If there is one thing that every parent fears, it's losing their child. If you're a parent of a child with a disability, that fear may sometimes border on the irrational. It goes through your mind A LOT. This fear never occurred to me until Ayla started having seizures. Don't get me wrong, most of Ayla's seizures are little more than an annoyance for her and her sleep deprived parents but some of them are not.
What is worse, is knowing that that 'big one' is coming. You can see the signs. It's almost like her brain is irritated. She struggles to sleep peacefully at night and instead wakes every 45 minutes to an hour, sometimes giggling, sometimes playing with her dolly, sometimes vocalising. Sounds harmless, I know. And then there is the fabulously great mood that she is in for the 24 hours before. If you were a fly on the wall you would see Steven and I exchanging sideways glances at each other as the hours pass by....just waiting. And while we wait I begin to wonder 'how big will this be?', 'will we be able to stop this one?', 'how big can these seizures get?'
Asking why, really isn't my style. It seems totally pointless because we all know there isn't any answer. It's totally rhetorical. But Ayla already has so many challenges to face and it pisses me off that she has to deal with this too.
Last week a question was asked of a fellow parent of a child with disabilities what their child's life expectancy was. After having read this post, I hope that all of you will realise that not only is that an extremely rude question to ask of anyone, it is downright cruel to ask it of a Special Needs parent. It's on our mind all the time. Don't be surprised if you have your eyes verbally scratched out by the parent ....you will absolutely deserve it.
1 month ago