Movin' On...

Stones

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?

Funding Schmunding

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.

Blame Game

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

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...

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

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!