One of the most important things that a child with a chronic disease wants is to be treated just like his/her siblings. They may have different (I dislike the word “special” because all kids are special) needs, but in the end, the kid has to be kind, moral, and respectful, do their homework, etc. They will have to learn organization, timeliness and other skills to eventually function in the adult world. This is much easier said than done; it is often easier to run back and get the homework or lunch they forgot, give them McDonald’s every day, or provide the latest video game to compensate in a small way for the life-changing event that happened. My son got one chance if he forgot his homework or lunch, so I have to apply the same rule for Dana, I told myself. Another rule of mine: if you heard the same answer twice, don’t ask again. Apply rules for all the kids. It is very hard to have a spine of steel, but your child will appreciate this when he/she is grown.
We have cried buckets of tears together. It’s not fair (no it isn’t, and we can’t change that), I used to be the most popular girl in the class (you still are), how can I trick or treat? (the same way you always do, but your pumpkin will be on your lap), I will never have a boyfriend (not true, your wheelchair will weed out a bunch of losers), my scars on my legs are ugly (they’ll fade, sorry you had to have surgery for your legs to work better), aren’t you embarrassed to be seen with someone in a wheelchair (no, I never thought about that, you’re still you).
It is important for every parent to continue to encourage their child to try something new, experience a new place, feel a new emotion. Your child might be quite fearful of new things after getting sick, worrying about pain, their appearance, or a whole host of things. We can’t forget our job as parents to expose children to as many things as possible, and let the kid run with it. My Dana did not want to participate in adaptive sports programs, crying each time we went to rugby or soccer, but laughing and having a great time on the court. It turns out she thought any kid in a wheelchair had an intellectual disability, and she was going to end up not being able to think for herself. We laugh at this now; she cried all the way to her first wheelchair tennis camp, where she saw beautiful, smart, strong women in wheelchairs for the first time. You can grow up and be just like them!
My story is a happy one. Dana went to the University of Arizona and earned a Bachelor’s in Speech and Hearing Sciences. She finished her first year in a doctorate program in Audiology, and took a leave of absence to become a US Paralympian in tennis. She’s just returned from Rio and is going back to finish her degree next year. Our lives have been blessed and enriched from SRNA/Sandy and Pauline, Chitra and many others. Now it’s my turn to say, “It’s not fair! Your passport has many more stamps than mine!” As Dana said and still says, “To Infinity, and Beyond!” I thank Toy Story each day, and hope our story inspires you.