To Live Like Aaron

Yesterday Gabe had his best cardiologist appointment to date.

I expected nothing less since the child is honest to goodness going at full speed from the time he wakes up (at 6:15 every. single. day.) to the time his little curls hit the pillow.  He runs and bikes and swims for hours on end and even when I convince him that watching a little TV would do him (e.i. me) some good, he still fidgets and wiggles and drums on everything in reach.

His ECHO results were fabulous and all his numbers were exactly where they needed to be.  His doctor, that I love, thinks that he's ready to come off another medication.  Music to my ears.

The doctor was so positive about it all, that I mustered up enough bravery to ask a question I haven't been ready to ask - What exactly does Gabe's future look like?

I know that he didn't want to answer me.

We'd just had this great, uplifting conversation and now I was asking for him to pop the bubble, give me a dose of reality.

He sighed and gave me the rundown:

The Fontan will work wonders through his teens.  We'll barely notice a difference between him and other kids.  He can't play Varsity sports, which will be a huge bummer to my sport loving boy, but he'll be alive so it's a fair trade.

In his 20's, we'll notice him slowing down, but with rest and medication modifications, he will be alive so again, a fair trade.

The 30's are when Gabe's outcome starts looking bleak.

Survival past 40, unlikely.


Just a few years longer than my brother walked this Earth.

And as the doctor kept talking, about medical advances and stem cells and how long 35 years is in medical terms, I couldn't get that number out of my head.

I sent up a fervent prayer: "Please God let him blow that number out of the water."

But the prayer I offered up on the heels of those words is the true prayer of my heart.  And not just for Gabe, whose future is unclear, but for Josie and Andrew and myself and everyone that I love: "Let him live like Aaron."

Let him be cool without flaunting it.

Let him be accepting of all people, an instant friend to many.

Let him hold those he loves the closest.

Let him be funny and let his shoulders shake when he laughs.

Let him drive his beat up car across the country to go to concerts and ride the country's highest roller coasters and name weekend parties after himself.  Let him be brave enough to do all those things that I never did.

Let him find a love story that will inspire everyone that hears it.

Let him be funny and a bit sarcastic without being biting.

Let him find his art and his voice and, when the day comes that we know the end is near, let him decide to not go gently.  Let him decide he will live, and live well, every damn minute he gets.

Let him live like my big brother.

Let him be my hero, my inspiration.

Today I'm boarding a plane to fly up to Minnesota.

We are going to carry out Aaron's request to lay his ashes in the river where we grew up playing.

This weekend will be a different kind of hard.  My emotional stuntedness had me numb at his funeral.  More concerned about how everyone else was feeling than about my own heart breaking under my ribs.

But now, 9 months after he died, I feel it everyday.

There aren't many songs I can listen to that don't make me think of him, mostly because I know he'd hate them.  I hold my breath when it hurts and have to remind myself to exhale.  That it's OK.

I'm glad that I got to look up to Aaron for 32 years.  That he led the way.  I miss him every second.

And I want to live like him.


Rachel Mitchell said...

That was an incredibly hard (read - emotional) post to read, I can't even imagine writing it.

I'll be thinking about you and your family this weekend.

Bookworm Mom said...

I know each story is different just like each person. However I wanted to give you a bit of hope. My friend's husband had the same prognosis and heart condition. He is 45 and feeling good still. Yes he has some really bad days, months etc.. but he is alive and beating the odds. So that is some hope that Gabe will following the same path.


Jessica said...

So touched by all of this. I want to say that any of us could have a shorter time than expected, but I know that doesn't take away the feeling of knowing. Of being given a definitive number. I won't even pretend to think that I can relate to that in any way. I think we should all be so lucky to "live like Aaron." Thank you for sharing. Sending positive vibes your way. xoxo

Sweet Tea said...

If I remember right, this prognosis is so much better than some he's gotten in the past. Right?
Love to Gabe and may God strengthen and sustain you as you honor your brothers wishes. What a guy!

Beth said...

Nicole this post is beautiful and heartbreaking all at the same time! Praying Gabe does blow 30 out of the water! And praying that we all live fearlessly like your brother. And I love the line of you thinking of him every song you hear because he would hate them. LOL!! That is too funny!!

Mrs. Hall said...

just wanted to say how touched I am by this post. lovely, simply lovely!