I do think we are a little unique, at least I don't know anyone else like us. Our family includes Steven, Jenifer, daughter Bailey is 8, and Tyler is 3. Steven and I have known each other since we were 12. We were always best friends through school. Just 2 weeks prior to Steven's birthday he was in a terrible accident. He was over at another friends house with a large group of people. They were in the backyard where there was an above ground pool and a trampoline. He was not part of the group that moved the trampoline by the pool, but unfortunately, he was part of the ones who jumped off it into the pool. It had devastating affects. He knew instantly something was wrong, but no one there believed him. He is the one that always makes everyone laugh, so they thought he was kidding. He couldn't walk. Some of the older guys carried him into the house and left him there overnight. He had no way to get to a phone; he had to crawl on his elbows to the restroom. It was not until the next morning after he arrived home he could tell his family what had happened. His doctor sent him straight to the ER. Emergency surgery was done. The doctors said the prognosis wasn't good. They feared he would never walk again. He spent 3 months in the hospital; at that point the insurance company said they would no longer pay for his rehab. Luckily, Steve had begun to walk, but he to this day still suffers great pain, spasticity on his right side and nerve damage. He is starting to have a lot of problems relating to his injury. He is currently having epidurals to help with pain, and will be seeing a neurosurgeon soon. In 1995 we were married. In 1996 we were blessed with Bailey. I had a lot of problems with my pregnancy. In my 6th month I got toxemia. She was born only a couple weeks early, and did great. We noticed right off that her left leg didn't look right, but our doctor reassured us she would grow out of it. When milestones should have happened we asked more questions. We watched as she never used her left side, she couldn't support any weight on that leg either. After a year she finally crawled, but it wasn't until after 16 months we finally found someone to tell us what was wrong. She had cerebral palsy. After being told for so long nothing was wrong we were pretty devastated. After some therapy, and learning about this disease she was able to walk. When she was 5 she started having seizures. We were told that the type of CP she has could cause that. She is now on medication to control them. We hoped as she went to school she could be like the other kids, but she is bright and she noticed things. She wanted to know why she couldn't run fast like the other kids, why she can't do monkey bars, or balance beam, jump rope is hard. So we had to tell her. She has always been so mature for her age, and she easily gets depressed. We have tried to encourage her to try everything, so that she will find the activities that she can succeed at and feel good about. We want her to feel like being a leader is so much better than being a follower. Everyone else should want to be like Bailey. Then there is me. I have been blessed with every female problem, resulting with a hysterectomy at 25. I am now 29 and have also been blessed with Multiple Sclerosis. In 2003 I was told they thought that is what I had, but tested for everything just to be sure. Once I started having to take daily injections it was a little scarey. Bailey was concerned she could catch it, but we explained it to her and now she just worries about me. My husband is one of those men who faints at needles but has been amazing in learning how to administer my injections, and has become my rock. I have been really sick for about the last year, it has been hard on us all. We don't understand what made us be so fortunate to get to experience all of this, but God must have a plan for us. Maybe it is to help others. My 25-year-old brother has Young Onset Parkinson’s Disease, and my mother suffers with fibromyalgia. Maybe they are all somehow related, we don't know. We encourage each other, and lean on each other. I know for us laughter is the single best medicine. It keeps us going, when it feels like we want to give up. The pain we all suffer is some days unbearable. Bailey has recently gone through Botox injections in her leg to help with her spasticity. I have not been fortunate enough to find something that really helps me with my severe spasticity. I think one good night’s sleep would be beautiful. Somehow, we all have to work together to beat this ugly beast. We have to find a way to get past the pain, so we can enjoy our lives. We are fighters, and we will stand up with anyone to conquer this. While each of us has something different, we all share the pain, twitching, tightening and plain annoyance of spasticity.
Thanks for letting us share our story. We have been through a lot, and everyday we learn something new. I believe someday we can truly get some relief. Thank you so much.
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