I remember Christopher Reeves was tossed from his horse around the time Mel was born. In my mind, if he walked again, so would she. But then, he had money and we did not. If he walked it was because he was in the spot light and using the latest and greatest therapy tools. He had the best medical care. The best doctors. He died in 2004, from a pressure sore that went septic. Today I learned he died from cardiac arrest from an antibiotic that was used to treat that pressure sore Yes Wikipedia again. I ponder for a moment. Pressure sore? I do recall being told to check for sores and to teach Mel to check. But was it every really emphasised how dangerous pressure sore are? Was it ever emphasised how long it takes them to heal. I guess that’s a post for a different day.
I do not recall the first conversation about getting Mel a Wheelchair. I think that topic not only puts fear in parents but also in the medical community. It’s an emotional bag that just hangs around. I can even recall kids getting pulled from school and getting home schooled because the parents did not agree to any wheelchair usage.
I do recall asking about a stander. I remember the Doctor at the clinic saying Mel could have a stander when she was trying to pull herself up. Really, why should she try? She could not feel her legs. The next weekend, I showed Mel the dog outside of our den window. The window was low in the floor. I propped her arms on the window and supported her and guess what, she was “pulling up” ♥ I called the clinic. Mel was pulling up. They said she could have a stander. I do not remember even really liking the standers. They were so nonfunctional. She could not move. I had to move her from place to place. Finally, someone told me about a standing frame that was really a standing wheelchair. I think we got our first stander around 6 or 7 months of age and a stander with wheels on it so she could move around by herself by 2 years of age.
When Mel was 14 or 15 months, I started really thinking about a wheelchair. Remember, I was focused and constantly checking the charts to make sure Mel was doing the things the other kids were doing. I recall putting Mel on the top of a slide at the park when she was a toddler. I put her on her tummy, head facing down. I figured she could slide that way as the legs would just follow. The other kids at the park were sliding. Again, that over focused thought processes. Well this worked for several slides. Mel was having fun. I was elated. On the third trip down, Mel lost control of one arm and face planted into the slide. Big red mark, screaming child, horrified onlookers. I was so embarrassed, so scared I had really screwed up. I grabbed my child and ran to the car. After a few minutes I was able to calm down and complete an assessment, Mel was fine. A little red on one side of her face but smiling and ready for the next adventure. Ok, Yes, I needed to reconsider this “Mel can do everything other can do concept.” Face down sliding is banned at schools for a reason. I do not recommend it.
Back the wheelchair. I wanted Mel to be able to leave my side and come back, that skills was on some checklist about emotional development. I wanted Mel to be able to sit at the table at school or church and be able to get her own stuff. To move on her own in public places. She crawled and rolled all over the home but outside, even in our own front yard, she was stuck or she was scraping up her legs.
I friend from my spina bifida network had told me she had an old chair in her garage. It had been donated to her child when she was very small. She had indicated it was the same size as a toddler chair. I remember thinking about that chair for some time. I dreaded the thought of Mel in a chair. At night I laid awake and stared at the dark ceiling. Was this something I was supposed to do? Why did she need it now? Was I holding back for me? Would Mel like it? Would others treat her differently? I do not think I even spoke about it with Mel’s medical team. She was only 14 or 15 months old. I made the call. I set a date to pick it up.
I remember the trip over to Rebecca’s home. She lived about 60 min east of us. Mel was in the back seat. Tears were streaming down my face. I had to stop several times to just get my breath. I think I was not only grieving because of the mission I was on but I think I was finally grieving over the concept of having a special needs child. I think this was the first time I finally allowed myself to just let it all out. To cry and cry and allow my heart to break. I loved my child but I did not love this life. By the time I arrived in Rebecca’s neighborhood, I had gotten myself together. I was able to take a deep breath and firmly establish that I was doing this for Mel and Mel would benefit. Getting the chair in my car only took about a minute. I was not heavy at all. Additional tears were shed on the was home but I recall seeing Mel, sitting behind me in her car seat, those big eyes just looking around. She was going to be ok. Of this I was sure.
When I got home, I got the wheelchair out and placed it on the kitchen floor. I sat Mel down. I held my breath and strapped her in. In two point four seconds, Mel was off. I remember the smile on her face as she zipped from one room to another. She was so fast. She was everywhere and was having so much fun. In the next few days, I started to venture into the community with Mel in her chair. No more carrying, no more stroller. Teaching her she had to stay by my side was challenging. The chair was pink, and cute and people loved it. She would zip right up to someone and start chatting. Teaching her she should not and could not just talk with any stranger was difficult. People would just keep the conversation going with Mel. The chair did not define who Mel was. It gave her access to a world of adventure. She did not use her braces and crutches less. Mel was going to be ok. My cute, little, spunky girl was born to move. Speed was in her blood. To this day, she is one of the fastest racers in her class in the 400 meter chair division. (in track, the kids are classified by their functional level.) More on track later.