Alone

The best piece of advice I’ve received from other parents is to leave well enough alone. If your baby is quiet, don’t give her a toy. If she’s happy with her toy, don’t sway her rocker. If she’s happy being swayed in her rocker, don’t pick her up. Just leave well enough alone.

I think of this advice now, and I wonder if it’s something I should have heeded before having a baby. Yes, I was depressed at the prospect of being forever childless, and I felt distraught when imagining decades of family holidays with no brood in tow, but I wonder now if I could have eventually wrapped my head around it. Surely I’d have quit spiraling in anguish by 2020 or so. Wouldn’t that have been better than this?

What’s this “this,” you may be wondering?

Here’s where my fingers begin to stutter. Type. Delete. Type. Delete. Heart breaks. Eyes close. Tears fall. Tissues. Deep breath. Ok.

At my daughter’s 9-month check, our pediatrician pointed out these unusual marks on her skin. Several of them. They’re light brown and oddly shaped — very thin, very long ovals. Two on her face and several on her legs and arms. I’d noticed them, of course, but I thought they were bruises or something. Nothing to worry about.

Not so.

They’re called cafe au lait birthmarks, and although it’s possible that they’re just birthmarks and nothing more, quite often they’re an early symptom of a neurological condition called neurofibromatosis, which is probably the worst thing I’ve ever heard of.

Clusters of small tumors that grow all over the skin to the point of being significantly disfiguring. Skeletal deformities. Brain tumors that can lead to hearing loss, vision loss, or worse. Seizures. Learning disabilities. Other things, too, that I can’t quite remember right now. (Tip: Do not do an image search if you’re eating.)

In Wikipedia, entries often have a Popular Culture section where they talk about personalities or characters that relate to the subject being discussed. I haven’t read the Wiki page for NF (yes, I’ve already got the shorthand down), but Google search results have pointed to the Elephant Man and the Hunchback of Notre Dame as known characters with the condition.

So, yeah. I’m pretty much losing my mind.

And I keep thinking: does this mean that I’ll only get to have 9 months of parental bliss before being flung into a lifetime of parental hell? Because if that’s the case, then I kind of blew it because I spent most of these 9 months questioning whether I made the right choice in using an egg donor. Hardly a day went by when I didn’t wonder what my own genetic kid would look like and if I’d have felt differently about that imagined offspring … loved her more or better. Of course there’s no way to know how things might have been, which for a normal person would mean that they’d have put these questions out of their minds, but for me meant that I had to work 77 times as hard to find the answers.

So now I’m loaded with profound regret for not having left well enough alone these past few months. If I had accepted each of those moments for all the sweetness they held, I could have looked at my daughter with a heart full of love 100% of the time instead of just 94%. I might have appreciated every one of her funny, crooked smiles without being reminded of the donor. Or perhaps I wouldn’t have blown in her face out of frustration that time when she wouldn’t stop crying.

But that was then, and right now, I’m losing my mind.

Losing my mind because I can’t think about the past without feeling regret, and I can’t think about the future without being suffocated by fear. My stupid therapist would tell me to just feel the emotions of the present, but there is no present. Just the weight of what’s behind me and the emptiness of what’s in front, and me balancing on the edge of a tissue waiting for the Xanax to kick in.

~~~

That was last night. The Xanax did work, but now I feel like I need another. Something to keep my mind occupied until our appointment with the pediatric dermatologist later today. It took a week to get in because the referral was delayed. “It’s not urgent,” said the nurse, “because even if she has it, there’s nothing you can do.” Oh, good. That helps, you fucking cunt-hole.

In the meantime, I’ll publish this scattered post. But first I need to create a new tag: neurofibromatosis. I can’t tell you how deeply and profoundly I’m hoping that this is the only time I’ll use it.