CHD's

I belong to a few heart groups on facebook and babycenter.  These groups/communities have really helped me learn about CHD's and Heterotaxy.  I feel like I have an over abundance of knowledge about the heart.  I was never good at biology and anatomy, nor did I really care how the body functioned.  But when you have a child with heart issues, defects and different anomalies, its amazing how quickly you become interested in knowing every detail on how the heart works, where the oxygen flows to, what veins go to what chamber, why the spleen is needed, etc.   And the amount of support you get from other mothers/parents going through a similar situation, is truly amazing.  You really feel an instant connection because you know the emotions they are, too, going through.

I came across this poem today, and of course teared up, but it really hit home.

It can happen during utero,
Or sometime after birth.
The news that makes you tremble,
The news that shakes the earth.

"we hear a distinct murmur ma'am,
There's an issue with the heart
We're not sure your child's chances ma'am,
It's going to be a rough start"

You think "why me? Why us?"
As you try to choke back tears
Your world crashing around you,
While you're consumed by your worst fears.

That sharp pain in your chest.
The heart break, like a knife.
Watching your precious child
Fight so hard for their life.

The first few months are brutal,
You walk around like a zombie.
Endlessly wondering
"will my baby get to call me mommy?"

"don't worry, it will get better"
Is something you can't stand to hear.
It feels like everything is getting worse!
The end, it feels so near.

Then suddenly the days,
Seem to get a little brighter.
As you stare with loving eyes
At your precious little fighter.

You've never been so proud
Of one single little soul,
Gradually reaching milestones
And accomplishing their goals.

A heart moms journey
Is one that never ends.
Filled with support and compassion,
Of other heart mom friends.

We all love a little deeper,
And care a little more.
Reminding ourselves everyday,
Of how much we can be thankful for.

We were given this life for a reason,
And at times it can get rough.
But we use our kids as examples,
Of how to remain tough.

For us, strength is not a choice.
It's a lifestyle we have to lead.
It's what keeps us going,
And it's what our heart child needs.

There are a few of Zoe's Heterotaxy buddies at Boston's Children's Hospital undergoing surgery this week, Ryker Warner and Logan Spyker.  They also have facebook groups (Miracle Ryker and Heterotaxy Syndrome - Logan Spyker).  If you wouldn't mind saying some extra prayers for these kids,  Zoe, and the rest of her buddies would appreciate it.