Monday, May 10, 2010

Monkey's Monday Minute


Ian at The Daily Dose of Reality asked several of us bloggers to join in on this extra special edition of the Monday Minute.  Michelle, one of our blogging buddies over at My Pixie Dreams, just received news that no parent should have to hear - her 16 month old baby, Monkey, has been diagnosed with a rare form of cancer.
1.  How old do you act?
I've been thinking about this one for a couple of days.  I think I act old, or at least older than I am.  I don't mean to act old; it's just that I sometimes feel like I've got the weight of the world on my shoulders, even though I don't.  I think was born old.

2.  As far back as you can remember, what did you want to be when you grew up?
That's easy.  Firefighter, just like my daddy.  Guess what I'm not?

3.  If you were to write a book based on your life, what would the title be?
WHICH END IS UP?  I feel like I've spent my life trying to follow the bubbles to the surface.

4.  What's something you do that's considered "childish" by most?
Remember question #1, where I've always acted old?  I don't know that there's a lot that I do that's considered childish, but I do sometimes get all "cutesy" with RCC.  It makes me sick and I can't believe that it's me doing it.

5.  Write a story of a time when you or someone you know overcame great adversity. (Warning, very long story.)

Once upon a time a child called Digger was born.  Digger's daddy, granddaddy, aunt, great aunt and cousin all have a horrible inherited channelopathy called Hypokalemic Periodic Paralysis (HypoKPP).  HypoKPP causes paralysis, either partial or complete, due to a lack of intracellular potassium.  Sometimes the attacks last a few hours, sometimes a few days.  And sometimes, it requires hospitalization and a ventilator if the respiratory muscles are affected.  In addition to not being able to move, the attacks and recovery from the attacks are excruciatingly painful.

Digger's mommy was on OrthoNovum birth control pills.  The pills failed and Digger's mommy ended up pregnant.  His mommy and daddy knew that Digger had a 25% chance of exhibiting the trait, 50% chance of carrying the trait, and a 25% chance of not inheriting the disease at all.

When Digger was a toddler, he used to complain about his legs being tired.  His mommy and daddy worried that Digger was exhibiting symptoms of HypoKPP, but then, all toddlers complain of their legs being tired.  Right?

Digger outgrew toddlerhood and ran headfirst into childhood.  He never stopped moving and his complaints about tired legs went away.  His mommy and daddy breathed a sigh of relief.  By this time, Digger had a sister, Ashee-butt, and baby brother, Monster.  His parents were worried about all of them having the dreaded HypoKPP and carefully watched his siblings for signs of the disease.  

Neither Ashee-butt nor Monster exhibited any signs of the dreaded disease in toddlerhood and with Digger's symptomatic complaints gone, their parents put the disease out of their mind.

The kids' childhood, despite their parents' divorce, was fairly uneventful.  They laughed, they grew, they played all manner of sports without a problem.

Digger loved wrestling and soccer and was exceptionally good at both.  When puberty hit, that all changed.  One morning while his Uncle Deejo was visiting, Digger woke up with his first ever attack.  It was a doozy.  The poor kid woke up a quadriplegic.  His mommy's worst fears were realized.  Yes, Digger had inherited his father's horrible, horrible disease.  His mommy and Uncle Deejo loaded him into the car and took him to the doctor, who knew that there was a chance he'd have the disease.  Digger and his family spent hours in the doctor's office as they tried to raise his potassium.  Slowly, very slowly, he regained control of his body.

That first attack was the beginning of a very long, very hard road for Digger.  The onset of attacks is always sleep, so the poor kid never knew if he'd wake up a paraplegic or quadriplegic.  Nor did he know how long he'd be a para or quad.  Sometimes it would be a couple of hours, sometimes it would be a couple of days.  Thankfully, he was never hospitalized for an attack, though there was a close call one night when he complained of shortness of breath.

The number and severity of his attacks took a toll on everyone in the house.  Sometimes his mommy was very mean because  she was exhausted from working all day and then being woken up in the middle of the night to give Digger his medicine and to re-arrange him into more comfortable positions.  Sometimes his mommy blamed him for not taking care of himself and taking his medications correctly, even though she knew it wasn't really his fault.  She was just tired and angry and hurt to see her child helpless and in so much pain.  On those nights when she was mean to him, she cried herself to sleep, but never let him know.  She was always very careful to apologize to Digger, because it wasn't his fault that he had inherited his father's disease.  

His siblings were also affected; they helped out a lot when Mommy wasn't home.  When she wasn't home, it was up to them to help Digger take his medicine and move him when he needed it.  It was hard on everybody, but hardest on Digger.

He was able, with help from a Home Bound Tutor, to finish junior high, but high school proved to be too much for him.  Digger and his mommy had tapped out all of the resources available to them by the end of his sophomore year.  He tried his hardest to go to school the traditional way, but it just wasn't going to happen without accommodation.  He dropped out of school in the middle of his junior year and took his GED.

As Digger emerges from puberty, he's getting better control over his disease and sometimes goes weeks between attacks.  When he does have an attack, they are now less severe and don't last nearly as long.  

Four weeks ago, Digger took a big step.  He enrolled in college and has completed his first class.  The ability to attend class at night will help him to succeed.  Even if he has an attack in the morning, he's usually recovered by late afternoon and will be able to continue to attend night classes.

What about his sister, Ashee-butt, and his brother, Monster?  They both exhibit mild symptoms of the disease, very mild symptoms.  So mild, that they rarely, if ever, interfere with daily living.

There's no cure for HypoKPP, but there is the ability to live a normal life (once out of puberty).  And sometimes, that's the closest someone can get to a Happily Ever After.


Brandi said...

Holy cow #5! I've never heard of that... how freakin' scary! Congrats to him on enrolling in college. :)

Mrs Mom said...

Bless ya GD, and Digger, Asheebutt and Monster too.

Shannon O'Donnell said...

Prayers for all! Every mother's worst nightmare is something terrible happening to a child. I will be praying.

Aunt Crazy said...

I've never heard of that either, but I'm so proud of Digger for getting his GED and moving forward to college! I hope he's happy and healthy forever!!!

Taylorvillegirl said...

That sounds like a horrible disease. Bless you and Digger and your whole family. Congrats to him on being able to enroll in college. That's pretty impressive.

There is a lot of bloggy love out there for Michelle. Thanks for bringing her situation to our attention. I'm going to go check her out today.

Momma Fargo said...

Wow. Never heard of Digger's disease. Congrats to him!

GunDiva said...

You know, it is a horrible disease, but we can either wallow in how horrible it is or find the humor in it.

Honestly, it's a pretty freaking funny disease sometimes. If you're wondering what an attack looks like, just watch "The Rundown" with Dwayne Johnson. The paralysis induced by the Kavakava (or whatever it is) fruit is very much like Digger's attack. And let's face it, it's just funny.

Linda Medrano said...

Oh my God what a brave young guy! I've never heard of this disease either, but it sounds so incapacitating! I'm so glad he seems to be doing well. Bless his heart! What an inspiration that guy is!

Deejo said...

Especially funny when Digger 'Dutch Ovens' himself. Poor kid!

GunDiva said...

Yes, Deejo, it's beyond funny when he does that!