Why can't I write?

When we found out Micah had Fragile X Syndrome back in 2018, I was desperate. Desperate for someone to have written about their life and their experience of living with Fragile X. Firstly because we'd never heard about this intellectual disability before but also because a lot of the specialists/consultants that we spoke to in those early days couldn't tell us much about it either. 

Will he be able to be toilet trained?
Will he be able to read and write?
Will he be able to ride a bike?
Will he be able to drive a car?
Will he be able to live independently?

All these questions, and more, were met with 'we don't know', or 'we can't really say', or simply 'it's a case of waiting and seeing.

All really unhelpful answers.

In my desperation I tried to read everything and Google everything but I kept coming across stories of families with grown up children/adults with Fragile X and this was really not helpful. It was too hard for me to look and read what a future could look like with teens, young adults and grown ups living with a disability. I wasn't and still am not ready to face that.  

I was desperate for someone to be writing. Writing about their life in the present and the experiences they were facing. The challenges but also the little wins. The feelings they were feeling. Someone who was a little further ahead on this journey (but not too far) and had some answers to a lot of our unanswered questions, as well as any joy and glimpses of hope they could see and that they were clinging to. I wasn't looking for someone that I would necessarily reach out to (I wasn't ready to do that either), but just someone sharing a life that was similar to mine.

I might not have been looking in the right places, but for me back then, I couldn't find it. I couldn't find someone sharing their 'fragile' life and it was incredibly lonely.

So, in 2021 I started this blog knowing that something like this was what I so desperately needed. And I anticipated that this might also be what someone else might have been needing, too. I hoped it was going to raise awareness, increase understanding, encourage acceptance and be a support to others on a similar journey. But even with all of these motivations sometimes I just can't do it. I find I just can't write. My head is always full, our experiences are of course ongoing but sometimes I just can't write.

There is no pressure on me to write. It's my choice what and when I share things but even without the pressure, sometimes I just cant write and it frustrates me because there was a day when I so desperately wanted someone to write.

I want to write, I really want too. I want to be able to help raise awareness of Fragile X and to be a support to someone else.

So if I want to, why can't I? Because sometimes, truthfully, it is just hard, really hard. Too painful, too vulnerable, too emotional, too overwhelming and too real. Writing things down can really help me as it's a way of offloading all the things that I'm already internally thinking about anyway but it also just makes it all the more real. 

This isn't some made up story where I'm distanced from it, standing on the outside looking on. I'm living this completely and fully. I'm living this unexpected fragile life and so sometimes I just can't write.