A common “stereotype” of a person who is in a wheel chair is that the chair itself limits that person from living a full life and balanced life. Sometimes when we are in public people will make comments like “poor kid to be so limited.” ( I personally find this very rude and really have to hold my tongue) The fact is for Lilly a wheelchair enables her to do things that she once could not. In Lilly’s case her brain injury affect her muscles, endurance and stamina. Yes, she can walk with assistance but she isn’t able yet to walk long distance or her muscles & bones are in too much pain to walk.
I started advocating for a wheel chair for Lilly at age 2 and a half. Thanks to some research I knew there were some key aspects that I wanted in a chair. I wanted a chair that would be easy for Lilly to learn to propel the wheels herself. It had to be around the same height as her friends so she can easy interact with them. Also I wanted something that would make it easy to interact with her pony. Her therapist knew exactly the perfect fit for her and helped me advocate for The Qunnie Sports Chair. But he warned me that not too many children have this chair.
Boy that was an understatement!
It became very obvious whenever we went to the Children’s Hospital or other medical areas that most of the professionals had never seen this type of chair for someone so small. (We get lots of comments) At the local rehabilitation hospital the adults in wheelchairs are often amazed to see someone so small wheeling around like them. During a recent medical appointment I made a comment about how we don’t run into this chair often. (To this date we know 2 other kids with this chair.) Quite honestly his answer surprised me.
“Most parents of Lilly’s age are not ready to accept that their child may need a chair.”
Honestly I can see why. After all I had thoughts like, “What if she never walks?” “Will it single out my child?” “Will she become too dependent with the chair?” running through my mind. Fear has a great way of getting involved in decision makings BUT thankfully God put other thoughts in my head like, “What if she pulls a muscle and needs the chair later in life?” “What if she has issues with her hips?” “She can serve me in many ways.” And God is totally right she will can serve him standing/walking or in her wheel chair!
God also placed someone on my FB feed that impacted my train of thoughts to. He showed me through that person that there are many boundaries to be broken. The young man (I went to Sunday school with his sister) suffered an injury and is now in a wheel chair. One of the first things I ever read about him is how he learned to kayak after the accident. It had these amazing pictures of him kayaking down a river. (Something I would never try myself.)
A persons limits are the only ones you put on them.
That statement is so true and scary. As a parent it’s scary to think that my decision may limit my daughters ability to do things. The thing is if I said no to the chair my daughter would not be able to play duck duck goose in Sunday school or wheel herself down the Journey girl aisle at Toys r Us and pick out doll clothes/dolls. This past Father’s Day Sunday was a first for my family. Lilly (with my assistance) walked up to the front of the church, grabbed a cookie for Daddy, made her way back and handed it to him. Then once it was time to go Sunday school she went back into the wheel chair to be with her friends. Something she couldn’t do a year ago before the wheel chair.
By developing both the walking and the wheeling it is opening up worlds I have never thought where possible. For us, I can never picture life without the wheel chair or walker. Yes, getting her used to both is taking longer than I thought because we are developing both upper body and lower body muscles. It’s kind of like teaching two languages at once to a young child but eventually they can speak both. One day I know all this hard work will pay off and if she doesn’t walk I am fine with that too.
Sometimes saying yes to something enables that person more.
michael
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