How Can I Be Upset With a Child That I Thought Would Die?

My daughter Amelia is teething, I think, but I’m not quite sure because she's a baby, and babies can't really tell you why they're screaming inconsolably because that would be too simple. As a byproduct though, I find myself on edge nearly every moment because a squirrel stretching his legs down the block will catapult her from asleep to awake. Once awake, well, the world owes her something. Like a Porsche.

Sometimes, I cry onto her tiny head, her tears mingling with mine, both of us frustrated by the situation. Other times I just grind my teeth in frustration, giving me such migraines that if I had the luxury, I’d be in bed with my eyes closed. We’re stuck here in this holding pattern, she and I.

This is the real kicker about having had a child whose life was once in flux. How can I possibly be upset with the child that I thought would die?

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The child I begged and prayed to keep. I think this happens to any parent of a child whose beginning is so rocky. An almost universally fatal birth defect corrected by brain surgery at three weeks of age. My daughter -- the one who lived.

Life isn’t fair, you know this as you weep over your child in the NICU, the monitors alarming, the staff flitting from one emergency to another, because if it were, no children would be sick. Ever. And somehow, after all that anxious uncertainty, all that worrying, teeth-gnashing, and terror, your child is the one who made it out alive. His neighbor in the hospital may not have been so lucky and you know it. You’re blessed to even have this child. It’s like chewing on a piece of aluminum-wrapped candy: sweet and shockingly painful at times.

I know how lucky I am that Amelia made it, believe me, I do. I know that most children with her diagnosis don’t come home alive and breathing. I’ve watched my friends mourn their lost children and cried with them. Because the world -- it is most certainly not fair.

But she -- my daughter -- she is a child, a human child. And if I know anything about children, it’s that they can make you so crazy that you’re nearly sane again. I’ve been through two children already, the sort who nearly drove me to the brink, and I know that this is what kids do. She’s not like other kids, and yet she is, and it’s this that's making my head spin. I feel guilt, such massive crushing guilt, like an elephant sitting on top of my chest whenever I am at the end of my rope.

Maybe what I think is teething is a new symptom of something more sinister. No one was able to tell us much of anything about her diagnosis besides its name (encephalocele) and what it was (neural tube defect). We’re just waiting to see what happens next. Every government agency from the state to the county to her team of doctors is following her so closely that I fully expect the next time that I go to the DMV, they'll look at me knowingly and say, “Oh! You're Amelia's mother! Is she drinking from a cup yet?”

She could be normal, she could be profoundly disabled, or somewhere in the middle. Her issues with sleeping deeply may resolve themselves in a couple of years or maybe she’ll be a Lifetime Member of the Insomnia Club like I am.

On days like today, when I worry that the nape of her neck is becoming disproportionally large, and that the top of her head looks weird, I can’t seem to talk myself out of it. I don’t sit around all day, crippled by grief and worry; I try to live in the moment and not the might-be’s because I know that they go nowhere.

Instead I kiss the huge scar on the back of her tiny head and I rub the halo of curls around the back of her head and I try to breathe it all in. Try to breathe her in. The past is the past, tomorrow is the future and all that I can count on is this moment. I bury my head in her neck and I drink it all in.

I wait, and I watch, and I worry, and I hope that someday we will all look back on these days and laugh.

And I hope.

I hope.

 

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