I’ve been on hiatus. Or would you call it a vacation? It hasn’t been much of one in life, but online it has for certain.
I just haven’t had the time to put effort into blogging like I need to because the house and the kids have needed me so much more. It’s one of those seasons in life – one where I try to keep up while feeling like I’m just barely making it and trudging along. It will get better but for now, I’m just a head above drowning in it all.
This week has been a medication adjustment week for Jackson. Last week he broke through with a seizure. Just when you think you can breath again, you stop and you realize this may never end.
It will never get easier walking in to see my baby breathless – lifeless – wondering if he’s going to come out of this one – running to grab the Diastat just to make the seizures stop. It’s something only a seizure parent can understand. It’s become a fear for me, wondering when a seizure will hit us next and how many more will follow. Wondering if the next one will take my son from me.
I can honestly say, I didn’t fear this disorder until now. I didn’t fear it with Emma. I was beginning to with Laycie. But with Jackson, fear has set me on edge. Just how easily they could be gone has become reality.
I watch daily as friends battle this same disorder with these same fears I have. I watch daily as friends share how other seizure mother’s have lost their babies – both young and older children. And I see the same fear I carry in their posts, their statements, their shares. Nothing can prepare us for this.
It’s life – and we live it daily because we have to. We watch others who take the simple things for granted: like playing on a slide or crying it out to sleep. Our children can’t do these things without us holding our breath and waiting to hold them just in case a seizure happens.
I didn’t come here to talk about Epilepsy tonight but somehow it consumes our life. It IS our life. There’s no way around it, no changing it, no ignoring it and no moving forward from it. It’s here every day affecting how we live.
And so we wait to see what tomorrow is going to bring.