Five years ago today, my best friend had her first child, a beautiful baby boy. He was named James William, for both his grandfathers, and I knew he would touch my life, but it makes me breathless to think back on just how much he has.
To all appearances, "Jimmie" seemed quite healthy. He was basically full-term, a decent size and weight, and he seemed to be thriving. Then one night, I got a call from Lacy that stopped my heart. Jimmie was having some strange episodes, and as she described them, I grew sick. I was so afraid to tell her what I thought, but she had called me for advice and wanted to know: were they seizures?
I advised her to call the pediatrician the next morning and demand that 4 1/2 month old Jimmie be seen right away. She called later to tell me that she had an appointment scheduled with a pediatric neurologist who would confirm my greatest fear. Jimmie had Infantile Spasms, a serious form of childhood epilepsy that often results in brain damage.
Many treatments would follow, and for a time, they seemed to be successful at first, but then he would relapse, and his seizures began to change. They went from the "wiping his eyes" type movement I saw (several times a day) when I visited a few months later, to more obvious seizure-type movements and behaviors. Several combinations of medications were attempted, including ACTH, a steroid often used to treat them that has had some success, but at about 20 months old, Jimmie's diagnosis would advance to Lennox-Gastaut Syndrome, which meant his epilepsy had become intractable and was not responding well to medications.
Finally, late last fall, he was found to have had a growth spurt and was given a dose increase of one of his medications. Since then, he has had no known seizures. That's the good news. The bad is that all the seizure activity has resulted in significant cognitive damage. He is slowly starting to advance in development again, although his 2 1/2 year-old brother, Charlie, is way ahead of him.
I was actually the one to introduce Lacy to epilepsy in the scariest way possible, when she witnessed one of my grand mal/tonic clonic seizures early in my pregnancy with my son, but in comparison, my epilepsy, also from infancy, has been amazingly uncomplicated and easy to control. It has even made me complacent, I'm sorry to say, and even when I had two seizures in the past 2 1/2 years, I was able to blame them on stupid acts on my part and walk on. Sure, I have known, at least on a casual level, that most people's epilepsy is more complicated than mine, but knowing Jimmie and his struggle has been very humbling. He has taught me all about courage and living for the moment, and I am so proud to say I look up to him as an example of how to live.
Happy, happy fifth birthday, sweet Jimmie!!!! I can't wait to see you, Charlie, and Mommy and Daddy!! xxxxoooo<3<3<3<3 LIZ
