Maybe I Caused My Son's Birth Defect, Maybe I Didn’t. Here’s Why It Doesn't Matter.

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October is Spina Bifida Awareness Month, meaning that everyone and their mom is up in arms about prevention. If you follow any spina bifida-affiliated organizations, then you’re totally going to 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 the blog 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 my 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 my son, 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 prenatal vitamins 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 my daughter, 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 Bread’s 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 90-degree weather. It was hot as balls, but I thought I was getting healthy for him. I knew vaguely that high body temperatures (hyperthermia) increase 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. Maybe it was the fact that my dumb ass went out every single morning during my first trimester in extreme heat 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. My husband, 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.

(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 now, it seems creepy, though, like my husband was going to murder me or something.)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.

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I tell you, the minute Henry 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 17, 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 anymore. 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, who are 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.

This post originally appeared on Wifeytini.com.

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When My Daughter Starts to Notice She's Different, This Is What We'll Do

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Sarah Sweatt Orsborn’s family

We’re sitting on the couch. Claire reaches up her dimpled hand and touches the knot just behind her right ear, mostly hidden in her loopy white blond curls. “I have an ouchy.” “Oh baby,” I say, “that’s not an ouchy, that’s your shunt! You have that because you have Spina Bifida. Your shunt helps your head feel better.” “Oh,” she says, “I have a buckle on my head.”

Sarah Sweatt Orsborn’s daughter I knew it would happen eventually, but Claire has started noticing a few of the ways in which she’s different. Actually, really, I’m sure she’s noticed before now, but she’s just now able to start talking about her differences and asking questions about them.

Most of the time, like the incident above, I just give a matter-of-fact explanation on an age-appropriate level, and we move on. She doesn’t have theological or philosophical questions about why she has a shunt bump on her head, or why she has braces or why she uses a catheter, though I’m sure eventually she will. Maybe by then, I’ll have some philosophical answers too. But for now, and for always, Spina Bifida won’t be some big thing. It’s not a defining struggle. It’s not even something we wish away. It just is. It always has been. It’s part of Claire, and while it may affect her in big and small ways, it’s just another way of being a person in the world.

I’m glad she’s a questioner. Her mama is too. I know she’ll know soon enough that her mama doesn’t have all the answers. I hope she knows that’s just part of being a person in the world, too.

Here’s what we want her to be most aware of: she is whole and complete, just the way she is. She is beautiful, smart, charming, witty, stubborn and strong. She can sometimes be a total pain in the neck. And we wouldn’t have her any other way. So throw those questions at us, kiddo, and we’ll figure all this out together.

This post originally appeared on The Adventures of Ernie Bufflo.

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When a Little Girl Felt Sorry for My Son

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She was maybe 6 years old, smiling and ladylike in a gauzy white dress. The kind of dress that makes me want a daughter. The kind of smile that’s heavy on sugar and light on spice. She walked up to my son as he wheeled in circles outside the sanctuary after church and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello.

And then, without taking her eyes from his face, she said, “I feel sorry for him.”

I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.

Children ask all sorts of question about my son.

Why is he in that? Why can’t he walk? What’s wrong with him? Will he need that thing forever?

But questions are easy. For children, questions have answers.

“I feel sorry for him” is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.

A system that tells her my son’s wheelchair is “very sad.”

A system that tells her he is a “poor thing.”

A system that uses words like “confined to,” “suffers from,” and “bound.”

little boy in a wheelchair

A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers and friends.

A system that tells her my son smiles is “in spite of” rather than simply because he too is a child and has access to all the same earthly wonders that she does.

Wonders like fireflies, and candlelight, and going fast, and little girls in gauzy white dresses.

 

So I stood there shocked out of my comfort and fumbling around for words to make this right. I wanted so desperately to undo the damage done by a system that is still learning to accept my son. But I was tongue tied and clumsy as I mumbled something about “not needing to feel sorry…” And I walked away feeling like a failure. As if this little girl represented the whole world, and I had missed my chance to set the record straight.

I realized I am very small. I am only one person.

boy in wheelchair with teddy bear

Then last week, sitting by the pool with my husband and my splishy-splashy little boy, I heard it again. This time from a teen, maybe 19 years old. He had seen us there a few times. Today he had a girl with him. A girl he liked. I could tell. He gestured in our direction.

“Something’s wrong with that kid,” he whispered to her. “Did you see his back? He can’t walk. So sad…”

I felt it more than I heard it. And I put my head down waiting for her reply. Her agreement. Her inevitable recognition that yes, my child’s life is very, very sad.

“It’s not sad,” she said, looking at my son with so much kindness. “My brother was in the Special Olympics. Nothing sad about it. That kid is cute.”

And then my heart turned to mush, and I closed my eyes to keep from crying.

I wanted to hug her. I wanted to tell her how rare she is. And how lovely. I wanted to believe she was once a little girl in a gauzy white dress.

More than anything, I wanted to thank her for reminding me that I am not the only one who sees my son for who he is. Unconfined, unbound, human.

I am only one person.

But I am not alone.

boy in pool tube

 This post originally appeared on What Do You Do, Dear?

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If I Could Have My Son Without His Disability, Would I?

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Last night, I dreamed that Simeon could walk.

It happens from time to time. The dreams sneak up on me, appearing out of nowhere– then vanishing for months.

Sometimes it’s a miracle.  A kick of his legs, a bend at the knee, and I turn to Greg whispering, “Did you see that?Something has changed.”  And something has.  I am picking him up.  I am placing his tiny feet on the floor.  I am letting go.  He is walking.

Sometimes it has always been this way.  He is on the front lawn. He follows behind Greg.  He toddles shakily back and forth as the cars hum through our neighborhood.  “Hold his hand if you’re crossing the street!” I call.  Boys can be so reckless.

But it never lasts.  I wake up every time.

Hopeful.

Unsettled.

Disappointed.

Guilty.

I feel sick.

My subconscious is so unkind.

What kind of mother dreams that her child could be different?  What kind of mother wakes up disappointed that he is not?

If I could have my son without spina bifida, would I?  Would I change this if I could?

Yes.

Yes.

Yes.

I can ask the question a hundred different ways, but the answer is always the same.  I would make things easier.  I would write a different story. 

But I hear other mothers say, “I love them just as they are.  I wouldn’t change a thing.”  And I am ashamed — and disbelieving.  Surely I am not alone.  Don’t we all want to remove, to ease, to unburden?  Isn’t it for love that we long to take away?

My mother would change me.  Were she the author, my story would be less anxious — there would be no panic. But this does not mean that she loves me less.  And maybe it’s okay to want something different for our children.

Maybe it’s okay to love what is while stealing glances at what is not, saying yes — that’s how it would have gone, had it been up to me.

So I dream with eyes closed, I observe the manufacturings of my mind, I feel every bit.  But I always wake up, I shift back to reality, I find the comfort of our home, the solid bed beneath me.  And even now I can hear him, careening through the house, laughing in Greg’s arms.  His hands outstretched, his eyes wide open.

We are playing a flying game.

And dreams seem far away.  And I am satisfied with what is.

Now is enough.

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This post originally appeared on What Do You Do, Dear?

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On Having Another Baby

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I should start by saying that I am not pregnant.  I’m really not.

But sometimes I want to be.

I never planned on Simeon being our only child.  I grew up with siblings and I believe there’s something sacred in that relationship— something I don’t want my son to miss.  I think of lazy Saturdays playing monopoly, the winner sneaking money to the loser just to make the game last a bit longer.  Or Halloween night, when we spread our loot on my bedroom floor, bartering for our favorite foil-wrapped sweets.  I like the idea of a busy house brimming with fights and friendships.  I like the community of family.

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But I am afraid.

I go between fear and love. Fright and longing. I play scenarios in my head…

I fear jealousy. Siblings are a natural measuring stick. We move through life together, becoming grown ups, hitting milestones. But Simeon’s milestones will look different than a typical child’s. Am I inviting comparison? Am I inviting strife?

I fear resentment. Trips to the hospital, overnight stays with Daddy, missing school for appointments followed by the inevitable “special” lunch.  A swamp of jealousy lies there.  And (though the very writing of it makes my chest clench and my breath stop) what of when Greg and I are gone from this world? Simeon’s independence will come with help, aid, check ups.  Is it fair to have a baby, knowing that someday they may be called upon to care for their brother?

I fear heartbreak.  Perhaps the problem is mine.  Perhaps I cannot have a healthy child.  What if I am broken on the inside? What if the fault is my own?  Are not some people destined for a life of sorrow?  What if I am Job?  What if I am Job’s wife?

I fear judgment. I imagine walking down the street, belly big, face aglow, my son on wheels behind me. Will people congratulate my good fortune or will they grow solemn and offer prayers that this time things go right? Pregnancy should be joyful– I am afraid of not seeing my joy reflected back at me. Or of hearing whispers saying, “I hope this baby is healthy– for her sake.” What if people assume I am being reckless?

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But then I stop. I picture my brother and my sister. I picture late night movies. I picture dress up and wrestling matches.  I picture the abundance of pain, the ways we have wounded each other, and the love that blankets us still.

I think of how I adore my practically-perfect little boy.

I take stock of the love around me now.

I see there is more to come.

Some decisions can only be made from a place of love — not from a place of fear.  

Choosing not to have another baby because I am afraid is like choosing never to see the ocean again because I am sunburned.  Will I miss out on the beauty because of the sting?  Will I choose fear over love?

No.

I choose to sit, red-cheeked and wounded, on the shore.

It will be warm.

It will be breathtaking.

This post is in answer to a question I received back in October.  Anna (another SB mom) asked: Do you guys think you will have more children? I’m just curious. I waver between, “Of course we’ll have more children” to a mild panic attack at the thought…

This post originally appeared on What Do You Do, Dear?

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Watching 'Frozen' With My Daughters: Disability as Superpower and the Power of Sister Love

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My kids are only 2, so I’m still not fully in the loop of kid-culture. “Frozen” largely stayed off my radar during its run in theaters, because I am NOT crazy enough to take these two to a movie in a theater yet, and I didn’t even see trailers because we don’t have cable and they don’t show ads for movies on Hulu very often. I’d see posts in my social media feeds from moms of older kids complaining about watching it for the umpteenth time or having the songs stuck in their heads, and I even saw a few videos shared that related to the film, like those self-declared good-looking parents lipsynching. (Tip: unless you’re Derek Zoolander, never talk about how good-looking you are.)

All that said, the other day we bought “Frozen” and tried to watch it as a family. The girls had a long, late nap that day, so we were looking for a low-key evening activity. And I’d been kind of curious about a movie I heard was about two sisters — I have a sister and am raising a pair of sisters and YAY SISTERHOOD, you know? I popped popcorn, and all four of us snuggled on the couch, and we pressed play. Elmo? the girls asked. And kept asking. Basically, through the entire movie they wanted to know where the heck Elmo was, and if Elmo wasn’t in this movie, why were we watching it at all? We didn’t even finish before putting them to bed.

But I caught enough of the movie to dig a fairly feminist message of sisterhood and familial love being as strong and important as romantic love, and I knew I wanted to really watch the film, despite my distaste for Olaf the Abominably Annoying Snowman. So the other day when the girls were napping, we watched Frozen again. And upon this viewing, I noticed something different. I started to see a disability narrative where I hadn’t seen one the first time, perhaps because I was distracted by all the demands for Elmo. As I watched this time, I started wondering which of my girls was Anna and which girl was Elsa, the same way my sister and I used to say, “I’M BELLE!” back before anyone needed a Buzzfeed Quiz to identify with a fictional character.

And it occurred to me, my little white-blond Claire is Elsa — not just because of the hair, either, but because of Spina Bifida, too. Like Elsa, Claire was born with something that makes her different. Something that has risked her life, something that many might think she should be ashamed of or at least try to conceal and minimize as much as possible. Like Elsa, Claire will have to learn how to live with this difference and will perhaps grapple with it, struggle against it, though I hope she will not. I hope she’ll accept her whole self as a whole person, and I want her to see her disability as just another way of being a person in the world, but I do know that like any other part of ourselves that makes us different, she may struggle a bit before she decides how she feels. Elsa, for much of the story, has the idea that her difference is something that must be hidden, that is dangerous to others, that is a barrier to her participation in both family and work life. Notably, this is something she is taught, as at first she plays around with her powers and sees them as a way to connect with her sister. I never want Claire to get the idea that her difference is something to hide. “Conceal, don’t feel” could basically be summed up as the opposite to my philosophy on identity and self.

I admit that I worry that difference will come between Claire and Etta, that one will resent the other either for being able-bodied or for requiring more care and attention, just like Elsa’s powers come between her and Anna. I also must say that I hope they realize the bonds of sisterhood and family love draw them closer than any difference could ever separate them.

Maybe one day, when my girls are a little less Elmo-obsessed, they will be able to watch and identify with Frozen. I hope they don’t get caught up in who has power or who is different. Instead, I hope they understand that for both of them, able-bodied and disabled, the things that make them different are essential to who they are and that the love and the bond of twin-sisterhood between them is stronger than any difference could possibly be. I’d be fine if they avoid cavorting with annoying snowmen, though.

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This post originally appeared on The Adventures of Ernie Bufflo.

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