It is that time of year again. The time that parents everywhere dread! Back-to-School Shopping! You hear it in hushed tones, whispers and giggles that your kids are in need of expensive new sneakers and hot new clothes. I always dreaded this time of year! With august fast approaching I know my daughter will be taking my wallet for a wild ride. This is how many parents feel this time of year. You go to the mall. You see drooling young people ready to hand over a fortune for the latest trend. You see frustrated and often yelling moms. They just want to get this madness over with. After all school shopping is one of the worst things on the planet! It leaves us with empty wallets and pounding heads. This was my mentality as well. Last year I was one of those moms just dreading the back to school shopping.
However, this year is a different story. Today my daughter received her new back to school accessory, a back brace. My daughter suffers from juvenile idiopathic scoliosis or JIS. This summer it finally reached a point where the doctors had no choice but to brace. They are simply trying to slow down her curve progression at this point. Most people effected with idiopathic scoliosis have the adolescent version. It is much more common. My daughters case began at around 7 years of age. It took me many battles, three doctors and a school nurse to finally get her diagnosed. At the time of diagnosis she was nine. She had a curve of 28. We went back in spring and she was already at a 50. Once she reaches a 65 they will be forced to operate. Once they begin operating they will have to reopen approximately every six months. The prospect of one surgery is scary. But if you take into account that if we started now she could have as many as 8 or even 9 it is to scary for words to express! This is her second brace this summer. Her first one did not work. She only had the first one for a month. The spinal specialist said the x-rays were not what he was hoping for. The brace was not putting pressure on the right spots. The fact that if this brace does not slow down her curve that they will have to resort to a neck ring is another fear of mine.
Having a child who is sick with the flu is nerve racking and may make you lose a night of sleep. Imagine living with that everyday. Knowing that no matter what you do that your child, so small and fragile, will require surgery and long term rehabilitation care. The best that you can hope for is that they will need only one surgery. I know that needing only one surgery is a pipe dream. It is almost as unlikely to happen as winning the lottery. The type she has is aggressive and fast moving now that puberty is knocking on the door. The growth is only adding more fuel to the fire. I live with a constant dread. Everyday no matter what I am doing or where I am her disease and all its implications are looming over me. Every set of X-rays I find myself silently praying for the best but always expecting the worst. I hold myself together well. Never a tear shed at an appointment. Not even the first, when they explained how bad this was. I will always be strong for her. I will be her much needed rock. I will be her voice, always demanding the best care, always researching the best treatment options, seeking out the best of the best doctors for her care, and always asking the questions that need answers.
If you have a child that is ill, who has a major disease or condition, I want you to know you are not alone in this world. There are mothers everywhere that lay awake at night praying, who worry that their children will only get worse, who battle with doctors and insurance to get their child the best care, who foot the bill themselves when the insurance company will not, who worry about how they will cover the never ending
co-pays, who have to break often devastating news to their children, who hold their child as they cry about the strange looks and mean comments and who wish that their child was just like everyone else but also thanks god they are not. They are unique and wonderful! There are other parents who understand! We are at the parks, the doctors waiting rooms, the libraries, the schools, the sporting events and even at the mall, doing the dreading back-to-school shopping. We are out there and we care!
To the parents of the healthy children: You are the lucky ones! I am happy for you, for the fact that you and your children do not have to go through this. Keep it in the back of your mind that your children are your ultimate gift and understand that ill or not my children are my gift. She and her sister are my heart, my world and everything I work for! Please teach your children that kids are still kids even if they look a little different. Please understand that behind the surface smile and tired eyes that the mom you are talking with may be going through a lot more than you realise. Please do not stare at my child as she walks by in her back brace. I know she is beautiful but it makes her self-conscience. And above all else, Please pray for the many families that are just not as lucky as you!
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