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.

Wednesday, October 3, 2012

Miami Children's Hospital 5k

On Saturday, September 29th, I scooped a sleeping Jonas from his bed in the early morning hours. We had a long drive to Coral Gables for the Miami Children's Hospital 5k Walk/Run. 10 of us became "Team Jonas" for the day, raising over $600 for the hospital and taking on the 3.1 mile challenge.

For some of my friends, this was their first 5k. They made the effort to register and participate because they love my little boy that much.
For others on the team, they reached their personal best time.

Jonas and I took the path at a medium pace. I pushed his stroller and chatted with Joel, who decided to stay with us for most of the walk. I wasn't trying to break any records. I don't have a jogging stroller, and I've been advised not to put too much strain on my already less-than-whole kneecap.

Jonas was a trooper, never once protesting about the long walk. He enjoyed taking in the pretty trees and sprawling houses in the neighborhood. He'd ask where some of our faster friends were, and I'd answer that we'd see them at the end of the race.

We arrived at the finish line at 1 hour plus a few seconds. As soon as we finished, officials were organizing the first wave of the Kids' Race. Kristina and I left Joel with Jonas's stroller and walked him over to the "Start Line".

We each held one of his hands, feeling the excitement radiate from my sweet boy as he ran as fast as any child with a whole heart. He was running carefree, full of joy, and so much of this was because he was treated with such skill and heart by the professionals at the hospital we were running for.

Jonas crossed the Finish, and a little girl was waiting with a medal that seemed to weigh as much as he does! He was so proud, he talked about racing for the rest of the day.

We stayed for an hour or so after the race, chatting with our team members to see how their run went. Jonas played on the inflatable playground and bounce house until we had to coerce him out because they were packing up for the day.

The event was sponsored by the radio station Luis works for, so we spent some time at their booth as well.

It was a great day surrounded by friends and love!