Tuesday, September 21, 2010

If He's OK, Who Am I?

When I was pregnant with my youngest son, Carter, in 2002, I had dozens of dreams in which I birthed a tiny but perfectly healthy baby. In the dream, he weighed maybe two pounds. I birthed him, tucked him into a sling, and resumed my day. My midwife posited that the dream meant I expected the baby wouldn't change my life that much. I assumed she was correct. Carter was our fourth child; babies always change things, but really, 3 kids to 4 is only a change of 25%.

And then he was born. We now know that he probably suffered a perinatal stroke (though we'll never know for sure) and has mild health and motor issues, moderate cognitive problems, and is seriously mentally ill.

So much for the baby who wouldn't change my life much!

Of the past eight years, I'd estimate that 5 1/2 - 6 of them have been wildly difficult, and starting in the spring of 2009, we discovered what we were really dealing with. Not some issues he might outgrow; not a few difficulties that would require extra care; but a serious, disabling, and potentially fatal mental illness.

Like being hit in the stomach repeatedly with a sledgehammer, the summer of 2009 was. As I dove deeper with Carter into the reality of the illness; as he raged and expressed the desire to die, then tried to jump out of the car while we were on the freeway, and finally, developed psychotic symptoms, I felt my own anguish, but mostly? I kept going. I drove Carter to OT, therapy, and psychiatry appointments. I learned restraint holds and did battle with the public school that couldn't meet his needs. I fought with the insurance company and tried to keep my other kids emotionally afloat in the midst of the chaos.

In the past few months, something magic has happened: stability. Somehow, his therapies and his medicines, his new school environment and (maybe?) plain old maturity have conspired to gift us with this quiet. Calm. It's not what any family unaffected by mental illness or developmental delay would call "calm," but for us, the quiet is a gift of the universe.

The quiet is also deafening.

Not that I'm ungrateful; not for one red-hot minute would I change any of this, but I am struggling to come back to myself. Over the past eight years, I have devoted more emotional energy to Carter than I even knew I had. I stopped working (long days that included before-and-after school care were far more than Carter could tolerate); my husband's and my social life had dwindled to almost nothing; and when we go to church now, we feel like visitors, not members of many years. Without Carter's need for constant care, and without the things that filled my life before Carter was born, there is a vacancy.

I am flailing right now, trying to find new ways to organize my life and my time. After I drop Carter off at school in the morning, I look into the six hours that I need to fill, and I'm not exactly sure how. There's no shortage of things to do. The house and yards are in dire need of attention; my grandma craves my company; I want to write a book. No, it isn't a lack of things to do. It's a lack of decision-making ability.

A crisis makes the decisions. When Carter was acutely ill, I didn't have to make decisions about how to use my time. I took care of him; arranged his medical care; fought with the school to meet his needs. I stayed close to home in case the school called (as they so often did) because Carter was falling apart. I didn't make commitments because I feared I'd have to cancel.

Since spring 2009, I've done almost nothing except work toward getting Carter stable. I assumed (foolishly, I now know) that I would pick up my own life when he was OK again. I feel a little panicked that it isn't working that way because really, I have no idea how long this will last. Perhaps things will be quiet until puberty; maybe it will all fall apart by Christmas. There's no way to know how much time I have, and I want to use the time to its fullest. Unfortunately, humans don't work like that. We're not machines; we require rest, and readjustment periods, and time.

This flailing, this frustration and confusion and struggle? I don't like it, but it might just be my favorite problem of all time. Yesterday, Carter said to me, "You know Mom, I have a pretty good life."

My frustration is real, but on balance it's not so bad in light of that. I hate when people discuss how difficult any aspect of parenting is and finish up by saying, "But it's all worth it!" In this case, though, I can't avoid it. This is a pretty great problem.

Adrienne writes regularly at her personal blog here.


  1. Wow, this resonates with me in so many ways. Our family has faced different challenges and we only have one child...but the whole concept of "If he's ok, who am I?" YEP.
    Today is my son's first day at school *without* me. I'm a bundle of nerves and anxiety about how he'll do with his new para, but I'm also lost at sea wondering what I'm supposed to do with all this time i've suddenly gained. Truly, I'm wandering around the house and my cats are looking at me strangely. It's both sad and funny. And it IS a good problem to have.
    Hope we both figure it out!

  2. I so grately appreciate your honesty, and I feel that there are so many of us in this situation. The battles, be it with schools, insurance companies, the disorders themselves, become a shawl in which we wear daily and have such a hard time taking off if and when the time comes that we might be able to, even if just for a moment. I agree, it is a blessed problem to have, and I am confident that we will make it to our new identities with the grace (and maybe even struggle) that we did before. Thanks for sharing and reminding us that this is an all too common phenomenon.

  3. You are amazing. That was beautiful and heartbreaking. When Carter said "You know Mom, I have a pretty good life" my heart broke into a million pieces.
    I have to go hug my kid now.
    Thank you.

  4. Oh, thank you all for your kind comments! This story...honestly, I was a little nervous about posting it for fear someone would give me a hard time for not being grateful. I should have know that HERE, where everyone has a child with disabilities, people would understand being grateful AND having a hard time, too!

  5. Thank you for this. I hadn't seen your blog before, but this is a beautiful introduction, and I wish you all the joy and love in the world for this new stage in your parenting life.

  6. You said it when you wrote: "We're not machines." You can't just "bounce back" from what you've been through in the preceeding years now that you have some time to reflect on it.
    I'm soo glad to hear that Carter is doing so well right now. It sounds like you are going to need some down time to adjust to the change -- before racing to fill the space with something new.
    I really enjoyed reading this.

  7. That Carter said "You know Mom, I have a pretty good life." is the most awesomest thing in the world. It's nice to see you over here, too.