‘I couldn’t walk away once, but twice, and not see them again.’: Woman loses 2 babies to congenital muscle disease

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“I didn’t want to hold and watch two of my children die. I didn’t want to watch their skin color go from rosy red to ashen. I didn’t want to feel their body temperature drop. I didn’t want to walk away from my child, not once, but twice, knowing I would never see them again. I didn’t want to write two obituaries or plan two funerals. I didn’t want anyone to die, especially not my child. Especially not two of my children.

But that’s what happened to me.

Something very bad happened to me, but I am not broken. Something very bad happened to me, but I am not a victim. My children are not victims. In life, we are not owed anything. There is no fairness in life. There is just life. Life and death. And despite the fact that one is celebrated and one is not, both are in fact, wholly natural. My children’s deaths are not my fault, or theirs, or anyone’s. While there’s a natural order to life — one that’s widely accepted and expected — the truth is we all know that no life is guaranteed. Death is natural. It can be absolutely unexpected, and shocking, and devastating… but when all is said and done, it’s as much a part of our world as living. Birth, life, death.

Courtesy of Whitney Guerrero

For me, I’ve brought three lives into this world as a parent but already watched two leave. I’ve labored three times and delivered three precious babies. But two of my babies were born incredibly sick and died as newborns. Olivia Grace was born on April 24, 2016, and died on July 10. Rory John was born on October 9, 2019, and died on November 1.

Courtesy of Whitney Guerrero
Courtesy of Whitney Guerrero

Olivia and Rory were both born with severe congenital muscle disease. While the details of the disease and diagnosis are still being determined, the way the disease presented itself in our children was clear. They were born with muscles that don’t work like they’re meant to. In fact, they didn’t work at all. Our children were born unable to move, and unable to breathe on their own.

Courtesy of Whitney Guerrero
Courtesy of Whitney Guerrero

Our precious babies were perfect, just born into imperfect bodies. Ones that simply couldn’t survive here on earth. They were born and they were here. They were very much alive. But their bodies couldn’t survive without lifesaving equipment. And we knew a time would come when we as parents had to make a choice — to allow them to leave and return Home…

Until they were born, I never in a million years imagined a world where I’d watch two of my children die. A reality where I held my child as they took their last breath.

Courtesy of Whitney Guerrero

But when faced with that as our actual reality, I have it no other way.

Of course I would be there.

Of course I would hold them.

I would look directly into their eyes, no matter how much the idea crushed me.

Of course we didn’t want our children to die. But when dealt these cards, there was no question. My husband and I would swaddle and rock and hold and kiss and caress and talk to and sing to our children as they took their last breath here on earth.

Courtesy of Whitney Guerrero

Our children, the humans I grew from love with my husband — the humans I grew inside of me for 40 weeks — the children I labored to deliver.

We would hold them.

We would speak strength and courage and peace into our babies as they took their last breath. As they died here on earth and their souls traveled to heaven. We would play music and sway. We would snuggle. We would stare at every inch of their body, absorbing their beauty in absolute awe.

Awe that they were ours and we were theirs, no matter whether they stayed here in our physical world for much longer.

Courtesy of Whitney Guerrero

They were our children and we could keep them warm and safe and loved until the moment they died.

Of course we would.

We would have it no other way.

Because that’s what any parent would do.

Courtesy of Whitney Guerrero

I often say I’ve been irrevocably changed by the life and death of our children. Our story is tragic, and remarkable at the same time. Devastating, and beautiful, all in the same breath. Life-altering, really.

To me, to my family, to our friends and community.

And while it threatened to break me, it did not. I simply wouldn’t let it.

Because pain is inevitable, but suffering is optional.

When faced with a life we didn’t choose, or a circumstance we didn’t expect… we all have a choice of how we’ll move forward.

Will my loved one’s death break me? Will my grief consume me? Will I walk through fire and come out the other side defeated, or empowered?

For me, I chose then, and I keep choosing every day. I choose life. Gratitude. Strength. Empowerment. Joy.

Courtesy of Whitney Guerrero

I’ve walked through fire twice, and come out the other side stronger. A stronger woman and wife. A stronger marriage. A stronger set of beliefs, a stronger faith. A stronger support system, and a stronger ability to support others.

My life’s story may look sad on the surface, but it hasn’t broken me. And to me, it will always look beautiful. Tragically beautiful.”

Courtesy of Whitney Guerrero

This story was submitted to Love What Matters by Whitney Guerrero from Rochester, NY. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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