I am honored to be a Hope Ambassador for the Transverse Myelitis Association, and I hope my post will help and bring hope for others. I write this from the perspective of a Mom, who just happens to be a pediatrician. My daughter, Dana, got TM at age 10 1/2, on July 30, 2001. I will never forget that day.
I picked up three neighborhood girls and dropped them off with Dana for soccer practice at 4 PM. My neighbor brought them back; he said Dana cried all the way home with back pain. She stumbled into the living room crying, saying she couldn’t move her legs. She couldn’t feel my hands and denied getting hit at practice. I didn’t know the name of what she had, but my differential diagnosis said, “spinal cord problem.” I called San Diego Children’s ER to tell them we were coming, and our journey began. Her exam and MRI confirmed an inflammatory process of not a single level, but splotchy involvement below T10. I had never heard of TM until that evening. The neurologists said the rarity of it meant no known standard of treatment. She got extremely high dose steroids x 2 and IVIG. SRNA was in its infancy, and was a wonderful resource. I told myself, she is going to have a good life whatever lies in store.
She came home after 5 weeks in the hospital. Rehabilitation medicine is not routinely taught in medical school, and I had much to learn. I made it a point not to cry in her room, although my heart was aching for the normalcy we once had; the hiking, skiing, and outdoor adventures. I had to learn to take my own advice for parents of a child with a serious illness: we will see the world by a different road. There are things to see and discover along the way. Although the therapy will be tough, we can’t forget to laugh and see the humor in things. I will never forget the day we left Children’s Hospital; Dana raised her arms up high with her wheelchair speeding down the ramp in freefall, exclaiming, “To Infinity, and Beyond!”
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.
Dr. Arlene Wong-Mathewson
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Carol