It is two years since Luke was first hospitalised and subsequently diagnosed with Epilepsy, in some ways it feels like a lifetime ago – in others that life changing period is just like yesterday.
“How’s Luke?” is a common enough question from family, friends and acquaintances who have seen his FB page or read the blog. “He’s doing well at the minute Thank God” is my usual response. That’s what people like to hear, they have shown concern and got a thumbs up from me. What they don’t really get is that anything can change in an instant, his seizures are controlled “for now” – but that can change anytime, and living with that nagging feeling is so draining, what if they come back? what if the seizure type gets worse? what if he has a tonic clonic seizure?, how long will it take to get them back under control? – will we be able to get them back under control? – these are all unknowns.
“Will he grow out of it?” that’s another frequent query – according to his neurologist, no! and when I say that I feel that people judge me for not having hope, not looking for positives. But I am a realist, it is very likely that Luke will be medicated for the rest of his life for an incurable chronic illness.
I stood and watched Luke running up the drive way the other week and I could see he’s growing taller and I felt anxious; I’m not worried about him growing out of his jeans or school trousers, I worry about his seizures. Luke’s medication levels are based on his weight, so his Neuro can increase the 3 medications to a maximum level allowed for his weight…but as his weight increases they don’t pre-emptively increase the dosage levels. That is a good thing in theory, as it means that if he doesn’t have breakthrough seizures then he is effectively weaning himself off the meds as he grows up. In reality it means that I am on tenterhooks waiting on the breakthrough seizures and as I said, then all the what ifs around that, will we get them stopped again? 30% of people with epilepsy have uncontrolled seizures, the first thing his neurologist said to me when explaining the diagnosis is that Frontal Lobe Epilepsy is notoriously hard to control.
Luke wants to live in America when he grows up, but he reassures me he will come home all the time because he will miss me. He likes the idea of living in Spain, but not too fond of the idea of learning Spanish. He talks about the kind of car he wants to drive, and the different jobs he wants to do..this varies from a Pilot to a Builder to a Baker. I just want him to succeed, I want him to be safe and live an independent life and be happy. He’s 8, but he knows he’s different, hes noticing that his memory plays up, he finds it particularly hard to remember names. His attention waivers, he came home during the week and said he was reading in school and he had to read it over again and again, he just couldn’t concentrate. I assure him all the time that I am just the same and he should get an early night, sometimes I allude to the fact that his brain works a little differently to others because of the epilepsy – but why should he carry the burden that he is going to find these types of things challenging his whole life?.
I had a few months off work at home with the new baby, and here every day for Luke and his older sister coming home from school and to do Luke’s homework with him and I just really enjoyed that precious time. But now I am back at work, Luke is at after school I’m juggling child minders, pick ups, usual winter bugs and travelling – and although we are getting there now with managing routines I feel like I am just about keeping my head above water. I reason with myself that we are one of the lucky ones, our son goes to mainstream school, his seizures are controlled, I have work to go to, and we have a happy family life. I just try not to invite any other stresses into my life – I focus on what I need to do for my family and anything outside of that which is causing negative stress is just not worth dwelling on.
“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Reinhold Niebuhr