Today my friend Jan died.  She was forty-six years old and celebrated a birthday just a couple of weeks ago.  Now, she’s gone. Even before I had a child with severe CHD, I thought death was pervasive in my life, from my dad and friend Mary, to coworkers and former classmates.  I felt I knew more than my quota of loss.

Since becoming a heart mom it’s different.  There was a time when every death shook me and reminded me that this family could have been our family. Then my rational brain took hold and my heart listened – that loss is personal, it is theirs, and the only thing it has to do with us is that they are our friends and we love them. It is a portrait of their pain not a reflection of our future.

I’ve made that rational transition over and over again far more often than I would like, just to cope with the imminent waves of death that rock this ship. Jan is different in the way Steve, Joanie, George, and Leslie were different.  They were older and had adult lives, and now they’re gone. I leaned on them and in return offered them honesty, affection, and respect.  I was a heart mom, but I treated them like grownups, because they WERE grownups, three of them were older than me and the other two were not much younger than I was at the time of their passing.

Losing a child in the CHD world is crushing because the family must move forward without their child and discover the strength to begin again.  Losing an adult is different.  Jan’s parents died before she did, so this is not a loss they must bear.  But for all the other adults with CHD there are the people who don’t know them because of their CHD.  They are touched everyday by people who love their “Janness” or their “Georgeness,”

My son is getting older and more and more people love him for his laugh and fewer and fewer will know about his heart.  This is how it should be, Because, those these five amazing adults lost their CHD battles between the ages of 26 and 67, they were each SO much bigger than what killed them.  To all the heart moms and heart dads who knew or knew of Jan and grieve tonight, please remember your kids are her legacy too and the more they live on their own terms with their own sense of humor, the richer everyone’s life will be.  Thank you, Jan, for always making that perfectly clear, and making life richer for all of us who knew you’re perfect heart.

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