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Life is mostly waiting. Like right now, I’m waiting. In a waiting room. Soon we’ll be called back to the examination room, where we’ll wait for results and then go from there. Ultimately I’m waiting for a cure. Hoping and waiting, which is much better than the alternative.
I’m thirteen and ever so aware that I look ten. Eleven on a good day. And while other kids my age are running around all summer, doing more living than waiting, hopping in swimming pools or going off to camp, I’m in the waiting room with my mom. But that’s okay, she’s good company.
The waiting is harder for Mom. When she sees me looking at her, her eyes will go bright and she’ll try to cover up the pain and exhaustion with a smile. It’s a smile that hurts, and I can see that it’s not just me this disease is affecting. And as bad as I feel for what I’ve done to her--it’s done to her--I don’t think I’d survive without her.
She’s with me all the time and as weird as it sounds, I feel sorry for her. It’s like her life stopped when I got sick. Her job, our house, Emma and Jacob, even Dad. Everything fell behind, pushed off into the distance. We rent a smaller house now, it's not bad, just cramped with the five of us. All because of money.
A few years ago, I was given a year to live. Two years later I was given another year. So there you have it. Waiting. There are some times, when the pain and the hurt seem to roll me over, and it's all I can do to open my eyes, that I remember that I have to tell myself that I am alive. But enough about that.
I set down my comic book. I like the waiting room at the Lucas Williams Children’s Hospital and I have to say, it’s top notch. It has these wooden birds hanging from the ceiling. Large, real-sized birds with bright colors and orange beaks. Some have train sets, others aquariums, or maybe even a clubhouse set up. But at Lucas, it’s the birds.
I know my way around hospitals, just like I know nurse speak and doctor speak and code for I don't want to say this in front of him. But by then it's usually too late, because I can tell right off the bat whether the news is good or bad or going to make Mom hide out in the bedroom for a week. Let’s see, it’s been over 1,000 blood draws, I.V’s ,I’ve had over 10 X-rays, 4 abdominal ultrasounds, three colonoscopies, two CT scans, an MRI and a host of rectal, colonic, and duodenal motility tests performed on me. I’ll spare you the details.
The only good thing about the waiting room is the staring is easier, not as intense as say, the mall. But here, it’s only the lingering pity of a parent or older sibling, or the worry that they will have to carry their nearly teenage son into the doctor’s office. Mom’s done that before too.
I’ve seen specialists up and down the coast and I've probably spent more than half my life in the sterile confines of well-lit hospitals. All because my parents are two very determined people. They’ve attended conferences, fund raisers, seminars, you name it. They have a support team, which means they can cry and hug and talk openly about my situation, something my mom struggles with and my dad avoids all together.
Mom nods at a red-eyed woman in the waiting room. Her baby’s belly is swollen and he drifts to sleep. Abdominal distension. She’s got a long road ahead of her. I know that sounds horrible but trust me, this exceeding the odds—kind of painful.
“I wonder who cleans up all the bird poop?” I say to mom and she looks up and smiles. It’s a corny joke, but I can’t stand to watch her just sit there and worry. We’re here to discuss the latest tweak to my cocktail. A host of vitamins and supplements to help me in my everyday battle. Because even though I said I’m not a super hero, my mom thinks I am.
“How are you feeling?”
I shrug. “Good, I guess. I’ll bet they give me that stuff that makes my pee fluorescent yellow again.”
Mom chuckles, which makes me laugh. Her real smile is really bright and can light up the room, but usually its usually buried under all the bad news. It’s as if she feels guilty when she smiles or laughs, like she isn’t supposed to be human because I’m sick. So I’ve made it my job is to make her laugh as much as I can. It’s a challenge, but I’m up for it.
She braids her hair without a thought. She has dark brown hair, with only a few wisps of gray, and it falls past her shoulders. She’s been talking about cutting it, but Dad likes it longer. Seeing her hands work the braids, I wonder what her fingers would do without it.
Looking around the room, I feel pretty good overall. Not like run a marathon good or anything like that, but good enough to hop out of this chair and walk back to Dr. Watkins’ office. When you have Mitochondrial Disease, your life revolves around energy. I guess everyone’s does, I’m just much more aware of it. Conserving energy, maintaining energy. Finding energy.
I know that I’ll never play on the basketball team (even though they gave me a jersey) or be a marathon runner. Well, I take that back, because mom pushed me through a 5k last year. Seriously. My mom ran a 5k race, pushing me in a wheelchair the entire way. I remember asking her if she wanted to rest, or telling her we could quit. But do you think she would listen? Nope, she plugged away, one determined breath after another, the whole way. People were crying as we crossed, dead last but finishing. And she calls me a superhero.
Oh, and those birds? The last time I was here I couldn’t have told you about those beaks or the way their feathers shine under the recessed lights. Sometimes my vision is blurry and I can't see much of anything, just shapes.
Mom's chuckle gives me strength. I break out a little dance, bobbing to the left, then to the right. My sister Emmy is the dancer in the family but I do what I can with what I have. And it works. Mom smiles. A real, genuine, Mom smile. And that makes me happy.
When most people see me they know something’s wrong, or they to me like I’m a baby. I can’t really blame them because I’m tiny. But you try living off of a feeding tube. I can’t exactly go have a cheeseburger.
There’s some spiritual music playing overhead, just like you’d expect, kind of like a spiritual soundtrack for my efforts. I wonder if there’s a specialists' radio station on Pandora or something--or maybe they all just tune into the elevator music and hope for the best. Mom taps my shoulder. I see the nurse at the doorway, calling us back. We take our time getting up. There’s only more waiting to come. I stand up, feeling Mom’s worry hovering over me.
I smile at her to let her know I’m okay. She smiles back. Another real smile, one that let's me know that she still has some fight left in her. I squeeze her hand and then we start for the door. And that's when it hits me: Mom isn't waiting on a cure, she's hunting it down.
What is Mitochondrial Disease?
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
- Mitochondria are tiny organelles found in almost every cell in the body.
- They are known as the "powerhouse of the cell."
- They are responsible for creating more than 90% of cellular energy.
- They are necessary in the body to sustain life and support growth.
- They are composed of tiny packages of enzymes that turn nutrients into cellular energy
- Mitochondrial failure causes cell injury that leads to cell death. When multiple organ cells die there is organ failure.
* From Mito Action