ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel


Updated on July 18, 2015

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.

*From The United Mitochondrial Disease Foundation

MIto Facts

  • 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


    0 of 8192 characters used
    Post Comment

    • JayeWisdom profile image

      Jaye Denman 

      3 years ago from Deep South, USA

      Pete - This is a magnificent story, and the informational sidebars are a great way to educate readers learning for the first time about this disease.

      The last sentence in the story is perfect...glorious!

      Voted Up++++ and shared


    • Genna East profile image

      Genna East 

      3 years ago from Massachusetts, USA

      You are still one of the best writers on the hub. You have taken a devastating disease beyond the statistics we normally read about, and have given it the human face of experience, emotion and courage of those it impacts…both the victim and the family. This is a heartrending, beautifully written piece. Voted way up and shared.

    • MsDora profile image

      Dora Weithers 

      3 years ago from The Caribbean

      Really beautiful sentiments. Thanks for the Mito facts and the story of courage.

    • weestro profile imageAUTHOR

      Pete Fanning 

      3 years ago from Virginia

      Thanks for stopping by Marlo, glad I could help!

    • MarloByDesign profile image


      3 years ago from United States

      Very educational for me to learn about Mitochondrial disease. Thank you. Voted "Useful".

    • weestro profile imageAUTHOR

      Pete Fanning 

      3 years ago from Virginia

      Thank you for reading guys, I wrote this after learning about this terrible disease and seeing how it affected so many wonderful children and families. There's actually a whole lot more I've written that I may post separately.

    • Becky Katz profile image

      Becky Katz 

      3 years ago from Hereford, AZ

      This one is a heartbreaker. Very well written.

    • Jodah profile image

      John Hansen 

      3 years ago from Queensland Australia

      What a wonderfu hub..heart wrenching but beautiful. Voted awesome.


    This website uses cookies

    As a user in the EEA, your approval is needed on a few things. To provide a better website experience, uses cookies (and other similar technologies) and may collect, process, and share personal data. Please choose which areas of our service you consent to our doing so.

    For more information on managing or withdrawing consents and how we handle data, visit our Privacy Policy at:

    Show Details
    HubPages Device IDThis is used to identify particular browsers or devices when the access the service, and is used for security reasons.
    LoginThis is necessary to sign in to the HubPages Service.
    Google RecaptchaThis is used to prevent bots and spam. (Privacy Policy)
    AkismetThis is used to detect comment spam. (Privacy Policy)
    HubPages Google AnalyticsThis is used to provide data on traffic to our website, all personally identifyable data is anonymized. (Privacy Policy)
    HubPages Traffic PixelThis is used to collect data on traffic to articles and other pages on our site. Unless you are signed in to a HubPages account, all personally identifiable information is anonymized.
    Amazon Web ServicesThis is a cloud services platform that we used to host our service. (Privacy Policy)
    CloudflareThis is a cloud CDN service that we use to efficiently deliver files required for our service to operate such as javascript, cascading style sheets, images, and videos. (Privacy Policy)
    Google Hosted LibrariesJavascript software libraries such as jQuery are loaded at endpoints on the or domains, for performance and efficiency reasons. (Privacy Policy)
    Google Custom SearchThis is feature allows you to search the site. (Privacy Policy)
    Google MapsSome articles have Google Maps embedded in them. (Privacy Policy)
    Google ChartsThis is used to display charts and graphs on articles and the author center. (Privacy Policy)
    Google AdSense Host APIThis service allows you to sign up for or associate a Google AdSense account with HubPages, so that you can earn money from ads on your articles. No data is shared unless you engage with this feature. (Privacy Policy)
    Google YouTubeSome articles have YouTube videos embedded in them. (Privacy Policy)
    VimeoSome articles have Vimeo videos embedded in them. (Privacy Policy)
    PaypalThis is used for a registered author who enrolls in the HubPages Earnings program and requests to be paid via PayPal. No data is shared with Paypal unless you engage with this feature. (Privacy Policy)
    Facebook LoginYou can use this to streamline signing up for, or signing in to your Hubpages account. No data is shared with Facebook unless you engage with this feature. (Privacy Policy)
    MavenThis supports the Maven widget and search functionality. (Privacy Policy)
    Google AdSenseThis is an ad network. (Privacy Policy)
    Google DoubleClickGoogle provides ad serving technology and runs an ad network. (Privacy Policy)
    Index ExchangeThis is an ad network. (Privacy Policy)
    SovrnThis is an ad network. (Privacy Policy)
    Facebook AdsThis is an ad network. (Privacy Policy)
    Amazon Unified Ad MarketplaceThis is an ad network. (Privacy Policy)
    AppNexusThis is an ad network. (Privacy Policy)
    OpenxThis is an ad network. (Privacy Policy)
    Rubicon ProjectThis is an ad network. (Privacy Policy)
    TripleLiftThis is an ad network. (Privacy Policy)
    Say MediaWe partner with Say Media to deliver ad campaigns on our sites. (Privacy Policy)
    Remarketing PixelsWe may use remarketing pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to advertise the HubPages Service to people that have visited our sites.
    Conversion Tracking PixelsWe may use conversion tracking pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to identify when an advertisement has successfully resulted in the desired action, such as signing up for the HubPages Service or publishing an article on the HubPages Service.
    Author Google AnalyticsThis is used to provide traffic data and reports to the authors of articles on the HubPages Service. (Privacy Policy)
    ComscoreComScore is a media measurement and analytics company providing marketing data and analytics to enterprises, media and advertising agencies, and publishers. Non-consent will result in ComScore only processing obfuscated personal data. (Privacy Policy)
    Amazon Tracking PixelSome articles display amazon products as part of the Amazon Affiliate program, this pixel provides traffic statistics for those products (Privacy Policy)