Motherhood meant waiting to complete my family; waiting five long years with many desperate prayers. A mother’s heart cannot be measured or understood by mere mortals; but when she speaks you should stop and listen, then truly listen again.
Joseph was our joy; giggles and chatter. He was that matrix that pulled our family together. Maybe it was the train tracks and lego that enveloped every room that made him so present, but in my heart it was the hugs and endless chatter that only a much loved child can give.
Five years ago this Thursday, Joseph had his last known tonic-clonic seizure. It was only his second, but the horror of his blue lifeless body after seizing what seemed like forever is haunting. Joseph called it ‘the time I couldn’t see’, because he could hear us call his name.
As in the first seizure, we went to the ER and saw the resident pediatrician a few days later. ‘Don’t worry’ was the constant reply to every question and concern. Living in fear is not living, without funds to open our own medical avenues and Joseph’s case being labeled as ‘unremarkable’ there was not much more that could be done, except what I could control; diet and rest.
I clearly repeated to anyone who would listen that my cousin had died from a short life of tonic-clonic seizures. If this only happens at night, how will I know when he needs me? Eleven months after the last seizure we finally did a sleep EEG and Joseph was positive for irregular waves during sleep cycles. What now? Nothing. It was too infrequent to warrant further action. Too infrequent?? Every night as my baby slipped through the sleep cycles his brain was misfiring and putting him at risk of seizure. It was later decided to do a sleep apnea study to investigate erratic breathing.
‘Nocturnal seizures are the safest; they can’t fall.’ I wasn’t worried about a bump on the head; I was worried about the part where he turns blue. In hindsight, I don’t ever recall our pediatrician actually saying to me ‘your son has epilepsy’. The stigma of that label is alive and well today. With a diagnosis I could have contacted Epilepsy Victoria, who would have given me a place to feel heard and resourced.
There are no hard fast answers in SUDEP, but that is no different than most anything else in medicine. Theory and intervention can never anticipate the uniqueness of each individual. I did all that I knew, but by instinct knew Joseph would have benefited from a monitoring device. I didn’t even know SUDEP existed, but I knew if my son had a seizure I needed to be by his side.
On the morning of May 29th 2013, I went into Joseph’s room singing the ‘morning song’ like I always did in anticipation of his reply. As I turned around from opening his curtains I knew something was very wrong, then I realized my beautiful baby boy was gone.
We deserved to know SUDEP existed. Joseph trusted us to protect him when ‘the blindness’ came.
Global Conversation 2014