Tuesday, October 16, 2012

Reality Check

My thoughts will probably be scattered on this one, so bear with me.

I'm a member of an incredibly special support group on Facebook, called Heart Mamas.
Across the country and around the world, moms with babies of all kinds of congenital heart defects come together and exchange advice and support for each other.

Sometimes, inevitably, a child passes away. Learning that a heart family has lost their fight is always incredibly saddening.

Last night, a baby girl named Addison lost her fight with HLHS, the same condition Jonas has. She was 3 years old: The same age as Jonas.
She was healthy going into the third and final stage of the procedures that almost all HLHS kids undergo to repair their hearts to work at the best of their ability.
She had the Fontan procedure, (Which Jonas is still about a year away from)and it didn't take.

Within a very short period of time, she received a heart transplant. She was discharged to Ronald McDonald house and all was looking well, until she came down with a high fever and infection. Unfortunately, things quickly took a turn for the worse, and she passed away.

My heart aches for this family. Just when it seemed like things were looking up, they lost their precious little girl.

As I sit here in bed with Jonas, watching him snuggled up on my pillow (That's almost as big as he is)I can't help but be SO THANKFUL. And also afraid.
While it's true that any of us can go at any time, the threat for us is all too immediate and far too real.

This little girl's story hits so close to home, because we're not in the clear yet.
To be honest, we're never going to be. There is no permanent fix for HLHS.
All we can do is hope for the best, and cherish every moment in the meantime.

I can't live every day as though the end is near, but I must never take for granted how lucky I am to have the precious gift of this boy in my life.
I will love him with everything I have, and teach him to be the best he can be, for as much time as I am given with him.

In true 3-year-old fashion, he'll wiggle and squirm when I squeeze him too hard and kiss him more than he'd like. And I'll smile and laugh as he giggles and tries to run away, because these are the moments that matter most.


  1. I enjoy reading your stories about the journey that your family is taking regarding this matter. Thoughts are with you and I hope Jonas gets through future procedures successfully. :)