Children & Youth with Epilepsy
Rowan
Today Rowan had a seizure that hurt him. I think it hurt him badly. I was upstairs working and he was downstairs with a respite worker. I heard him wail. And then walking or stomping. I was on a call that, for some reason, felt important. I texted the respite worker if she needed help. She said, "It was a little startle/seizure that definitely hurt. Uncomfortable to the point of trying to get away from it and we ended up across the room."
Rowan has lived with seizures since birth. Mostly we experienced something fairly dramatic (7-10 minutes) once a year or every 18 months. Then, three years ago when he was 6 he had a seizure that could not be stopped and despite tertiary level interventions lasted for hours. The swelling and subsequent damage to his brain left him with permanent disabilities. Of particular note is his inability to eat or swallow (g-tube fed), his inability to talk (uses a communication device), and some paralysis and weakness down his right side. He is supported by a wheelchair or a person for all of his mobility. These are the obvious impairments to others, but I assure you the rest of the list is long.
His seizure activity since then has multiplied 100 times. He has multiple types of seizures every week and multiple events a day. We see that they make him tired. And sometimes I ask him how they feel. He uses his thumb (up or down) to answer questions. And we keep it simple as his development is stalled at 5 or 6 years of age (he is 9 years old). So, sometimes when we're falling asleep (someone is with him 24/7) I ask him, "Rowan how do your seizures make you feel? Are they exciting, do they tickle, do they hurt?" He's only ever indicated that they hurt and that it hurts everywhere. I don't think they all hurt like the one this morning… but I know a lot of them do.
And one could easily understand if Rowan was a generally anxious or angry child because of what he feels with his seizures. I know that lots of people with uncontrollable (refractory) seizures are. I would personally flip a table every time I saw one if I knew my brain was about to hijack my body and put me at risk of falling, injuring myself, or just 'hurt me everywhere'. But Rowan isn't. His effort to be happy is greater than anybody's and his delight in simple pleasures is beautiful. And a good pun can make him laugh for days.
In fact, I'm pretty sure he feels fortunate, lucky even. And, to be honest, it's only on the really bad days, when he still has some energy and is just lucid enough, that he even bothers to answer the questions about his seizures as he's heading to sleep. As if he knows that to focus on the now and the good is the only way to get around the things that we cannot control.
Jane (mom to Rowan Pettinella)
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