We’ve been very fortunate to go on a trip recently to celebrate Mr Danger’s surgery and the mammoth year we had as a family.
We had some great news earlier in the year from Danger’s doctor to say that he was all clear of his seizures!
Shortly after, we started to notice some changes in Danger. He was making great gains with his speech and expression, but had started to have some different body jerks we hadn’t noticed before. Sure enough, we jumped on Google and YouTube and saw that he was having, what looked like – Myoclonic Seizures.
A trip back to the hospital with a follow up EEG and it was confirmed, he was having abnormal brain activity on his ‘good hemisphere’ and seizures were confirmed. Back onto a small dose of meds and so far so good, the seizures are controlled.
I guess what I learnt in this time, we had 8 months seizure free, he was going great and so was my anxiety! Apart from this small hurdle, it’s manageable and it hasn’t slowed him down. He’s independent in that he catches the bus to and from school each day, he high 5’s all his mates when he sees them and hugs all his teachers! He’s a very tactile little dude – it’s another way he can express himself.
As much as my anxiety crept back up to a place I felt uncomfortable with, once we had him back on meds, things started to settle again. The best we can hope for is that he keeps going, one foot in front of the other. It is our goal to let him live his life to the fullest.
It is tough at times to really let go of the anxiety, as the intellectual disability at times makes me wonder how as a society we can help and understand these little people better, because one day they will be grown. I read (too much!) of where the ‘system’ lets people and families down, and I hope to God, things change and I do believe together with awareness and understanding, these changes and adjustments will be made. It still astounds me how much staring goes on towards us when we go out. Bryce tells me he doesn’t even notice the stares, because he simply does not give a shit what other people think.
I do think there is a real lesson there, where caring what others think and taking their discomfort personally, sets me up to fail. If I simply didn’t give a shit, I would just enjoy the moment, anxiety wouldn’t be high and would be much more manageable. It’s simple and something I have to work on. I guess like everyone, I have my good days and bad days, and some days get to me more than others!
The behaviour difficulties are getting tricky to manage as he’s getting stronger. Generally he’s pretty chilled, but there are a few things that tick him off, and like all kids, he will let you know! The only thing with his outbursts, it is hard to reason – the intellect there is not developed – you can bribe all you like, 9 times out of 10, it won’t work. Think a stubborn 2/3 year old – no reasoning!
But that’s ok, we can deal with that, for now and we will manage that and get the support we need as time goes on.
We are grateful each day to have him, out of hospital, living his life. We know that very fiercely that he may not have recovered nearly as well after being set free from his bad hemisphere – and for that, we are always thankful.
Now, please pass me the chips 😉