Sometimes it seems like epilepsy boils down to counting. You count seizures. You count the number of interminable minutes each seizure lasts. You count the days between seizures. You count treatments. You count medications. Surgeries. Ambulance runs. Calls to 911. You count visits to therapists - physical, speech, occupational. You are nearly always counting. But mostly you count the widening gap between the initial diagnosis and the present. For our son Eoin - diagnosed at three months old - it’s 15 years. And counting.
Eoin was first diagnosed with Benign Myoclonic Epilepsy. He would have hundreds of myoclonic seizures each day. So frequent were those seizures that his infant’s bouncy seat seemed motorized by some unseen force. Up and down he would jump. At two years, that diagnosis was changed to Startle-induced Myoclonic Epilepsy. You couldn’t walk by him without triggering a seizure. At seven years old, the bottom fell out. He began having grand mal seizures—long ones—lasting sometimes more than an hour. His breathing would stop. The pink of his cheeks would turn a ghostly pale blue. It was in this period that his cognitive development, as limited as it was, stopped.
Since then, his life has been an uninterrupted fusillade of doctors’ appointments, hospital visits, medications, blood tests, and therapies, and none of it has given him that elusive, lengthy break from the dogged and mysterious force that strikes like lightning all too frequently inside his brain. There have been “honeymoons,” but none have lasted long enough for him to turn the tide on his lagging development. This year his condition has gotten worse, with grand mal seizures playing out without interruption for up to 30 hours at a time. Seizure control continues to elude him. Treatment options have been all but exhausted. As I write this, Eoin lays in a bed in the Intensive Care Unit at Children’s Hospital in Boston in a medically-induced Pentobarb coma—while a sizable and growing faction of family and friends wait on the edge of their seats, hoping and praying that this time and this treatment will make a difference.
In spite of it all, Eoin rises each morning and smiles with an ebullience that is at complete odds with his circumstances. It doesn’t matter that he may have spent most of the previous day and night in the throes of seizures. Ask him how he slept and he grins and exclaims, “Good!” It’s that face and that smile over all these years and through all the challenges that serve as our source of hope.
Ken and Cynthia,