Luke has finally got off the couch, eaten something and now playing outside. He's still very grumpy but managing. Layla is still in bed. Jayden hasn't been himself either and has certainly struggled with the last two days. Not just because he's still felt ill himself but also because he hasn't coped at all with me paying so much attention to the other two. In fact I'd go as far as saying he has hated them being ill. He's so use to being the one that mum fusses over and he most definitely doesn't like to share that attention.
It's been tricky because I've wanted to do stuff for the kids and at times Jayden has been so difficult that I've had to let dad go to them and I stay with Jayden. I even got cranky with Jayden the other day because I was so tired and trying to do everything. He wanted to go in the car so I took him for a drive but I was cross about doing it because I had other stuff I wanted to do. But as we drove along I was reminded of our situation. Every now and then I get a snippet of normal but its usually when I'm flat out trying to juggle a million things so its not a time when I can breath. Anyway this was one of those moments and its not long before I'm back in the land of reality.
We drove along the river and I glanced back at Jayden in his seat and saw him look over to a ferry that was going by. In it were a bunch of school leavers laughing and partying. I instantly felt a wave of sadness come over me. He's looking at them and I'm thinking how he may never get to be one of them. I started to cry, silently and was so disappointed with myself that I got cranky with him earlier. I don't know how long I will have him with me and the other night when he had a seizure I was truly reminded of how quickly this situation can turn. I want every second with him to be perfect but sometimes it just isn't.
When I held him in my arms that night i have truly never been more scared in my life. I sobbed for ages at the hospital. I think to myself sometimes that I am coping, that I'm dealing with the reality of our life but that night it was very clear that no way can anyone prepare or be at peace with this, ever. Peace Is not going to happen. It's going to hurt like hell, be truly devastating beyond words and there is no peace in that.
I watch his every second, worry if he has an odd eye movement anything that's different. He stared at me for a long time today while we sat in the sandpit and that freaked me out but I soon realised he was just really tired. It's truly no easy journey this one and no way of really explaining to people who haven't travelled it. But that's like anything, unless you walk in that very persons shoes you can't know how it feels or what it's like to be in those shoes.
I dropped off some DVDs at the DVD store today and the lady behind the counter asked me how my son was. I burst into tears. It took me by surprise as I thought I was doing ok but clearly I needed to cry. I'm glad she asked, she probably feels bad that she did but I'm glad she did and I told her so. I much rather someone ask than pretend he doesn't exist or this situation isn't happening to us by not saying anything about it.
He's so precious. I watched him today at the park as another boy came over on his bike to play and again I felt sad. Seeing him around other healthy kids just hurts. Knowing my little man may never get to this boys age or learn to ride a bike or anything most boys get to do is just crushing. Sure, he could be the 10% and god I pray for that, it's that very thought that gets me up in the morning and through the day. But I also know there's another number and that's the number that crushes my spirit and sends me into a wave of sadness and awful thoughts.
He's happy right now, sleeping peacefully in the car. It's been a difficult weekend but I wouldn't swap it for anything. All my kids are home, all of them are with me and that truly is all that matters.
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