As the U2 song goes. Can't live with or without you.
George is going to the hospice today, less than a week after he was discharged. This is a scheduled respite stay, but boy do we need it.
I am writing this blog with George cradled in my arms just waiting for his suppository to kick in.... too much information? Maybe, but I said this will be honest. He's in so much pain and his cries are deafening. As the suppository gets to work, the relief shows in his face and he begins to relax and even starts to nod off. It was yet another long and sleepless night for all.
I look at his little face and think how much I'm going to miss him. I hate not having him at home. It feels cruel, but it's for the greater good.
Natalie and I haven't been to bed for 4 nights now. We are surviving off the odd hour slumped on the sofa here and then, when we physically can't keep our eyes open any longer.
George is suffering and the stress brings on siezures and siezure like activities. The hospice will provide an opportunity for this to be monitored and they can look for changes in George that in the eyes of parents may go unnoticed.
It's hard work taking George in, he doesn't travel light and the feeling of what's the point always goes through my head. All this effort for a couple of nights, but the point is, we all really need it! Our batteries are empty.
It feels like we are trapped in a vicious circle of respite, discharge, burnout and then repeat. There seems to be no end in sight.
There are plans in place and I know we will get there with George. We will get him comfortable, we will have a nice family day out somewhere! It just feels so out of reach at the moment.
I will miss 'little G' whilst he has his stay away, but will sleep easy knowing he's in the absolute best hands.
We are so lucky to have the hospice involved in our journey. Without them we would be in a very different place which is scary as the place we are in right now is such a difficult place to be. We feel like we are barely treading water, struggling to keep our heads above the surface.
George is our little miracle and he's fighting the good fight and we will support him and give him every opportunity but we need to look after ourselves to ensure we are fit to do it.
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