The Things They Said
When 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.
Besides, I wondered, what was the real message? Did other people get to keep their babies because they were just too weak to endure what 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 wasn’t so devastating?
Twenty 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 believed I had lost the child I’d expected, the baby I had hoped for so fervently.
When our friends and family heard the news, they said, “Pearl 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 a grim, duty-bound sort of way—as in, the road ahead would be tough, but we would do a good job caring for Pearl because we had to. Because my husband, a Special Ed teacher, already knows American Sign Language. Because we’re blessed with lots of love and support from our family and friends. Because we have access to resources that can help Pearl become who she is meant to be. Because we are the kind of people who will do the best we can, no matter the obstacles.
All of the above are facts, and I can’t argue with any of them; we’re undoubtedly in a better position than many to care for a child with special needs. But does that mean we were meant to do so? The concept smacked of bad karma, of being chained to a predestination that made my soul shudder.
Besides, since August’s death, I hadn’t been much for thinking in terms of “meant to be.” Our baby died and my entire worldview turned inside out. His death 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 continually cycling back around to believing we were cosmically screwed. Discovering that Pearl had Down syndrome only added to my confusion—at first.
But now, months into our life with her, my worldview has changed again. I do think Pearl was meant to be ours. I think we fumbled and blundered toward her blindly as she claimed us with a true and certain aim. She’s the daughter we called into being amidst heartbreak and hope. We are the family she decided, with great purpose, to join.
And I am inexpressibly glad she’s here. At first I thought of her having Down syndrome as a bad thing, and as something separate from Pearl, herself. Now she and her extra twenty-first chromosome are one and the same. Down syndrome no longer seems like something negative to me, any 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 three 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 when I was very, very sad. But if they had, I wouldn’t have believed them. These were things I had to learn on my own. And now I send out enormous gratitude to the universe, and to Pearl, for the fact that figuring them out for myself hardly took long at all. And I send out the hugest love to August. After losing a child, something like Down syndrome just doesn’t seem like that big of a deal.
Local and online resources:
• Down Syndrome Association of Central Texas
• My Healing Place — Grief support for people of all ages
• Pregnancy and Infant Loss Group at Round Rock Medical Center — Call (512) 341-6493
• Faces of Loss — Putting a face on miscarriage, stillbirth and infant loss (mothers’ stories told in their own words)
Written by: Catherine Avril Morris
Catherine Avril Morris is a writer, teacher, self-appointed custodian of the English language, wife, and mother of two beloved children. She lives in Austin, Texas, with her husband and daughter. Her firstborn child, August John, died at birth on January 12, 2010, the same day the catastrophic earthquake hit Haiti. Visit Catherine at her Web site or her blog about losing August.
what a heart-breaking, yet beautiful post. thank you for sharing with us. your baby girl is absolutely beautiful!
Thank you for this. What a beautiful post.
Agreed, a lovely post.
Sorry you had to endure annoying comments, though. Having gone through infertility for years, I know there are some real doozies out there. Among the worst are, “Maybe it’s not in god’s plan for you to be a mother,” and upon saying I’m an atheist, getting the snide response, “Well, that explains it.” Or “You just need to be more positive. People get pregnant all the time when they’re positive, but stress prevents pregnancy.” Right. Because rape victims in war zones never get pregnant, and all happy people do. That makes sense. And it’s not at all stressful to be told that over, and over, and over again.
More people need to learn to stop being all angsty and trying to come up with buck-up comments during parenting tragedies and instead just say something like, “I’m so sorry. How can I help/I’m here for you.”
I’m so glad you put this into words (you do it so well!). xoxo Vivi
Beautifully said, Catherine. She is a precious and lovely baby. I’m so glad she’s yours. As always, the picture of you and August tugs at my heart. He was beautiful too.
That was a very well written essay, Catherine. I learn from you every time you write. This view helps us all, those who have experienced loses and not expected outcomes and those who never have experienced these types of life experiences. Thank you.
Thank you all so much for reading, and for your comments and your support. It means so much to me!
Kimberly Chapman — yes, “I’m so sorry” is the best, most helpful thing people have said to me throughout our experience of losing August. I used to feel like I didn’t know what to say when something terrible happened to someone; now, I tell them the simple truth, that I’m so sorry, and that I want to help in any way possible, and…that’s it. I hope others find that as helpful as I have. (And the real, unfortunate truth is, when something awful happens, there just isn’t anything to say that will make it better.)
Thank you for you honesty and authenticity. I already read this on your blog but I read it all the way through again anyway. I’m so sorry you have had to go through this but I’m so glad that you can now send gratitude to the universe. *hugs* I also want to smack people who try to make loss “nice”- just be real people! It’s too horrible for words don’t try to sugar coat my tragedy! I love it when people can immediately say I’m so sorry- perfect to me too
I have had a few people start crying just from me telling them what happened… now that’s appropriate.
thank you for writing this.
Mother Theresa once said “I know God doesn’t give me more than I can handle… I just wish He didn’t trust me so much.” I once asked a mother of a Down Syndrome child which she thought was easier: knowing before birth that your child had medical condition and cognitive impairment OR, like me, having a ‘normal’ child only to discover months later that they were autistic. The grieving period is the same I think but I do not know. We heard the same B.S. comments about being the only parents who could handle this (three times over) and how special our children were, etc., etc. I felt like punching them square in their well-meaning mouths but really, what is there to say? I know what I say now… it kind of goes like this: “Hey! That really sucks. I am sorry life has dealt you this particular hand. I hope you can find the strength to go forward in a positive way.” Years ago I heard a quote from a t.v. show that went something like this: “Nobody forced you to become a parent, you volunteered for the job… and nobody promised you it was going to be easy, so quit your whining and do your job.” At the time I thought bitterly “yeah, but nobody warned me how frickin’ hard it was gonna be either.” I am happy you have found your peace, your zen, your way through this ‘special situation.’ If you haven’t already you should read the poem ‘Welcome to Holland’ because it is your circumstances exactly. I wish you well and I hope you know I am rooting for your future because even though I am not the parent of a child like yours, I am a parent who has seen my original expectations shattered and I have had to reconfigure my world view to fit a new reality. Best of luck on your journey!
Thank you, Catherine. I’m thinking now about my brother when his first daughter died at birth. She was a twin, so he heard things like, “At least one of them lived.” He never said anything – he was too devastated. I went around wanting to punch people, to ask them which one of their children they would give up, as long as “one of them” lived? It was years later when I realized the true destruction that my niece’s death left in my brother’s heart. He didn’t know how to live with what had happened, and he didn’t know it was alright to ask for help. Why would he ask for help anyway, when the response made him feel like grieving his daughter’s death would diminish the love he had for his son who survived? I’m sharing your experience with him. It’s not too late for him to know that there are words that can still help him heal, and there are so many people who are healing with him. Thank you so much for sharing. You are giving strength to so many.
Beautiful. Thank you for sharing your story with us.
Beautiful babies, beautiful words, beautiful mama heart. Thank you for writing this and sharing it.
Now I know what to say and not say to a friend in a similar circumstance.
Thank you all, again, for your comments and support. They mean so much to me.
she is the darlingest little creature in the world. I have imagined her painstakingly choosing you all for parents, I can’t believe she would have done it any other way. Lots of love to you guys. And perhaps fax machine in our future. xoxoxo
Wow. What a beautiful post and a gorgeous baby Pearl. Sending you much love.