When the Doctor Told Us We Would Outlive Our Daughter

There are few times in life that I can honestly say I nearly lost all faith. Faith in everything — time, logic, even God. Having no faith is like having no air in your lungs, no blood in your body, no place to go, no reason for anything, simply existing without purpose. That is what it was like for me the moment a doctor told me in all reality, unless some sort of catastrophic accident or miracle occurred, we would outlive our daughter.

As the air began to refill the room a bit, I glanced over at our then-5-year-old daughter.  She was sleeping on the examination table. We had driven nearly a half-day’s drive to get to see her specialist, and despite sleeping in the hotel for a full night’s rest, she was still simply exhausted.  She had ostomy collection bags hanging from different connections in her stomach collecting the drainage her stomach and intestines could no longer process. She had IV supplements pumping into her permanently tunneled central line to give her the nutrition her digestive tract could no longer maintain.

She was frail, her stomach was protruded, she was pale, and despite the life-threatening sepsis she had just made it through; the chronic liver inflammation she was battling; the bone marrow suppression; the seizures; and difficult-to-treat infections ravishing her body and making her weak, it was truly the first time I saw her as ill as the doctor had just described her. I wanted to be sick.

“How can you be sure?”

“When you have been doing this as long as I have, you just know. No one’s body is meant to carry on like this for the long haul,” she said as empathetically as she possibly could.

I choked a little, my mouth without any saliva at all. “How long?”

“It’s hard to say. If she continues down the path she is on now, as rapidly as she is, maybe one to two years at best.” She looked at me for a moment longer, glanced again at my sweet sleeping girl, and then looked away.

No, no, I thought to myself, There must be some mistake. It just cannot be my little girl we are talking about. The entire conversation felt surreal. Our doctors at home constantly tried to sugarcoat everything. They were always giving us the old “just give her some time” speech. I was so jumbled up; I didn’t know what to believe. Then it struck me. It hit me so hard I nearly crumbled out of my seat — how quickly she had gone from a nearly asymptomatic little girl to a child who needed support for nearly every organ in the short matter of only two years.  How could this be happening?

I left that day not with a plan to treat or fix my child, but with a paper full of suggestions and accommodations on how to best make her comfortable. The shift in care left me feeling defeated. She slept the whole way back to the hotel while I cried.

The world isn’t supposed to work that way; you aren’t supposed to outlive your children. You give birth, you raise them, you have grandkids, you help raise them, you get old, your kids help care for you, and sadly one day they bury you and mourn for you, but that is the way this world is supposed to work.  You aren’t supposed to bury your babies.

It has been three years since that fateful appointment, and it took time, but I have regained my faith in time, logic and even God, not just because my daughter has lived, but because I need my faith to keep me sailing through this life we’re leading. I have watched too many friends of mine, whose children also have mitochondrial disease, bury their babies outside the proper order of time. I have fought with the unfairness and illogical nature that comes with that tragedy. It gouges out your heart and makes your soul bleed in a way I can never fully explain.

I can’t help at times to wonder when my little girl will no longer have the strength to fight, but I do my damndest not to think that way, not to live that way, because the only way to keep the life in her years is to allow her to live them, and that is what we intend to do. Every morning when we wake, we give her life again, to the fullest, until the end.

A version of this post originally appeared on Learning to Let Go; A Different Dream for Us.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to community@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.