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Why I Pretend My Daughter Is Still Alive

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Hi, Buttercup. It’s Mommy.

I miss you. I know you know that. I miss your sounds and your playfulness and your sweet affection. I miss your big, soulful eyes and your tapping fingers. I miss our life with you.

But lately, I pretend. I pretend you are still here. That you are at school having fun with your friends. Or maybe out with Daddy on a little errand that he’d turn into childhood wonder. It helps me get through each day.

A mother smiles with her daughter, who's wearing a breathing tube.

It started with a white lie to myself. To help me cope. But the truth is the lie is sometimes easier.

A few weeks ago I had the question. I took your sister to the grocery store at what was apparently “Baby Happy Hour” — lines of moms with perfectly coiffed babies in their carts, chatting and swapping woes. Your sister and I arrived at the check-out line and were greeted with welcoming adult-baby voices. (I hate those. I know you did, too.)

“Ohhh, how old are weeee?”

“She’s 22 months,” I said.

“Nom nom nom. You like your snackies, don’t you, sweetie.”

Do I respond?

“Annnd, is she your first?”

“She’s my second.”

“Oh, you have a kindergartner?”

“No, an 8-year-old.”

“Ohhh! Such a gap between them? She must be a big helper?”

“Yes. She’s the best big sister in the world.”

I pretended. I pretended you are still here. I pretended I can relate to those doe-eyed women who probably believe only other people’s children die, not people they meet in the grocery store.

But then it happened again. And I said the same thing.

“She’s my second. Yes, both girls. She’s almost 2, and I have an 8-year-old.”

Only you were never 8.

Gwendolyn's daughter, wearing a breathing tube.

Somehow at the beginning of this summer when you seemed on top of the world, I slipped and said that you were 8 to a stranger. You eyed me with a mischievous smile, knowing the secret but wondering if I’d made a mistake or was playing a game. I winked at you. And your eyes twinkled.

A second grade graduate. A voracious reader loving the academic challenges. A social butterfly with loving friends. So many big summer adventures planned. And so much already in the works for third grade. You were on top of your world. And there was no reason you wouldn’t be 8.

Except for spinal muscular atrophy (SMA).

I talked about losing you for nearly 8 years. I knew I would and worked hard at acceptance. I watched you grow weaker, and in the beginning, I noticed every single change. They were searing, and I grieved those declines — repeatedly.

But seeing you soar the last several years in spite of your body’s degeneration, I no longer dwelled on the declines and started making plans for your future. Trepidatiously at first, not wanting to be naive. But it’s hard to live like every day could be your last — for years. Though always intensely aware of how precious the little things and your daily experiences were, somehow along the way we started living beyond just the immediate moment. And Daddy and I started organizing logistics for our long future together. And I wanted all of that, even with the big challenges that came with it. Because it meant life with you.

I suppose I may have been pretending when you were alive, too. I suppose I had to for self-preservation. I had that nagging feeling in the pit of my stomach all last year. But it was a good year. No illness. No hospitalizations. Nothing any doctors or specialists could help with. Maybe I didn’t want to see it. Maybe I needed to pretend so I could give you the independence you craved. How could I ever leave your side if I believed I would lose you at any moment?

Right now I need to pretend to help me learn how to live this new life without you.

I pretend to help me function. I can’t be approaching yet another holiday without you. I’ve already had to endure your birthday and Halloween and Thanksgiving with you gone. I can’t possibly face Christmas, too.

I pretend to protect myself. I feel anxious speaking with people, afraid they may lob a bomb at me with their words. Unintentionally, I am sure. But I feel too fragile and meek to stomach clichés or glib comments.

I pretend to make others comfortable. Because society doesn’t know what to do with my truth. There’s no comfortable way to say, “My child died. How about this weather?”

I pretend to give others peace. Because those who love me want me to be fixed. But life is more shades of grey than the mind can often register. What most can’t understand is that I can laugh at your sister and truly feel joy and gratitude and still ache and bleed and long for you. Sometimes I laugh and cry and feel both joy and pain literally all at one time.

I pretend that the bleeding is slowing. That I’m learning to live with this hole in my being. I think this may always be true.

But I won’t ever pretend you didn’t exist. That you were never my precious child. So I pretend you are off having fun because that thought makes me smile. I leave your room just as it was, dusting your many trinkets and placing them back in the same spot. Leaving your bed made with unwashed sheets so I can curl in and smell the last vestiges of you.

The truth is I’m lost without you. I’m wandering, searching for you. I feel unsettled in this world without you. I am still trying to understand how life without you can be real. How are you gone?

My strong love for you fueled me. Your soft skin and bones were my glue. So I want to keep pretending.

Yesterday, a mother I didn’t know innocently asked me the question, “Is she your only child?”

I took a deep breath and closed my eyes for a moment. I felt the tears burn the insides of my eyelids. My throat suddenly filled with sawdust.

“No, she’s my second. My older daughter recently passed away. Her name was Gwendolyn. She was almost 8. And she was amazing.”

A woman nuzzling her daughter.

This post originally appeared on The Gwendolyn Strong Foundation.

Originally published: December 18, 2015
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