There's a story in my heart

There's a story in my heart that wants to be set free.

Every day this week I've heard it wailing.

"Let me out," it said. "Let me live. Craft me into a masterpiece of words. Use me to show them that miracles occur, that lives can be changed, and that there is influence in everyone and power in Him."

"Yes!" I said to my little story. "I will find the words that can fill you with light. I will give you breath."

So each night after my loves were tucked sweetly in slumber, I embarked on a journey to share my heart's story. I was expecting a mid-day freeway, so easy and calm that you forget that rush-hour even exists. But all I found on my internal outings were roadblocks, mostly set-up between my heart and my mind and my fingertips; three places, it turns out, that need to be connected in order for stories to be told.

As I went to sleep each night, I agonized that another day was passing in a week that was to be filled with this story. But no words came. I played construction worker and tried to knock down those barriers. I played psychiatrist and tried to understand the plights of all parties involved. I played parasailer and tried to glide right over the top of those roadblocks. But my musings proved unsuccessful and that story didn't come. I made excuses, I felt ashamed, and mostly, I felt tired. In my final act of defiance and self-pity, I told that little story that it wasn't very important, that it didn't need to be told, and that no one really cared.

And oh, how that story wept within my heart at the thought of defeat.

But instead of giving up on me, that little story whispered, "I am different than I used to be. And that's ok. I am still filled with wonder and awe and praise, but I've added chapters of experience and pain. Success will be seen when you write my words, but so will the journey--heavy, ugly and sometimes devastating as it is. Write me as real as you can. I am not perfect, but I am beautiful, and they will understand."

And so, as unglamorous as it seems, this is the story that my heart wants me to tell:

Nineteen-months ago we were given a marvelous gift through the birth of our son, Everett Knight. His special little heart introduced us to a new family full of loved-ones with similar heroes in their lives. We had two successful surgeries in his first six months and we were all-consumed with keeping our baby safe and healthy. Our first Valentine's day with him was filled with novelty and gratitude and somehow sweet innocence of the heart world we had just entered.

A lot has happened this year. Along with some beautiful CHD successes, we have known heartache and death and have faced many-a-cruel reality about the life of someone with congenital heart disease. It's a scary place to live, this heart world, and I know now that we will permanently reside in it's quarters. We are constantly watching Evie for signs that his heart is tiring, we lost a baby who had a severe heart defect, and a few of our dear heart friends have gained their angel wings. So it doesn't surprise me that roadblocks have been placed between that heart and mind and those fingers of mine--they are there to protect me.  My second Valentine's day with Everett will be filled with quiet respect for this disease and hope for a future where families don't mourn their heart babies.

Because the reality is that CHD is the most common and deadly birth defect (40,000 infants a year are diagnosed, 15 percent will not make it to 18-years-old), and hundreds more die before being diagnosed. Even if you know no one who has ever been affected by heart disease, how can you not gasp at numbers like those?

This is my world, those numbers are my family, and this is my voice: If the stories of my past (like this one and this one) teach us anything, it's that we can be an advocate for our baby. We can know the signs of CHD, and we can demand that our babies are screened (quick and painlessly) with a pulse ox.  CHD might not be going anywhere anytime soon, but to help even one more mother save one more baby because she know's what to look for--now that would make living in the heart world worthwhile. I don't want you to have to join our world, but if it surprises you like it did me, I want you to be ready!

I pray that during next year's CHD Awareness week hope and happiness will be bursting from my posts; but if not, I will still tell the story within my heart. Because even as I sit here and the last few words glide out of my fingertips, my heart feels relieved. And I don't know for sure, but I think I just heard the words, "Thank you."