So I haven’t written on here much lately. I haven’t written much of anything lately actually. We got some news at the start of the year, and it’s taken me six months to process it and feel like I could start to get my head straight again. You can probably guess what it is from the heading – Bear was diagnosed with epilepsy
It was both a win and a bit of a blow. Regular followers of this blog will know that Bear has suffered from complex febrile seizures for pretty much his whole life, and it turns out he was one of the rare children to have them be a signifier of epilepsy.
First of all this was a win, because we have been fighting for a diagnosis, for something to explain why not all of Bear’s seizures were febrile, why they didn’t seem to fit the pattern of other children who are susceptible to such seizures. It was an answer. It was an end to the constant checking of temperatures, to the fear gripping us everytime Bear sneezed or coughed. Sure, it means that the seizures are more random – we know illness and stress are triggers, but not what else as yet. But it’s still information. And as parents, we crave information, we need it like nothing else to help us feel like we have a shred of control even in the most uncontrollable of situations.
And of course this was a blow because it made me think of all the things that Bear might miss out on with an epilepsy diagnosis. Could he do swimming classes? Martial arts? Will he have it his entire life? Will he ever be able to get a drivers license? Would it affect his development? Could he go to a blue light disco?
This whole dilemma really hit home when we planned a recent cinema trip to see Incredibles 2. As a reward for a few things (giving up his dummies, taking his medication twice a day without complaint) Bear had been promised a trip to the cinemas to see his personal idol baby JackJack on the big screen. It had been hyped for weeks. He had planned his movie snacks, found pictures of the special cups that they had for sale for his water – he was going to see baby JackJack! The day before, a work friend of mine went to see it with her children and sent me an urgent text that made my heart sink.
“Hon I thought you should know that Incredibles 2 has black and white flashing lights through it and there’s one really long sequence which would probably make him really sick”
While Bear doesn’t have flashing lights as a seizure trigger, like many epileptics bright and flashing lights do make him feel quite ill and give him headaches so it’s obviously a no-go for him in a darkened cinema. So here it is. The first thing he will miss out on because of his epilepsy. So I told him. He cried. I offered a different movie at the cinema, he started muttering under his breath about how Toy Story 3 is for babies and he’s not a baby he’s a superhero like baby JackJack and JackJack woudn’t have to go see Toy Story 3.
But do you know what else happened? He was okay. His friends at daycare all chattered on and on about going to see Incredibles 2 on the weekend, and Bear was okay. He loudly announced to everyone that Incredibles 2 would have made him ‘sick as sick’ and his mummy’s work friends were trying to find a special version he could watch at home with the lights on.
Missing out on a movie might seem like a small thing but it’s representative of the journey of learning what things my son will have to be excluded from for his own wellbeing, and how he will deal with those things. It’s shown me just how emotionally resilent the little boy I have raised is. It’s made me realise that while he will have to miss out on some things, that’s the nature of the epilepsy beast – he will be okay. Through carefully educating the people leading his activities, he can do swimming and martial arts and dance under disco lights and do all the things that little kids do, while probably still milking the guilt about the time he couldn’t see Incredibles 2.