Tuesday, April 24, 2012

Those Dreaded Wonderful Words

Last Thursday we had a conversation with Kasidi's therapist that I guess I wasn't prepared for.
I promise, I'm not whining, and I'm certainly not complaining. I'm just being real...and raw.
When Kasidi took her first steps a few weeks ago, we were ecstatic! We thought she'd be up and running.
We are ignorant.
She didn't really walk much after that one day.
She loves to tease us.
She stands up like she's going to walk, and then she dives to the floor, causing all kinds of laughter.
But we were noticing some other positive things.
She was starting to raise one leg to balance herself.
She was using her upper body strength in crazy ways.
And she was slowly letting go of furniture and cabinets as she walked along them, even if only for a moment.
Then this week...she's had three days of taking several steps independently! Her poor little body even looks like that of a baby just learning to walk, with bruises and scrapes from falling. This girl amazes me! She inspires me! And she is a daily reminder that I get far better than I deserve!
But back to our conversation last week.
We saw Kasidi's therapist 3 times ~ once to get her new orthotics; once to receive her Amtryke and once for therapy.
Thursday night she told us she would soon be measuring Kasidi for a wheelchair.
A what?
She's two! She's trying to walk!
(I told you, I'm ignorant.)
She explained that for Kasidi to conserve energy it would be best for her to have a wheelchair when we are out and about. And I guess there is a toddler wheelchair with big wheels that weighs 12 pounds.
I'm sorry to say, I wasn't impressed. I was numb.
Please don't misunderstand me. I'm not embarrassed by her using a wheelchair. I just desperately want her to not need one!
And then the Lord shook me up.
Instead of resisting these words, I should embrace them. Even rejoice. After all, it's about Kasidi becoming mobile. And I praise Him for the advancements made so kiddos with spina bifida who once were treated as unworthy are now able to be fully functional, highly productive, well educated, and inspirational members of the general population!
Thank You, Lord, for these...
For this...
For this...
And for this...Next week Kasidi will have an MRI and spine x-ray. There are a few reasons her doctor wonders if she might have cerebral palsy. In fact, she has more CP symptoms than SB symptoms. He told us if it weren't for the scar on her back, he would rule out SB. The good news ~ CP is not progressive!
Ultimately, the diagnosis or diagnoses are only a mechanism to lead us in the right direction for providing her the utmost opportunities to thrive to her greatest potential.
And we serve a God who is fully capable of that...
even when I am ignorant.


Laine said...

Your title is so perfect...the dreaded wonderful. :)
I love your perspective, your honesty, your realness, your love for all your kiddos. Heck, I just plain ol' love YOU Connie! :)
Kasidi is such an inspiration. Her smile lights up a ROOM, I imagine!

Yvette said...

I so know what you are talking about! Really why would my son who only walks on his knees have any use for a wheelchair - (where is that bang your head on a wall icon LOL!) I am sure they were looking at me like I was the one with three heads LOL!

She is perfect, AND she is in the most perfect family!

CarrieT said...

This reminded me of when they first used the words "mental r*tardation" for Holly. Sigh. Hard to hear, even though we were not really surprised. But our sweet girl is still the same gift from God that she was before those words and we focus on that. Plus we know God is not defined by any labels or special equipment!! Hugs to you!

Carrie T.

Dardi said...

I love this post. So far, Kemeri is walking. She is a bit unbalanced, but we're not sure yet if that has to do with the SB or lack of opportunity to use those muscles. Regardless, I find myself in awe of her & thinking I want to grab her up & apologize for ever being worried about anything b/c I love her for her! :) We are praying for her upcoming uro testing & tethered cord surgery, but we don't focus on that. While we hope & pray & hope for the best, we know for sure that we love her b/c she is our Kemeri.

Joy said...

I know it sounds weird, but a wheelchair will give her so much independence! (And save some energy for working on walking.) I remember watching a kiddo I once worked with who had SB. He was about 6 and was at a football game popping wheelies in his chair on the sidelines with a pack of other little boys. Some day that may be Kasidi!

Stefanie said...

Can completely relate, my friend. I am praying for you and for Kasidi Joy... she IS such a treasure :)

Linette said...

I had a roommate (and dear friend) for two years who has CP. She can walk with crutches, or pushing against a wall for balance, but mostly uses a wheelchair when she is out and about. The second day we knew each other we went on a tour of the Oregon coast and she scared me half to death barreling down a steep mountain path on her crutches to get a better look at the ocean. (If I had known her better then, I wouldn't have been scared!) Then there was the semester she did adaptive downhill skiing, and the time she went on an overnight trail ride. I don't think that wheelchair is going to slow Kasidi down one bit! (But you already know that!)

Jean said...

God's blessings to your sweet little one AND to her Momma. She is so adorable and will be even happier than she already is tooling around in her chair or her walker!

Rebecca said...

My two youngest have spina bifida and both have wheelchairs. My 5 year old daughter uses her chair for long distances to try and save what mobility she does have.
Then, there is my 4 year old busy-body boy!!! He is pretty much a full time wheelchair user, which was a huge shock to us at first. Especially since we were told that he could walk by holding one hand. :)
But, oh my! How his world improved when he received the independence of his own chair. He thinks he is hot stuff with his bright green chair with light-up wheels. And he LOVES to pop wheelies, especially if someone is watching.

Kevin, Jake and Violet said...

Opposite ends of the spectrum, I know, but I felt the same way when Mom had her stroke and I resisted the wheelchair for a long time because I wanted my Mom to walk. I, too, finally realized it was more about her getting involved and being less tired. So sorry for that hit from the therapist, but keep helping her fight. While the therapist know what is best, in the end, you know what your daughter and your Lord are capable of. Blessings! Violet

Shonni said...

Your faith is so inspiring. Thank you for sharing her story with us. She is adorable!!!!

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