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By Sue Mielenhausen
My 12-year-old son Mike has epilepsy and a learning disability known as nonverbal learning disorder. I read everything I can find on both conditions and end up with more questions than answers. I worry quite a lot. Mike worries not at all. I want to be like Mike.
At the time of his first seizure, Mike was 4. Neither my husband Tom, Mike's older brother Joe, nor I had ever witnessed a seizure. We were terrified. I was convinced that Mike could not possibly emerge intact from such a traumatic episode. Much to our relief, however, upon his discharge from the hospital the following day, Mike was in the bleachers at his cousin's baseball game showing the crowd his rendition of the Pee Wee Herman dance. With very few exceptions, this has been Mike's approach to living with epilepsy: don't let it get in the way of business as usual.
Finding my own approach has been less impressive. We do not know specifically what triggers Mike's seizures, but it is generally held that things such as stress and sleep deprivation can lower anyone's seizure threshold. I struggle constantly to find the proper balance between the need to reduce these risk factors and the need for Mike to be a "normal kid."
When he was 8, Mike began to have seizures more frequently and it was clear that this bothered him. We discovered it wasn't so much the seizures themselves that were troubling him, but his belief that he might be the only person who had them. He didn't know anyone else who had epilepsy and was reluctant to take our word for it that many others do.
Fortunately for our family, the Epilepsy Foundation of Minnesota (EFM) had a new director of communications whose energy and enthusiasm are exceeded only by her love for children. Although EFM sponsors a weeklong summer camp for children with epilepsy, overnight camp didn't appeal to Mike. Recognizing this to be the case with a large number of children, Vicki Kopplin of EFM jumped on the idea of trying to facilitate connections among children with epilepsy. Within a few months, EFM began sponsoring "family fun" events throughout the state, and Mike was sharing and relating with other kids who have seizures. He is completely comfortable with his condition now that he knows he is not alone.
Ironically, having epilepsy has given Mike opportunities to do things he never would have been able to do otherwise. In May 2004, Mike was named the Epilepsy Foundation of Minnesota's Winning Kid, an annual program designed to give a child with epilepsy an opportunity to act as ambassador for the organization and to do fun things like throw out the first pitch at a Minnesota Twins game. Because he has a remarkable ability to--as he calls it--visit with people, Mike made numerous appearances as the Winning Kid, including giving a speech to nearly 500 people at EFM's annual fundraiser. Another of his tasks was to address the foundation's board of directors. He wrote a speech in which he outlined his "Top Ten Things about Having Epilepsy." I'm not certain I would have been able to compile such a list, but for Mike it was a piece of cake.
In April, Mike was selected to participate in the Kids Speak Up program sponsored by the national Epilepsy Foundation in Washington, D.C. He met individually with Minnesota's U.S. Senators and with three members of Minnesota's House of Representatives, telling each of them what it is like to grow up with epilepsy and asking for their support for epilepsy-related programs. Mike has now added a run for national office to his list of career plans. I would not bet against it.
Rather than dwell on the negative aspects of his epilepsy, Mike has chosen to focus on the fun things he's been able to do as a result of it. I would like to think we may benefit in some way from my worrying, my obsessive researching, and my copious recordkeeping. But I suspect Mike's self-confidence and cheerful outlook will be far more beneficial in the long run. I'd rather be like Mike.
Sue Mielenhausen is a part-time attorney in St. Paul, Minn., who represents children living in long-term foster care.