A Month of Hearts–Remembering Tess’s Heart Disease Diagnosis.

Today is the first day of the month of hearts!  It’s Valentine’s Day on February 14th, of course, but around these parts, we also celebrate February by telling the tale of our brave hearts (not just Tess and Gigi’s, but of the brave hearts of ALL our kids who love them), by talking a lot about Congenital Heart Disease and what it means to live with it.

Today many moms and dads of CHD warriors are sharing their stories of how their child was diagnosed, some at birth, some in utero.  That was not our experience, of course.  We knew when we set out to adopt Tess that she had CHD and that her road would be complex.  I did the very best I could to educate myself about the ‘maybes’ that would come for our sweet girl.  I read everything I could get my hands on.  I listened to it all.  I heard nothing.

That’s right.  Nothing.  I chose not to hear it.  I didn’t want it to be Tess’s truth.  Turns out though, it was.   One month after arriving home with Tess, we were told, by the hospital that we were hoping would provide her lifelong heart care, that she likely wouldn’t live to her tenth birthday unless we made a very difficult choice for her.   We were told that choice was not one that anyone would recommend, and that doing any sort of surgery on her that wouldn’t be offered. We were told that Hospice was our best option.  We were told to go home and enjoy as much time with her as we could, to offer her the best quality of life we were able to.

We chose not to listen to that answer.  We learned what it meant to research quality care, to look for larger centers with better outcomes.  We chose to drive our train to Boston, through CHOP, and then back to Milwaukee.

This is Tess today.  She now has a normal life expectancy.  She will likely never require another open heart surgery.

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Since I’m being totally honest, Tess’s diagnosis, and our subsequent journey, scared me off of adopting any child with complex CHD ever again.  We got our miracle.  We’re done, right?  Then the idea of Gigi came along, and Tess was SO absolutely certain Gigi belonged here, with us, that it didn’t matter what the future holds for Gigi’s heart.  Obviously Tess’s determination wasn’t the deciding factor in our choice to bring Gigi into our family, but Tess’s courage is contagious though.  Tess is beauty from the ashes.

This month, we honor all the kids whose families loved them as much as we love Tess, but whose babes just couldn’t fight anymore.  We honor the kids who don’t have any family at all, who may die never having given anyone the gift that Tess has given us.  We honor the fact that we CHOSE this, and that Tess’s faith has given us the courage to choose it again.

–FullPlateMom, who wants you to know that Tess’s condition may make her 1:100, but we know that there is no one else in the world quite like her.

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