When we found out during our fetal abnormality scan that one of our triplets had spina bifida...I never thought I’d feel pain like it again.
Jacob has been through so much since being diagnosed with epilepsy at the very end of 2018.
His seizures are multifocal meaning they originate in several places all over his brain.
He can have a variety of symptoms, but summer 2020 was incredibly difficult for reasons that had nothing to do with covid-19.
Jacob was admitted to hospital multiple times and ended up needing to have shunt revisions for his hydrocephalus.
In all honesty, he’s never recovered from the experiences he had that summer into autumn.
It’s left him with emotional and physical damage that is showing in every aspect of his life.
Our little boy has changed.
It isn’t that “normal” growing up and missing them as a younger age twinge all parents go through, but an almighty sense of “where did he go?” that led to literally half a year of tests, appointments, talking to charities, talking to other parents, crying, asking “why him?” before finally being told he has brain damage.
All the seizures, surgeries and missed school have added up and caused trauma in a brain that is already waging war daily against the effects of hydrocephalus and epilepsy.
What did this mean?
In blunt terms, he has regressed socially, emotionally, behaviourally and educationally.
He was in a mainstream school but it became painfully apparent that he wasn’t coping.
He was experiencing non-epileptic seizures (NES) multiple times a day in school because he was so anxious and unable to cope with the pace of a p2 classroom of children who’d no obvious physical or educational needs.
So his medical team asked for educational psychology to assess him and it was a pretty damning report.
To see what we’d worried about written in black and white was so hurtful, yet also strangely liberating.
The decision was made that Jacob needed to move to a specialist school.
We’d had support from a particular school since he was beginning preschool so I was naturally drawn there.
We were incredibly lucky that when I rang the school, they’d a place available in p2, or as they called it, the “Toucans”!
It all seemed to move very quickly after his annual review with his mainstream school and I shed a lot of tears over the whole thing.
In saying that, it has somehow always felt right.
As a trained learning disability nurse it feels painfully ironic that my child has brain damage that presents as a learning disability, although it’s meant I knew exactly what I wanted a specialist school to offer him.
I was adamant that it didn’t become “common knowledge” until we’d told Jacob, Ben and Chloe.
I got a lot of advice on how to do this but it didn’t make it any easier.
Despite opening with “we have some amazing news, (school name) want YOU to join them! How lucky are you!” they all sobbed their hearts out.
I think that was one of the hardest moments, having to hold it together for them when really I felt the same way.
He did really like the idea of being called a “Toucan”, so I got him a little keyring of one that he is now nursing daily and has called “Peckers”.
I have also bought a big Toucan that I’m trying to get personalised to give to him on his first day that is fast approaching!
We’ve reached a point now where we are excited about the opportunity Jacob has been given to join this dynamic school.
He will be surrounded by pupils who go through similar struggles to him which we hope will help him cope emotionally with everything.
When I spoke to the school, none of his medical needs seemed to phase them which filled me with such confidence.
He isn’t going to be the “different one” any more which I think he desperately needs.
So our little Toucan is set to begin his new adventure in the coming weeks and we just know he is going to absolutely knock everyone’s socks off!
I’ve always said all I ever want for my children is for them to be happy and I really hope this move helps Jacob get back to his happy, bubbly self!