The truth is sometimes I don’t want to remember

My experience with Wishes Can Happen this morning was quite profound. I’m completely emotionally drained and physically exhausted. At the same time, it was for a very worthwhile and and well worth the fallout.

I’m not sure if people understand how difficult it can be to talk about one of the most horrible thing any parent can imagine, a child with a life-threatening or terminal illness.

There are times that I’m able to live in a bubble and pretend that we are a normal family. I hate the word normal but in this case, I mean a family who’s child isn’t facing a life or death illness, with no hope for a cure.

This bubble I sometimes retreat to is born out of necessity. It’s purpose is to help me survive a life in which it’s likely I will outlive one of my kids. It helps me to hide that pain from everyone and be the father/husband/brother/son my family needs me to be.

The downside is that people don’t realize how much pain I’m in.

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BeckyW

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.

Sandra

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.

Lisa Jones

I think it’s important to remember the little pieces of joy that autism warriors bring into this w… https://t.co/MOZaXmQPM7

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