Seven

When my son was first diagnosed with fragile X syndrome (5 years ago!) I spent hours on the internet. I was searching for blogs, Instagram hashtags, google images of grown children with fragile X, answers, support, anything. I wanted to know everything. I wanted to know what our future looked liked. I needed to know. I needed to see that it would be okay.

There wasn’t a ton out there and I still had too many unanswered questions. I was filled with a grief I had never known could exist and I was struggling to process it.

I started a blog because I would cry every night, all night, and typing my thoughts into the notes app on my iPhone somehow helped me process things. It was also easier for me to send my family the links to my blog than it was to tell them everything I was going through.

It became my therapy — in a way.

I haven’t posted in several years. My last post was on Conor’s 5th birthday. He’s 7 now.

I’m not a writer. I’ve never felt like a writer so to even write what I used to was surprising. I reread it now and it makes me cringe. It seems so dark…and sad. Too sad. I keep renewing this domain though.

This year I got the notice that it would be around $150 and I seriously paused. Why am I paying for this to exist on the internet? But I can’t bring myself to delete it. There is something comforting about this space. I don’t know, I guess I’m just not ready yet.

But why don’t I write anymore? I think it’s because I’m not in that dark space anymore. Like I said, I’m not a writer but in those first few months after Conor’s diagnosis, the words just flew into my iPhone through the tears. I think the fact that I can’t write like that anymore is a good sign.

It’s a good sign for you too. See, I’m guessing you found this page because you recently got a similar diagnosis. Or someone you know got a similar diagnosis and you are trying to learn about fragile X too. Welcome! And I’m sorry. I’m so sorry because you are likely grieving too and feeling a pain you have never felt before. You have likely heard that it will be okay and you will be okay…and if you are like me, that fills you with rage. I’m here to tell you that it is okay to feel rage, and grief, and sadness. It’s okay to go through it. You have to go through it to get through it.

I’m also here to tell you that it won’t ever be easy but it will become normal. It will become your normal and it will be all you know. You won’t feel strong or brave or impressive — but people will tell you that you are all the time.

And your loved one with fragile X? They will be okay too. They will thrive because you are fighting for them and they are fighting for themselves too. Conor works harder than anyone I know (and he celebrates harder than anyone I know too).

But you, you are doing the work to ensure they have the right therapy appointments, supports in school, friends who accept them, adaptive sports and activities they can participate in, tools at home to help them become more independent, accommodations for every trip you take (including a simple trip to Target). They will teach you more than you can even imagine and it won’t seem so hard all the time. It sounds like a lot but you can do it. You will do it.

Then, one day, another parent at their school will introduce themselves to you and tell you how much your child has changed their child’s life. How much they have learned from your child. How incredible it is to hear their child tell them about “Conor at school” and how they help him at lunch and how he is reeeeaaallly good at basketball trick shots.

…and you will cry just as hard as you did that first month after the diagnosis. But this time it’s different. It isn’t grief anymore. It’s pride? Or relief? Or happiness? You aren’t really sure but you know it’s better than it was 5 years ago.

A lot has happened in the last 5 years and maybe I can share that here too. That way, if you found this blog after receiving a difficult diagnosis, you will be able to see the future you can’t imagine yet and you will be able to see that it really will be okay. I won’t make any promises though because life is busy and I am tired.

(And you might also wake up at 5 am every single day because your fragile X kid thrives on routine and doesn’t know what sleeping-in means. If you have any tips for that, I’m all ears.)

XX, Bev