A letter to myself, one year after our diagnosis

This is a repost. I deleted the old one because I couldn’t get the formatting to work. I’m a sub-par mommy blogger, you guys. 

Henry, fresh outta the womb. So plump, fuzzy, and pink -- just like a little piglet.

Henry, fresh outta the womb. So plump, fuzzy, and pink — just like a little piglet.


One year ago, on November 7th, I thought my life was over.

I remember that day in bits and pieces — but the pieces I do remember are sharp. We had gone in for an anatomy scan, to learn the baby’s sex. We bided our time in the waiting room with the other mothers, giddy, debating the different reasons why we thought it would be a boy or a girl. We made bets. We shook on them. I can’t remember any of them now.

The nurse called us in and Lou carried June back into the ultrasound room. It was dark and cool. The nurse squirted some goo on my belly and our son popped up on the TV screen. In high-definition, no less. We all stared, in awe, while the tech took measurements. Every so often I’d blurt out, Do you see that? That’s his face! Do you see his little face? Is that a penis? That’s a penis right there, right? Pretty sure that’s a penis. Definitely a penis, I said, trying to get the ultrasound tech to check the sex.

And then the doctor walked in. Shook our hands. Stared at the screen intently and sighed. And then. And then. The most agonizing moment of my life. Had the doctor burst through the door and roundhouse kicked me in the neck, I could not have been more stunned. And hurt.


Our son, he told us, had a defect called Spina Bifida. Something was wrong. Something had not formed properly. Fluid on the brain. Malformation. No cerebellum. Increase of stillbirth by a factor of five. Prematurity. C-section. Clubbed feet. We don’t know. We don’t know. There’s no way of knowing. Over and over, the bad news just kept coming. It crashed over us. By the end of his spiel, I almost couldn’t breathe.

I didn’t want to terminate, per se — but I definitely wanted to be un-pregnant. Somehow. I bit my tongue, almost asking can I try again? Can I get a do-over? Can we fix this? Simultaneously, I seethed at the staff, smoldering with a protective fury. Just dare mention termination to me, I thought, just try. I felt like jumping off the table, ready to fight anyone who would suggest I abort — but at the same time feeling weak and wanting immediately to be done being pregnant. To have this go away. I remember feeling weighted down, weak and hot, sweaty and starting to shake, hopelessly trapped because I couldn’t run from the “problem” — the “problem” was inside of me. It was inescapable. Inevitable. I felt doomed.



Here’s what I would say to myself if I could go back: Your life is over. It’s over in the best possible way. The life you had is done, and the person you were is dead. And it’s an immeasurable blessing.

You’re stronger now. Words like shunt and hydrocephalus used to cause you physical pain. Now you throw them around like you’re talking about what to cook for dinner. Just the thought of leaving your baby in someone else’s care — a doctor’s, a babysitters — used to set you on edge. Now you have a month in the NICU under your belt, and you have a new confidence and respect for nurses and doctors, because you’ve seen the miracles they can work. You can delegate. Do what you gotta do, you say to them, instead of peppering them with questions and wringing your hands in terror. Instead of crying and thinking I’m supposed to CATHETERIZE a baby? How the hell is that going to happen?, you just do it, like a boss, on the changing table in the bathroom of a Barnes and Noble, and move on with your day. You don’t think to yourself anymore how will I ever possible handle all of this? Because you’ve handled it. You’ve walked through hell already. You’ve survived. You know that there are going to be other “worst days of my life” in the years ahead. But you also know that you have a resovoir of inner strength that is deep and wide, and you’re a fighter.

You’re also weaker. When you hear of a mom whose kid was in the NICU, your heart drops in your stomach. You ache right along with her. The smell of antimicrobial hand soap brings tears to your eyes — it reminds you of the NICU. You wince when you see videos of yourself in the days leading up to the ultrasound, because you were so happy in those pictures and had no idea how badly you were going to be hurt. You see kids running around on a playground and you cringe — your stomach knots in on itself. Who will Henry play with, you wonder, when all the other kids want to run around? Will he be stuck in his wheelchair, by himself? When you see pictures of children in other countries who have Spina Bifida — children who don’t have the same access to medical care, kids who, unthinkably, have no mommy to speak for them — the pain you have for those children is so real, so visceral, and so sharp, it takes your breath away. You feel pain differently. You hurt more. You’re wounded.

So yeah, in a way, your life is over. Because you’re not the same person. Your soul, your mind — everything has changed. Even your body boasts a new and impressive scar, still red and angry-looking, a vertical grin across your pelvis. But would you go back, if you had the chance, and give any of it up? Would you ask the doctor for a “do over”? Would you try to fix it?


Hell to the no.

You’re stronger than you ever thought possible. You’re more resilient than you had ever imagined. You’re older, wiser, and much less likely to take things — especially health — for granted. You’re a better person, because of this child, because of this so-called defect, than you ever would have been without him.

And the best part, is that you get to be a mother to this new, round, squishy little person. You get to fall in love with someone all over again. You get to delight in his husky little boy voice, his babbling, his cooing, the geewwwww he makes when he doesn’t want to eat his baby cereal, the little frowny face he makes before he starts to cry, the soft tufts of his hair, his fat, impossibly smooth cheeks. You get to be gifted with a million of these little pleasures, these fleeting moments, day after day, for as long as God allows him to be in your life.

What a joy, what a gift. Thank you, God. Not only for this precious person, but for this new mother I’ve become.

I would not go back and make it “better.” I would not trade it for anything. 


3 thoughts on “A letter to myself, one year after our diagnosis

  1. Totally worth the repeat post, I cry every time I read it. Every. Time.

    Sorry about the spacing between paragraphs, but I thought it lent the post a dramatic edge.

    Going to scroll back up and admire Henry’s squishiness…again.

  2. Hi just found your blog, I am also a mom with a son with SB and Im new at this whole blogging thing! look forward to following your story 🙂

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