I’m wearing red.

Hi buddy,

It’s Mama.

This morning you and sister were in the living room.  She pulled out her little Vtech tablet and started playing music.

The song “Friday” blared and squeals – both from you and her – filled our home.

You looked back at me.  You’re pudgy, sticky hands grasping the couch to keep your balance.

Your lopsided smile stretched from ear to ear.  Your little legs moved up and down in rhythm to the music.

Sister giggled and exclaimed, “Look Mama!  He’s shaking his bobo! He’s so silly!”

Then, she quickly gave you a kiss on your forehead.  And that little gesture sent giggles through your body.

I’ll capture that moment in my mind forever.  It will be tucked away in the safe place of my mind marked, “Evan.”

That little space in my mind is growing bigger everyday.  I can’t wait to fill that box with more memories of smiles and laughter.

I can’t lie to you, son. There are other memories in there that aren’t as cheerful.

In that space I have images of me and Daddy hearing about your special heart when you were still safe in my tummy.

In that space I have images of our first moments together…brief…before you were whisked away to be poked and prodded.

I have memories of every I.V. stick, every blood draw.

Burned into my mind forever are images of you before and after your heart surgeries.

I can’t erase the moments I see in my head when we heard that your heart would not be fully repaired.  I can’t move those images when Daddy was holding me and I was sobbing into his chest just pleading to God, “Please.  Just let his heart beat again.”

I can’t.  And honestly….I don’t want to.

Sweet boy.  Know that if I could, I would give you the best, most perfect heart out there. I would gladly lay on the operating table with each cut the surgeon makes.  I would happily be poked a million and one times – just so I can take your place.

But, I can’t.

I don’t know why you have to go through all of this.  I don’t know why you and your other heart buddies have to endure the greatest pains when your bodies are still so little.

I don’t know why other mamas and daddies have to watch their littles endure the pain you’ve been through.

And you, like your other heart buddies, have to carry this burden forever.

I’ve stopped asking those questions.  Those questions don’t help change much at all.

Today.

Today, I’m wearing for red for you.

I’m wearing red because in this small gesture, I’m showing the world that I know someone – how lucky am I – to know YOU – that is still here battling Congenital Heart Disease.

I’m wearing red because instead of asking the “why’s” of your heart, I’m going to start asking the “What’s and the How’s.”

What can I do to help spread awareness of this awful disease?

How do I make people understand that congenital heart disease is just as serious and just as awful as any cancer?

It’s a small thing.  Wearing red.  But maybe it will spark a conversation about CHD.  Maybe it will encourage a new mother to ask for a pulse oximeter test when her sweet baby is born.  Maybe it will tug at someone’s heart strings to donate their money to a cause that is sorely lacking funds. Maybe there will be a cure in your lifetime.

Maybe….the maybe’s are what’s getting me through this journey.

The maybe’s are my hope. My hope for you and for all the others with special hearts.

Today.  I wear red for you because I’m holding onto hope.

I’ll wear red every 1st of February forever.  Because, that’s the hope I have.  That I get forever with you.

I love you, buddy.

So proud to be your, Mama.

Gabe, 18 months, Total Anomalous Pulmonary Venous Return

Caleb, 2 1/2 yrs, Hypoplastic Left Heart Syndrome

Klara, 10 months, Tetralogy of Fallot, Pulmonary Atresia

Zoe, 2 1/2 yrs, Hypoplastic Left Heart Syndrome

 

Comments

  1. Heart Momma, your words are amazing. I am a Heart Grandma. My little buddy, Hunter was born May 16, 2011. He was diagnosed 18 hours old with HLHS. I understand your feelings. Today, I am wearing RED, almost my whole office is wearing RED, anything to help spread the word!! Thank you!