Within twenty-four hours of our daughter’s five-year-old check up she was diagnosed with juvenile scoliosis. I remember sitting in the doctor’s office, facing the computer screen, staring at the x-ray of my daughter’s very crooked spine and feeling sick. Very sick. I knew nothing about early onset scoliosis. There was so much to take in, I could barely focus, I could barely breathe. I heard the doctor say that scoliosis is a three dimensional deformity, in that the spine not only curves, but it twists like a corkscrew. My daughter sat beside me. She too was watching her spine on the screen, her eyes wide, listening to everything the doctor said. I don’t know what she was thinking, but I could tell she was listening. My husband and I asked a lot of questions but most of it was a blur of horror that this was happening to our perfect little girl. The doctor said she would be fitted for a brace. She would wear the brace twenty hours. It would never straighten her spine. The most we could hope for over the next ten years of wearing the brace twenty hours a day, is that her spine would not get worse. It would never improve. The odds of success, thus defined? “It’s like the LotoMax,” the doctor said. “The statistics don’t really matter to you. What matters is what happens with your daughter. And that we can’t predict. Even in the LotoMax somebody wins.” He gave us a website to check out. I checked out the site as soon as we got home. The odds of “winning”? Less than 5%.
Fast forward ten months. Our daughter has become an expert at educating the public on her Boston Brace, and why she has to wear it. I’ve noticed during these mini seminars she gives to everyone she meets for the first time, that she watches closely for the reaction. In Kindergarten the students were accepting, even envious of her “fancy armour”, but I fear a new year in a new school that things will be different. She has done exceptionally well with wearing her brace and we have gotten excellent reports from the doctor that the brace is highly successful so far. But, someday, someone will make fun of her and her brace and I dread that day. Still, it has become the new normal for her and we are pleased that she can take her brace off for swimming, ballet, soccer etc. I can’t imagine those poor children who had to wear a cast full time for juvenile scoliosis.
Now that we have almost made it through a whole year, there is a light and I feel confident that we will make it to the finish line. There are no guarantees. Surgery and rods and pain may still be in our future but for now we are taking one step at a time and enjoying life to the fullest.