1.09.2013

All Together

When I first grasped what Gabe's heart condition really meant, I was scared.

My son only has half of his heart.

He is walking around, blue lipped but breathing, with a tiny little heart that's constantly working overtime to keep his body alive.


So many people don't get it.

And I understand that.  Heck, half the time I find myself pushing him harder then I should.  Forgetting that he actually, really can't walk as fast as me through the grocery store.

How can a child that looks so healthy, plays so hard, and laughs from so deep have a heart that is so, so sick?

I'm thankful.  So very thankful that he is doing well.

I'm ok having to retell the story of his heart, reminding those closest to us that he can't do the same things as other kids, because it means he's still thriving.

I've seen other kids with HLHS that aren't doing as well as Gabe is and it reminds me how lucky we are.  We aren't toting around oxygen tanks and he doesn't need a feeding tube.  Although he can't do it for long, he can dance a hot jig to the Electric Slide if the mood hits him just right.

Through all of this, I've been reminded of something I learned back when we were labeled infertile and toying with the few options that left us with.

This big world isn't quite as big as it seems.

And in our loneliest hours, when we are sure we are the only ones that could ever understand what is going through our hearts and minds, we are surrounded by people feeling the same way about the same things.


I love this blog.

It's given me an outlet to write and allowed me to keep my family up to date with the kids and helped me to spread the awesome side of adoption and more then anything, it's reminded me that I am not alone.

After my last post on Gabe's heart, where I shared a little on how we are seeking more options for him other then a heart transplant, I received so many emails from you all sharing your Heart Baby stories.

Some were sisters or uncles or grandparents to Heart Babies.  And some were from Heart Moms, just like me.  Sharing fears and odds and stories of survival.  You led me to blogs of other babies that had already had their heart transplants, were going on Make-A-Wish trips, or playing their first soccer game with a fully functioning donor heart beating away inside their tiny chests.


And there it was.

A spark of hope for Gabe's future.

And an overwhelming feeling that I've got this.

I am not the first mother that will have to hand her son over to a superhero in a white coat, trusting that they know what is best.

If and when that day comes, I will hand him over with a team of friends behind me.  Many that I've never met, but that love my sweet boy and are praying for the moment those big brown eyes open and he feels a healthy heart beat for the first time.

And until then, I will put my hand on his scar covered chest and feel that half of a heart beating, oh it's in there beating, and feel the sweet rhythm and remind him that we are not alone.

Thank you for sharing your stories with me.  It brings me peace when my mind starts to wander.

We head back in to see his cardiologist next week.  I'm praying for a good report and another 3 month pass before his next appointment.  As always, I'll keep you all updated.

9 comments:

The Edberg's said...

I am loving your blog more and more these days. You really have a nack for putting what it feels like to be a mom into inspiring words. Also, had to point out how much of a little man Gabe is looking like in these photos - no more Gabey baby! Continued blessings from MN!

Kelli said...

Those pictures of Gabe are precious! He does indeed look like a little man. We (your family/friends/blog-followers) are praying. We know that God shaped and molded you and Andrew to be parents, not just to any children, but to the specific ones He gave you. Thank you for sharing your journey with us.

Amber said...

I may not have a kid with half a heart to swap war stories with, but do know, you are not alone!!! I may not be able to offer up advice, but you always have an ear to listen or a shoulder to cry on when it gets to be too much. And your right, when it comes time to hand him over, I'll be right there beside you sleeping on a crappy pull out hospital couch or like I've already told you, Josie is welcomed to stay how ever long you need. I truly believe God would have never given him to you if you could not handle it. You've got this and though at times it may feel like it, you are never alone!!!

Cristi said...

I'm praying for you and for next week's cardiology appointment. I know that stress all too well. I know lots superheroes in white coats, and I'm thankful that the ones I handed Lauren over to wore pearls with their scrubs. What's a cardiac anesthesiologist without her pearls?

Kameron said...

I think blogging sets us up with such a wonderful netwprk of "friends" with all different experiences. It is nice to have people around you thathave walked in the path you will need to go down.

Tabitha said...

I did not see your last post but I'll go look at it now. I will be praying for your son's strength and for the rest of your family too! Always remember kids are stronger then we realize!!

Becca said...

I love this my friend. And I love being able to keep up to date on your sweet little boy and his beautiful special heart! :-)

Emma said...

He couldn't be in better hands. LOVE YOU ALL so so much!

Stefenie said...

Hug. Always here for you.