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Tuesday, April 8, 2008

Truth Be Told

Ok, confession time. I'm having a hard time dealing lately. Just plain DEALING. I'm struggling. Struggling to stay positive. Struggling to reconcile hope with reality. Struggling to see the future with optimism.

Dr. C's report came in the mail today. He's the physiatrist we saw last month; the one who said that Ellie would never walk (well, it was his therapist who said those exact words, but obviously he was in some sort of agreement). I know that he is ONE doctor, and that he hasn't seen Ellie at her best--when she's relaxed and exuberant. I read the first page of the report stoically, but my heart stopped when I turned to page two, and saw this opening sentence:

"We have discussed different options with family. These included dorsal rhizotomy, which I don't think is appropriate at all."


Dorsal rhizotomy, of course, is the surgery that we are desperately pursing with Dr. Park in St. Louis. The surgery that, although covered with transparent nonchalance, I am holding out an incredible amount of hope for. And here it is, in writing, and on its way to each of Ellie's doctors, the fact that her physiatrist thinks it's a terrible option.

I am so pickin' sick of these bubbles bursting. Every time I think there's hope, it's quickly dashed by the slice of a letter opener. Every time I think Ellie's improving leaps and bounds, I'm run into by a "typical" 3-year old, talking in 10-word sentences. Every time I think I've come to terms with my life as a mom to a special needs kid, I hit the brick wall of acceptance, and realize that I'm actually miles away from the door.

I throw my hands up to heaven and ask, "WHEN WILL I BE OKAY?"

WHEN WILL I BE OKAY with Ellie in a wheelchair?

WHEN WILL I BE OKAY with Ellie being in special ed?

WHEN WILL I BE OKAY with Ellie moving into an ACL (assisted living) house when she's 20?

WHEN WILL I BE OKAY with giving up the dream of being mother of the bride?

WHEN WILL I BE OKAY with not needing a college savings account?

WHEN WILL I BE OKAY with the possibility of spending so much on therapy and out-of-country surgery that we'll have nothing left to buy a sibling for Ellie?

WHEN WILL I BE OKAY with buying a mini van because it's the only vehicle that easily stores a wheelchair?

WHEN WILL I BE OKAY with giving up the fight, and honestly revising the dream?

Because, truthfully, I'm NOT okay right now. And, I'm not quite ready to give up fighting. I'm just really tired today. My spirit is weak, and my psyche is bruised, but deep down, I know that Richard and I need to keep fighting. Fighting for this surgery. Fighting for more therapy. Fighting Ellie for just "one more step" in her walker, one more painful stretch, or one more word.

Sometimes, selfishly, I wish I WAS okay. I wish I was able to accept life as God's given it to me. Spend time cuddling instead of pushing. Hugging instead of forcing. Relish the moment, instead of anticipating the future.

I'm just tired.


Jessica said...

Wow. What a moving post. I haven't thought of some of those things. It made my eyes tear up. I agree with the just cuddling. Logen sits on my lap, and I do a sensory massage. I can't just sit next to him w/o working him over. You're doing great things for Ellie! Keep fighting for her! St Louis Children's is awesome! I've heard great things about Dr Parks. Might wana see if you can get in with Dr Brunstrom while you are there. The CP center will give it to you!

Sunny said...

Hold true to God's promises. Don't cease but stay grounded at the same time. I am trying hard to do the same on this end.

Love you!

Tish said...

M.D. does NOT stand for Major Deity, and doctors are not infalliable. I'd guess Dr. Parks has had negative reports before from other doctors, and decided he didn't agree with them. All you can do is try! He's the expert on this particular procedure, and better qualified to see if it might help Ellie. Keep on fighting! I don't think you'll gain any peace about it until you feel you've tried all you could. We'll keep praying.

Kristy said...

Hugs! I'm hate that you are struggling. I wish there was something I could do to make it all better.


Bill and Melodie said...

Praying with you guys! We love you and know that God has great plans for Ellie. I wish I could be near you and give you hugs!


Amanda said...

I love your openness and honesty. One of the hardest and easiest places to be is in God's hands. To hand over everything to Him, is not natural for our selfish flesh. I am praying for you. I am so praying for you.

Barbara said...

I read your post last night and it left me in tears. My heart hurts for you right now. I don't know what to say but wanted to let you know that your post moved me and that you voiced so many of the questions I ask myself every day when I look at my son. Thank you for being so open and honest.

Melissa said...

Now this is one of those times that I wish I had YOUR phone #!!!! Sweet Chrystie, I applaud your openness, it's so fresh & inspiring....I have asked myself those questions MANY times over myself!!! I just think to myself that TOMORROW IS A NEW DAY & with it....a new outlook. Hang in there, honey. You know you are doing all that you can for Ellie & that's all that matters!!

Patyrish said...

First off you made me cry again.

Secondly you will NEVER be okay with any of those things. You will learn to adjust as time moves on. You WILL learn to revise the dream over and over....because there is really no other choice. You will do all this for Ellie and then some.

Keep pushing and keep fighting. That's all you can do and the rest is up to God.

I'm right there with you.

Dawn said...

Oh Chrystie, I wish I had half your eloquence. You definitely need to become a pro. writer.

I am continually amazed by your strength but sometimes its ok to get in the pit. Just keep clawing and scratching and you'll make your way out of it.

Big hugs to you!

Bridget said...

I just ran across your site. I understand your exhaustion. We've been researching the SDR for over a year. Thought you might want to be aware of an orthopedic surgeon we've heard great things about...
Dr. Roy Nuzzo is an orthopedic surgeon and i've heard from multiple families that he is most interested in doing what's best for the child and has had incredible results using different and less invasive techniques. It might be worth getting another opinion from him. We did, remotely, and am glad we have.

I hope you find an extra ounce of umph and dig deep. Don't ever doubt your instincts! There is no one looking out for your child more than you.