When we found out I was expecting a boy I received so many comments along the lines of “how wonderful, a little boy. Oldest in the (school) year. He’ll be picked for sport because he’ll be bigger and stronger.” I remember thinking things like that had never occured to me. Nor did they interest me in the slightest. The presumption being you’re bigger because you’re older and that boys would enjoy, and want to take part in, sport.
Even before our life events unfolded I remember James and I couldn’t care less whether our unborn son liked sport. Whether he wanted to watch or play rugby or football meant nothing to us. We presumed that, naturally, he might like sport (because we enjoyed sport) but it wasn’t an expectation and it’s not so key to our identies that it had to be to our child’s.
It’s funny how things unfold, where life takes us. All these presumptions (made by other people) who, in fairness, thought they were universal things that any expectant parent wanted to hear. Only they meant nothing to us. With the blessing of hindsite I can see it confirms that we, as a society, take for granted our children will start school. Not only that but society believes (or perhaps, hopes) it’s important that our offspring our strong.
Ultimately that’s the design isn’t it? Survival of the fittest and all that. Years gone by those born imperfectly or weaker than the rest of us would’ve been institutionalised from a young age to stop them procreating. That’s if nature didn’t take things into it’s own hands before then. Society didn’t go to the lengths to save the weaker like they do now. Plus science wasn’t as advanced.
Fast forward four years.
Now we’ve had our son and, as you all know, he has a genetic condition. During the time his condition became apparent he was also diangosed with a very specific type of epilepsy. Infantile spasms. At the time of diagnosis there was a 1/5 chance he wouldn’t see his first birthday and a further 1/5 he would never make school age. All because of a type of seizure. To add to that, the statistics for his genetics stated his life expectancy would be, an average of, two years following diagnosis. That wouldn’t have taken us as far as his third birthday.
So perhaps you can understand why the S word now sends shivers down my spine. The thought of Freddie going to school terrifies me yet I can no longer avoid it. There’s applications to be done and educational healthcare plans (golden tickets) to be finalised. NOW.
Don’t get me wrong I no longer take aging and the milestones that come with it for granted. I feel very grateful that this is where we find ourselves. I truly believe being able to attend school is a privilege. Yet I’m struggling to get excited about it. Partly because, to my little family, next September is a lifetime away. So much can happen in our world between now and then. I’ve witnessed it happen to people I know. So I just can’t get excited or look forward to it. My anxiety is through the roof and I wish I could stick my head in the sand.
We have made our decision on which school we would like Freddie to attend. It’s a mainstream school. It’s something we have given a lot of thought to and we genuinely believe it’s the best place to start his education. We have taken him to meet the head and looked around. The school is wonderful. It’s close to home and the class sizes are small. The head is very supportive in regards to Freddie attending. We just need to organise the health/education funding to make it accessible for him.
When we had our meeting with the head we were a little cagey when she asked about Freddie’s condition and symptoms. I hesitated and she took that as it was a sensitive subject. James stepped in to explained my hesitation wasn’t because we find it upsetting to discuss but purely because we are aware of what we say in front of Freddie and don’t like talking about him as though he’s not there. He’s four and he understands. It seems disrespectful to go into details such as life expectancy in front of him. I’m not sure I would like it if I continuously heard my parents tell others I wasn’t going to make old bones and there was no cure.
After we’d looked around the school James took Freddie out to the car which gave the head and me a moment to talk. I explained, in more detail, Freddie’s diagnosis. I then went on to say that even being there was a huge thing for James and I. We didn’t dare dream that far ahead when Freddie was diagnosed so choosing the right place for him to spend the next part of his life was a big decision. I could tell by her face she I had surprised her by explaining his diagnosis in more detail.
I guess I’m also finding this transition difficult and I’m struggling to identify with my friends. I’m not finding it difficult because I don’t know where time is going or because I don’t want Freddie to grow up. Quite the opposite. I feel blessed beyond my wildest dreams that we find ourselves here. I think that growing up and being ready to start school is a wonderful thing and should be celebrated. I’m just not at the stage where I’m ready to take school for granted. Even once the application is done and the EHCP is finalised I fear I still won’t be. My anxiety won’t let me rest. Until the day I walk Freddie into that classroom I simply can’t let myself get carried away with the fantasy that it will actually happen… and what’s worse, I also can’t bare the thought of where we will be left if it doesn’t.
