The truth is sometimes I don't want to remember - Page 2 of 2 -

The truth is sometimes I don’t want to remember

Talking about Gavin at the Wishes Can Happen Wish-A-Thon yesterday morning was unbelievably difficult to do. At the same time, it was cathartic because I was able to talk about something very painful, in a place where people actually needed to hear what it felt like.

There was no sense of guilt from feeling like I dropped an emotional house on someone by opening up to them.

I write about this kind of thing all the time but it’s from the safety of my phone, where I don’t have to see anyone’s reactions and they don’t have to see how hard it was for me to write it.

I came home today, didn’t talk to Lizze about anything I was feeling until just a little while ago. She could see I was struggling but didn’t want to push because sometimes that can make things worse.

Allowing things to come out of my mouth like, every time Gavin experiences an autonomic crisis, we have no idea if he’ll survive it or we live everyday with the knowledge that there’s a very real possibility that we are going to outlive Gavin, makes everything more real.

While I’m caught up in the daily challenges of raising three special needs kids, the fears, pain and heartache become more abstract. They sorta fade into the background like static or white noise.

Talking about them reminds me how real they are and it’s like getting smacked back into reality by a freight train. Sometimes I just don’t want to remember these things. Sometimes I just don’t want to feel the pain.

Unfortunately, reality is where I have to live and my reality is often painful. That’s not likely to change but I deal with it as best I can.

Anyway, I wanted to provide some insight into why it’s so difficult for me to do things like I did at the Wish-A-Thon. I mentioned how hard it was but didn’t help you understand why it was so hard for me.

I know it’s important to talk about these things and that’s something I’m working on but it’s never easy.

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I think I get it. Although I don’t have the same fear, I have little hope for Henry ever having an independent life. If I think about it really hard I could cry, but I did all the crying in the world and it didn’t change things. So we live with what we must. So all we can do is love our sons, hope for the best, but know that the worst is more likely.


I understand. Even though you’re telling your “story” in a safe place where people understand and some can empathize, it can completely drain a person in many ways. Raising a child who’s in a life or death situation and who you know you will outlive, is not a “normal” situation. The bucket gets full and has to be emptied.

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