The Things They Said…

The Things They Said

When my first child, my son August, died unexpectedly at birth, people said, “God needed another little angel in heaven.” Which, since I am not religious, did not comfort me. They said, “Everything happens for a reason.” Which made no sense, because what could possibly be the reason for an innocent baby to die? They said, “You’re so strong. If anyone can get through this, it’s you.”

That one hurt me the most. I thought, Are you kidding me? I did not feel strong. I felt broken, chopped down at the knees. For months postpartum, my body and my spirit felt loose, chaotic and raw, as if I had been stabbed, over and over. As if August had been ripped away from me. Strong? I felt torn apart. Irreparably and irrevocably shattered.

The author with her son, August, in January 2010.

Besides, I wondered, what was the real message? Did other people get to keep their babies because they were too weak to endure the loss my husband and I were going through? Was this one of those “whatever doesn’t kill you makes you stronger” experiences? Was there some lesson I was supposed to learn from our tragedy? If so, wasn’t there a way I could have learned it that wouldn’t have been so devastating?

Nineteen months later, our daughter Pearl was born at home, late at night, in a mad, bright, dizzying rush of sound and energy. Her birth was a painful and exhilarating experience, and I basked in its miraculous glow: We did it! We brought a healthy, living child into the world. Pearl was here, safe and sound.

Thirty seconds after she was born, I looked into her face and exclaimed, “She has Down syndrome!” Our midwife said, “No, she’s just a little swollen.” But a week later, our pediatrician gave us the official diagnosis—Trisomy 21—confirming what we already knew.

At first, I wallowed in devastation. How could this have happened? How could we have one child who had died and another who had a chromosomal abnormality? It felt like losing another child all over again, and in a sense, I had: I’d lost the child I had expected, the “perfect” baby I had hoped for so fervently.

Oh, how much I didn’t yet know about how perfect Pearl was, and how perfect she was for us! Our friends and family had an inkling, though. When they heard the news of her diagnosis, they said, “She has found the perfect family. If anyone can do this, you two can. It was meant to be.”

Again, I thought, Are you kidding me? You see, I heard this in terms of bad karma—as in, we had signed on for this burden in some unknowable spiritual way, and the road ahead would be very, very tough, but we would deal with it the best we could. Of course we would do a good job caring for Pearl: We had to. And I couldn’t argue that we were pretty well set up to care for a child with special needs. My husband, a Special Ed teacher, already knew American Sign Language, which would help in communicating with her. We were blessed with lots of love and support from our family and friends, and we had access to resources that could help Pearl become whoever she was meant to be. We would do the best we could, no matter the obstacles.

All of the above were true, and they still are. But back in the first few weeks of Pearl’s life, I viewed them through such a depressingly grim lens. When I think back to that now, I cringe in shame. I can’t believe I spent one moment feeling sad about the number of chromosomes my daughter had. Seriously—how ridiculous! Pearl did not deserve one split-second of disappointment about her miraculous self, and it makes me sad to think I felt anything other than joy and excitement at the pure good luck of getting to be her mama.

And yet, I try to forgive myself for having those feelings. They were just my feelings, after all, and—thank goodness—they changed quickly. Most of all, they had a particular context: We had already lost one child in a horribly unexpected way, and I had placed all my hopes on having another child, a healthy, thriving, living child. And when Pearl was born, I knew nothing about Down syndrome. I thought her diagnosis meant I had failed again; that something had gone terribly wrong, again. And I could not stand the idea that any of this—August’s death, Pearl’s extra chromosome—was meant to be. The concept smacked of being chained to a deeply unwelcome fate that made my soul shudder.

Besides, since August’s death, the concept of “meant to be” had lost all meaning, for me. His death had turned my entire worldview inside out, as it seemed to confirm one of two things: Either we were being punished by the universe for some unknown crime, or life was harsh, random, with no order or meaning at all. For a long time, I couldn’t determine which was true. I tried my best to believe life was random, despite my superstitious mind repeatedly cycling back around to believing we were cosmically screwed. Discovering that Pearl had Down syndrome only added to my confusion—at first.

But a month or two into our life with her, my worldview began to change again. Slowly but surely, I began to think everyone was right—that Pearl truly was meant to be ours. I started to see that we had fumbled and blundered toward her blindly as she claimed us with a true and certain aim. She was the daughter we called into being amidst heartbreak and hope. We were the family she decided, with great purpose, to join.

Pearl at five months old, in January 2012.

And I became inexpressibly glad and grateful that she’d decided to come. At first I thought of her having Down syndrome as something that had gone wrong, and as something separate from Pearl, herself. Thank goodness, my perception shifted quickly to realizing she and her extra twenty-first chromosome were, and are, one and the same. She is who she is both in spite of having Down syndrome, and because of it. Without it, she would be someone else. And I would not want that for a second! She’s the most hilarious, loving, smart, curious, beautiful daughter I could have asked for, and she is more perfect than I could ever have imagined.

Pearl with her little brother, Zephyr, in January 2016.

Pearl is now four-and-a-half years old. She’s healthy and thriving. And her extra chromosome hasn’t seemed like a negative thing to me in years—no more than her being a girl or having two arms and two legs. It is part of who she is, and she is so much more miraculous than I can adequately express in words.

When a child dies—a real, flesh-and-blood child like August, not a fantasy, hoped-for child like the one I envisioned when I became pregnant again—there is nothing anyone can say to make it better, except, perhaps, “I am so sorry.” But here is what I wish someone had said to me during those first few weeks of Pearl’s life when I was once again so very, very sad:

You are going to fall utterly, madly, obsessively in love with this child. Not in several months or years, but in a matter of days.

This baby girl is going to delight you down to your toes. She will bring you more joy than you thought possible. She has already begun doing so.

This little one is going to make the pain of losing your son all the keener, because she will show you exactly how much you lost when you lost him.

This is the child you have been yearning and hoping for. She is the child you begged the universe to send you. She is here. Your longed-for life has begun.

I wish someone had said these things to me back in the beginning, when I was very, very sad. But the truth is, if they had, I probably wouldn’t have believed them. These were things I had to learn on my own.

And I did. Boy, did I! On almost a daily basis, I send out enormous gratitude to the universe, and to Pearl, for giving me the chance to be her mama. And I send out the hugest love to August. That’s definitely one thing about losing a child: It puts something like Down syndrome into perspective. It didn’t take me long at all to realize that Pearl’s extra chromosome isn’t good or bad; it’s not even an “abnormality” (it’s too common to be abnormal!). It just is. And there’s nothing wrong with Pearl. She is thriving, just as I had hoped, and she is who she was meant to be. The only thing that ever went wrong was my fear, way back in those early, dark days. I am so lucky that Pearl showed me how to let it go.

Catherine Avril Morris is a romance author, freelance writer, wife, and mother of three beloved children. She lives in Austin, Texas, with her husband, Erik, their daughter, Pearl, and their son Zephyr (who happens to be typically developing, but is still pretty cool anyway). She has been a proud Ruby’s Rainbow volunteer since 2014. Visit Catherine on the Web at www.CatherineAvrilMorris.com.

Note: A version of this essay originally appeared on LiveMom.com in March 2012.