Pivot!

When it comes to following typical family routines, we don’t conform. When our world began to slowly and almost imperceptibly change (we had a slow and progressive journey into the world of childhood disability), I had tried to hold on to as much typical family life as possible. If we were up dealing with a seizure in the night, I’d just push on through the next day as if it had not happened, thinking we needed to cling on to ‘normality’.

Looking back now I wonder if that’s because I thought things may get better and this whole disability thing may just go away. Maybe our daughter would, like so many people tried to reassure me, ‘grow out of’ her seizures, maybe when she did, she’d catch up enough to attend mainstream school.

None of that happened and now she is almost 10 with seizures occurring most nights.

Our brilliant girl also has a severe learning disability meaning her cognition is similar to that of an 18 month old. If someone had told me all of this at the beginning, I’d have felt devastated. I’d have never known that I’d be perfectly happy as we are, yes with some major challenges, and days when I want to (and often do) scream and cry.

I think the happiness bit has been enabled by us all realising that we needed to flex our life to fit. To forget what everyone else is doing and do what works for us. We say no to a lot of things, we have learnt what our boundaries are.

When we go on holiday as family, it is not a rest or a break. It is caring in a different context. It’s still special and we have great memories, but we don’t get to rest. So, rather than plunging straight back into life afterwards, we try to book respite days when we arrive home so we can get the rest that typical families would get on holiday.

We take regular rest at non-typical times. I can often be found lying in a garden chair with a book at 2pm on a Thursday afternoon. It’s a non-working day for me (office job) and I know the dusting can wait.

If I ever feel a shred of guilt for this (which of course I do) I remind myself that rest is essential.

It's Saturday today. My daughter was due to have a day at respite, our chance to chill. My plan was to hope for a good night’s sleep, a chilled day with our older child and lunch out (impossible with our disabled child). As it happened, she had a seizure at 10.30pm, was up from 1-2am and then up for the day at 5am. But we could sleep today. Nope. She went to respite, had two seizures and was home a few hours later. My husband is now looking after her while I have escaped to write. We still got the burgers and chips we planned (thank you, Deliveroo).

We are so well versed in this pivoting and I now find it less stressful than I did. We accept the change as there is little point expending energy getting upset about it. I have mentally logged however that at the next opportunity, I need to rest to make up for this. If that’s 11am on Monday morning then so be it. I’ve got a good book waiting.