Is this my fault?

It’s the question any mother of a child born with special needs asks herself. Even when common sense prevails (sometimes there aren’t explanations for things), you can’t help the twinges of guilt that tug at you during those moments when you least expect it.

I could have eaten more kale. Should I have actually listened to classical music? I knew I shouldn’t have had that cup of coffee.

The 48 hours after our Little Lion Man came roaring into the world blur for me. It was a constant stream of specialists, nurses, geneticists, neonatologists, family members all asking questions, trying to get to the heart of the matter and determine a best course of action. Peppered with postpartum nurses scolding me for not resting in my bed two floors away (that wasn’t happening).

There is one moment during those first two days of racing train unsteadiness that didn’t just guilt tug — rather it knocked me flat. Patrick and I were visited by the geneticist’s assistant, who had the unpleasant task of filling out the ‘official birth defect form.’ I had a very uneventful pregnancy, outside of horrible morning sickness. We flew through the questions. Did you smoke while pregnant? No, I’ve never smoked. Did you consume alcohol during your pregnancy? No.

Did you take folic acid six weeks prior to conception?

Um, no.

Well, we strongly suggest you do next time.

My “we will get through whatever this is” armor crumbled. I thought Pat was going to deck her. And he’s not a violent kind of guy.

Intellectually, I knew it was a form question. Her tone was, well, government form tone. Not menacing or accusatory.

It didn’t prevent the stabbing sensation.

The reality? All we had to do was talk about the possibility of baby #2 and hello, baby. There wasn’t even time to contemplate folic acid prior to conception. Did I take folic acid once I knew I was pregnant? Of course. Prior to pregnancy? Outside of a daily glass of OJ, no. I didn’t take folic acid prior to conception of my first child, either. {And either did my mom, my grandmother, my great-grandmother, my husband’s mother… you see the pattern.}

I’m not saying that you shouldn’t take folic acid if you’re contemplating pregnancy. Why wouldn’t you? All of the research shows nothing but benefits for your child. But I do resent the fact that in their search for a cause for abnormality, the medical professional sent to help my family in a time of real uncertainness so emotionlessly placed blame. Especially when there was no earthly way to confirm one way or another that folic acid would have prevented the medical situation we were facing.

A matter of protocol.

I’ve been reading Mary Evelyn’s blog What Do You Do, Dear? for the better part of a year now. In it, she chronicles family life with her adorable son Simeon who grins just like our little guy — which is probably why I’m drawn to it. Or maybe it’s her frank and humorous tone. Regardless, I see a little bit of my own ‘special needs mom’ life reflected in her writing. While our sons’ diagnoses differ, some of the medical treatments — such as both boys being trached as babies — are the same.

She didn’t take folic acid prior to conception either.

But as she writes, there is no redemption in shame nor are there answers in “what if.”

She’s right.

I didn’t catch my first guilt relief from that uncomfortable “form moment” until we met with our second genetics team at Hopkins, about a week later. The doctor walked into the NICU room and, before I could even introduce myself, asked, “Before I even start, what misconception can I clear up? You didn’t stand too close to a microwave. You didn’t have a glass of wine that did this. This is not your fault.”

This is not your fault. 

In retrospect, I’m grateful that I didn’t let myself stay too long in the what ifs and play the proverbial blame game. Letting go let me focus on the what now instead of the whys (which isn’t necessarily easy for my left-brained personality. For every effect, there must be a cause… basic logic) and what ifs. I would have missed out on all of the amazing moments that happened when our little guy was so small, in spite of the crazy riptide we were surfing.

… and all of the amazing moments since.