Out of sight, but never out of mind

We have enjoyed a lovely weekend away , while Joshua has been taken care of at his respite provision. We always try to do things that are more difficult with Joshua in tow. Yesterday for instance, I went to a church  pet service that he would have enjoyed as it was attended by 7 dogs as well as our Ruby plus two rabbits and 20 human beings. But being just me and Ruby was a much simpler experience :  I could chat afterwards with other member of the congregation without being dragged around the hall or having to leave early as he was restless. I could enjoy the hymns and join with the prayers fully, without having to do high-5s or having to shush him during the quieter moments.

We went for a pub lunch, where we were not anxious over timings, when they took a long time to seat and serve us, there was no anxiety over Joshua being restless at the table. I could eat my meal while it was hot, without interruptions and without alternating one forkfull for me and then another for Joshua. We declined puddings but we could have stayed longer and eaten a dessert if we had wanted, there was no need to rush away. We could eat and talk, there was no need to talk over Shrek 2 on the ipad.

After our lunch, we had a walk in the drizzle to the river and again we could take a different route that was not wheelchair friendly  – rather than walking along the road, we walked along a meandering muddy lane , through fields and then along a steep ridge to get to the river. Usually I stay by the river with Joshua throwing stones for Ruby to fetch, while my husband walks further on , climbing up to a waterfall and beyond. So this time, I clambered up a rock face to get to the waterfall and slithered around on rocks in the waterfall itself, just because I could do so.

After our walk, we drove home and we both fell alseep on our settee in front of the TV – there was no need for one of us to stay awake to watch Joshua. And we woke naturally , when we were rested, not when we had a cushion thrown at our heads or a tall boy sat on us! We did not eat our evening meal until after 9pm, instead I had a lazy bath to ease my aching muscles, but there was no necessity to eat early because Joshua needed to be fed. In short, respite means that we are able to focus on ourselves and what we want, rather than putting Joshua’s needs and wants first and that is what our short breaks mean to me.

After my bath I called his respite provision, as I always do around bedtime, and was upset to learn that Joshua had had a cluster of seizures in the afternoon – just about the time we were setting off on our river walk -and they had lasted long enough that they needed to intervene with his rescue medication. This had of course left him quiet and drowsy for the rest of the evening and he refused to eat his evening meal. I immediately felt guilty and sad that he had been suffering while we were outdoors having  fun. My instinct was to go and fetch him and to take over his care, as that is my role as his mother.

But then later, I gave myself a talking to – as I often need to do : the respite provision had done the right thing and had been attentive, there was nothing more that I could do other than cuddle him better. As of 10am today, Joshua will be our responsibility again , 24/7 now that he is on school holidays. I am more than happy to resume parenting duties then  and this weekend has been perfect to top ourselves up to enable us to do the best we can for Joshua, until the Friday in another 4 weeks time, when we can hand him over to them once again.

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