My Son's Gimpy Fin

This has been cross-posted at Two Women Blogging.

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Now, I may not be one for much crying, but I did cry (I'll admit it, I did) the first time (ok, ok! few times) I watched Finding Nemo. Even before I lost track of my son a few times, I related so much to the anxiety, the overwhelming desire to keep one's child safe from harm, that Marlin (a.k.a. Nemo's dad -- see, I've watched the movie enough that Marlin and I are on a first name basis) felt.

In one of the DVD features about the making of the film (oh, yeah -- I read instruction manuals too), one of the writers said he is often asked why Nemo has one gimpy fin. He said that they were going to make Nemo learning to swim with this disability a bigger part of the plot line, but even though they didn't, they left the gimpy fin in. Why? Because it symbolized that weakness or that difference in your child that every parent worries about. It's different for every parent and every child, but there's always a worry there.

Jay's great fear centers on adoption; she worries that her daughter feels the pain of that first loss in each subsequent loss and fears being abandoned. And Jay was right when she said that my fear centers on autism, although it's been there for far longer than I have been able to apply the word autism to my son's differences.

When my son was an infant, he would scream these painful, horrific screams. In those screams, from the very day he was born, I always heard him saying, "Mama, please, please help me. I'm scared and I'm hurting and I need you." They were screams like he was being tortured, but when I held him and nursed him, he'd calm down. He seemed so much more vulnerable, so much more helpless and so much more susceptible to fear and pain than other children.

In my postpartum state (in what I now recognize as the extreme anxiety of postpartum depression), I used to have daily panic attacks, daily waking nightmares. I would think about taking him out for a car ride, and I would slip into a vivid picture of us crashing. And the very worst thing that would happen would not be that he would die, but that I would be killed or pinned somewhere unable to reach him. I knew he'd be screaming those screams of pain and terror that I heard every day. And my absolute worst, gut wrenching fear was that there would be no one there to soothe him or help him, because he couldn't help himself and I was the only one who knew how to help. I worried that without my breast, he'd stop eating. I worried that he would live the rest of his life in pain and terror.

I understand those cries better now. I know that his senses don't take the world in the way other people's do, and that everyday events can overwhelm him to the point of pain. I know that he needs everything in his life to fit within the rigid pattern he's defined, not just in order to feel comfortable, but in order to survive.

After Hurricane Katrina, I had some of the same panic attacks. We don't live in the path of that storm, but I saw what it did and wondered what happened to children like my son. I pictured what would happen if some disaster struck us. My son only eats three things, each of which have to be prepared and served in extremely specific ways. If I can't get his special foods, an emergency ration bar isn't going to cut it. He's going to starve. And I would picture him starving, screaming, writhing, with food available, food he was unable to eat. And I pictured myself stuck and helpless to get him what he needed.

Or much, much worse, I pictured him without us, unable to help himself. Or even in the care of strangers. After all, he can't communicate with them. Yes, my son can talk -- technically, his verbal abilities are within a normal range for his age, which is just fabulous -- but that doesn't mean he can communicate.

For example, he likes spaghetti, but he doesn't call it spaghetti. He calls it spinach. Why? Because Popeye likes spinach and he went through a phase of being obsessed with Popeye. Imagine he's suddenly in your care now, with no instructions on how to help him and no idea how to speak his language. He grunts. He cries. He hasn't eaten anything all day. He pushes away everything you offer and screams at you. If you're lucky, he'll get desperate and tells you he wants spinach. You bring him spinach and he looks at it in horror and screams, "No! That's not spinach!" Now, if he's lucky, you're a nice, caring person with transportation to a working hospital, where he'll have to be sedated or strapped down due to his fear of needles and then force fed through a tube. If you're someone with bad intentions or without access to medical care, there continues my nightmare...

In the days since losing him, I've found that I've had a few flashes of these vivid paralyzing fears again. The fear that he will be alone, scared, unable to care for himself and unable to communicate who he is or what he needs to anyone else. The fear that without me or his father or the rest of his close family, he won't survive, or he'll live in pain and terror. I know that I'm taking all the practical steps that I can to protect and prepare him (from ID bracelets and a stock of almond butter to working with him on what to do and say in emergencies), but practical measures take time and aren't foolproof, and fears aren't always rational. That same vulnerability, helplessness and extreme susceptibility to fear and pain that I saw in him as an infant, I still see in him as a first grader. And that's the gimpy fin that spins this particular mama into worry over this particular child.