Our daughter developed a condition that took a long time to put a name to. We found the name, but like a puzzle piece, we had more puzzle pieces that did not fit the picture that the doctor was painting for us. There were pieces left over, but there were holes in the picture too. We found out that she had an allergic reaction to being cold (Cold Induced Urticaria - CU). But there were more symptoms. We only had a portion of what was needed to figure out what was going on. With each doctor visit we saw new symptoms, with each visit we would find another piece to reconcile with. Four years following her initial issues with CU, we finally find out that she has not one rare condition, but two.
This second condition involved the autonomic nervous system - Dysautonomia (DYS). We later figured out that she had this condition since she was born. You see DYS is not a diagnosis unto itself, but used when you don't
know the specific form. We are still on our journey to figure out which
one.
The most prominent symptom was pain in her legs when standing. The pain was relieved as soon as she sat down. Every since she could stand/walk, we have known about this pain. I picked her up and carried her up until she got too heavy at eight years old. We battled daily with coaxing her to suck it up and move forward. Sadly, we did not understand her battle. It took until she was eleven or twelve to vocalize what was happening to her legs, that she had excruciating pain, burning and pins/needles all through out her legs when she stood up. At some point we realized that her legs were turning blue. This was the only outward-appearing visual sign that something was wrong.
Between first and sixth grade, we as parents and her school made many accommodations for her. We no longer took her shopping at the grocery stores with us. We only went places with her that required very little walking. Though she was able to dance for nine years, each of the latter years were always a battle. The very last year was hardest as we and she had to finally except that the discipline had become too much for her abilities. She had to quit mid-year what she loved the most.
By the end of sixth grade, she would transition from elementary to junior high. She would go from a facility that required little standing/walking and was able to work with her every need to a facility that would require much of her. Some dear friends knowing the system informed us of programs available to meet her needs such as developing a 504 plan. In planning for this program we had to look forward to the possibilities that lay ahead. One of those possibilities involved use of a wheelchair and many accommodations.
The first day of junior high had such a negative impact on her that I took her to the drug store the next day before school and purchased a new, manual wheelchair. It was just supposed to be temporary until we could find that magic cure or treatment that would get her back on her feet.
The wheelchair turned out to be a wonderful choice. Our daughter was able to freely move about and accomplish many things that she could not before. She gained independence from us and from the confines of our home (her prison). Her world of possibilities opened up. We had another dear friend that suggested that she try out for the Miracle League. This is a program that allows people of any age and of any disability to play baseball. The game was modified for the players abilities, but the fun and joy they received playing was priceless.
It probably took three years before we realized we had to embrace our new normal. But now suddenly, we had to embrace another level of acceptance, our daughter being disabled - handicapped. These are not dirty words or bad words, but they are words that nobody wants to use to describe of themselves or a family member. We felt like we were giving in to the condition; that we were no longer fighting for the hope that we were so desperately grasping onto. But once we accepted it, we were able to move forward. We were able now to advocate much more strongly for our daughter's needs. We were now free of our prison (labels mean nothing).
Our daughter is now a thriving young lady and we are a much happier family.
