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.
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.
Related Stories
