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 despite some
catastrophic accident, or miracle, we would outlive our daughter.
As the air began to refill the room a bit, I glanced over at
our then five year old daughter. She was
sleeping on the examination table. We
had driven nearly a half days drive to get to see her specialist, and despite
sleeping in the hotel for a full nights rest she was still simply
exhausted. She had ostomy collection
bags hanging from different connections in her stomach collecting the drainage
that 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 we knew were 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 doctor’s at home constantly tried to sugar coat 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 2 years. How could this be happening?
I left that day not with a plan to treat or fix my child, but 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 grand kids, 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. It is the only fair and just way this world is supposed to work. You aren’t supposed to bury your babies.
“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 doctor’s at home constantly tried to sugar coat 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 2 years. How could this be happening?
I left that day not with a plan to treat or fix my child, but 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 grand kids, 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. It is the only fair and just 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 are leading.
I have watched too many friends of mine, whose children too have
mitochondrial disease, bury their babies outside the proper order of time. I have fought with the unfairness and illogic
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.
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