A friend of mine who also has children with special needs told me that I should start doing the writing prompts for The Mighty. I have a hard time keeping things short, but I figured I'd give it a whirl. Whether it gets published or not, it felt good to write it.
When we met at Open House at the beginning of the year, there was so much I wanted you to know about my daughter. She's 8, but she's only been mine since she was 4. When we met her, in an impoverished orphanage in Ukraine, her hair was buzzed off and at 24lbs she was the size of a 2 year old.
She was born severely premature and suffered a stroke that damaged parts of her brain shortly after birth. Due to a lack of medical treatment for her Cerebral Palsy, she was completely unable to walk and could barely sit the first time we saw her.
I wish you could have seen her then so you knew how far she has come, but in some ways I'm glad you did not. What I really wish you knew is how many times she was left out and left behind simply because she couldn't walk. Its been 4 years and she still remembers all of the other children going to music class while she sat alone.
What you saw when we came to your classroom was a seemingly social and extremely inquisitive little girl, small for her age, but loud. She's always been loud. At the orphanage it was the only way she could get attention from anyone. She couldn't walk so she yelled. I wish you knew how I could tell when she was feeling left out by the volume of her voice, always trying to get someone, anyone to notice her.
I wish you could have seen how at 4 years old, she didn't know what crayons were. While children in the U.S. get therapy, she got stuck in a crib. I wish you could have seen her when she tried to eat the PlayDoh we bought for her because she had no idea what it was. In four years, no one had ever given her paper to scribble on.
When we brought her home and first took her to the CP clinic, I wish you could have heard the doctor tell us that she'd never walk. I wish you could have felt what I felt that day. Sad. Indignant. Determined.
I wish you could have been there when the developmental pediatrician who charged $450 to walk in the door took only 10 minutes with my newly adopted 4 year old then asked her to replicate a tower of blocks. She didn't like him, so she wouldn't do it. I wonder if you would have agreed with him when he told me that she would always be at the low end of the IQ scale? I never took her back to see that doctor. He saw the traumatized, neglected child in front of him and missed the child she could become.
I wish you knew how many hours of physical therapy I've sat through so my daughter could achieve her potential. I wish you could have heard her screaming at me in Russian those first months home every.single.night. as I did stretches with her. Her tears and mine together; I'm still not sure what she was calling me. My arms would ache as I supported her weight while I did exercises with her to strengthen her legs, but that feisty spirit of hers is why she's here today.
I wish you knew what it was like to hold your screaming child down in an exam room while a doctor injects a needle full of Botox 12+ times into her legs and arm in the hope that it provides temporary relief of the constant spasticity.
I really wish you knew what it was like to watch her take her first independent steps as a 5 year old. I wish you could appreciate what its like to have to teach a 5 year old how to put her hands out in front and behind her when she falls. I wish you knew how proud we were of her the first time she fell backwards and finally got her elbow down first instead of her head.
I wish that you could experience what its like to navigate an airport and fly on a plane with a disabled child in a wheelchair with the hope that the surgeon you're going to see will be able to give her the ability to run.
I wish you knew what it was like to be a little girl that can't run, but believes one day she will.
So when my daughter came home clipped down to yellow like she'd done something wrong, and the note in her agenda said, "Running in the hallway." I wish you could have known what that felt like for me.
Maybe now you understand why I wrote back, "You know, I was told she'd never run."