Today is one of the dark days that special needs parents are occasionally heard to mention.
When putting on the ‘I’m fine’ face is just too much effort.
It’s been a busy few weeks; Sam’s neurodevelopmental reassessment in Devon coincided with me developing a frightening case of cellulitis (Sam’s Dad now thinks I’m just allergic to driving all that way).
Just as we thought I was all better a horse fly bite to the thigh was all it took to reignite the flames and set the infection back off again.
The hot weather, while glorious, is damnation for seizures and my poor little man has been thrown about something awful by them. He’s not sleeping well, which equates to US not sleeping at all.
I am tired to my very core, my bones ache, and today was wheelchair clinic.
Our first visit since the service changed from NHS to privately run.
I needn't have worried, it was the same staff who’ve known us since Sam was tiny and in a mainstream pram, before the days of SN pushchairs and supportive seats.
It always twists the knife a tiny bit, remembering how things were before the extent of his issues were known, when we could just enjoy the early days of being new parents with our perfect little boy.
Before our lives imploded.
The staff are wonderful, they’ve seen it all before… the reluctance to accept a recommended chair because it’s too ‘wheelchair-like’, the sadness on the parents faces as they slowly come to accept their new normality.
I often think I’ve reached a point of acceptance with the hand of cards we’ve been dealt; most days I’m more than happy with my life, with my wonderful little boy and seeing how much progress he’s making.
Then days like today seem to ambush me from the shadows, and it’s all just too much to fathom.
Like all my friends in the SN world, today it’s all I can do to muddle through to bedtime, then collapse under the weight of it all.
To all those struggling, I see you.