My daughter Gabrielle is seven years old. She was diagnosed with Idiopathic Juvenile Scoliosis 1 year ago. In layman’s terms, for an unknown reason, her spine, instead of growing straight, has started to curve. Idiopathic scoliosis affects approximately 3 children out of every thousand under the age of 18. Children who are diagnosed under the age of ten are rare.
Gabrielle’s spine is curving in three separate places. The most prevalent and most dangerous curve is right between her shoulder blades. The curve is causing her rib cage to rotate, and without treatment could eventually impede her heart and lung function. In an effort to try and prevent her spine from curving any more while she grows, Gabrielle is required to wear a TLSO brace. This is a hard plastic brace that goes from her armpits to her hips. She is required to wear it 23 hours a day.
Anyone who has an active six year old can understand my dismay at trying to understand how to manage such a restrictive apparatus. When she was first fitted with the brace, it looked more like jail than a treatment. It is very tight, and it restricts her movement in the torso area. The first day that she wore it, she had it on for an hour. Watching her just trying to sit down looked uncomfortable, and picturing her wearing it, to me at least, looked like torture.
The hour seemed endless, and after we took it off of her, her skin looked angry and red in the places that made contact with the brace. In order to toughen her delicate skin, we had to vigorously rub all the red areas with alcohol wipes to prevent sores or blisters. No matter how logical this seems in theory, most children – and even many adults don’t wilfully submit themselves to torture even if it is good for them. Each day, we extended the time in the brace by an hour until eventually she was wearing it all of her waking hours.
Gabrielle has spent the past six months in her brace wearing it 23 hours a day. In the beginning, we always seemed to be focused on the things that she couldn’t do while wearing her brace. She couldn’t pick her toys up off of the floor (she milked that one), couldn’t completely dress herself any more, she needed help in the bathroom, I had to boost her into our Jeep, she needed help getting out of bed, the list seemed endless. The first time she tried to maneuver herself down our snow covered walkway she slipped and fell backwards and became stuck on her back in the snow. When I went to help her up, she reminded me of a turtle that had flipped over on its shell.
Thankfully, children are adaptable. As the months have gone by, Gabrielle has learned to do almost everything that she did before. She is even able to put her toys away again (after I found her kneeling to pick up money one day). We have even learned some bonuses to spending all of your time in a hard plastic brace. She is never cold and rarely needs to wear a jacket, If she is walking with her friends, she can lay down and her torso becomes a portable bench that seats two, She doubles as a snow shovel if we get stuck, I have a hard surface to write on whenever she is with me, and when I wake her up in the morning, her brace supports my weight as we have our morning snuggle.
The prognosis for Gabrielle is uncertain. The hope is the brace will keep her spine from curving any more than it already is. Unfortunately, as many as 95% of children diagnosed with scoliosis before the age of ten go on to require spinal surgery to prevent progression of their curves. I have chosen to focus on what we need today, and let tomorrow take care of itself.
Gabrielle’s brace has become a part of our everyday life. In the beginning, she used to ask me why she had to have scoliosis. As a parent, I felt frustrated because I had no answer to tell her. Today, I have heard her explain to people that there is no why. “It just is.” In the end, it has been my young daughter that has taught me that no matter how “crooked” life gets, acceptance allows us to realize that it isn’t good or bad – it just is.
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