The Night Before

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

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

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

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

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!

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

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...

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...

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.