People who equate truth with fact are missing the point.

Proud/Sad

My eldest son, Jacob, played his first solo show last Friday.

My husband and I took the rest of the kids to hear him and we had a nice time, or as nice a time as any 40-something adults can have in a large crowd of teenagers. There is deep joy in watching our teens circulate among their peers. Abbie, my 15 1/2 year old daughter, ran into some boys she knew from school and spent the time flirting with them and bragging (oh-so-subtly) that the guy on stage was her brother. Spencer, my 14 year old stepson, hung out with some of Jacob’s friends, eager to test his social prowess before he officially starts high school in August. Jacob took the stage and although he was visibly nervous, he performed wonderfully. The audience was caught up in the off-center humor with which everything Jacob creates is infused.

Of the hundreds of things that Carter’s illness (bipolar with psychotic features, among other things) has robbed from us, one of the saddest is the tempering of joy. I try very, very hard to be in the present, but I’m rarely 100% successful. I couldn’t help thinking that Carter will probably never enjoy the social successes that our other children have achieved. His heart is as generous as any of his siblings, but his illness too often covers his kindness. He wants to make friends, but his bizarre conversational tics and habits scare other children.

So I’m proud of Jacob. Wildly proud. Warm from my head to my toes proud.

But also sad.

Carter, in the past year or so, has become increasingly aware that he is different. Most of the time, he’s caught up in his own concerns—the hallucinations, delusions, obsessions, anxieties, and compulsions that propel him through his life—but lately, in his more alert moments, he knows that most people don’t struggle like he does.

That awareness tears him apart. It causes me to have a bizarre not-quite-wish that he was just a little sicker—sick enough not to understand what he doesn’t (and likely won’t ever) have: play dates and sleepovers, parties and performances, teams to join and extracurricular activities to enjoy. Friends that everyone can see and hear. Confidence, contentment, and fun.

As he gets older, we are less and less able to prevent his dawning awareness and the violent self-hatred that results from it. His siblings are so much older than him that he has, until recently, not compared himself to them. They were Big Kids who did Big Kid Things, vastly different from the things that he did. At 8 1/2, 6 1/2, and 5 years older than Carter, they were almost a different species. Lately, though, there are questions. “How old was Jacob when he had a sleepover the first time?” “How many friends did Abbie have when she was the same age as me?” “Was Spencer scared to go to school when he was in second grade?”

I always knew that Carter’s innocence (about this one thing, at least; he’s innocent about so little) wouldn’t last forever. I knew that my basic explanations (Everyone has a hard time with some things, and this is what’s hard for you.) wouldn’t hold water for long. It’s sort of like teaching my other kids about reproduction. At first, I gave vague descriptions of babies who grow in women’s bellies like magic beanstalks, or some such. And at first they were satisfied. Eventually, though, I had to talk about eggs and sperm, and how one got in contact with the other.

That was a piece of cake compared to this, because as much as teaching my kids about sex was a little uncomfortable, it was a natural thing to be doing. I was explaining a normal part of life to kids who would one day experience it (much as I don’t want to even consider that!). But Carter’s illness is a perverse twisting. A wrongness. A misery-creating beast.

My husband and I talked long, long into the night last Friday, contemplating all that Carter suspects, knows, and fears. We discussed what to tell him, and how, and when. How do we help him understand the reality of his illness, while helping him remain hopeful? How do we teach him to let go of expectations that are tied to what everyone else does, and grasp at goals that are within his reach? Will he be relieved or devastated?

I don’t know, and sometimes that’s the hardest thing. I just don’t know.

I’d shrug if I could stop imagining Carter’s pain if I get it wrong.

This post originally appeared at Hopeful Parents.

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4 comments to Proud/Sad

  • I know what you’re talking about.

    I had a therapist work with me for over 3 years to help me with this.

    What do Ithink her most valuable bit of advice was?

    “Don’t rob yourself of the minute’s joy. Plain and simple: don’t rob yourself.”

    I work hard, to be deliberate, to not rob myself of any joy that is placed on my lap.

    But it’s deliberate, and it’s work…and it’s constant…and, it’s not natural.
    Alexandra recently posted..Things Dont Happen By Magic

  • Bakingmomma

    I get it. My 9 yo Aspie knows she’s different from her peers and her little sis and wonders why her. We always tell her she can do anything she sets her mind to, but sometimes I wonder what the future will bring and it makes me sad.
    Jacob did an amazing job and you should be so proud of him!

  • Its impossible not to feel pain when we look at our children. Alexandra’s therapist is right, though — you can’t neglect your own need to enjoy life. When you are subsumed by your child’s issues it is tempting to feel that this is all there is — and right now, that’s what it seems like. But even though Carter’s life is not going to follow the same pathway as his older siblings, he will have his “own” path to follow. Adjusting to that path, the struggles of living that path, those belong to him and not to you. You are a guide and a helper, but remember not to be so consumed with him that you forget yourself. Get respite, however you can, whatever you need to do, to have time to find the pieces of Adrienne, to build yourself back up and seek joy.
    Barnmaven recently posted..On being right

  • Aw Adrienne. You wouldn’t be normal if those wistful thoughts didn’t occur. Wishing your JOY!
    Beth recently posted..Be A Voice of Encouragement- Experience- Hope … Maybe Even Humor!

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