Home > PVL > A very private hell

A very private hell

I am so, so proud of my little boy. He can crawl. He can cruise. He talks up a storm. He even stood alone for a bit yesterday. He is really doing so great, for him. He has severe delays physically, obviously, but he has been progressing so very well.

Still, I have my days when I guess I feel sorry for myself, or for him, or just for the whole family.

We didn’t bargain for this. That may sound bitchy, but unless you’ve been in my shoes (and I guarantee you haven’t), you can’t judge me. It’s not pity. It’s anger. I don’t know who to be angry at. There’s nothing I can point my finger to and say “This is why my kid is disabled.” Prematurity? Probably. How do you direct anger at that? I don’t want this. Not for me, not for my family, and especially not for that sweet, sweet angel that has done nothing but love people. He’s bright (yes, he’s bright mentally – not that it would make him less loved if he wasn’t), he’s loving, he’s cute, he’s polite, and he’s a perfectly adorable little boy but he has this… thing and it hangs over him. It’s going to follow him for the rest of his life. I worry. Will he die alone? Who will help him when I’m gone? Will he find someone to love him and have a family with him, or will he die a bachelor in a lonely little apartment somewhere, never knowing what it’s like to have love reciprocated? People are fucking shallow. Don’t tell me they’re not. This is a legitimate worry. I’m not afraid of my eventual death. What I am afraid of is him being left behind.

I don’t want this horrible thing for my baby. It can fuck directly off… except it won’t. It just won’t go away.

Yes, it could be worse. I know that. I don’t need to be told. That doesn’t help. What seems like it would be a comfort only makes me feel guilty for feeling grief. I know it could be worse, but it could sure as fuck be better too.

Louie was telling me about a little baby he saw running around the hospital last night. He feels it too, especially when he sees these little babies that are doing things our son can’t. Yes, we get jealous. We’d never, ever wish this on another child, but this is a very private hell. Even within the same disorder, the stories vary so greatly. Nobody could ever understand. I have friends, thanks to the wonderful web, that have kids with the same condition and I often can’t identify with them. I have a wonderful support system. I can’t say I don’t. They’re there to cheer and to cry right along with us, but there’s no comparing. I don’t care what anyone says. We all do it. It’s natural. We may not say it out loud but when we see a kid walking at a certain age, we think “Wow, my kid will do that soon.” or “My kid did that a month earlier.”

Perrin is racing, racing, racing just as fast as his little determined but damaged brain can take him, and kids half his age, and now a quarter of his age are passing him up. I love that they are, for their own sake, but I will admit as I’ve admitted before that I’m jealous.

99 percent of the time, I focus on what my son can do instead of what he can’t. I am so, so thankful for everything he has accomplished. Then there’s the other 1 percent of the time, when I have these feelings and fears, and nobody can understand it. Sometimes not even my husband, because we approach it from different viewpoints, yet we’re all each other has because there is only one unique Perrin. 99 percent of the time, that unique Perrin makes me beam with pride. Right now, I’m in the other 1 percent and I feel very alone there.

Categories: PVL
  1. Crystal
    August 15, 2011 at 12:14 am


    You know Elanor’s story. I can relate to the fears, the anger that has no target (in E’s case, the likely reason she got sick was that SHE knocked out solidly placed IVs…can/should I get pissed at a days old baby?), the aloneness, the envy at “normal” kids, and a lot of what you’re going through.

    I send you internet ((hugs))

  2. August 15, 2011 at 7:33 am

    Isn’t it funny how we’re together in our aloneness, yet so very alone in it all? None of our little ones asked for this. If someone skydives and gets hurt, yeah, it was their stupidity. If they get shot as they were holding up a gas station, again it was their stupidity. These innocent little children shouldn’t have to deal with this. 😦

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