It’s been about a year since I’ve written anything. A lot has happened in that time. Livvy, our seven year old daughter, has developed epilepsy to add to her health needs and disability. I really had never considered the difficulties of epilepsy before. It’s horrendous: your brain is regularly malfunctioning in ways that can damage the rest of your body like a first generation smart phone that can’t cope with the internet anymore and keeps switching off and on. Eventually you might be able to make a quick call, but it’s a gamble. And the medication to get things ‘under control’? Well, let’s just say that things are much further behind in this field than I’d realised. You see the medication used to treat epilepsy, as well as most other ‘brain related’ issues, is like opening a car bonnet and pouring oil everywhere just hoping that some of it will get into the right place, and not do too much damage to the other parts. It’s inexact to say that least. So we spend months balancing three or four very strong drugs in Livvy’s little body, to minimise seizures, only to find that they need adjusting again. And for many children with epilepsy the seizures can make them sick, or is that the medication? Hard to tell.
Certainly for us we’ve moved again into uncharted territory. Aged one we grieved our little girl’s muscular weakness and delay, realising that life would be tough for her. Aged two or so we realised that this was a full blown disability and that she’d probably not ever have a ‘normal’ life. Her lack of speech and gradual weakness has been tough. Again, you grieve the loss. But the last year has moved things to a new level. The regular questions we ask now are things like: are these seizures her bodies way of shutting down? Is she losing weight so much that it’s dangerous? Are these seizures life threatening? Will she experience another birthday? How long have we got?
As you can imagine, these are tough questions. And you can’t live in perpetual mourning. We can’t, she can’t, and her wonderful little sister (now two) can’t (She deserves a whole blog of her own!). So, right now we take her to school in the morning and she’s sick all afternoon. Because she loves school. Right now her weak debilitated state is the new normal and days that would have been devastating two years ago are average now. But at what stage when people ask do we tell them how bad things really are? We’re surviving, but it’s hard to tell how long she will. But we just don’t know.
It’s been a while and, as you can tell, I’m feeling quite emotional so let me finish this outburst with some of the ways we’re coping, in case it helps anyone:
Firstly, we’re grateful for each moment we have with her. At least that’s what we strive for. Our faith tells us that she is a gift from a creator, so we say thank you. I think this keeps us from bitterness. Obviously, we also get angry at times. Who wouldn’t?
Secondly, we trust God that everything, even our child’s life, is in his hands. We trust that he is good. We don’t fight to make life we want it any more. It’s too tiring. But like our youngest daughter trusts that tea will be there at 5pm, we trust for what we need for today. Patience, a smile, enough towels to catch the sick and sleep, for example.
Finally, celebrate what you do have. Last week we had celebrated Livvy’s seventh birthday. We had a day out, a family visit day, a family friends visit day, her birthday and her party. We were amazed by the other little girls who see Liv as their friend, even though she has almost nothing to offer them.
Kids are amazing. Especially Liv. She’s really amazing.