Last week Taz started school. I have been simultaneously craving and dreading this day. Craving it as I feel like I have been nearing the end of a marathon in caring for Taz during the week. This has been joyful in many ways but also incredibly tough and lonely. She has not followed the same path as my friends’ children the same age and I know that I have probably side-stepped more than a few playdates to save myself pain. That has meant exhaustion for me in juggling work, caring for Taz and then of course carrying the Mental Load (multiply by 16 if you are a parent of a child with additional needs). So yes, I was craving the time when I’d finally have a day to
myself work through the mental load to-do list in peace. I’ve also been dreading the day, largely due to putting this only-just four year-old with limited understanding on a bus full of strangers. A friend did remind me the night before that it was ‘a bus full of strangers that would soon become a bus full of friends’. Perhaps not friends in the typical sense but no matter – already she marches on and yells ‘hello’ at her fellow passengers.
The day came and she got on the bus with minimal fuss, and we witnessed a cheery little wave through our (carefully hidden) tears as the bus pulled away. We both stood on the path sobbing for a little while, with pride, sadness, worry and a more than a bit of relief that finally it wasn’t all down to us. Some incredible professionals were about to come into Taz’s life and nurture her too.
And then I got my hair done. I went shopping (the fun kind not the supermarket). I cycled home. Then I picked up Big Girl and we sat on the step and waited for the bus while openly eating watermelon (we normally have to eat in secret when Taz is around). Taz came home happy but had a meltdown of the highest order when she realised I was not, in fact, Daddy (she is pretty obsessed with Daddy right now) but boring old Mummy.
She completed two days last week and three days this, all going well. We are delighted. I feel an incredible sense of liberation. Then, in its trademark way, epilepsy reminded us that it was boss (or is going to have a good go at it anyway). It had taken a holiday during the summer, treating us to a blissful six weeks of no (visible) seizures. True to form, it appears to have returned to us, hitting little Taz with seven seizures in the last 24 hours. No school yesterday, just a blurred day of sleep and seizures. Two nights punctuated by the stomach-lurching sound of the alarm going off to alert us to another. Last night she had two and this morning she was brighter. I almost kept her home again but could hear the voice of our epilepsy nurse in my head telling us to keep living life. Taz isn’t about to let epilepsy be boss and neither are we. So off she went on the bus. No cheery hello this morning, a bit quieter.
Today I took a day back to myself (the mental load can wait a few more days). My friend of 26 years came over and brought these:
That got things started nicely. Plenty of chat, silliness, a touch of shopping and a lunch out replenished my reserves. Just enough to handle a call about upcoming surgery for Taz (more on that next time).
Taz returned home tired but still plodding on.
Epilepsy doesn’t know who it’s messing with.