Over 5 years ago, Chuck wrote an article for the Epilepsy Foundation’s national publication entitled, “In My Own Words”. I was reminded of it recently and decided to post it. The amazing history of this article is that it is the reason we finally got our diagnosis. At the time the article was written, all we knew was that Shelby had an unknown seizure disorder. After it was published, we got a call from a mom of a Dravet child who read the article. She told me that Shelby sounded just like her son and she thought we should be tested for Dravet Syndrome. I blew her off. At this point, I felt like Shelby had been tested for everything under the sun and we had spoken often with well-meaning people who “knew” what was wrong with Shelby and what we needed to do to fix her. This sweet mom asked me to look up their website. That site is now called Dravet.org. What I read there could have been written about Shelby. I knew immediately that Shelby had Dravet Syndrome – although we waited 6 months for the offical test results. This article, and the wonderful community of Dravet parents are responsible for better medical care of our precious daughter. Below are my husband’s thoughts on Shelby 5 years ago:
Guest Blog
Originally published on Feb 1, 2013
Life is full of surprises and having a child born with a disorder I knew nothing about was a big one.
It’s funny how you can become an expert on something when you need to be. And I needed to be. My daughter Shelby began having generalized tonic clonic seizures over seven years ago. She wasn’t even 5 months old. My wife and I were petrified. How things have changed. Her “events” have changed in type, frequency and duration many times. They seem so commonplace now. Shelby’s seizures are a part of everyday life. A day WITHOUT a seizure is now a big event.
It’s a helpless feeling to watch my child suffer. The helplessness multiplies as we try endless pharmaceutical combinations and treatments hoping that the next one will bring control. To date, control has eluded us. Because of this, we can’t hire a teenager to baby sit. We have to rely on trusted adults to volunteer and we cherish our precious time out. Shelby has severe developmental delays. She developed on the slow side of normal until she was 18 months old, at which time we saw an abrupt halt in progress. In all the years since, she has only gained about four months’ worth of intellectual, social and physical development. At 7 years old, Shelby operates like a child not quite 2. She speaks in one-word utterances, can’t run and needs help feeding herself. She has grown so big that changing her diaper has become one of the biggest challenges of all. We spend our time running from doctors to therapists and meetings at school. Sometimes, I mourn the fact that my daughter will probably never live independently. And today, I mourn the stacks of medical bills waiting to be paid, and yet…
Shelby is a wonderful gift from God. I have watched her bring out the best in those around her as children—normally so self-centered—learn sensitivity and how to nurture someone who is different. Shelby’s special gift is love. She brightens the day of many strangers as she asks for hugs wherever we go. We call her our world-champion cuddler. She loves to sit in my lap and snuggle. Shelby has prompted the involvement of our entire family with the Epilepsy Foundation. My wife, mother and mother-inlaw wrote a book about Shelby that introduces young children to seizure disorders. I serve on my local board and raise money to increase epilepsy awareness and improve the lives of those who suffer with the disorder.
At times, I find myself focusing on my daughter as a cause—something to be fixed. But it would be a tragedy to keep thinking that way and miss the blessings of today. I pray for Shelby to be healed and I wish she were developmentally appropriate. But the bottom line is, if Shelby never gets any better, my life is so much richer because she’s in it. I know a lot of others who would say the same thing.
Transition. If you aren’t a part of the special needs community, this word may not mean much to you. I must confess that it strikes fear in my heart. Transition is a fancy word for “change”. You can understand that one, right? No one likes change. In special education, “transition” refers to the process of preparing your child for life after high school. I’ve got several years before this change takes place, but our school district wisely pushes us to start thinking and planning for this well in advance. So that even if we aren’t emotionally prepared, we are financially prepared. They do have to push me into thinking about it too. I would rather think about road kill than imagine what life could be like for Shelby as an adult. How can I picture her all grown up when developmentally she