Sunday, January 24, 2010

The word for today is:


Do you know what this word means? This is not another grandiloquent, sesquipedalian word test. It is a medical term.
Adrenomyeloneuropathy (AMN) is a form of X-linked adrenoleukodystrophy. AMN patients generally have spinal cord dysfunction, which leads to the initial symptoms that include difficulties in walking or a change in the walking pattern. The average age at which symptoms first appear is 28, but onset can occur anywhere from the second to the fifth decades of life.
I am told that this is a very rare disease. The AARP site says it is a 1 in 20,000 incidence. That's not so rare. In fact you'd have a 100,000 to 1 better chance of having AMN than winning to California State lottery. Other sources say it is more like 30,000 total cases out of the 6.2 Billion people on the planet. Opinions vary! But 4 things are certain:
1. There is no cure.
2. No Doctors in San Diego have ever treated it.
3. I don't have it.
4. My 24yr old son does have it.

Forgive my passion. Today I am quit mad with the situation. I am an old man. And have enjoyed a full life. It's not the amount of years in my life that count. It is the amount of life in the years. And I put more life into the first 30 years of my life than most people see in 80. If I were to be called home today; I have left nothing undone. Nothing unseen. No adventures unexperienced. No loves not fully realized. No fights unfinished. No places unexplored. No enemies unconquered.  No challenges unanswered. No subjects unstudied.
I've been a: Sailor. Exterminator. Basketball player. Baseball player. Football player. Scuba diver. Gunsmith. Marksman. Sharpshooter. Musician. Electronic Technician. Micro Miniature Circuitry Repair man. Nuclear Weapons; Handler, Security responder, launch captain and guard force member. A Body Guard. Security Guard. Brig Guard. Prisoner escort. Anti-Submarine Warfare Officer.Ship Handler. Artist. Oceanographer. Runner. Bicycler. Swimmer. Fighter. Body builder. Scholar. Student. Warrior. Computer Analyst. Network Administrator. Network Security Expert. Firefighter. Painter. Cancer patient and survivor. Husband. And Father.
But today my heart is broken. One of my blog followers says that he doesn't like to read blogs about people's children. "It's boring" he says. Well tough darts farmer. This blog is about my son. You don't have to like it. No one has to like it. Perhaps you'd be more comfortable stealing the last can of WHO-HASH.
My son, who is 24 years old. Stands 6 feet, 4 inches tall. Tips the scales at 160. Has the beautiful sandy blond hair he got from his mother. He has the steely ice blue eyes of his father. Broad shouldered. Kind hearted. Intelligent beyond measure. Generous to a fault. Wise beyond his years.
When we were anticipating his birth, I told my wife that I wanted to name a boy Conan. And if a girl, Valeria. She laughed at me and said "NO WAY!"
I was serious. I have been a Conan fan for as long as I can recall. Decades before Arnold ever took the movie role, I was reading "WEIRD TALES" "The Phoenix On The Sword" and "The Tower Of The Elephant" by Robert E. Howard. And so I chided my love, that if she didn't let me name a boy "Conan" I would secretly go to the doctor or nurse and name him "SMEDLEY." Smedley Spaulding! Still no dice. She wouldn't take me seriously. Even on the rare occasions when she thought I might be in earnest, she would say "He'd be teased." "People will laugh."
"Not while I'm there, they won't."
She wanted to use the Dutch tradition of naming a boy after the Grandfather or the Father. But my name was mine. Kurt was mine. I didn't want to share it. And I wouldn't name a ratsnake after my father (That is a tale for another day). So I settled on another name. One that was similar in Celtic origin. With a hero as an inspiration. We settled on Kyle. In Irish it means handsome. In the TERMINATOR movie trilogy Kyle Reece is the time traveler who becomes the father of John Connor.
Normally for privacy sake, I would not mention my son's condition. But he posted it on his blog, KONAN THE BLOGARIAN. And on his facebook. So I am assuming he doesn't mind people knowing. Now, I have another hero in my life. In spite of his disability, he still takes care of me and my needs. Yes, he was almost named after one of my favorite heroes. Then was named after another of my favorite heroes. And ended up being one of my real life heroes. I should have been one of his (The jury is still out on that one). Funny, how God works. But I don't feel much like laughing.
Be well. Be blessed. And stop by and say "Hi" to one of my heroes.


MsDarkstar said...

There is a difference between periodically writing about your children and blogging about every little thing your 18 month old does.

The blog post here today? Totally understandable, well written and not at all annoying. The blog post "Mommy Blogger X" writes about "Today, Pwecious ate Cheerios and spit up three times, my goodness, what a day it's been" = NOT the blogging I want to read.

At least, that's how *I* feel. And other people may love to read posts about Pwescious and the Cheerios.

I wish all the best for your son. I know you will do all you can to make the absolute best of the situation. Thank you for sharing.

Becki Jacket said...

I'd rather read about your 24 yr old son than read about a baby that can't even think for itself. Do you pick up what I'm throwin down? Haha.

Everyone has their own disabilities. Some people have a disability that's easier to see. Other people, like me, it's a little harder to realize. I wish the best of luck to you and your family. Keep a prayer in your heart and I'm sure you won't go wrong.

Anonymous said...

Kurt, you are an amazing man. You are also a writer, although you didn't put it down. You have that talent too. I feel for your son, I know nothing about his disease. I do know what it's like to have a child who develops a disability and it hurts beyond measure. "Fair" doesn't fit in the discussion anywhere, it just IS. So you deal with the information at hand and move forward in the best way possible.

My guess? You are a hero in your sons eyes, a man he can look up to and be proud of. What more can you ask from your Dad.

Enough from me... and you really should have tried finishing that soup.. it's the bomb. Have a good night.

Ms. A said...

As tragic as any illness is, especially when it's your children, be thankful he has a diagnosis. Much harder to battle a monster, when you don't know what it is you are battling. Plus, the earlier he receives treatment, the better. I understand an Addisonian crisis can be life-threatening. Has anyone else been tested? Prayers KW and Kyle.


That's truly a lovely post.But remember, he is all what he is because you taught him to be all that is honourable. I have no dodubt you're his hero, too!

I shall go over and 'Uber' him. :)

Unknown said...

Loved this post Kurt! You can blog about computer security all you want,but I don't get to know you from that. This post lets me know Kurt the person. And I like him. :-)

Edie said...

First, I agree with what Kelly said. Talk about your kids and your life as much as you want. Getting to know people is more fun.

Your son is your hero. How do you suppose that makes him feel? I bet it makes it a wee bit easier to deal with his condition. I bet it gives him strength and courage to face it and keep pressing forward.

God has not overlooked your son. He still has a plan to give him life to the full. Don't give up on what He has planned, just keep being proud of your son to encourage him and pray him through the trial.

On my way to meet Konan. :)


My ADHD Me said...

Thank you for letting us into your life.
I am so sorry about your son. He is your son though....therefore, this young man will fight the fight.

As for reading about peoples kids, etc...yes, I would much rather read about someones fish aquarium....not.