The end of an era

We've been living our 'fragile' life now for about five years and I think now more than ever I am very aware of 'it' happening. Like the hit-you-in-the-face kind of aware. I'm seeing 'it' and I'm definitely experiencing all the feelings about 'it'. The obvious thing is it's always been happening. It's happened for years. It's happened to me. It's happening all around me.

But now it seems different to before because it's happening right in front of me, right under my feet.

Growing up. My boys are growing up.

When the boys were really little I always remember those older mums saying the well-known parenting phrase 'the days are long but the years are short' or 'make the most of it, time goes by so fast'. At the time I think I would have smiled, nodded and agreed, but not really agreed if you get me because if I'm honest I didn't believe it. The days could indeed be long, or on good days they were actually ticking along quite nicely. But time didn't feel fast. Now though, it's happened. I'm at a point where yup, I get it. My boys suddenly, out of nowhere seem... bigger. 

I'm not sure when this revelation tends to hit people. Maybe it's when children reach a certain age or milestone. Or maybe it's noticing the physical changes through photos, past and present. Perhaps a conversation you have with them, or the change in height. But for some of us it might also be because we've been immersed in grief and just managed to climb to the top of this hole that we feel we've been in and it suddenly seems like five years has gone by. Completely disappeared, and you're not sure how exactly it happened.

The end of an era

Last July, Noah finished primary school for good. Like, forever. I didn't really think about it much in the lead up as we had been jumping ahead and talking about the excitement of secondary school. And in all honesty, alongside this excitement there was the realisation (and the worry) that Asher would soon be finishing his preschool groups and starting primary school.

When I was sat watching Noah play the drums in his Year 6 play, seeing photos of him through all his primary years and looking at him joining in with the songs and engaging with his friends at his Year 6 leavers assembly, there was joy. Joy for how Noah had loved primary school and for the friendships that had grown over time. Joy for the experiences he enjoyed and the fond memories he has that we can share in together. But alongside that joy there was a sadness. This sadness felt like a punch in my gut. It was the overwhelming feeling that this is the end of an era. I'm sure all parents experience this end of an era feeling. Maybe when its your only child or when its your very last child doing something but I was having that feeling when in theory I still have two more children to reach that milestone of finishing primary school. In theory, yes, that's still to come, but the reality is that for both Micah and Asher, the experiences of attending and finishing primary school will look very different to what is has for Noah. It's the end of an era but one that feels like its ending prematurely for me.

Don't get me wrong, there have been, and there will be joys that come with their experiences but there is also a sadness that Micah and Asher's school experiences will not be how it looked for me, Matt and Noah.

There is a sadness that Micah and Asher's inclusion in school will be different.
There is a sadness that Micah and Asher's participation in things at primary school will be different.
There is a sadness that Micah and Asher's friendship groups in primary school will be different.
There is a sadness that Micah and Asher's awareness of big milestones is different.
There is a sadness that Micah and Asher won't be able to share memories and experiences in the same way.
There is a sadness that for them, growing up and independence is going to look very different.

The normal trajectory

I'm watching it happen all the time through the people I know and their children, Nephews and nieces. It happens, they gradually stop playing with toys, they change physically, they grow through different schools, colleges, universities and jobs. They meet different milestones and celebrate achievements. They get mobile phones. They walk to school independently and choose to hang out with friends. They go away on camps and learn to drive. Everyone I've known has followed that 'normal' trajectory and now it's Noah, my boy who is naturally following along and growing up.

I can't help but wonder

But just as one boy starts to grow up and become more independent, I can't escape from the fact that for my other two boys, because of their intellectual disability, growing up and independence is going to be very different and unfamiliar. Now more than ever I am acutely aware that although the age gap between my boys will always be the same and although physically they are all growing into tall and strong boys, the differences in the milestones will become more obvious. The mental and emotional gap will widen and I can't help but wonder things like... 

Will they ever want a mobile phone and will they ever be able to use one and send me a message?
Will they ever be able to manage their own timetable and do their homework independently?
Will they ever be excited about the prospect of finishing primary school and starting secondary school? Will they even be aware this big milestone is coming up?
Will they ever go away on a residential?
Will they ever walk home or catch transport by themselves?
Will they ever go to a friends house without me? Will they want too?
Will they ever make their own packed lunch?
Will they ever want to spend their pocket money on anything? Will they even understand the concept of money?
Will they ever be able to play on the Xbox with their big brother?
Will they ever be able to have conversations with me about the day they've had, the way they feel about things, their worries and excitements about growing up?

Someone once said 'The days are long but the years are short'

A while after we received Micah's diagnosis (around the age of 4), I would go onto the Fragile X Society Facebook page to see what other 3/4year olds with FXFM could do/were doing/might be able to do. I could never bring myself to look further into the future at stories about older children with Fragile X Syndrome, those who were maybe 9 or above because my 3 year old would never be the 9 year old (he would stay 3 forever or so I thought). Or maybe it's just that it seemed like years away. But now it's happened. I am the mum of a 9 year old with Fragile X Syndrome. 

My boys were 0, 4 and 6 when our life became 'fragile'. And now they are 5, 9 and 12 - eek!

My boys are growing up.