I went to dinner with my heart friends last night. I sat amongst women as diverse as women can be. And realized - again - that despite our differences, I belong there.
The question exists whether a support group consisting of men and women who parent children with heart defects is beneficial. From the very moment a heart defect is diagnosed, we begin to fear death. Suddenly, this tiny, wriggling, little bundle of adorable has a beginning and the very real possibility of an end. And part of us dies inside. I call it Hope chiseled away.
Once, I sat beside a pregnant employee of my husband's at an after-hours party. She had recently come from her much-anticipated ultrasound appointment, where the baby's gender had been determined, the length of his legs measured, and his major organs assessed. To me, the mother of three at the time, two of which were born with serious heart defects, she breathed, "At least he doesn't have a hole in his heart!"
Maybe she got it. A little. That a hole in your heart - or half a heart - or a mess of a heart - is a big deal. There is relief when your baby is born healthy with 10 finger and 10 toes.
And there is anguish and fear when she is born with 10 fingers and 10 toes and a giant problem in the middle.
But I know for sure she didn't really get it.
We meet for Mom's Night Out because we understand that first piece of Hope being chiseled away by a diagnosis. The first time you begin to fear.
And we understand the next piece of Hope that breaks off when you give your baby to be mended. When you've realized you can't run from the fear of death. And you acknowledge that you can't fix this boo-boo with a kiss and a bandaid. Or the next boo-boo. Or the next. And the next.
Pieces fall off Hope.
We know that mothers fear for their children's safety - keeping them away from bad influences, guiding them toward good choices. Don't talk to strangers. Don't do drugs. Wear a seat belt. And sometimes, mothers fear death. Falling down stairs. Car accidents. Poisonous spiders.
But being the mother of four children - two with healthy hearts, and two with heart defects, I can tell you I do not fear for my red heads the way I fear for the blondes. I do not love one child more than another. I do not hesitate to love and encourage and discipline any given one. I lecture the same values of saving money and attending church and staying away from the bad guys and wearing your seat belt. I worry at times about their futures. But fearing death through a complication with the heart, this worry is constant.
Different women join our group for different reasons. But one stands above the rest. Fear. How to manage and handle the fear of losing that precious baby. And maybe we return to another meeting because mothers of older children - survivors - grace the meetings and we feel the return of a little lost Hope. Look how great she looks! See how they are handling normal issues - middle school drama and choosing college! That can be my baby. My baby can be normal!
And then a child dies. And the tiny flame of Hope rekindled dies with him.
To the outside world, to grieve another person's child the way a heart mom grieves for a heart child is foreign. We are asked if we are over it yet. We are encouraged to move on. "It's like any loss." But, the outside world may not understand that that child was ours. In a way that other friends' children are not. In a way that is not like just any loss. Because that child stood in the center of our Hope. And when God above called that baby home, He allowed another piece of our Hope to fall away.
It feels good to belong. We desire it our whole lives. To find a place to call home. A circle of friends. And though I would not choose to belong for the reasons that each of us do, yet here we are.