Caring

Taz continues to power through each day. Sadly her seizures have messed with a fair few days recently. She tends to have clusters of focal / tonic seizures every few weeks. The weird thing is I feel she needs them. After a few days recovery she seems to bounce back better than before. It’s like her brain needs a reset. So while I’d rather we did not have to have seizures at all, I’ve sort of got used to this two weekly occurrence which seems to give her a good quality of life in between.

Yesterday she had a cluster of 14 and two today – this time it was only a week since the last cluster which was a bit unsettling. Yesterday’s batch saw us awake from 2am, seeing her through each horrid seizure, watching her terrified wide eyes as she realised what was coming each time. Her daddy lay next to her all night, waking with each one, swiping the VNS and talking to her. I tried to sleep but my heart ached too much to drop off.

Today she managed school but is listless and ‘ghosty’ as my her daddy says. I am hoping tomorrow will be better. She ate her supper tonight which was the first full meal in two days.

She’s been doing really well with her development, babbling away with more new sounds, doing a shaped puzzle and asserting her wants and needs, sometimes quite emphatically. We’ll often feel a small, warm, determined hand slipping into our own and firmly guiding us to something she wants. Often it’s to go on an outing – she’ll get our bags and coats for us, for efficiency.

It was young carers action day last week. Big Sis is a young carer. When we think about young carers we often think about them doing practical caring, like helping with feeding and meds, which many do. Big Sis does a little of this but only if she wants to or feels like it. I want to keep it this way. This doesn’t mean life is easy for her. Sometimes being a young carer is about not doing things. For example, not complaining when the attention is focused on her sister during a day of seizures, not holding a grudge against her sister for biting her, pulling her hair or grabbing her food, not doing things other families can – for example going out for a meal together, sitting down and watching a film as a family, going to the cinema, going on holiday abroad. All of these things can happen, just not with Taz. That stings for us all.

I am so deeply proud of the girl she is becoming. She is deeply thoughtful, kind and considerate with a iron-strong sense of morality. One way we felt looked after in the last year was the recognition of her young carer status in the school place allocation. School for young carers is often the only place where the playing field is level. I was so grateful that she could attend school throughout the lockdowns and was encouraged and welcomed. That said, school has only just become normal again, with the return of her full circle of sparky little friends and we’ve seen a much happier Big Sis as a result.

Recognising the family around the child is vital. I’ve been privileged to be involved in a programme called Healthy Parent Carers developed by our local university. This wellbeing course is solely designed and developed for parent carers. I remember when someone first told me I was a carer. I couldn’t really understand it, isn’t every parent a carer? Isn’t it hard for all of us? As the years have gone on I’ve realised the enormity of what it means to be a parent carer and I have blogged about that here. It’s a unique position to be in. It’s not the same as a carer, it’s not the same as being a parent. And it’s seriously hard. To have a course like this solely developed with us in mind is, in itself, powerful. Someone’s thought about us. When you hear the feedback from people who have done the full course you realise that this isn’t a ‘nice to do’ – it needs to become a basic offering for every parent carer, whenever they feel ready. I’m excited to hear that it will soon be delivered nationally in partnership with some large charities. Simply knowing you’ve been thought of has the power to change so much.