I did what every over-achieving mother-to-be does. I read the books, I listened to the podcasts, I took the organic sewage-smelling prenatal supplements. I maintained a healthy lifestyle, drank water, and sacrificed my weekly bottle of cabernet sauvignon. I relinquished my proud vegetarian status in favor of giving my body more protein to grow a tiny human. I could name five natural birthing styles at the drop of a hat. I did every ounce of work I could with my brain, but my body did not agree.
Everyone expects that their baby will be healthy. Even when we were sent to a maternal fetal specialist after our anatomy scan, I was certain everything would be clear. In the waiting room, when my husband asked if this was something most people had to do, I just shrugged. I could imagine the doctor saying, “I’m glad we checked so we know for sure, but he looks perfect!” Instead, I sat in a very dark room as the ultrasound showed the same features again and again–feet, heart, hands, feet, hands, feet. I felt hollow. I had been so sure, but my baby wasn’t perfect.
Our diagnosis was cosmetic and treatable, but it brought with it a slew of what-ifs and blood draws. Our baby had “markers” for genetic conditions that had the ability to disable him, to keep him from living a long, full life. When the doctor left the room, my husband and I cried big tears of shock, then disappointment. I reassured him as I had in the waiting room, but this time I was not so confident.
We were relieved to find that the tests came back normal, and the doctors were nearly certain that E’s “defect” was isolated. So, I put my mind to work again. We researched, we prepared and we waited on our little guy. We made plans to accommodate treatment schedules, bought special clothes to fit around casts and braces and prayed for a straightforward case for him with no more surprises.
The Mom Guilt came in waves, separated by long stretches of fear and sleepless nights. Had I done something? Not done something? Would my child have to endure pain because of me? There was no way to know, and there still isn’t. What I did know was that I loved this child, and I would be his advocate. I memorized the treatment schedules backwards and forwards, I joined Facebook groups and forums, I studied and I worked and I worried. That’s how I cope.
I had accepted the diagnosis and was just ready to see him and know that he was going to be okay, that the doctors hadn’t missed something. As my due date grew closer, I became more and more anxious. We were waiting on the other foot to drop. I was one day shy of 37 weeks when contractions began, sharp pains coming at ten minutes apart. The time to worry was over. Ready or not, he was coming.
If you read my last blog, you know my first words upon seeing him were, “is he okay?” I’m certain that’s a common experience among mothers. In my case, I was asking because something was wrong. It wasn’t the “defect” we had grown used to seeing on the ultrasound images. It was something else. More markers. My doctor reassured me again and again that he would be fine, but I couldn’t be convinced. Eventually, exhaustion took over and I fell asleep clutching my newborn, not knowing that he would be on an ambulance soon, without me.
Ellis was ten hours old when we found out he’d be leaving for Le Bonheur. I didn’t put two and two together, but my husband did. I saw the color drain from his face as he realized he and Ellis would be leaving me behind. More big tears of shock and disappointment. It wasn’t long after that a nurse came in, and she was crying, too. I figured that she was a mother and she felt sympathetic that I was being separated from my child so quickly. Instead, she told me that my doctor had chosen to release me to make the trip with my guys. I hugged her, and if you know me personally, you understand how happy I must have been to do that.
My husband rode with our baby on the ambulance, and my sweet sister-in-law and I followed not far behind. Once there, we found out that they couldn’t help him. Nonetheless, we ended up spending the better part of his first week in that NICU room, sleeping on pull-out chairs and setting off monitors every time we touched our son. It was my worst nightmare for him and for us, but we made it. One surgery, four casts, two braces later (and a couple more years to go), Ellis is thriving and those scary, early days feel like just a bad dream.
The books and podcasts and classes cannot prepare you for the unexpected. No words or techniques you memorize will help when you find out that something is wrong. And rest assured, something will go wrong. We live in a filtered world, where women share dreamy images from their water births and styled photos of sleeping newborns. We are all silent about the traumatic experiences that surround bringing a life into the world.
It might be a hiccup in your birth plan, you may fail at breastfeeding, your child may scream for hours on end. It probably won’t be perfect. For that, you cannot prepare. And there are no sufficient words to warn you about the way your life and your own being changes when you hold that bundle for the first time. All the pain, the anxiety, the disappointment fades. The world stands still around you and your child, and there are only tears of overwhelming adoration. What comes next might be more of the unexpected. It might be a blur of hospital rooms, surgeries, and tests. When you feel you have reached the end of your rope, I hope you remember that feeling and it propels you forward.
I am fully aware that parents experience worse than what we went through daily, but one thing I have learned is that in parenthood, our experiences are not on a sliding scale. Everything, every tiny, insignificant thing, good or bad, that happens to your child feels like it is monumental and life-altering. And perhaps, that is the most unexpected thing of all.
What my son lacks in fingers and a typical right foot, he makes up for in personality. And if my love for him could fix all his little problems, he’d be perfect. But then, he wouldn’t be Ellis, and that just wouldn’t do.