What I Need Now

When I was pregnant and distraught ten years ago, waiting for a tiny broken-hearted baby to break through my body and face surgery at best, death at worst, everyone in my life offered to do “whatever you need.”

Ironically, I needed nothing. I had a surge of adrenaline that coursed through my veins and made me stronger than I ever thought I could be.  I was like the mother who lifts a truck off her underpinned child.  I needed space and time to get to a place before I could know what I could possibly need.

HPIM0326Now, a decade later I know exactly what I need.  In the past ten years I’ve met in person hundreds of families facing CHD and online thousands of them.  I’ve helped build forts on the frontiers of the Heartland.  I know the corners and crevices of both the anatomical and the philosophical heart. But for my family and closest friends, I’ve journeyed for a decade sequestered in a nether-world of people who “get” what it’s like to live with CHD.

Now,  I need to break out of the cocoon. I know this because I get hundreds of Facebook posts every week from other heart moms asking for awareness about CHD. . . I could not be more aware.  We are so insular in our pain and struggles to understand the world to which we no longer belong that we cling to each other, and we wonder why no one seems to be aware of CHD.  We needed and need each other for emotional support, but we are useless to raise big dollars or to expand awareness beyond our circle of unbearable knowledge.

So, if over the years you were one of the people who asked me, “What can we do?” or “Anything I can do to help,” and I just smiled meekly and said, “No, not really.”  Now I have something you can do.

I need you – you people whose kids are NOT sick, whose friends who aren’t me have no clue about congenital heart disease, whose lives are blessedly normal – to share the word.  It means more coming from you to those who don’t know.  While we’re burning bright, the light is not passing beyond our sorrowful bonfire.


So, what I need is for you to take my spark and you who are not heart moms, to tell Liam’s story in your own words to those who don’t know me or him or anything about the world’s most common and most deadly birth defect.  I need you to talk about me behind my back, because the rumor and the truth about CHD needs to move beyond my large circle of suffering friends and into the world of those who don’t know.  That is true awareness.

Can I convert you? Will you help me all these years later when I know what I need? Does your offer still stand? God bless us all, I hope that you meant it and will spread the fire in February.

With love,



  1. Absolutely every person needs to know your story, my Granddaughter, Kimber’s story, and every one of our courageous Warriors stories! For without the stories, the advances would not happen and the agony of survival and loss would be unteniable.

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