Spring

Last year we got a new fence in our garden. To make way for it I had to move some plants, one was a particular favourite, a sedum which flowers late in the summer. Pink flowers get darker each day, turning to intense red, then deep brown. It gets mobbed with excitable bees and becomes its own chaotic humming microcosm when the buds break. I put the sedum in a tub and watered it but by the time there was space for it to go back in the soil, it was in a sorry state. It seemed to sink into the ground through the winter. I found myself drawing a parallel with how Taz was at the time, repeatedly disappearing from us into a world of non-convulsive status. Somewhere in my mind, I knew that spring would bring changes for the sedum. At points I thought it was withering away, but actually, it was gathering all of its energy underground to break into life as the seasons changed. Now it’s bigger and better than it ever has been and has even managed to create three more little plants close by. The latter half of last year saw us hospitalised six times with non-convulsive status. I had panicked that Taz would not return to us as the same Taz, that she’d have lost some words or skills. The first time it happened I was terrified she would be stuck in this unimaginable state, unable to move, eat drink, communicate. But every time she roared back. The last few times she has gone into non-convulsive status we have been far more relaxed, the episodes have also felt shorter and we have managed them at home. We did not use any ‘rescue’ drugs for the last two episodes. It appears we have ketamine in our kitchen cupboard for no good reason at present.

We managed a high-octane trip to Butlins in the Easter holidays with cousins; led by grandma who basked in the radiating energy of the kids losing themselves in the sensory maelstrom. It was super SEN friendly and I noticed loads of families with disabled children there; it felt good to be among others in the ‘wild’.

Taz is currently back in bloom and busying her way though half term with a birthday (she’s now 9) bouncy castle, paddling pool adventures with socks, helping with cooking, digging in the garden, posting leaves and demanding ‘car’ with perplexing regularity.

Big Sis and I have had a chance to bloom a little this spring as well. A few weeks ago we flew to Spain to visit some brilliant friends of ours. When my husband suggested it, I felt deeply grateful that he was giving me that experience; it was a sacrifice for him as I know how much he’d have liked to be part of this adventure. It is sad this could not have been a family trip but it can be too easy to let the perceived perfect stand in the way of the good. We can’t go as a family so this was the next best thing. And it was brilliant. We were scooped up by our friends and we were given a true break. For Big Sis that meant a new friend to play with, sights, tastes, computer games, and a house with an actual pool (not a paddling one). For me that meant no planning, thinking or doing stuff, just going with the flow. I did not have to organise anything, every meal was planned, cooked or ordered for us and every day was already thought through. It felt so incredibly luxurious and relaxing. No pressure, no effort needed. What a tonic. I am so grateful to our lovely friends for doing that for us. We’ll never forget it.

This spring we’ve also had a big change to Taz’s team, saying a very emotional goodbye to her brilliant enabler of two and a half years and finding and welcoming four new people to Team Taz. We now have a team of ten carers and enablers. That girl, honestly.