When Isobella was four she was diagnosed with absence epilepsy (also known as petit mal epilepsy) which meant that she was having blank spells of ten seconds or so, many times a day. It took about six months to get this diagnosis, so although it was a big shock, there was some relief that we knew what was going on. When the time came to enrol her in school the epilepsy was not being controlled by the medication she was on, and we decided, completely unexpectedly to us, to homeschool her. Eventually we tried a new medication and it worked. We were very very grateful, even more so because the side-effects were mild. Since then the medication has continued to be successful, and Isobella has had no seizures for over a year.
Two weeks ago Isobella and I went to a specialist appointment and got some very good news. She has been seizure free for long enough that we can now wean her off her medication and presume that she has grown out of the epilepsy! We are thrilled. Ella doesn't really understand, but she is happy not to have to take her medicine anymore, and I am over the moon.
When we were in the process of diagnosing her epilepsy, my biggest fear was that somehow, either as a side-effect of the medication, or because the epilepsy itself ended up presenting as part of a more complicated scenario, my shining, bubbly girl would be some how lost. The thought broke my heart. I'm so grateful that my fear was only ever a fear. But it has made me appreciate even more than ever what an incredible thing the brain is. It holds within it the makings of our personality, our likes and dislikes, our plans and dreams... the things that form the essence of who we are. When the brain is damaged or compromised in some way, it changes us.
Or does it? A person who suffers brain injury as a result of an accident may function differently, may be less able in some respects, may speak differently and seem so different to the person they were before the accident, but they are still the same person. Back in the days before we had Ella's seizures under control, I had to accept that whatever happened to her, whatever the side-effects of the medication were, she was still the same Isobella I held in my arms as a newborn, still the same girl who we loved and who loved us back. This is something that many families know all to well. The families and partners of stroke and brain injury victims learn this lesson the hardest way, day in and day out.
Isobella is none the worse for her epilepsy. There's a chance that the epilepsy could return at a later stage, but that chance is so random that there's no point in even thinking about it. She is bright, articulate, curious and full of life. She's also a bit different. (I'm her Mum - I'm allowed to say these things!) Her brain is wired in such a way that everything is interesting, everything is exciting, everything warrants investigating and exploring. As you can imagine, this makes task completion a challenge! Do you know how long it takes this girl to brush her hair?! Sometimes it drives me almost mad, but most of the time I marvel at the wonder her brain is, and wish I could peek in one day and see what is actually going on in there.
Case in point, this morning. Isobella and I were in the bathroom together and I said "Did you have sweet dreams?" She looked up at me beaming, "Yes!" she said with a smile as wide as her face. "I was walking with Jesus in heaven and it was so so beautiful!" I took a breath and gathered myself together, and then asked her all about it. The paragraph that follows is all her words. I didn't prompt or suggest anything, I simply asked questions like "and then what happened?" By the end of the story, I was so overwhelmed that I almost disbelieved her, and asked her if she was making it up. But as you will see, this is not the kind of thing a kid can make up. You need to know that while Paddy and I are very much believers, there is no brain-washing going on at our place. We have talked about heaven in the past, but we've never ever talked about it in detail, we've never discussed whether it is an actual place, and we've never ever got close to talking about what it could look like. Scout's honour!
Isobella's dream:
“First I saw Jesus’ cross at the start of heaven, and God was crying, and all the angels were crying, everyone in heaven was crying. His servants came and took him off the cross and lay him on a special bed. Then he came back alive again. Then I saw Jesus on his throne with a rainbow over it and rainbow stairs going up to it, and then I went walking with Jesus down the rainbow path. His angels were on either side. It was very, very sparkly, sparklier than you have ever seen, sparklier than a star. Then I came home to number 66 in Jesus’ special carriage with angel horses. It was very very very sparkly.The carriage had ten angel horses. They had wings and things like a unicorn has. They shine and shine and have golden things all over them. I came home straight back through the wall into the lounge and there was a big jar of gold in the middle of the floor, it was a present from Jesus. I took it to bed with me and looked at the gold and at the bottom of the gold was my Gideon bible. It was very early in the morning and it was very dark and quiet and all I could hear were the bells on the horses. Then I went to sleep and had a very big sleep in."
If you ask her, Isobella will tell you that she actually went to heaven last night. If you ask her, she'll show you the exact place on the lounge wall that she came home through. She's six, right, and she has a lot to learn, but there are some things she knows much better than me.










