Maybe I caused it. Maybe I didn’t. Here’s why that doesn’t matter.

October means it’s Spina Bifida awareness month, so that means everyone and their mom is up in arms about prevention. If you follow any Spina Bifida-affiliated organization, then you’re totally gonna get an earful this month about folic acid and how SB is totes preventable if you JUST TAKE FOLIC ACID FOR THE LOVE OF CHRIST. (Sara from Ernie Bufflo does an excellent job of explaining why that isn’t always the case, and how SB prevention often gets in the way of serving the people who are already here.)

I don’t talk much about prevention on this blog, because it’s totally irrelevant to us and a majority of the people who read this. Like Sara said, we’ve got SB, and it’s not going anywhere. It’s part of who Henry is, and no amount of folic acid is going to change that. It’s not really something I talk about, because it’s not really something that affects us now. But I’ll talk about it today.

One thing that saddens me greatly during October (and, to be honest, every other month. But particularly October because the push for “awareness” and “prevention” is so high) is the scores of mothers on our SB support groups who admit to feeling haunted: “Could I have prevented this?” They ask. “Was it my fault because I waited to take prenatals once I found out I was pregnant, instead of before?” My friend Mary Evelyn echoes this, and she wrote a post this morning about folic acid and guilt that ought to be mandatory reading for every newly-diagnosed parent.

 

 

My heart goes out to these women completely, because I’m among their ranks — Did I cause this? Did I not take enough folic acid? Truthfully, I don’t think about it often, but I do think about it some. And I’ll admit that while most of the time it’s not something I concern myself with, during my worst moments (and we all have those, right? Those wow-I-suck-I’m-a-terrible-mother-and-human-being-moments?) I believe beyond a shadow of a doubt that I’m the one who caused his defect:

We waited only a year between pregnancies, and I was breastfeeding June when we conceived. (Who knows — maybe she sucked all the nutrition out of me?)

I’m chronically anemic (I have been my entire life), which goes hand in hand with folate deficiency (which I didn’t know at the time).

I ate pretty much nothing but baked potatoes and Panera soup during my first trimester (but I’m gonna go ahead and blame the baby on this one. If he wanted me to eat tons of folate-rich spinach, he shouldn’t have made me throw up every time I ate anything.)

– Here’s something that really haunts me — something I’ve come to accept and make my peace with, though it still lashes out at me in my worst moments. The minute I found out I was pregnant with Henry, I remembered how agonized I was after June’s delivery. During the pushing stage, I think I pulled just about every muscle in my body trying to get her out, and I was so woefully out of shape it took me weeks to recover from childbirth. So right after my positive pregnancy test, I went out every morning with June and took her for a walk in the stroller. In mid-July. In ninety degree weather. It was hot as balls, but I thought I was getting healthy for him. I knew vaguely that high body temperatures (hyperthermia) increases your risk of neural tube defects like spina bifida, but I took that to mean no hot showers or electric blankets, which I stayed away from religiously. I didn’t think that meant I couldn’t exercise. I thought I was doing a good thing.

Does that cover it? The millions of ways I could have given my son spina bifida? I took prenatals, by the way. I even took a folic acid supplement — more than the standard recommended dose. And another thing I loved to eat when I was pregnant was Total cereal — which is fortified with folate and has 100 percent of the recommended dose. So who knows — maybe it wasn’t folate deficiency. Maybe I didn’t wait long enough between pregnancies — a known reason that Latina women are in a high risk category for neural tube defects (Latina women tend to have more babies and space them closer than any other population). Maybe it was the fact that my dumb ass went out every single morning during my first trimester and sweated my balls off, determined to get in shape for his delivery, raising my body temperature to potentially unsafe levels.

Maybe I caused it. Maybe it was my fault. Maybe. I’ll never know.

Now let me tell you why none of that matters.

Being a mother has always been of utmost importance to me. We waited about five seconds after we were married to start trying to get pregnant, and four months later we were pregnant with June. When June was just a year old, we both got a strong urge to try again for another. We were in a good place financially — paying off our debts, saving a good amount. Lou had a steady job. June was an incredibly easy baby, who we thought could benefit from having a sibling. There was nothing stopping us. So we tried again, for Henry.

The funny thing about trying for Henry was that I knew I would be having Henry. Henry was the only baby name we could agree on, boy or girl, and I strongly suspected that when we got pregnant, we’d be having a boy (boys run in the family, on both sides). Right after June’s birthday (at the end of June), I heard a small voice in my ear. You’re fertile now, it said. If you want to get pregnant this month, you’re running out of time to try. So we tried.

(Only one other time have I ever heard this small nagging voice in my ear. In college, Lou and I were spending a lot of time together, getting to know each other, but not yet dating. I remember sitting in a Political Science class one day and hearing, out of the blue, someone telling me that if you date this person, he’ll be the last person you ever date. Writing that seems creepy, though, like he was going to murder me or something.)

I tell you, the minute he was conceived, I knew we were pregnant. I knew it “took,” on the very first try. And for weeks afterward, I took pregnancy test after pregnancy test, knowing we had conceived him, but not getting a positive result. Finally, on July 17th, we got one. Pregnant. On the first try. With Henry. Bam. Henry, whose namesake we now know, is the patron saint of disabled people.

My point is this: I was always meant to have this child. He was always Henry, and he was always mine, which takes the sting out a little bit when I think of maybe how I could have caused his defect. Whether I “caused” it or whether it was just a totally random happenstance, it doesn’t really matter to me any more. Because he was always Henry. He’s always had a special purpose. He was always mine, from before he was conceived, and I think the significance of his namesake points to the fact that he was always going to be disabled, and that he would use that disability for the glory of God. To help other people, somehow, in some way, that were disabled like him.

Maybe it was my fault. I don’t care anymore. He’s here. He was always supposed to be here. He gives my life purpose and joy, and that overrides the guilt I have any day of the week. If I gave him spina bifida because I took long walks in the heat for my first trimester, then that lands me among the ranks of parents who totally screwed up their kids by trying to do good by them. And I can live with that.

Like Mary Evelyn said so poetically, I’m moving on. I’m letting go. I’m thanking God for the gift that is my child.

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And as Jesus passed by, He saw a man who was blind from his birth. His disciples asked Him, “Rabbi, who has sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” John 9: 1-3

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12 thoughts on “Maybe I caused it. Maybe I didn’t. Here’s why that doesn’t matter.

  1. I know I probably say that every one of your posts is my favorite, but this one is definitely near the top! What you described here is one reason I’m not a huge fan of April (autism awareness month). How many different studies can come out blaming autism on moms in so many creatively different ways. I get why people are desperate to know the whys of these things but wow… it always seems to be mom! And you summed up my feelings on why that doesn’t really matter to me brilliantly!

  2. Hi, I’m dutch so my english is not flawless. My husband and I knew our babyname for a boy would be Luke. The first and only name I liked for a boy. This was in the first months that we dated. My pregnancy was about 10 years later. Somewhere in between I also heard that voice that I was going to have a very special child. After the birth of our firstborn, Luke, it all matched. I’ve loved him so much from the beginning, but the concerns always took a huge place in our familylife. Now almost eleven years later I’m so glad to read Mary Evelyns’ and your posts. It reminds me to thank God for our special boy who is most of all so wonderful! This is the point where I let go off the guilt for not taking folic acid at the time he was conceived and to open up for all the ways God shows his love through Luke.

  3. You and Mary Evelyn are right. It does not matter who or what is to blame. I have Spina Bifida, it has been living with me for fifty years. Trust me know who or why or what made this thing come to me, would not change a darn thing. I thank God everyday for the built in challenges of having Spina Bifida and I thank Him for giving me the ability to not make that one thing, Spina Bifida, the thing that defines me as a person. I hope some day instead of warning parents or scaring parents, rather, that it will not matter how Spina Bifida might be prevented. But instead people can be educated on how to embrace people who are differently able. How to include them in life instead of preventing them from having a life at all. Your son is very lucky that you know it does not matter who or why…..the sooner he can learn that, the better his life will be.

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  5. My mother did everything anyone who is pregnant with a child is supposed to do and I still came out with spinabifida and hydrocephalus. I just look at like it was fate. Sometimes it’s a fate I don’t understand and question why it was handed to me,but fate doesn’t always make sense! I totally agree the SBA needs to focus a lot more on helping those born with spinabifida people like me. A lot of us want to live our lives healthy and happy,but sometimes we need help to do that! The SBA needs to focus their attention on adults too and not just children! They also need to spend less time on prevention! What are you going to do for the ones like me who are already here! you can’t prevent something that has already happened!

  6. I so needed to read this today. My son is nine months old, beautiful and healthy, but I am TERRIFIED of, you know, “wrecking” him. It can be such a joy-suck, thinking of all the ways I might mess up with this tiny person who is so completely dependent on me, instead of focusing on the gift that he is, as he is and as he will be.

    I needed a new focal point. Thank you so much.

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