Tuesday, September 30, 2008

Que Sera, Sera

The first time he looked up at me with those happy blue eyes and said, "Mommy, I'm gonna grow up to be an army man," he was probably 3. Without hesitating, I replied, "Of course you are, my brave, sweet boy," even though I knew I was lying. It wasn't going to happen, but it seemed unusually cruel and completely unnecessary to tell him he couldn't. After all, isn't it a parent's job to instill confidence in their children? Help them realize the world is out there for them, the sky's the limit? But what if it isn't? What then? Well, I certainly wasn't going to worry about it right then. Besides, don't all little boys want to be "army men"? Don't most grow out of it? Surely.

Well, the little dream of his remained. And grew. But there was time... No rush to break the news to this smart, funny, gregarious boy that only wanted a normal life. He had enough to deal with. Daily medicine, treatments, doctor visits. It was important to let him know he could be completely normal. Just like everybody else. Even better, in fact.

After all, he runs so fast, swims circles around others, and points his skis down the steepest of slopes without looking back or slowing down. A metaphor for how he has lives each day. He is actively defeating the odds. He can do anything... except the one thing he wants to do. How do I tell him? Does he maybe already know? There's time. He'll grow out of it. 

But then it happened last year. My unstoppable teen was talking on the phone to his girlfriend in a tone I hadn't ever heard. Shocked and maybe slightly panicked. Not scared or worried, but angry and confused. I stood outside his door, listening while my heart slowly sank. He was recounting how some kids at school told him rather matter-of-factly that he was going to die by the time he was 30. It was time to get real. 

Don't get me wrong... my son has known about his disease since before he even knew what a disease really was. I have been upfront, direct, and completely honest with him. Of course I have put my hopeful, positive spin on it because that is what gets me out of bed and keeps me sane. And it is what will keep him healthy until a cure is found. But it is also what has perpetuated the one lie (or conspicuous omission, if you will) that has to finally be confronted. 

He won't die by the time he is 30. He will do more and live longer than most that share that pesky mutated gene, DeltaF508. However... He can't join the Army. Or the Coast Guard. Or, while we're at it, the Peace Corps. And he certainly can't be a firefighter... his lungs would never last.

He has taken the news well. He certainly is mad and finds the situation completely unfair and illogical. But slowly, he has grown to accept it. He's started to look into other careers... trying to reshape his dream. He still brings it up, the unfairness of it all. And all I can do is agree and tell him what a great policeman he will be. Or teacher. Or doctor. He can be anything he wants to be. Almost. 

14 comments:

Girl Friday said...

Amazing. You are amazing. I'm ohsoglad I found you again.

Jay @halftime lessons said...

I take it back...I thought of something to say.

Thanks.

Jay

Wendyburd1 said...

Wow. Just wow. Thank you for sharing this. It's truly an amazing story, and there is so much life has to offer out there, I'm sure he will find a new dream someday.*hugs*

Liza's Eyeview said...

Here's a cyber hug for you and your son.... very touching post. Thank you.

First time here (came from jay's blog which I found at Shauna's Design blog...)

Eudae-mamia said...

Wow.

Thanks Jay!

Em

Eternal Sunshine said...

Terrific post. I'm hoping that your boy finds something to do that makes him truly happy - even if he can't be an army man...

Jyl @ MommyGossip said...

Jay's right, this is beautiful and a tearjerker. I am so glad I stopped by to check out your blog and read this post.

On such a less significant level, I remember the first time they told me I couldn't give blood because I had epilepsy. We were all donating for a friend who was dying from leukemia. Had it been a regular blood drive, I wouldn't have cared, but to not be able to help save my friend because of my illness really hit home to me that I would have limitations throughout my life. And, those limitations have been small and big, but life has still been sweet.

Your son will make a difference because he is determined.

Good N Crazy said...

Jay sent me. and good grief what the heck is DeltaF508? You can hit me I'm a biologist!

He'll be a great kid..and adult.

Jenni Jiggety said...

Wow.

Jay from halftime sent me over. And I'll be coming back...

Nikka said...

when fate shuts the door, you break a window...

Laski Gal said...

Wow. Blog-hopped.

You amaze me. Your son amazes me.

This is seriously beautiful.

Love . . . Perfect. Simple. Honest.

amelia bedelia said...

I found you through Halftime Lessons, and glad I did. Your post was very...you seem like a great mother with great children. I'll be back.

The Mommy said...

Seems you touched not just me with this post, but a lot of others. This post is what grabbed me. No, I lied, the name of your blog is what grabbed my attention. The post is what held it. ~hugs~ to you and your son. How amazing. Such a touching story. I'm sure I could find this info somewhere, but I'm lazy lol! How old is your son now??

Also - have you thought about talking to your local fire department about him? Explain what he has and how he's always wanted to be a fireman? A lot of departments have full ability to take him around, show him the place, etc. One of my good friends is a fire fighter and we take our boys (quite often, actually) to the dept. to play on the rigs, etc. Maybe something to look into? Maybe they'll do something neat for him, since he can't experience it the way he wanted to?

Erin @ Sprouted said...

I'm not much of a blog-hopper, but glad I hopped--Kristina P. sent me to Jay who sent me here.

It's interesting how most of us, little or small, have limitations, huh? I learned about one of mine a few years back, not my fault. I think sometimes this is how we get problems solved--we get mad or determined enough and don't want others to experience what we have. So here's to optimism that your son's disease does just that. In the meantime, yes! Life takes unexpected turns, but always turns out for the best.

Thanks for sharing.