I wrote this book for KSS to teach her about her cerebral palsy. She was four years old and ready to learn about her diagnosis. (If you click on the images they will enlarge.) Its still in its rough draft stage as there was never an official print run of it. I read it to her once. She looked up at me and asked "Do I have Zebra palsy?"
I knodded my head and the doors were open to teach her.
I have included it here so you can see the braces or AFOs (AFO = ankle-foot orthotic) so you know what I am talking about.
My second visit to Shiners Children's hospital was to make plaster casts of KSS feet so they could make AFO's for her.
Plastic torture devices that hurt like a SOB if you get kicked with them while trying to shoe a fighting child who doesn't want to go to the store with you.
Oh did I mentioned they are hinged plastic torture devises that will leave you screeching in high-E when you get pinched in there folding parts.
And KSS was not to fond of them either.
Her first pair didn't fit correctly and we had no idea they didn't fit her. We put them on her faithfully everyday like we were supposed to. Only to discover months later that they were not conforming to her feet correctly and they were undoubtedly causing her pain 24/7.
Well durr....that would explain why she hated them so much.
Made us grown up feel like crud too. Yeah, thanks Doc, I just spent the last few months hurting my child and adding to her pain and even further hindering her attempts to learn to walk. Nice job of making me feel like a monster.
Once we got AFO's that fit things got better.
but I digress...I want to share with you what happened that first fitting.
While we waited for KSS turn to have her legs casted in paster to make molds, she got wiggly.
So she and I wandered off. Her crawling slowly about the hallway looking for stuff to get into. The hallways were silent and empty. She tired door after door to find them locked.
I grabbed a quick drink of water and as I glanced up found myself alone in the hallway.
RUN AWAY BABY!
As I started checking doors I laughed at myself...geeze how stupid do you have to be to loose a small child who crawls at a very slow pace?
At last a door gave way and I peeked in to find KSS smiling up at me. "Sajah?" she grinned.
I scooped her up and froze.
The sight before searing itself onto my soul.
Stopping my heart.
there were rows and rows of pairs of plaster feet hanging from wires that stretched across the room. This was the room the AFOs were made in.
The main set of lights were off and so the little dangling feet were ghostly lite in a somber light.
Like a bunch of dancing angels. Beautiful chubby feet, ankles and toes.
My heart resumed beating, as the tears welled up. There feet didn't belong to dancing children. I could see the twists and bends in them.
These feet belong to children who might never walk, run or dance .
I looked at KSS. then back to the feet.
There were worried parents behind each pair of feet. Parents who cried many tears over those precious feet.
Row upon rows.
I ran hand down KSS's crooked leg and cupped her foot.
I thought of the workers in here taking each pair of feet down and handcrafting the AFOs to fit them.
I left the room and took her back to the waiting room. The enormity of the world I was now in, crystal clear in my head...and too much for my heart to handle.
I have visited that room many times in my dreams.
I always slip in quietly, stand among the dangling feet and catch my tears in my hands, then lovingly wet each tiny foot and re-sculpt it. My heart wishing endlessly to be able to heal those feet. To free those children, to give them feet that fly and jump.