One in Six Million

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_E5A6163aWhoever said “live like you are dying” was a real twerp.  Seriously. If everyone lived each moment like it was their last, the world would fall to pieces.  Think about it: Everyone would quit their jobs.  We’d all gain at least 20 pounds each. bread. cheese. chocolate. cheese. Christmas decorations would be up all year round. Hugging…so much hugging.  Whitney Huston’s “One Moment in Time” on a constant loop. We’d all just walk around sobbing at every puppy and sunset we saw, wondering if it would be our last. That’s no way to live! As a matter of fact…it’s exhausting. Depressing! Have you ever watched Beaches, Step Mom or Old Yeller?! Well… multiply that by 10 and you maybe have a taste of what that would feel like.  Trust me.

In August of last year, I was diagnosed with a rare terminal lung disease called Pulmonary Veno Occlusive Disease or PVOD. It’s a rare form of Pulmonary Hypertension or PH, which is a fancy way of saying that my lungs aren’t getting enough oxygen and my heart is having to work extra hard to pump oxygenated blood to all my important organs. Not much is known about this disease and the only major treatment is a lung transplant.

The odds of getting diagnosed with such a disease: 1 in 6 million.

Here are some other statistics that should help put this into perspective:

Odds of being born with 11 fingers or toes: 1 in 500

Odds of winning an Oscar:  1 in 11,500

Odds of being struck by lightning:  1 in 700,000

Odds of becoming a billionaire:  1 in 7,000,000

Odds of becoming President of the U.S.:  1 in 10,000,000

So based on my luck, I should be a lightning survivor, billionaire Oscar winner with 11 toes, running for president.

But alas…I am none of these things.  Instead, I am sick.  I’ve got a bad pair of lungs. And that’s ok.

I really really don’t want this blog to be sad. or depressing.  We have enough Twilight moms, Jersey Shore millionaires and pet obesity for that. What I do want is 1) to help anyone in a similar situation 2) raise awareness for organ donation and this beast of a disease (which often goes misdiagnosed, if diagnosed at all) 3) to rant to something that isn’t my husband because there’s only so much tender face caressing a man can take. Poor guy.

Let me be honest…lung disease sucks.  Oxygen tubes dry out my nose and I feel more geriatric than vicenarian…but most of the time…I’m really happy.  Like truly happy.  I have the most wonderful husband who throws me into an attack every 5 minutes from laughing so hard.  I have supportive family and friends who at any given moment would drop anything to help me. I still go to work. I still shower.  I still wear pants….ok, maybe I don’t (Maybe I never did).  I still eat everything that’s in front of me (probably not helping). And there’s still hope. And where there’s hope (and faith), there is peace.

I’ve been blessed with a condition that makes me acutely aware of my existence. And I find it my duty to impart with you one of the truths I have learned about that existence thus far. It is this: we are all going to die someday, but…we will live until we do. Shocking, I know! If you are reading this, then you are still alive!  So…quit your job, turn up the Whitney Huston and get to gaining that 20 pounds or simply follow Snookie’s advice, “steal a plant, get arrested, and then do whatever,” because congratulations, you’re lucky like me.

24 Responses
  • Ashley Crossley
    February 15, 2016

    Oh Mackenzie you are wonderful! This was so beautiful and I love you

  • Misty
    February 15, 2016

    After Joy died I kind of felt super guilty about not living every day as if it were my last. I realized if we had done that for Joy she would have been a spoiled brat. One day when I was crying about it I felt her little spirit whisper to my heart, “Don’t live each day as if it’s your last, live it as if it’s your best.” You have always done that and we love you.

    My kids pray for you everyday. They still remember you as the coolest babysitter with a guitar. You are up there with Maria Von Trap, let me tell you. Just know a whole bunch of Little Liu kids worship you. 🙂

  • Sylvia Andersen
    February 15, 2016

    Dearest Mackenzie,
    I loved this post! I did not know your rare disease was terminal. I know you will find a donor! I am a major advocate of becoming a donor, having it on ones Drivers License so no additional approval is needed in cases of emergency! In fact I am certain most of my body parts will be donated at death so I am being cremated with what little , if anything, is left!
    Knowing this now also makes me want to take good care of my body so these parts are of benefit to someone.
    I love you so much and keep you continually in my prayers . You will have a long wonderful life, you deserve it!
    Much much love!

  • Lavi Mounga
    February 15, 2016

    Love you Mackenzie!!! Love your perspective. Love your words but mostly love you!

  • Courtney newby
    February 15, 2016

    “…we will live until we do.” So profound Kenz. You’re activism and hope are infectious. I remember laughing harder than I ever have around you during Dance Alliance. You are in a position that none of us are in and that is to be a living example of hope and positive action in the face of sorrow. You were born for this, I fully embrace your mission and the way you stand ready. Love you!!!

  • Shayda Baker
    February 15, 2016

    Seriously Mackenzie you are such an inspiration. I’ve always looked up to you, even if it has been from a distance the past few years. You are amazing in every way, and your words touched me more than I could explain. Keep fighting girl and live your life. Keeping you in my prayers often and I look forward to hearing more from you!

  • Trisha Jamison
    February 15, 2016

    This post just warms my heart and soul. What profound words and a marvelous inspiring perspective.

    I can still remember when you were about 9 years old. You were at our house with your jean overalls and braided pigtails sitting on the bunk bed making everyone laugh around you. You have always had that amazing gift of making everyone around you feel so loved, accepted and yes…laugh! You are on of a kind! A gift to all you know you. I feel my life is that much better because I had the opportunity to know and love you. Thank you for your perseverance and strength! You are not 1 in 6 million. You are 1 in 100 million!!! We love and pray for you daily Mackenzie!!! You can do this!!!

  • Deanna Moon
    February 15, 2016

    You have always been one of my favorite powerful people! Now you are just turning up the volume on your powerful self!
    Love you and pray for you everyday!

  • Alene
    February 15, 2016

    Beautiful blog and SO WISE. Thank you. I am praying for you too, even though I haven’t seen you since you were a little tiny baby!

  • Bailey Armour Taylor
    February 15, 2016

    Mackenzie! I stumbled upon your Instagram account and then followed the link in your profile. I have to admit my heart aches for you but I am so comforted to see that adversity has not dulled your spirit. You have always been such a vibrant person and I so admire that about you. I’ve never laughed harder or more frequently than when we were roommates at BYU-I.
    This may seem random but I have to tell you about how I was touched by your solo performance in Dance Alliance a few years ago. I believe it was referred to as the motherhood number?…James Taylor sang the song “Hard Times Come Again No More”….watching you dance that number was an experience that brought me such peace. I STILL think about it all these years later. You are a beautiful soul with many gifts I’m grateful you share. I love you and want you to know that I am praying for you.

  • Natalie Peterson
    February 15, 2016

    I love the way you worded this. My daughter has PFIC2, a genetic disease that is making her liver fail at age 3. The odds of both her parents being carriers of that mutated gene are 1 in 100 MILLION. But she is a joy, and she lights up the world. 💖 we truly experience life and are aware of each day because of my spunky 3 year old with “a broken liver.”

  • Dan Morgan
    February 16, 2016

    I knew there were more reasons that I loved than just your incredible good looks, inquiring mind, beautiful singing voice, great humor, caring spirit, and infectious smile.

    You are an amazing woman, and I am better for knowing you. Thank you for being you!!

    Love you MacNCheese,
    Dan

  • Janet Hunter-Scott
    February 16, 2016

    Mackenzie- you have been given the heart of a warrior. Please know the circle praying not only for you but for those in similar positions and also for donors and their families, widens daily. May you laugh, love and live!

  • Susan M
    February 16, 2016

    You have a beautiful perspective on life and your condition. Prayers for you. I hope you get your new lungs real soon so your family and the world can still hold onto your sweet nature.♡

  • Jackie
    February 16, 2016

    What an example you always were to the YW in our ward! I remember the day when our Abbey said that she wanted to grow up to be just like you! You were such a great singer, voice coach, and example to her and Clint and I were thankful that someone like you had influenced her for good! And now I think of the great trial you’re enduring with such grace and faith. Again we’re amazed at you, sweet Mackenzie, and thankful for your example! Love you, girl, and praying for a miracle!

  • Erie
    February 16, 2016

    This was very moving & insigtful. It gives me another perspective on this crazing thing we all go through called… Life. And by another perspective, I mean one better than the one I had before reading this. You are so beautiful. I am thankful that you have chosen to share your thoughts with us. It’s wonderful souls like you who change the world one person at a time by the love in your heart. I feel it… Across the country from you, I feel it.

  • Trevor Holms Petersen
    February 16, 2016

    Love your guts!

  • Susan Cosney
    February 16, 2016

    Mackenzie: The picture of you is wonderful. Funny you should sent me a copy of the blog… we haven’t done much together… you were just a bright light in the foggy mist of trying to start up a business that was very costly… and I didn’t even know it or see it coming. The Grove Theater was a failure, and this old woman (71 last August 5th on my birthday). I didn’t make it to the birthday 9 days short of it… I went overnight from being “healthy” and not taking any meds to having a heart attack and taking 4 meds. And I have pretty much lived out my life— my parents passed very young at 54 and 58 and gosh I was over 70 before last July and although I am a blood thinner and 3 other things. And then there’s you. I was in the hospital such a short time, and was home again just 2 days later. I just didn’t have time for being sick! Knowing that I am, and that my life was spared much to disbelief I do understand some of the things you are saying. I feel too that hope is very valuable… and I hope you achieve your goals.

  • Brittney Rust
    February 16, 2016

    Mackenzie the light you bring to the world is radiant. I still remember you as one of the happiest people I’ve ever known, and your girl’s camp name Giggle Monster was perfectly fitting! I’m so sorry to learn about this terminal disease you have. I didn’t realize it was so serious. I’m grateful your warrior heart and sunny disposition are seeing you through this.
    The things you and Henry post are the cheeriest things in my fb feed, you goofballs always make me smile! Xoxo

  • Roxanne benson
    February 16, 2016

    I had no idea. What courage you have to face the future! We will pray for you. Can you still snort with the oxygen tubes in your nose?

  • Jessie
    February 16, 2016

    You make oxygen look like an accessory. Well written.
    God bless as He always has.

  • Monica Packer
    February 17, 2016

    This is the best blog post I have ever read. And I’m a serial blog reader. I can’t wait to read more. Thank you.

  • Jeff Jamison
    February 18, 2016

    What do you say to the girl that I’ve loved like a daughter since she was 12 when she has something this tough to endure? I love you’s and I care about you’s all help, but what single thing could I, your part-time dad, friend and doctor say to you that would make a difference? I guess it is just this:

    Jesus gave you the light of a sunbeam. You have become that sunbeam for everyone to see. You make me proud as a sometime surrogate dad can be.

    Love you MAK

    Jeff

  • H. James Brown
    March 14, 2016

    Mackenziie (Mac), I saw Chelsea Kenison at MSHS production of Into the Woods on Saturday night. She told me of your condition and forwarded me your blog. I was totally unaware of your condition. But through your blog I certainly sense the same spirit and positive attitude that you always had in high school. Right now I’m looking at the two dog tags that you gave the casts from Play On and Godspell. These two items are very special to me and I see them any time i open my dresser drawer. Thank you for sharing with others through your blog, just like you’ve always done. Your husband must be one special guy and the love you share very special indeed. But what’s not to love with a wonderful young lady like yourself. Keep up the good fight. My thoughts and prayers are with you, husband and your wonderful family. Say hello to your mother, Courtney and the boys for me. Hugs and love to you Mac.

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