Surprising Triggers

One thing I’ve realised very recently is that Freddie starting school is a trigger for me. I’m sure some people will know exactly what I mean by saying that, whereas others will have no idea and, if I was talking to them in person, would nod away then try to ‘say the right thing’.

I guess this post is talking to the people who know. The ones who ‘get it’.

If I’m honest my reaction and emotions have taken me by surprise. I guess I’ve just been trying to ignore it. I mean, that’s how any rational person deals with things isn’t it? If you can’t handle it, or don’t know how to, then ignore it. Right?

Well at least until you have five minutes with your husband and he asks if you’re okay and you burst into tears. Then, when he asks why all you can muster (whilst also trying to absorb the shock on his face because this came completely out of leftfield) is ‘school’.

To most people, and those I’ve mentioned it to since, think I mean I’m emotional that my baby boy is starting school. Which is really missing the point and not where my emotions sit at all. Although I can understand how someone who has never lived in my shoes would jump to that conclusion, because that’s what all parents say when their kids start school isn’t it? That’s what all parents get emotional about isn’t it? Well, not me.

I’ll rewind to the various moment leading to the realisation I’d been triggered;

A month or so ago we received the paperwork for from Freddie’s new school. You know, all the introduction stuff? Well, I cried. I read everything, put it back in the envelop and put it on the kitchen window sill. I never even showed Freddie the letters from his buddies and I should have.

A few weeks ago I started browsing school trousers online. Everything I look at is wrong. Freddie needs to be comfortable so ‘skinny fit trouser’ aren’t suitable. Nor are a button or clip waist. He needs an elastic waist. He wears a nappy and I can’t see any of these trousers I’m staring at being big enough to fit that. So I stopped looking and decided not to think about it.

Then I looked at bags and lunch boxes. I ended up crying. I always presumed that when my son started school we would go to the shops and he would have the excitement of picking a bag and a lunch box. In theory he could still pick them but the problem is that we aren’t going to shops at the moment and I’m not sure he’d understand what he was picking or why. So, again, I stopped looking.

All these things I’ve had difficulty and shouldn’t have really made me cry or decide they were subjects to be avoided and ignored. So I started digging a little further into myself I realised why. He was never going to make it this far. Live, he was never going to live to school age. That’s what I thought. That’s what the statistics said. School wasn’t something we even dreamed of. In fact, I’d go so far to say that we’ve spent the last four years focusing on one day at a time that I never gave it any thought.

Don’t get me wrong, I am grateful we’re here. So grateful. I see it as a blessing. I know too many parents who never had this moment with their child. However, emotionally, I just don’t know how to handle it. I’m not prepared. I’m trying to come to terms with living in the unknown. Moving forward with our lives. I just find it really difficult.

I’m not sure I can really articulate why even. Although I’ll try.

When I broke down on James he said “I get it. Most parents have endless milestones with their kids right up until they become grandparents to their kids kids. We don’t. We have a limited amount and we don’t know when they’ll end. Starting school is using a milestone.”

That’s exactly it. What if it’s the last thing we get? What comes next? It’s reminded me that time is ticking. That we don’t know how long we have. One day, those children in his reception class will grow up, maybe they’ll go to uni, get married, or have kids. He won’t. Will they remember him? Will he always be the special needs kid they vaguely remember who died?

I’m aware of how morbid that sounds. I want to be excited. I want to feel how other parents feel when they’re preparing their children to start school but I feel hollow. I’m fearful. Suddenly the future seems like a big black cloud and I don’t know how to navigate it. I feel paralysed. So much so I can’t even bring myself to order a back pack for my son. This isn’t how I wanted to feel and I thought, if we got here, I would be on cloud nine with excitement, with gratitude.

I guess as we plod along in our life, with Freddie stable, I always seem to revert to him having complex needs but the medically dependant and life limiting stuff seems to fade the longer he’s away from hospital. For some reason being forced to look ahead makes me have to confront the monster that’s there. The strange thing is that I can live alongside that monster perfectly well, I just can’t look at it. For some reason, as I look toward school I can see the monster looking back at me and it scares me.

However, I know I can’t ignore it forever. We’re already in July and I suspect most people have ordered uniforms and school bags. I want to do those things but I also still feel that September is a life time away and we are living through a pandemic. A lot could happen in two months. Do I really want to get carried away right now? Is that sensible?

School is a big step and as much as I love seeing my boy grow up I also fear we’re moving closer towards a downturn. It’s as though a milestone like school takes us a step closer to loosing him. He’s growing up which means one way or another our time is running out and I simply can’t bare the thought of that.

It doesn’t mean we will stop living. I will get through this. I will cope. I’ve coped with worse. I’m not sure how to deal with it yet. It’s almost like I have a wave of grief I need to let go so that’s where I will start. Where I always start when things feel tough. Working through my grief. Just because Freddie is stable and we try to make the most of life and live positively it doesn’t mean I don’t also carry grief. I do and I always will. I believe it comes hand in hands with a diagnosis like his. It’s just usually I can live in harmony with it.

When I started writing about our journey I wrote warts and all. The good and bad. The ups and downs. I wrote the rawness, sometimes that was at 2am, sometimes it didn’t make any sense (it’s okay, I’ve read them back), and that’s what I should continue to do. Running is a form of therapy because it gives me freedom but writing gives me time to process and by processing I understand myself more. I’ve known for a long time I needed to get back to writing. So here I am.