Seems strange that I would be sitting here writing about the benefits of my daughter being an amputee. There was not a time when I felt that she could ‘benefit’ in any way from having to deal with what she has dealt with and what is to come. Madeleine was born with fibular hemimelia and had her leg amputated when she was just a year old. From the moment my husband and I saw her pull herself up to standing in a very heavy cast we knew that she held a quality of grit and perseverance that many children and adults do not have.
At a very early age Madeleine showed athletic prowess. She exhibited a driving spirit that was not recognizable in myself. When faced with competition Madeleine rose to the occasion. She wanted to participate in every activity possible. She did gymnastics and blew us away with her balance and exuberance. She went to swimming and was the first to dive down to retrieve the toy. She was on the t-ball team and no other kid was in it to win it the way Madeleine was. She tried her hand at wheelchair basketball and a few other specialized sports. This athletic passion finally gave way to a bit of grant writing and Madeleine was given an Ossur Cheetah leg by Challenged Athletes Foundation. When we received that letter I had dreams of taking our daughter to San Diego to compete in their annual events in October. At the same time we were invited to the Pirate Camp for Never Say Never Foundation where Madeleine could learn water sports with paralympic athletes!
You see, for disabled athletes who are driven to succeed there are plenty of events out there. There are special camps and activities. There are events and engagements. These are very special benefits. And, as a parent of a disabled child you want them to do it all! You want your kid to show the world that there are no limitations. That she can conquer the world despite this difference.
Here’s the problem, these events and engagements have costs associated with them. Some of them are free, and some are very reduced in price. But they all cost something. For me it is time. For me it is the extra money. Having a child with a disability means that everyday life is costly. It takes extra time, education, doctor’s appointments and the cost of medical equipment. Madeleine’s legs are on the cheaper end as she is a below knee amputee- they are just around 30,000 dollars. Our insurance pays between 80 and 90 percent.
If we go to the camps and events we pay airfare, sometimes hotel costs and other expenses. I also need to take time off of work and as a teacher, that is actually harder than it seems as it would be unpaid if it didn’t fall on a school holiday.
Of course I want to give my kid the world. Of course I want her to show the world what she is made of. And, I’m saddened that money gets in the way of this. Giving to Fly will change the lives and opportunities of kids and their families. It may be the thing that makes the dreams come true.
– Niki, Madeleine’s Mom