Tuesday, November 5, 2013

One Year Later: A Letter to Myself

Ugh, I know. ANOTHER post about my youngest kid. Even I'm getting sick of how much I talk about Henry. But today is a special day. So, indulge me. 

I can never resist showing off a picture of my dude. Those CHEEKS. That double chin! That button nose! Those plump little lips! I am ALL ABOUT those delicious lips! MUAHMUAHMUAH! But I digress. 

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 waited 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. 

I felt my life was over. 

That grin. THAT GRIN. What was I saying?
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. 

But 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 a new little person all over again. You get to delight in his tiny 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 little 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. 


  1. He can play with my kids. :) Only one is "disabled", he has cerebral palsy (and really, it's not that bad) but the others are more compassionate, more understanding and more accommodating than I ever would have thought possible, in particular because my son is adopted. We kind of dropped the whole "gimpy sibling" thing right on top of them and they handled it like the little badasses they are. Your daughter will be her brother's biggest advocate and greatest friend. She will always accept him exactly how he is, and she will kick all kinds of butt for him until he learns to do it for himself. She will also occasionally annoy him into being tougher than he thought he could be. She will love him, boss him around, and he will be capable and strong because of it. My son is far beyond where the doctors said he would be and I KNOW it's because of his siblings.

  2. Again, Sarah, I wish you would put all these in a larger volume for publication. You have so much to give to those who may have no hope, those same feelings of desperation you experienced. You're such a talented writer...you write from the heart. You and Lou are doing such a fine job of raising your family. I salute you both. BTW, I always call him Henwy in honor of his big sister June.

  3. You're not weaker, Sarah. You're more empathetic and vulnerable, but that's what allowed you to become stronger. So happy for you and your family. :)

  4. I don't mean to freak you out, but the picture at the top gives me an uncontrollable urge to hold your little chubs, fold my lips over my teeth, and take pretend bites out of his fat rolls. I totally missed the part where there was supposed to be something wrong with him because TINY FAT ROLLS.

  5. Sarah, you are such a beautiful and hilarious writer and I'm glad I've been able to watch you go through all of this since knowing you in college. You've handled it all so well and written about it so articulately. You're an inspiring person. Thanks for sharing your story.

  6. Damn! You're my hero that is all. Okay that's not all, you are strong and the question would you give it all back? Hell to the no. In my weakest moments I have not been that strong. Horrible I know but you make me accountable. My daughter is autistic but she's mine. My baby and I would kill the SOB who hurt her. I love your writing, love your blog, love your strength.

  7. Beautiful post! My baby has been diagnosed with Trisomy 18. I know the feeling of wanting to be unpregnant yet knowing that you will never ever terminate and I know the weight of wishing for a do over. Hoping that someday, I will also know the feeling of not wanting to go back for a redo to make things better.