending time with all her cousins (1 first cousin and 7 second-cousins). She delights in zipping around from hotel room to hotel room, saying hi to Aunties, Uncles, Oma, Opa, Grandma, etc. She also adores swimming.

I, on the other hand, do not. Nor does Richard.

BUT, I want Ellie’s Thanksgiving memories to be as fond as mine. So, during that weekend, I unenthusiastically throw on the ole bathing suit once or twice a day, and lug the sweet girl to the pool.

Now, in order to fully grasp the climax of this story, you have to understand how full the hotel is during Thanksgiving weekend. We book our rooms 2 years in advance. Every room is taken. The hotel swarms with Canadian families, spending the long weekend in the States. Families who, like mine, gather poolside to play games or chit-chat.

And, in order to get from our room to the pool, I have to walk past quite a few of these aforementioned families.

Carrying Ellie to the pool means that the only real portion of my body exposed to the hotel world is my backside. My way-too-overgrown backside. The “if my pants fit in the waist, they’re always too small for my butt” backside.

But, for Ellie, I waddle my way to the pool, allowing everyone a front row seat to the booty parade.

Fast forward to Saturday of the Thanksgiving weekend. It was our second day in Grand Forks and it was my third time swimming. Ellie and I had a grand ole time in the pool, and we were back in the room, changing out of our wet swimsuits.

Richard was in the main room, changing Ellie back into her clothes. I was in the bathroom, taking off my swimsuit.

It was the first time I actually LOOKED at my bathing suit before hanging it up on the shower curtain rod. The first time I saw IT. I screamed in horror! “OH. MY. WORD.!!!”

This is what I heard, coming from Richard’s voice in the other room:

“Oh, yeah, I forgot to tell you that your swimsuit is all worn out in the butt and you can see through it. You should get a new one.”

WHAT???

Third time swimming. Third time walking past a hotel full of guests. Third time I actually stopped to talk to people on my way to and from the room and pool. Third time everyone got a perfect view of my butt crack.

First time I noticed anything wrong with my bathing suit. First time Richard mentioned anything.

Aren't you glad I'm giving you the PG-rated visual? That seam in the middle of my hand is where the ole butt crack would be. Explanation enough?!

The good thing is that it takes a lot to embarrass me. Because Ellie had such a good time in the pool, I wasn’t sorry that I sauntered my naked-butt around the hotel. But, it would have been nice to have known about my transparent bathing suit so I could have worn a towel or bee-lined my way to and from the pool.

Needless to say, I bought a new swim suit. No more traumatizing innocent bystanders.

Happy Thanksgiving!

Bama Birthday

2009-11-22T21:01:00.002-06:00

Today is "Southern Papa"s birthday. Southern Grandpa bleeds crimson, so Ellie made a little video for him. Precious Little Tide-girl she is! Happy Birthday, Southern Grampa/Dad!

PS: The Saturday Story is still coming, I promise!

PPS: I am always open to blogging suggestions, especially this month! Bring 'em on...

Surprise!

2009-11-21T19:46:00.007-06:00

I know I owe you a Saturday story. I have one, but it may have to be a "Sunday Story" now, because I have a special surprise today! A GUEST BLOGGER.

Give him a round of cyber applause. (Clap, clap, clap...)

Since it's American Thanksgiving this week, I figured THE.AMERICAN. should be the one to post a Thankful List today. (Is it apparent that this every day blogging gig is killin' me??) Take it away, Richie!

-----------------------

Thanks for that intro! I guess I'll do a "Thanksgiving thankfulness" post a week(ish) early, since we'll be off to camp next week with our fantastic group o' yutes. And on that note, I'll dive right in, saying I'm thankful for:

The aforementioned youths! We have a great bunch of kids in our youth group, and it's been a fantastic blessing to both get to know new ones every year and to see the others mature as their 3 year stints with us go by.
Continuing on that theme: the entirety of our church. Scroll down a few posts and you'll see a great example of why. Couldn't ask for a better, friendlier, or more supportive group of people.
Cake mixes and pudding (hey, this doesn't have to all be deep). Take 1 yellow cake mix, add in a pudding mix to the batter (lemon and white chocolate are quite good), and you've got an extra-yummy cake w/o much work.
My family. Yes, it's a cliche, but I can hardly leave it off. The upbringing I was given by my mom, and the support that's now provided even over the long distances, just can't be beat. And my "newer" family (aka C's side) has made me feel as welcome as can be, to where they all feel like long-time friends & family as well. (Wait, we've been married nearly 10 years now, so I guess that is long-time. Yikes!)
Winning the cribbage tournament in Grand Forks. Because it's also fun to beat said family on occasion. (High-five, Ross!)
The Internet. Beyond the typical reasons for which a geek like me can list (astronomy & gaming blogs, anyone?), there's the fact that its existence means I can have a job where I can still work with the same great group of people that I did TX, and will still be able to do so when we go away for E's therapy. And on top of that, E can video chat with her "sussern gramma"!
The thus-far mild winter. Because I am not thankful for needing a snow shovel. To all my southern friends I say: snow is nice for the first month or two. The next 4-5... well, it's no coincidence that no one seems to visit us mid-winter. That is, with the exception of my parents & brother, who all vowed to never do that again.
Last but most of all: my 2 girls, young & even younger! (Brownie points: +1)

And now, 2 more things I'm thankful for are calling: Tivo & college football. All we need is some turkey, and it'd be just like Thanksgiving!

Bonus Points Day

2009-11-20T15:29:00.003-06:00

(We do not have Sonic up here in Maple Leaf land. That fact alone almost kept us in Texas...)

Friend of a Friend of a Friend of a Friend...

2009-11-19T10:28:00.004-06:00

Blogland is a funny place. Funny in a "small world" kind of way. A link to a link to a link gets you straight to a blog worthy of stalking.

My friend Andrea, who has a daughter with CP, has a great blog. In one of her posts, long ago, she mentioned her friends, Amy and Josh, who were on their way to Africa to bring home their son Silas. A few months later, I noticed that my Bama-friend, Laura, had MET Amy at a bloggy-get-together for those who have adopted children from Ethiopia. Fun times!

I usually like to keep my blog-stalking on the down-low, for fear that the author will think I'm a freakshow, but today, Amy has lured me out of my crazy shell. She's enticed me with a PRESENT. Oh, materialistic and weak am I!

BUT, it's clothed in the premise of a "good cause". So, I feel a bit better. Amy and Josh are in the process of adopting their second baby from Africa. They are naming her Olive, which I LOVE LOVE LOVE. They are also trying to raise a bit of cash for their travel expenses (I hate how expensive adoption is, grrr). The creator of this AWESOME jewellery is giving a portion of her profit to the Bottomly's, to help with adoption costs. LOVE IT.

Amy, bless her heart, is going to give away a necklace to a blogger who mentions Junk Posse Jewellery on their site. I want the necklace. Tee hee!

The stuff is AMAZING:

I love it all. And I love the precious babies that have come into my life as a result of adoption. My heart is smiling.

See, sometimes a little stalking can be good for the soul.

Send it!

2009-11-18T14:41:00.007-06:00

This is definitely being sent to our (okay, RICHARD'S) federal representative. LOVE this!

Dear [ Representative / Senator ]:

More than 47 million Americans— disproportionately African-Americans, Hispanics and the working poor— are uninsured. As a result, they lack ready access to care, which causes unnecessary deaths, increases morbidity among the acutely and chronically ill and results in higher costs. This situation is immoral and intolerable.
I call upon the U.S. Congress to enact bipartisan legislation that assures access without barriers to affordable, basic, quality health care for all.

Specifically, I urge Congress to:

Support a health care system in which risks, costs and responsibility are shared by all. There is enough for all, if all share health care resources, recognize limits and seek to be caretakers of health. We can learn from the experience of countries with exemplary records of assuring access and controlling costs. In these countries, health care is seen as a human or social right that helps bind a society together. Those with means help to shoulder the cost for those without, and costs are controlled with cooperative bargaining power.

Eliminate financial and health status as barriers to health care access. My faith tradition teaches me that special care is to be extended to the weakest and most vulnerable members of society. Health care for all joins the United States with all other developed countries in providing basic, affordable health care for all.

Strengthen public health systems in order to help create healthy communities. In order to effect long-term improvement in our nation’s overall health, increasing access to health care must go hand in hand with improving public health and reducing poverty. Public health measures will help eliminate unhealthy environmental factors, provide education and incentives for healthy life-style choices and inform the public about the effectiveness and efficiency of health care measures.

Support and strengthen public insurance programs for vulnerable populations while comprehensive reform is being enacted. Programs such as Medicaid and the State Children’s Health Insurance Program (SCHIP) currently provide health coverage for more than 50 million individuals— including children and adults in low-income families, the elderly and the disabled. Still, many people who need coverage do not qualify and many states and programs don’t cover needed services.

Openly address issues of quality, efficiency and limits. The quality of health care delivery is profoundly uneven— even for those with insurance— and sizable health care costs are due to advertising, administration and redundant tests. No system can afford to give everyone every medical procedure or treatment that they want or from which they might benefit.

As a Christian, I believe that a biblically-compatible health care system will celebrate God’s generous provision of resources, assuring enough for everyone when shared equitably by all; promote the flourishing of the whole community, including each of its members; and protect the well-being of the weakest and most vulnerable members of society.

Sincerely,
[ Your Name ]

Braid-y Bunch

2009-11-17T19:17:00.002-06:00

I cannnot express how much I love my childcare provider. LOVE her. Here is just another reason why:

When I dropped Ellie off at 8:00 in the morning, her hair was strewn into a quick (read: kinda ugly) ponytail. This is what she looked like when I picked her up:

PRECIOUS!!

The Day After...

2009-11-16T19:32:00.006-06:00

Ah, the emotional and physical exhaustion left from yesterday has passed (I love me some Tylenol PM!), and it's time to start a new week.

Several people have asked me how our fundraiser went. Some have been bold enough to ask how much we made, and the more "polite" folk have been hoping I'd give up that information without being questioned.

So, drum roll....

$7200.

GOD IS GOOD!

It still overwhelms me. A couple bowls of a soup and a piece of pie. That's all we gave people for lunch. And they gave us so much more. SO MUCH MORE.

I opened one envelope last night. It only took one for me to realize that I couldn't do it. I could not open each envelope, take out the check, read the name on the upper left hand side, then view the dollar amount. I couldn't separate my head from my heart, the numbers from the names. I didn't want to know who gave what.

So, I made Richard do it. All of it. He's amazing that way.

I just know the final figure. And I know I am thankful. Thankful for the person who folded up a $5 bill into a teeny-tiny piece that fit perfectly in the bottom corner of the envelope. Thankful for the people who probably wrote checks for hundreds of dollars. So very thankful.

Here's what a church-gym full of love looks like:

And here's why they love:

Beyond Thankful

2009-11-15T18:17:00.002-06:00

Fundraiser-lunch today at church. I'm feeling so very overwhelmed with gratitude. There are no words. So, in lieu of, here is the video montage I made for our little "sharing time" in the church service this morning.

Make video montages at www.OneTrueMedia.com

I'm going to exhale now...

Saturday Stories, Part II

2009-11-14T19:25:00.003-06:00

Ellie was not a “good” baby. Oh, she was insanely cute, but she was reminiscent of that nursery rhyme character, Curl-Gurl:

There was a little girl who had a little curl

Right in the middle of her forehead;

When she was good, she was very, very good,

And when she was bad she was horrid.

Except she didn’t actually have hair until she was 2 years old. Otherwise, though I loved her with every fiber of my being, she WAS pretty horrid as a baby.

(I am certain that someone will read this entry and sigh with indignation, as they judge my mothering as unfit. Oh well…)

Ellie cried A.LOT. And she slept VERY.LITTLE. It was a terrible combo. So terrible, in fact, that my Stay-At-Home-Mom job lasted all of four months. I went back to work and just about kissed Carlin, our fantabulous nanny, every time she walked into the door. She was so wonderful with Ellie and *I* was a much better mother after “escaping” to the adult world for a few hours each day.

The problem was that Carlin wasn’t around at night. She wasn’t there to take over at 3am, when Ellie had been crying for an hour and no sign of tiring was in sight.

Richard and I were REALLY tired. REALLY, REALLY tired.

So, one morning, after an extremely tough night, I came up with a brilliant idea: Let’s call in sick to work (because lack of sleep can definitely count as sickness), and when Carlin comes to the house, let’s go to a hotel room and sleep.

Yes, SLEEP.

Richard was game. So, I got on the phone. I called the Comfort Inn near our house, thinking it might be the cheapest local option. The front desk clerk answered and I said,

“Do you rent rooms for half-days? We only need a room for a few hours this morning.”

There was silence on the other end of the phone. Eventually, the clerk replied with,

“Um, I’ll have to check on that. Cuz, we’re not really THAT kind of hotel, you know.”

Not only will sleep deprivation make you crazy and sick, it will also make you clueless. It wasn’t till after my glorious nap that I realized what he meant.

I guess his manager didn’t care how they made a buck that day, because we were allowed to rent a room for the morning at half the price. Richard checked us into the room and I remember the clerk looking down at our hands; at our ring fingers. OF COURSE, it just so happened that I wasn’t wearing my rings that day. My fingers were still afflicted with the “pregnancy puff” , and my rings were too small.

Once I put it all together, I realized that the front desk clerk (and most likely all the staff who heard his story) thought that I was a hooker-mistress, and we were renting the room for a few hours on our illicit rendezvous.

Tee hee.

‘Course, the clerk would have been really shocked had he walked into our room at any point during the morning. He would have seen two people, each on their own bed, fully clothed, sound asleep. I’m not even sure I got my shoes off before hitting the pillow.

It was a great nap. And I’m sure we gave a few Comfort Inn employees some good, juicy office-gossip laughs. So, win-win.

And, just for the record, Ellie grew out of her horridness a few months later and was replaced with straight-haired sweetness.

The End

Thanks

2009-11-13T20:06:00.003-06:00

Friday Thankfuls:

1) I'm thankful for my down comforter. I am such a bedding diva. I LURVE me some nice bedding and am a spoiled brat when it comes to 500 thread count or higher. Nothing tops that first blankie-snuggle at the end of a long day.

2) I'm thankful that I made my annual Christmas CD purchase (I allow myself only one per year, otherwise I'd go broke growing my Christmas repertoire. AND, I realize that I should stop buying CDs and join the 2000s by downloading MP3s instead, but it just isn't the same. I am old and I'm learning to embrace it.):

I listened to the CD on the way home from Christmas shopping today and it is everything I hoped it would be. Not country-ish at all.

3) I'm thankful for Dollar Stores. We came home with a TON of stuff to do when Ellie's on quarantine over Christmas (doctor's orders are that we keep her from public places and large gatherings for a couple weeks before surgery, so as to increase her chances of staying healthy). And all for $20. Gotta love cheap junk!

4) I'm thankful for our amazing respite worker/babysitter/friend/teacher (etc, etc), Tess. She did TRIPLE duty this week when a couple of unexpected things came up. She also cared for Ellie on a holiday morning, so that I could help make soup for our lunch fundraiser on Sunday. Seriously. How amazing is that? She is just an angel.

5) I'm thankful that I made this list in under five minutes so that I can join my dreamboat downstairs for our "CSI" DVR marathon date. Gotta love Friday nights!

Peace Out

2009-11-12T13:10:00.006-06:00

While walking to the cafeteria for lunch today, I was brainstorming blog-post ideas. (This blogging-every-day thing is A LOT more difficult than I thought it was going to be. Grump.) I was making some mental notes when all of a sudden I felt a pair of arms around my shoulders.

It was a sweet junior high girl giving me a hug.

She’s a precious one and I gladly accepted and returned the hugging favor. Then she asked me,

“Are you at peace today?”

Okay. What the heck does she mean?

I replied, with my hand making the peace sign, “As in, am I groovy?”

“No, no,” the girl responded, “I mean, are you at peace about Ellie’s surgery?”

Oh, that kind of peace. I should have realized that’s what a THIRTEEN YEAR OLD junior high student, stopping me in the school hallway, on my way to lunch, would have meant by “peace”.

Now, I wasn’t surprised that this girl would ask me questions about Ellie. There are several students attending the school in which I work who either go to church with us, or know of Ellie through their friends. Ellie has become a bit of a celebrity around the school, as kids pray for her and often come up to the library and ask to see the latest Ellie-pictures. PRECIOUS, I know.

Just as I had formulated my response to her question, the girl continued talking,

“I just wanted to tell you that you should have peace about Ellie’s surgery. Because, guess what? I had the same surgery when I was little! And it turned out great! I felt so much better afterward! My parents were freaking out before the surgery, too. But, I know that Ellie will be fine, just like I was.”

Wow, this was new information to me. “What kind of surgery did you have?” I asked

“Oh, I had tubes put in my ears.”

Yes. JUST. LIKE. ELLIE'S.

I stood there for a second, not sure how to respond. On the one hand, I wanted to verbally pinch her for comparing spine surgery with ear tubes. But, when I looked at her lovely face, I realized that she was just trying to help. In a thirteen-year-old way.

“Thank you,” I said. “You’re a sweet ball of encouragement!”

While this dear girl hasn’t a hot clue how different “ear tubes” and “cutting the nerves on the spine” are, she was loving me, loving Ellie. And I really appreciated that. What more could you ask for, really? I work in a school where the kids know and adore my kid. THAT Is a gift.

And, the icing, of course, is that she gave me a blog topic! Sweet thing!

Remembering Summer...

2009-11-11T19:35:00.003-06:00

I've been busy today, on this holiday, making a slide show of Ellie for her big church fundraiser on Sunday. It's been fun going through old pictures and realizing how far Ellie's come.

In the midst of the photo-scrounging, I realized that I still haven't posted pics of "hair-did" Ellie from this past summer. PERFECT opportunity for an easy blog post, now that I'm computered-out for the day. :-)

Thanks to "Southern Grandma" for bringing along her fantabulous camera and taking all these pictures. Richard only has one sibling, a brother, so his mom savours the Princess moments with Jelly B'Ellie, so I'm glad she was here to share it with us!

Is she beeeooooteeful or what?!

Cheater, Cheater, Peanut-Butter-Pasta Eater!

2009-11-10T15:53:00.003-06:00

Today is my Bonus Points Day.

Ever been on Weight Watchers? Then you know all about Bonus, or flex, points. Every food is assigned a point value. Weight Watchers then gives you a "total points you should consume in one day" limit, and you're supposed to stop eating once you've hit your point max. BUT, they also give you some "Bonus Points" which can be used for cheating at any point during the week.

I LOVE me some bonus points.

I'm using those blogging bonus points up today. I'm tired. I have plans tonight. I don't feel like writing.

While I'm using my Blogging Bonus Points to bypass a useful post today, this is what I'd use my points on in the real world:

Thai Chicken Pasta from Cheesecake Factory and

Pudding cake, straight from the kitchen of Chrystie's Mom.

Mmmm!

Say Cheese!

2009-11-09T14:34:00.004-06:00

How the heck did she get old enough for SCHOOL pictures?! Or, maybe the better question is: When did they start taking pictures in NURSERY school?!

Whatever the case, the pics turned out better than I expected. Ellie is notorious for the "deer in the headlights" look when posing for photos and a stranger is behind the camera. *I* wasn't there to scold her and/or bribe her with Princess Stickers either. Not sure how it was accomplished in MY absence, but Miss R, Ellie's teacher, not only got her to look at the camera, but her tongue is inside her mouth and she's curling up the sides of those lips in a semi-smile. What happened to my baby NEEDING me for all these things?!

Her class picture is beyond precious, but I wasn't sure if it was against the cyber rules to post it. I'll err on the side of caution (and not wanting to be beaten up by some of those crazy mama and papa bears!) and keep it from my blog. BUT, I will sheepishly admit that I was so happy that Ellie was sitting in a regular chair, just like the other kids, lookin' like a typical 4-year old. AND, she wasn't the only kid with glasses either! Petty observations, I know, but sometimes I'm a bit crazy that way.

Day of Rest

2009-11-08T17:18:00.002-06:00

This is literally the only picture I have of non-newborn Ellie sleeping. And certainly the only picture I have of her sleeping in the car. The girl is hardcore during the day. We flew back from Alabama at midnight last winter and she didn't sleep a wink. She kept hitting her face and saying, "Don't sleep!" when she started dozing off. Crazy kid.

Happy Sunday!

Saturday Stories, Part 1

2009-11-07T12:13:00.002-06:00

Thirty posts in thirty days requires some creativity. So, welcome to the first edition of “Saturday Stories”. Funny stories. “You had to be there” stories. Pathetic stories. You never know what a November Saturday will bring.

The Day The Internet Sucked
Written by Chrystie
Pictures by Richard

It was December, 2000. We had been married for 4 months. Richard had received a job offer from an engineering firm in Dallas, Texas, and we were pumped to spread our wings and act like adults. We were living in Alabama at the time, in the city where Richard had essentially grown up. It was the first time either of us had ventured beyond familiar “Mom and Dad are only a few miles away” borders and we were determined to make the move OURSELVES. We were young, able bodied and ready to rock ‘n’ roll our way to the Lone Star State.

Money was tight. We were both in our early 20s. I had graduated from university only 3 months earlier. We got a nice “moving expenses” check from Richard’s new employer and we wanted to pocket as much of it as possible (ah, the greedy and stupid days…).

Our rent in Alabama was $385 per month. Two bedroom apartment with a fireplace, an in-suite washer and dryer. It was SWEET. We knew that living in the “big city” of Dallas would be a bit more expensive, but we wanted to keep our costs under control.

So, I found us an apartment on the internet. $600 per month for a one bedroom place. Surely, for that kind of money, the place would be decent. SURELY. And the apartment appeared fantastic….on the internet pictures. Clean. Relatively upgraded. Nicely landscaped courtyard. Perfect.

Since a pre-move trip down to Dallas would have bit off a portion of that coveted moving expenses check, we opted to sign a contract on the apartment without actually seeing it in person. Have I mentioned we were young and stupid?!

I probably should have picked up on the leasing agent’s tone of voice when she asked multiple times if I was “sure that I wanted to sign the lease without looking at it” or if I “understood exactly where in the city this apartment (was) located”.

I was reading the map as Richard was maneuvering our big Ryder van. We found our new apartment’s street and started making our way down it. At first, it looked okay. But, as we crossed a few railroad tracks and continued our drive south, the neighborhood changed. Not for the better. I’ll leave it at that.

It was 6:00pm when we arrived at the apartment complex. We had been driving for thirteen hours. We were tired. We were overwhelmed. We were in a really big, strange city. We were driving a massive moving truck. We didn’t have it in us to change our minds. We had signed a six-month lease and that was that.

We had a dog at the time. His name was Charlie (RIP, sweet Chucky). He was ready to get out of the truck. So, first thing I did once we got our apartment keys was tie Charlie up in the kitchen, with a bowl full of food within his reach. I went outside to help Richard park the big yellow truck, and by the time we reentered the apartment 10 minutes later, Charlie’s bowl was CRAWLING. Cuh-rawling. The cockroaches had overtaken his food bowl and the poor cocker spaniel was as stunned as we were.

That was the first “Oh. My. Word.” moment.

There were roaches in the bathtub. There was blood stains on the carpet. There were bugs in the freezer. The courtyard was riddled with cats and dogs. I *think* they were resident’s pets, but who knows.

When Richard and I were about half-way through moving our stuff from the truck to the apartment (remember, we were young and stupid and figured that paying for moving help would be too expensive), a woman stopped me. She introduced herself and then said, “Are you sure you want to live here?” When she heard that I didn’t have a job yet, she said, “If your husband ever has to work late, please come to my place and hang out. You do NOT want to be in one of these apartments by yourself at night.”

Now, I was beyond the “Oh. My. Word” moment. It had turned into a “Get me the craperoozie outta here!” moment.

I cried that entire night. All that independent adult strength was eaten up by our new cockroach neighbors. I boo-hooed to Richard for hours and, for the first time ever in our new marriage, gave him an ultimatum.

Move out of this apartment or I’m going to spend the next six months in Canada, with my parents.

The next day, we signed a new lease in an apartment complex that turned out to be our home for over three years.

A few months after the Roachy-Apartment drama, some of our Alabama friends came to visit. They wanted us to take them to the infamous complex so that they could see with their own eyes just how bad it was. When we turned into the parking lot, we noticed that all the apartment doors had bright green papers stuck to them.

City of Dallas Notice: This complex has been condemned and all residents will need to move within four weeks.

Hi yi yi! If the City of Dallas thinks the place is a mess, it’s BAD. A few months later, we popped by there again and bulldozers had already started demolishing the complex.

Moral of the story: I really, really don’t like roaches

Thank Goodness It's

2009-11-06T17:37:00.005-06:00

2. PLUS THIRTEEN (55 f) out today! Perfect weather for Richie's front door-fixing adventure tomorrow.

3. a home game tomorrow. I dunno, y'all. I don't feel good about this LSU game. Why does Florida get Vandy and we get LSU? Not fair (unless we win...then it'll be suh-weet as The Tide jump up the BCS ladder!).

4. a four-day week upcoming. While I will definitely take time to remember the soldiers who have given and continue to sacrifice their lives in service to our amazing country, I am selfishly glad to have a day off....to make soup! Our unbelievable church-family is throwing us a Soup Lunch fundraiser to help offset our surgery and therapy costs. I can't even begin to express my love for them without shedding tears. And I don't feel like boo-hooing today, so I'll just leave it at that.

5. number five, because I really don't feel like blogging today. HA!

Clap On, Clap Off

2009-11-05T14:37:00.002-06:00

Sometimes, okay most times, my feelings make no sense. I wish I could contain what spews out of my heart. I wish I could be the master controller of the emotional on-off switch.

I’m surprised at what makes my heart sad and jealous sometimes. When I type it out, and read it aloud, I KNOW that it sounds ridiculous. I KNOW that it’s nonsensical. But it’s real and raw and that’s the way I roll on this blog.

You know what made my heart pang with jealousy today? Hearing the news that a sweet 2-week old baby is home from the hospital after her heart surgery. Now, most everyone would expect me to say that I’m envious of people whose babies are healthy and whose birth experiences were heavenly. But, to be jealous of parents whose baby almost died at birth? THAT is ludicrous!

Believe me, I know that.

Of course, I’m not covetous of their hospital experience. I am empathetic, because I know how heart-wrenching and devastating it can be. I am, however, envious that their baby underwent a successful surgery and, according to doctors, will have no side effects. The sweet little girl will grow up just like her healthy older sisters. She will walk and run. She will talk and learn to read. She will get married and have her own healthy babies.

Or something close to that.

And I am so jealous of those parents, who were able to leave the hospital for good.

I have also become accustomed to skimming the topic headings of my “Parents of Children With CP” message board. Rather than conjure up those nasty feelings of resentfulness, I avoid any threads with “My Kid Took His First Step Today!” or “The Doctor Said My Daughter’s CP is Mild!” titles. My heart writhes with jealousy with I read those words.

Of course, after the envy, my heart and head are quickly flooded with shame. What sort of terrible person begrudges those who have sat in the same NICU, in the same neurologist’s office?

I want so badly to replace the jealousy with joy, the envy with excitement. I want to rejoice when sick babies are made healthy, when kids with cerebral palsy walk independently. I want to scream with delight when a brain injured child is released from speech therapy because she’s now “caught up” with her language.

But how do you force your heart to feel something it doesn’t?

My saving grace is that these feelings of jealousy are usually short-lived. I have learned to shut them out and pull that burning fork of envy from my butt. I have learned to pray for compassion and a soft heart.

I have not yet fully acquired the ability to accept my lot, but I’m working on it. It was not in “the plan” for me to leave Las Colinas Medical Center with a healthy baby or a working uterus. It was not in “the plan” for me to hear the words “mild” while sitting in the neurologist’s office. I don’t know why. I wish it was different. But it’s not.

And, more than anything, I don’t want my perfect Ellie to be fight these demons of jealousy. Her mere presence gives me the determination to pray more, to accept better, to envy less. So that maybe one day I will hear the news of a baby’s hospital release and be filled with JOY. And Ellie and I can do a little happy “dance” when we see one of her therapy buddies running and jumping.

THAT’S what I want for our hearts.

Flushed With Happiness

2009-11-04T19:15:00.003-06:00

I've had this post ready for a while, but I've been waiting for the "safe" moment to publish it. I just really, really didn't want to jinx it.

But, today is a good day to announce to the cyber world that...

...MY BABY IS POTTY-TRAINED!!!

It's been in the works for a while. A looonnnggg while. There have been days when I honestly thought that it might not happen; that I'd have to learn to revise yet another dream. I wasn't sure if Ellie was even physically able to control her bladder. A lot of muscles are used when toileting.

But, all summer Ellie's been sportin' the panties (or, "dankies" as she calls them)! She hasn't had an accident in months, so I think we've really crossed the threshold.

Oh, how I wanted this for her. Oh, how I wanted this for me. It's such a big step towards independence. It's also a fantastic indicator of how she's able to control some of her muscles, even when they work against her so much of the time. And her butt is so darn cute in those Princess undies!

The dreamer in me is wondering about the next step. I truly believe it's possible that Ellie will one day walk herself to the bathroom and use it ENTIRELY INDEPENDENTLY. I believe it. And that will be a good, good day. She'll likely prohibit me from posting it or publicly proclaiming it to the world, but I'll be rejoicing in my heart.

So, here's to my rock-star, toilet-using little girl!

Sweet girl is going to KILL me one day for posting this pic, I know!

Three Little Pigs

2009-11-03T19:21:00.003-06:00

I got this catalogue in the mail today.

Now, I love me some MCC (Mennonite Central Committee). For those who are unfamiliar with this organization, I consider them to be da bomb of international charities. My Mennonite roots smile with pride, but more than that, I really appreciate MCC's operating budget and the super-high percentage of funds that go directly to "the people".

But, this is more about the catalogue. I know that World Vision sends out similar mail. I'm sure a bunch of other international charities follow suit.

Buy a cow for a family. Dig a well for a village. Sponsor a medical clinic.

All fantastic things. All things that mean so much more than a SpongeBob SquarePants Play-Doh set or an MP3 player with cushion-ey earphones. All things that are much more meaningful than stuff.

But, at what point does the giving of a gaggle of geese become a little over the top?

We are really scaling down our Christmas giving this year. I don't think we'll spend more than $20 on Ellie. Richard and I won't be buying each other gifts AT.ALL. The only other kid that makes the gift list is sweet nephew Zach. But, there are the grandparents and therapists and caregivers who are so very important to us, and I really want to say thank you to them through a small gift.

But, does a cheap Wal-Mart Christmas card and a handwritten note saying, "We bought a pig on your behalf!" express Thank You?

Maybe it does. Maybe I'm being too skeptical. Maybe I like Starbucks gift cards too much.

How do you strike a balance between "commercialized" Christmas gift-giving and "unselfish" gift giving?

This Won't Hurt a Bit...

2009-11-02T13:22:00.005-06:00

Last week, we had the glorious opportunity of spending two hours outside, making new friends and entertaining Ellie with “games that can be played while sitting in the stroller”. We were standing in line, waiting to get our H1N1 flu shots. So were a lot of other people. A lot of angry, disgruntled and impatient people.

I had to bite my tongue quite a few times, especially when eavesdropping on a couple of mothers standing behind us in line.

“This is so ridiculous. Which idiot planned this set-up? *I* could have done a better job!”

“They should let us go to the front of the line! We’ve got (able-bodied and apparently healthy) kids with us!”

“It’s like we live in a third world country!”

“I’ve never been subjected to something so barbaric! I can’t believe they’re making us wait so long for a *&%%^# flu shot!”

And so on and so on…

I wanted to turn around and, with controlled anger, pipe, “Aren’t you THANKFUL that we live in a country where this vaccine (and so many others) are available?! Aren’t you THANKFUL that this will probably be the only time you wait in line at any sort of clinic or doctor’s office for the next couple of years?!”

But, Ellie was with me and I didn’t want these crazy mamas to go off and get violent. So, I stayed silent. And then I smiled sadistically as I watched their children throwing tantrums and cussing , while my daughter played happily with her laptop, sitting contently in her stroller.

While I fall short MANY times, I do make a conscious effort to convey thankfulness and patience, especially while in the presence of Ellie. I think that’s one of the reasons why she’s such a happy little chickadee. I notice Ellie’s demeanor change immediately when she senses MY frustration.

So, to self-righteously show-up those two you-know-what’s in the flu shot line, and to model a “good attitude” to sweet Ellie, here is my Top Five List for today (because I have made the crazy promise to blog every day for an entire month, I have given myself the leeway to cut the “Top Ten” lists down to five. HA!):

I am thankful for:

1. HDTV. I actually scowled at Richie when he first signed us up for the HD cable. I thought it was a complete waste of money (and, really, it is). BUT, watching those football player's butts in lycra pants, er, I mean GAMES on HD is da bomb.

2. Daylight at 8:00am. I know that it will be short-lived, but it’s so much easier driving to work in the LIGHT.

3. Such a fun Halloween. It was COLD and Ellie about froze her little fingers off, but she had SO. MUCH. FUN. It gets better every year! Here’s my little pirate (complete with a Canadian Halloween staple: big, bulky, ugly, non-costume matching winter boots):

4. My youth group. Amazing and precious young ‘uns, they are. I am hardly able to keep from sobbing out loud when they pray for us and for Ellie. They are prayer WARRIORS. Hardcore. And they love hardcore. They bless me every second of Thursday night and beyond.

5. Caller ID. No explanation needed.

Just When You Thought I Wasn't Coo-coo-foo-foo Enough...

2009-11-01T19:22:00.004-06:00

In my 29 (!) years, I have learned not to publicly commit to something I can't follow through with. Like dieting. NEVER proclaim to the world that you're on Weight Watchers because then everyone is witness to your failure when you eat three pieces of birthday cake at a family party.

But, today, as I bite my fingernails with nervous anticipation, I am declaring to the blog world that I am going to post something EVERY DAY of November.

It's insanity really. November is a freakishly busy month for me, but maybe some blogging will be good therapy. Maybe I need some booty-whoopin' to get back into blogging shape.

Whatever the case, you'll be "seeing" a lot of me in the next 30 days!

Till tomorrow...

Excuses, Excuses

2009-10-27T18:55:00.002-06:00

I need to blog in a bad way.

Oh wait a sec, YOU know that.

I know I sound like a broken record/tape/CD/MP3, but once again, I just haven’t found the mental energy needed to spew my feelings onto cyber paper. In the dead of the night, my mind is racing with all sorts of blogging ideas, but when it comes to the next evening, when I actually have time to verbally regurgitate, I just can’t. I’m tired and worn.

Life isn’t BAD, it’s just emotionally challenging right now.

This past Saturday I had a wake-up call. Or, perhaps a wake-down call. It was 2:30 in the afternoon when I suddenly realized that I had COMPLETELY forgotten about a morning meeting. This meeting was written on the calendar, I had confirmed to several other people on the committee that I would be attending, Richie and I had talked about it a couple of times during the week. The meeting started at 10:00am. I remembered at 2:30pm. Who does that?! It scared me, actually. If I forget about an important meeting, one that I’ve had on the calendar and known about for weeks, what else could I be forgetting?

I chalk it all up to preoccupation. And saturation. My head is both overloaded and in its own world. I am in planning mode. I am in anxiety mode. The next thing I know, I’m chewing my nails, watching Alabama kick yet ANOTHER field goal, when I remember a meeting that I was supposed to attend six hours earlier…

That said, the planning part of my preoccupation is going really well. I have officially been granted a seven-month leave of absence from work and my amazingly qualified and precious replacement should be hired this week. We’ve got accommodation options for Vancouver. Ellie’s post-op intensive physical therapy is pretty much secured. Planning the logistics gives me some peace of mind (read: makes me feel like I’m partially in control of something). It provides distraction from the worry.

So, there’s where I’m at these days.

I was going to include a top five list in my post today, but I think I’ll leave that for tomorrow. Hmmm, perhaps I’m clinging to lists because they, too, make me feel more organized and less chaotic.

OCD much??

I’ll leave you with a picture that also calms and warms my heart. Precious cousins with an unbelievable uncle and dad.

It's Real

2009-10-14T18:31:00.004-06:00

From: H <h@cw.bc.ca>
To: Chrystie <chrystie@gmail.com>
Date: Wed, Oct 14, 2009 at 5:48 PM
Subject RE: SDR Appointment

Hi Chrystie,

The physio is aware of the surgery date of January 5th.

Pre-operatively, you'll need to see the following people/areas on January 4th:

Pre-Admission Clinic app't sometime in the morning - they will call you with an appointment time.

Dr. Steinbok at 11:30 AM

OT & PT at 1 & 2 PM

Regards,
H

Everywhere

2009-10-13T19:52:00.005-06:00

I need to blog. My head is everywhere. EVERY.WHERE. Still waiting to hear from the orthopedic surgeon regarding Ellie's hip x-rays. If he feels they look okay, then SDR (spine) surgery will be scheduled for January. It is all-consuming. I envision Ellie waking up after surgery in the hospital bed. I panic in my head. In my nightmare, she's in pain and crying out to me, pleading with her mommy to make it stop. I pray. Every second it seems. For wisdom, for strength, for guidance, for angelic doctor-hands. I watch football and fade away for a few hours. I hear Ellie cheer, "Roll Tide Roll!" and it makes my chaotic heart smile. I work. I love it there. This last weekend, I built a States-side fortress around my heart; a fortress made up of life-long friends and family. It was a delightful break.

See, everywhere.

I can't even communicate my thoughts on cyber-paper. Other than to say that I just want the best. Because, well, just LOOK AT HER:

Vite, Vite, Allons-y!

2009-09-28T20:10:00.002-06:00

Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh.

That’s the sound of me exhaling. The sound of a long, exhausted sigh.

Today was one of those days where I question my parenting decisions and abilities. I don’t say that in an attempt to solicit gold star stickers or a chorus of, “You’re a great mom, Chrystie!”s. It’s just honesty.

I am feeling overwhelmed. My brain is mushed by chaos and the result is a feeling of instability and a wobbly heart. I can’t help but wonder if Ellie is feeling it too. Or, at the very least, feeling that unsettling “Mommy’s tired” tingle.

Pre-2005, when I knew EVERYTHING about parenting, I vowed that I would not be one of *those* parents. You know, the kind who spend their entire day carting their kids around to one activity or another. The kind that over-schedule their young ‘uns and come across as chickens with their heads cut off.

HA! I am the runaway (Rabbit?) chicken!

This new schedule is killin’ me. A glimpse at our week:

Monday morning: Daycare
Monday afternoon: Preschool
Tuesday morning: Therapy
Tuesday afternoon: Daycare
Wednesday morning: Daycare
Wednesday afternoon: Preschool
Thursday morning: Therapy
Thursday afternoon: Grandma’s
Friday morning: Speech Therapy
Friday afternoon: Often a doctor’s appointment or therapy at Children’s Hospital.

Keep in mind, of course, that all therapy appointments require at least an hour drive one-way. Today, during my “half-hour” lunch break, I had to pick up Ellie from daycare, then drop her off at pre-school. All the while trying to not spill my tuna salad in the car, while I feverishly ate.

And the one thing that Ellie does NOT do is hurry.

While the other parents are encouraging their 4-year-olds to “run into school” so they won’t be late, I am wiping the sweat off my brow as I wait for my daughter to take very slow, carefully maneuvered steps. Ellie can’t be hurried. Oh, she can be encouraged to avoid distraction, but she walks at her own pace. Because she’s WALKING, regardless of speed, I am thankful. INCREDIBLY THANKFUL. But also stressed.

Everything feels so rushed, chauffeuring Ellie from one place to another, and then, just when we’re going to be late for school or an appointment or another therapy session; just when every fiber of my being wants to run and hurry, I have to stop and wait. Wait for Ellie to walk up a ramp. Wait for Ellie to rest her legs when she’s tired. Wait for Ellie to learn how to steer her walker. WAIT.

While a part of me cherishes the patience that Ellie has forced me to acquire, I am also frustrated. Not at sweet Ellie. At myself.

Why can’t I just be okay with being a few minutes late sometimes? Why do I feel so responsible when I take 5 extra minutes on my lunch break? Why do I feel like everyone is annoyed when they have to wait for Ellie to make her way through a doorway and they’re unable to squeeze by her? Why can’t I just savor? Savor the fact that my daughter is walking. Savor the fact that while she’s walking, she’s asking me a hundred questions (“Who’s walking in the door with me, Mommy? Am I going to school? Who am I going to see today? Are my friends going to be at school?”). Savor her beauty.

I’m not sure what the answer to the scheduling problem is. Every place we cart Ellie to and from is important. Therapy is a no-brainer. ALL of our therapists highly recommended starting Ellie in pre-school this year. My employment is kind of important, especially since aforementioned therapy and preschool aren’t free. What gives?

I am hoping and praying that today was just a bad day and that part of my frustration comes from the newness of this schedule. As we settle into the new routine, we’ll all feel less overwhelmed and more grounded.

For tonight, though, I take comfort in the goodness that is the Cowboys on Monday Night Football. Go Boys!

Corn On the Cob, A Therapy Wedge and Some Thoughts

2009-09-20T13:34:00.003-06:00

So. It's been nearly a week since our appointment. Breathing room. Thinking room. Nail-biting room.

Richard and I are 90% sure that we will make the SDR (spine) surgery appointment within the next few weeks. In fact, I think I will email the surgeon's office tomorrow and see what his January schedule looks like (because if *I* were a neurosurgeon living in Canada, I'd take winter off to soak up some Hawaiian sun rays...). We are thinking that January might be a good time.

All of this is quite dependent on what her hip x-rays show in 2 weeks. If there has been no change in the past year, then we probably have more time to play with. If her right hip has become even more dislocated, but not to the point of warranting hip surgery, then we're under more of a time crunch with the SDR, because we'd want the spine surgery before too much damage is done to the hip. If the x-rays show really bad dislocation, we may have to go back to the drawing board and consider hip surgery BEFORE (and, perhaps instead of) the SDR.

The bottom line is that we're really hoping and praying that her hip x-rays look "good for Ellie" in a couple of weeks. Pray for that.

My heart is doing okay. It palpitates at times. It beats happily at other times. It's all so scary. I feel so excited about the possibilities, but terrified of the means. I work hard at avoiding the slippery slope that is the "what if...?" game. We're just trying our best to make the right decisions and trust that God is guiding us in the right direction. I throw my weary arms to heaven in submission, because I can't walk this scary road on my own.

It's helped that this week has been SO. BUSY. Work is kicking my butt and it's actually quite comforting to think about non-Ellie stuff for 8 hours each day.

And my sweet baby started preschool last week! She did fabulously. Ellie has a one-on-one aide, which is awesome. There's also Play-Doh, a Thomas train and singing. Needless to say, the girl is lovin' it!

THANK YOU for your love and prayers and for listening to my wonky rambling! I hope that I'm returning the love, whether by thought, blog-commenting, emailing, phoning or face-to-face contact. I have found myself to be ridiculously self-absorbed these past few weeks and for that, I apologize.

So, to start off a new week, I leave you with a few pics of Ellie eating her first corn on and cob and having some therapy fun on the "wedge" (working on her balance and trunk strength). Kisses to you all!

What a Day....the Quickee Version!

2009-09-14T20:53:00.002-06:00

My oh my. This post has to be shorter than me because I am seriously about to lose all brain power. I just felt compelled to update, as so many of you have prayed for us today.

First of all, ELLIE IS AMAZING. Every doctor and therapist commented on her demeanor and how easy she was to handle. I think she's just really used to people examining her, but I can't help but be SO. PROUD. Though, when she announced to the neurosurgeon that she "just farted", the pride was crushed a bit. HA!

We saw the orthopedist first. He's the one that would operate on her hips and/or tendons. We were literally in his office for ten minutes. He eagerly declared that Ellie was a "superb candidate" for SDR surgery.

Next, we saw the physical therapist. We were with her for over an hour. She worked Ellie HARD! At the end of our appointment with her, she said, "I have to admit that I'm on the fence..." She was concerned about Ellie's right hip, which we've been keeping an eye on. She said that Ellie may have to undergo right hip surgery even with SDR. Sigh...

Lastly, we saw the big Kahuna, Dr. Steinbok. He's the neurosurgeon who would be performing the surgery. We were in his office the longest. He had a good, thorough look at Ellie and at the end of it all he, without hesitation, recommended that Ellie undergo the surgery. He said it would be "possibly life-changing". He predicted that her criss-crossing would be either eliminated or greatly improved, which, if you have seen Ellie walk, is a HUGE encouragement! He wasn't sure if he could fix all of her hip issues, but the surgery would definitely keep her from going under the knife for other orthopedic procedures. The amazing thing is that he performs the same less-invasive procedure as in St. Louis! He even studied under Dr. Park, the "famed" BEST SDR surgeon in the world. Yet, instead of paying $40,000 for Dr. Park to operate on Ellie's spine, this surgeon would do it for "free" (don't even GET me started on the merits of universal healthcare today....WE ARE SO BLESSED TO LIVE IN CANADA!).

Dr. Steinbok pretty much inferred that, as far as he was concerned, we could make an appointment for the surgery today. We weren't ready to do that, but, wow, are we encouraged! AND SCARED. Like crap.

So scared, in fact, that if I write in more detail, I may cry. I don't want to cry. I just want to eat the pick-up food that Richard so preciously walked a couple blocks to get (LOVE downtown Vancouver!). And the special treat he just surprised me with: a box of chocolate love from the Cupcake Factory! (LOVE Vancouver!)

THANK YOU so very much for your love, prayers and support. I nearly boo-hoo'ed when I read my blog comments and emails this morning. I felt the love!

More later...

LOVE YOU ALL!

Vancouver

2009-09-13T15:56:00.007-06:00

Why did I not know that Vancouver is a pretty awesome place? We've had a ton of fun exploring downtown! Ellie absolutely LOVED walking by the water and watching the sea planes, sea gulls and MASSIVE boats. I don't think she gave a ding-dong about the mountains though.

Cute kid.

Appointment is tomorrow (Monday). PRAY!

Tummy-Cocoon

2009-09-09T10:16:00.002-06:00

Butterflies. Not the pretty kind that fly around in the garden, or the type of stickers that Ellie sometimes chooses to put on her potty chart, but the gross kind. The kind that lead to vomiting. The kind that lead to heart palpitations and tears. I’m trying to keep them out of my stomach, but I’m not always successful.

I’m just really nervous about Monday.

Have I blogged about our upcoming weekend? Either way, I should spill the butterfly beans.
We’re off to Vancouver on Friday. Saturday and Sunday will be nice little exploration days, checking out the mountains and the ocean and the Olympic venues. Monday, though, is the real reason why we’re going out west: we have an appointment to see a pediatric neurosurgeon at BC Children’s Hospital. We’re meeting Dr. Steinbok to discuss Ellie’s candidacy for SDR (ie: spine) surgery.

And, there come the butterflies again.

Dr. Steinbok is the best in Canada. Our local neurosurgeon, whom we love and trust, referred us to him. Ellie will have an all-day evaluation, which will culminate with a neurosurgeon chit-chat.

I don’t know why I’m so nervous. If Ellie’s not a candidate it won’t be the end of the world. Truthfully, either decision is ulcer-inducing. If Dr. Steinbok turns her down, then I will admittedly be very disappointed. I’ve seen and heard so many awesome reports of how SDR has changed lives and resulted in kids being able to walk. I want that for Ellie SO BADLY. Yet, if Dr. Steinbok DOES suggest surgery for Ellie, I’ll be terrified. SPINE surgery. Not finger surgery. SPINE. And SURGERY. And ONE YEAR of intensive post-op therapy.

Major butterflies.

What I desire most is for the doctors to be wise. I don’t know any of these doctors personally, and I have no idea if they’re the “praying kind”. BUT, I beseech all of you to pray for them. Pray that God will speak through them as they advise and lead us towards MASSIVE decisions.

And while you’re on the ole knees, please pray that Richard and I will feel God’s guidance as we pursue the very best medical treatment for Ellie. Of course we want to give her the best shot at walking, but not at any cost.

Selfishly, I’ll be praying that my heart and tummy can find some peace and that we’ll be able to enjoy our sight-seeing time out in Vancouver and that I’ll be okay with any decisions made on Monday. Hey, it’ll be Ellie’s first time seeing the mountains and first time feeling the (very cold) ocean waters on her feet! I’m going to try to concentrate on those things in an effort to shoe those stupid butterflies away!

Thanks for your love and prayers. Many of you are known to me and my heart swells with gratitude when I think of what you’ve done for me; for us. Some of you are “strangers” who support from afar and I thank you for that too!

I’ll keep ya posted…

Build-A-Bea

2009-09-01T18:57:00.006-06:00

Earlier this week, I thought Ellie and I should go to the mall to see what kind of next-size-up summer clothes we could snag on a great sale. Apparently, I wasn't the only mom who had this *bright* idea.

Needless to say, after maneuvering the stroller, or mama-bulldozing a pathway for Ellie in her walker, we decided it wasn't worth the trouble.

So, Build-A-Bear it was!

This was Ellie's first time at the highly overpriced store, and she really liked it. She was scared of anything that made noise (the "stuffer" and any noise-maker add-ons), but she loved everything else.

At the beginning of the process, I asked Ellie what she wanted to name her bear. Her immediate response was, "Chrystie". I vetoed that one. Her second choice was "Bea". I was surprised by the name, since I'd never heard her use it before, but later found out that my mom's new 3-year-old neighbor girl is named Bea. Cute!

So, here is the building of Bea:

Giving her a post-stuffing bath

Scrub-a-dub-dub

All clean and ready to get dressed

Ellie made her daddy proud by picking a "Red, White and Blue" outfit for Miss Bea

Getting Bea un-nekkid

Ha! Ellie looks quite proud!

Making Bea's birth certificate....luckily, she's got an easy name to spell!

The finished product!

Shoe Prints

2009-08-21T11:03:00.004-06:00

Ah, perspective.

Such a big word. A powerful word. A word that’s become increasingly meaningful to me.

I suspect that as each one of us grows older (and hopefully wiser), we gain a greater understanding of what it means to put things into perspective and find silver linings. I wonder, though, if Ellie has intensified that process of growth for me.

If you’re a faithful blog-reader of mine, then you’re already well aware of my LACK of perspective on the bad days. It’s the first thing to disappear into the gloomy clouds of sadness and selfishness.

Yet, on the good days (which usually outnumber the bad, thank goodness), it’s the little things that tweak my perspective and cause me to find new blessings.

Like shoes.

Dirty shoes.

When Richard and I were first married, I was constantly harping on him to take his shoes off in the entrance. I quickly realized that taking off your shoes when entering a house is not a southern thing to do. Even after a rain storm. Up here in the north, though, leaving your shoes on inside someone’s house is a sign of disrespect. Nine months out of the year, you’d be tracking dirty snow and salt into the house, so as not to upset the residents (read: spouse), taking your shoes off at the door is usually a good idea.

You know who WASN’T scolded for leaving her shoes on inside the house yesterday?

My sweet Ellie.

Rather, I smiled with thankfulness as my baby girl tracked in the mud. Dirt on her shoes and dirt on all four of her walker’s wheels. GLORIOUS.

When I sold a bunch of too-small Ellie-shoes at my garage sale a few months ago, a couple of bargain hunters commented on how clean each pair was. I remember my heart sinking, knowing that the shoes of three-year-olds are SUPPOSED to be grimy, not shiny.

Well, sorry to tell ya, future shoppers, but it looks like any little girl shoes sold at subsequent garage sales won’t be white and shiny! YAY!

(By the way, Richard, you STILL need to remove YOUR shoes…)

Born To Shop

2009-08-14T12:11:00.005-06:00

Until a blog-reader commented on the new video of Ellie at the grocery store yesterday, I hadn't realized Richie-Rich "you-tubed" it. We're doing really well with that whole "communication" thing, huh? :-)

At any rate, here she is, my precious walker-walking girl. She looks to be at the end of her stamina rope in this video, as her steps are a little weary and she's pleading with daddy to put her in the cart. I think she'd already walked through the produce section a few times, so she's probably going on a good 20 minutes of walking by this point. It gives you a pretty decent idea of where's she's at though, sweet girl!

The Doctor Is In

2009-08-13T12:41:00.007-06:00

Now, y’all know that I’m an ardent supporter of President Obama. One of the reasons why I joined his camp long before he was elected was because of his platform. In particular, his belief that healthcare in the United States desperately needed reform. True to his word, the healthcare wheels are a-movin’ in Washington and it’s causing a stir. A BIG stir.

I am thankful that Americans are thinking about their healthcare system. So many of my dear friends have taken medical treatment for granted, and this new dialogue is making a lot of them think about the importance of health care. Before 2005, I didn’t give health care much thought either. But then everything changed.

You know the story. You know how much money we dished out during Ellie’s first year of life. You know that one of the major considerations regarding our move up to Canada was access to universal healthcare.

Now, though, it seems like almost every American is considering their health care and what it means to them. That’s good.

What’s not good, however, is some of the comments I’ve had to filter, as more of my American friends and acquaintances are examining their healthcare options.

I have no problem with people who disagree with Obama’s healthcare reform plan….as long as they agree that SOME CHANGE is needed, and the discord is based on FACT, not heresy or rumors. You’re nervous about “big government”? Fine. You’re concerned about the federal budget? Understandable.

BUT, during the last few months, as healthcare reform discourse has heated up, I have heard many statements that, in my opinion, are NOT acceptable:

It’s not like people without insurance can’t receive care in the United States. If you go to an ER, the staff is obligated to treat you.

It’s true that every person seeking care in a US hospital Emergency Room is required treatment. If you’re unable to pay for this care, you may go bankrupt, but you won’t be made to bleed to death on the ER floor. I get that.

What really irritates me about this comment, however, is how it’s assumed that “emergent” care is the only kind that matters. What happens if you’re diagnosed with cancer? What will they do for you in the ER? The Emergency Room physician will not administer chemotherapy.

Or, what happens if your daughter has cerebral palsy and the only chance she has at walking, even with a walker, is through intensive physical therapy? There are no Emergency Room Physical Therapists. This comment infuriates me because it completely disregards the Ellie’s out there. The Ellie’s whose parents may not be able to afford (good) insurance. EVERY child deserves the chance at walking (physical therapy) or talking (speech therapy) or using utensils while eating (occupational therapy).

People should be encouraged to WORK for their insurance coverage. I’m sick of covering the butts of lazy people!

Oh my word. For true? The first time I heard someone express this so-called “logic”, I almost puked in my mouth.

I have always thought it a ludicrous practice to tie health insurance to employment. Something as important as healthcare should not be affected by your employment status. I know many hard-working people who have, at some point in their working lives, been laid off from a job. Bum luck. The last thing these job-seekers need to be worrying about is their ability to receive medical treatment. I also know many incredibly hard-working people whose employers don’t offer benefits. The car-repair shop owner, who’s constantly putting in 14-hour days, works MUCH harder than I do. Yet, because he’s a small business owner, making $27,000 a year, he can’t afford insurance. I’m sure the people who are “sick of covering his lazy butt” also want their car fixed at the cheapest possible price.

It’s a ridiculous and SELFISH notion.

MY premiums better not go up because I have to pay for other (read: lazy) people’s insurance.

See previous paragraphs.

I think what saddens me the most about both of these statements is the selfishness behind them. I truly feel it’s our responsibility to take care of our own. And by “own”, I mean fellow human beings. The un or under-insured are just as fearfully and wonderfully made as I am. They are just as deserving of healthcare. They are equally entitled to restful nights, free from the worry of how they’re going to pay for their daughter’s spine surgery. As much as I’d like to keep every cent of my paycheck, I am happy to put some of it back into the healthcare pot. To me, it’s just the right thing to do.

Taking care of the sick is the responsibility of the Church, not the government.

Agreed! In a perfect world, we would all be sacrificing our time, talents and money to ensure that every American was as healthy as possible. The Church would provide physical therapy and chemo to those in need. For free.

But we don’t live in a perfect world. And there are people in need of medical treatment RIGHT NOW. Medical treatment that the Church is not providing. Insurance premiums that the Church is not paying. Hospitals that the Church is not running. Although I try not mix politics and religion, when it comes to healthcare, it’s almost impossible not to. I believe in a God who created every person in His image. As such, I believe those people should be given the best chance at life. Right now, the Church is not providing that. If the government can, at the very least, forge a pathway to these provisions, then I am all for it.

If you really believe that health care is the Church’s responsibility, then your church should be paying a lot of insurance premiums. I suspect its membership should be exploding then too!

If I have private insurance, I better be able to skip to the front of the line and receive treatment before those with government-insurance.

No joke, my ears have honestly heard these words muttered. Blogger needs a rolling-eyes emoticon. (Insert here.)

I am not supporting a bill that endorses abortion and euthanasia.

The Obama-backed healthcare bill DOES NOT support or encourage euthanasia.

“In truth, that section of the bill would require Medicare to pay for voluntary counseling sessions helping seniors to plan for end-of-life medical care, including designating a health care proxy, choosing a hospice and making decisions about life-sustaining treatment. It would not require doctors to counsel that their patients refuse medical intervention.”

(Read the entire article here: http://www.factcheck.org/2009/07/false-euthanasia-claims/ or http://voices.washingtonpost.com/ezra-klein/2009/08/is_the_government_going_to_eut.html )

The public-option insurance, as proposed in the Obama-backed healthcare bill, DOES NOT cover abortions.

“In fact, none of the health care overhaul measures that have made it through the committee level in Congress say that abortion will be covered, and one of them explicitly says that no public funds will be used to finance the procedure. Furthermore, none of the bills call explicitly for cuts in Medicare coverage, much less rationing, under a public plan.”

(Read the entire article here: http://www.factcheck.org/2009/07/surgery-for-seniors-vs-abortions/ or http://energycommerce.house.gov/Press_111/20090730/hr3200_capps_1.pdf )

Again, I’m not advocating “acceptance at any cost” of the proposed healthcare reform plan. HOWEVER, I am promoting the conversation be based on FACT. These claims are false and it rips my gord to think that people believe these scare tactics.

I don’t want a Canadian-style healthcare system!

Or, sometimes people get really bold and actually use the “s” word: SOCIALIZED MEDICINE! Ack!

I’m not going to debate the merits (or DEmerits) of the Canadian system because it’s a moot point. No one is proposing a like system. Canadians utilize a one-payer system. Every Canadian has the same health insurance: “the government plan”. Every taxpayer contributes into it. Everyone receives the same benefits (though healthcare in Canada is under provincial legislation, so each province’s plan is unique). There is no private insurance option (for major medical). THIS IS NOT THE SYSTEM PROPOSED BY THE OBAMA ADMINISTRATION!

The healthcare reform advocated by this administration is universal in that everyone will have access to insurance coverage. Not the SAME coverage. Not the SAME premium. Not even the same benefits.

http://www.factcheck.org/2009/04/government-run-health-care/

I don’t want the government making healthcare decisions for me!

I don’t get this one. And I’ve heard it a few times.

Even in a one-payer system like in Canada, I don’t feel that the government makes my healthcare decisions. Richard and I choose our doctors and we most certainly choose Ellie’s doctors. If there’s a lack of choice, it’s primarily because of population sparsity (ie: we live in the sticks).

Even those Americans who are currently insured through Medicare or Medicaid get to choose their doctors.

The one legitimate argument I’ve heard, closely along these lines, is the fear that employers will no longer fit the bill for private insurance and eventually everyone will either pay exorbitant premiums for private insurance or be forced to sign up for the “public option”. I personally doubt this will happen, but I understand the argument. That’s still a far cry from the government making actual medical treatment decisions for you or yours.

After all is said and done and every point is argued, for me, it still comes down to one word: PEOPLE. The value of every human life. The responsibility we have to take care of each other. The belief that every person should have the opportunity to live or walk or see or speak or…. The current US healthcare system is broken and selective. The value of life and independence should not be linked to a bank account or employment status. EVERY person deserves health insurance because they are a human being. Period. Not because you’re very poor. Not because your employer provides a plan. Not because you’re very rich. Not because you’re a public servant. Simply because you’re a human being.

Wow.

2009-08-10T09:01:00.003-06:00

A dream came true. That's what happened to me yesterday.

I remember when I was young and stupid, dreaming about sitting in church with my boyfriend. I'm not sure why that was such a big deal to me. Perhaps because I always felt little pangs of jealousy when I saw church-friends holding hands with their significant others. I would dream about the day that *my* boyfriend would put his arm around my shoulder while we pretended to listen to the sermon. And, when Richie and I walked into my home church, hand-in-hand, that cold December morning in 1999, I remember my heart smiling as I realized that it was a little dream come true. It was a good day.

Fast forward a few years and I began imagining a different dream. I fantasized about the day when my sweet Ellie would walk into church with her little walker. I would imagine how precious she'd be, as she'd make her way up the aisle to a chorus of cheers and tears.

Yesterday, that dream came true.

I can't even describe the bubbling of my heart. Ellie was even more precious than in my dreams. It was almost unbelievable to see the reaction from people who had been praying for her since the day she was born. We were prayed for during our NICU stay, we were prayed for as we sat in the neurologist's office, receiving the CP diagnosis, and we've been prayed for as Ellie works SO HARD in therapy. And, yesterday, my sweet baby girl walked into church.

It was a million times better than walking to the mailbox.

Of course, I want more. I want her to walk into church with canes. I want her navigate stairs. I want, I want, I want... But, today, I'm just gonna savor the dream come true. I'm going to rejoice in what Ellie's accomplished and be satisfied. I'm going to shower my miracle baby with praises and remind her that she is AWESOME.

It's a good day.

And Then It Was August...

2009-08-05T18:57:00.003-06:00

Oh goodness. I have verbal diarrhea in my head, but no time to translate it onto cyber paper. I really, really want to blog about American health care reform. I really, really want to blog about the letter I'm about to write to our federal representative, Vic "Slimeball" Toews. I really, really want to blog about how amazing Ellie was during our little family trip last week, zipping all over the hotel with her walker.

But, alas, I'm out of steam today. Hopefully the weekend will bring some down time and my fingers will feel like typing up a storm.

Until then, I'll leave you with some pics from our visit to the good ole Mennonite Museum last month, when Richie's parents came to visit. Fun times!

Ellie sitting on what she thought was "Thomas the Tank Engine". A Mennonite with a British accent? Sweet!

Lovin' the windmill...

Pomp and Circumstance

2009-07-25T19:46:00.003-06:00

My baby girl graduated yesterday!

Oh, it was precious. As I've mentioned before, Ellie has been going to therapy camp for a month. Yesterday was her last day and they made a big to-do about it. Rightly so. Ellie worked her booty off! She was so excited about showing off (parents, grandparents, etc. were invited to watch the "ceremonies"). She was almost *too* excited, because her muscle control suffers when her adrenaline rushes. Sweet girl!

Ellie leads the procession...

One of the things Ellie worked REALLY hard on this month was learning how to get down onto a seat or stool from her walker, or in this case, canes. She's *this* close to being able to do it herself!

Sittin' pretty while the other kids receive their certificates...

FINALLY, it's Ellie's turn!

Precious girl is so excited that her walking is hindered! Gemma still needed to put her foot in between Ellie's legs so that she wouldn't criss-cross. As you can also see, Ellie's been working on walking with canes this month. This is a 'step up' from her walker, and significantly more difficult for her. But, Gemma (her therapist) felt she was doing so well in her walker that it was time to step it up (pun intended)....It's slow-going, but she's gettin' it. Ellie took 4 steps all by herself with her canes this week!

There it is: THE DIPLOMA!

I don't think she's ever been asked to "shake hands" before!

My mom bought Ellie a graduation gift: butterfly/fairy wings. It was nauseatingly fitting, given that the Movement Centre logo is a butterfly (see back wall paintings). Ellie was beyond thrilled, especially since she now has wings "just like Abby Cadabby" from Sesame Street....

Showing off the t-shirt all the kids made that morning. It reads, "I Survived Boot Camp 2009". Pretty accurate!

Mr. Cake-meister Reeechard and his butterfly creation for the post-grad partay...

Get Me To the Church On Time...

2009-07-22T18:59:00.003-06:00

I have to be careful writing this.

I don’t want to offend anyone. And I certainly don’t want to betray the feminist air I breathe.

But, it’s where my heart is at, and those are the things I write about.

We attended a beautiful family wedding over the weekend.

Weddings are hard for me. And I don’t want them to be. I want to enjoy the celebration and rejoice with the adoring couple. I want to go back in time to my wedding and recall the feelings of young love that bubbled out of my soul.

Instead, I sit in the pews and sadly wonder.

As the flower girl preciously drops her little rose petals, littering the aisle with fragrance, I wonder if Ellie will ever walk, even with a walker, in church.

As the bride makes her teary way down the aisle to meet her beloved, I wonder if Ellie will ever find that. I wonder if she will have the cognitive abilities to fall in love and start her own little family. I wonder if a boy will see past her physical disabilities and fall in love with her heart.

As the father of the bride holds tightly to the arm of his little girl, I wonder if Richard will ever fill those shoes.

Of course, I realize that marriage does not complete a person. I also know that there’s no guarantee that any child, disabled or typical, will end up walking down that aisle. My head understands this. My heart, however, doesn’t always get it.

I want that for Ellie. And, if I’m being completely honest, I want that for ME.

Perhaps my love for Richard has contributed to this sadness. Ironic, isn’t it? I love him so much and he has brought me so much joy that I want Ellie to experience that with someone too. Perhaps my love for ELLIE has added to this pang too. I am so head-over-heels in love with my child that I want Ellie to feel love as a mother too.

More than anything, though, I realize that the despairing comes as a result of the unknown. My heart cries because I am scared of the future and what it may hold for Ellie. I hate to admit it. I really DO try to cover myself in positivity and concentrate on the good. I really DO try to encourage sweet Ellie at every turn and reinforce my love for her. A love that is unconditional. No matter what she does or what her physical and mental abilities are.

But, sometimes, I wonder. And I go to melancholy places in my mind. I want love and comprehension for Ellie. I want those things SO BADLY. I know the “right” thing to say, especially as a mother, is that I want happiness for Ellie. Of course I want that. But I want her to also have intellectual acuity and I want her to fall in love.

Sometimes (okay, MOST times), I wish I knew what the future holds. I wish I knew if I need to wonder (read: worry) about these things. I wish I knew whether I should accept or hope.

I wish I knew if we should start a “wedding fund” account.

Ellie and the flower girl from the wedding on Saturday. Not the best picture, I know, but I need my I.T. guy to help me get the REALLY GOOD pics onto my computer so I can share Ellie's totally amazing prettiness with you!

Be Still, My Heart

2009-07-19T20:49:00.000-06:00

A Little Bit of This, A Little Bit of That

2009-07-14T18:26:00.006-06:00

Busy havin' fun 'round these here parts.

It's a bit chaotic driving Ellie into her "camp" session five days per week, but she's doing so so so well. Today she actually side-stepped around a bench on her own! It is so difficult for her to move her legs sideways (it's tough enough to move them forward and back), and they've been working on that skill since day one of camp. And today was a breakthrough day! Breakthrough days ROCK.

I wish every day was a breakthrough day. Ha!

Anyhoo, here's some pics from the weekend, havin' fun and enjoying some summer.

Bath Time with Cousin Zach!

The Obligatory "What We've Been Up To" Post

2009-07-08T07:47:00.004-06:00

Well, I haven't yet broken the "2 weeks without posting" ceiling. One day shy.

Things have been wildly busy. How on earth did it get to be mid-July?! Richard was being "Cake Boss" and baking Cookie Monster and Oscar for Ellie's March birthday just yesterday!

The baker and I took our annual "just us" vacation last week. We decided to go to Vegas...again. Oh, sure, we love us some Vegas, but I'm ready to mix it up a bit. The problem is that Las Vegas is so accessible (direct flights from our middle-of-nowhere location) and cheap ($29 one-way!). Where else can you stay in a five-star hotel for $100/night?! I guess Vegas is hurting in this recession because lodging is borscht-cheap. And I love a nice hotel room. Like, one with a TV in view of the soaker tub. BLISS.

It was a good time. Good for the marriage. Good for the rejuvenation. Good for the taste buds (every time we go to Vegas, we change our "Best. Restaurant. Ever." list).

We were gone for nearly a week and by the end of it, I was definitely missing sweet Ellie. This trip was different. This missing-ness was different. No longer was this vacation a "much needed break from parenting and Ellie". This vacation was about connecting as a couple, because we're no longer in dire need of a parenting break. Life is so much easier with Ellie, as she's able to communicate and has better physical and emotional control. It felt good to miss her.

During our vacay, Ellie started her "therapy camp". We are unbelievably blessed to have an amazing sitter/respite worker who was more than happy to look after Ellie while we were gone, and bring the sweet girl to the first few days of camp. And, hoo-wee, is that sweet girl tired! The first week of camp has been a huge adjustment for Ellie. She is so worn out by the end of her day, but we're starting to notice her stamina slowly building, which is great. We're still putting her to bed at 6:30 on weeknights (a bit of a bummer considering it's SUMMER and we have sunshine and nice weather to enjoy all evening!). 'Course, it gives Richard and I a nice long evening together...

...if we were actually home together at night! The day after we got home from our rendezvous, I started my VBS-volunteering stint. I'm currently on night 4 (one more left!). It's fun, sure, but so tiring.

We were gone over Canada Day, but we celebrated July 4th at home, with hopes that Richie-Rich wouldn't feel quite so homesick. Of course, Jelly B'Ellie is the cutest Miss America EVER.

We even had a cookout. How much more US American can you get?!

And there's your 411. Hopefully the next one won't take so long in comin'!