Counting the hours now

We are going to collect Joshua from his respite provision this morning at 10am, by which time we will have had three nights apart which is the longest that we have ever had away from each other in his life. I have certainly enjoyed the break from responsibility and, as my cough has returned, the opportunity to sleep whenever I want to. But it is very difficult to turn off the habits of his lifetime : I have still found myself listening out for him in bed, I was aware of when his medication was due and when we pulled up somewhere in the car, I would automatically expect to get the wheelchair out of the boot and retrieve him from the back seat. I imagine that as we settle into the routine of one weekend in every four, that we will adjust better and make plans around the nominated dates when he will be away – this has certainly been a more sociable weekend than we normally enjoy, going out two of the three nights!

I have heard other mothers say that they felt guilty when their children were in respite, but that is not an emotion that I have experienced. I am simply hoping that he has enjoyed himself, so that we have all three of us benefitted from the time apart. I called to get an update yesterday and was disapointed to hear that he had not slept at all on Friday night sadly: he had stayed in his bed, but had not shut his eyes at all. This is not unheard of at home but I had hoped that he would be so exhausted by a busy week that he would have slept well in a strange bedroom. There was no obvious seizure activity involved and so that implies that he was not comfortable enough to sleep. So when I enjoyed my lie in until 9am on saturday morning, he was awake all night, and I have felt incredibly grateful that he had done that where they have staff paid on the night shift to stay awake, rather than for me at home as after 2 hours sleep on Thursday night, that would have maid me ill, on two consecutive nights.

I am expecting Joshua to be excited to see us at first, we are both collecting him as we will be en route to a  hospital appointment, but then to sulk for a short while, to teach us a lesson for being without him, but I am sure that we will be forgiven by this evening. I cannot wait to get my boy back, I have enjoyed the respite but I am looking forward to getting our family unit back to normal again.

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