Matters of the Heart

My friend Katie told me that Jackson was going to be our teacher in matters of the heart.  I thought it was cute, but didn't fully understand what she meant by that.  But, I am starting to.  Having Jackson has introduced me to a world of heart kids, and CHARGE kids.  Worlds I never knew existed.  Worlds I suppose I never really wanted to know existed.  But, now I find myself totally submerged.   And whenever one of these kids is sick, or worse, I find myself unable to walk away.  I post and ask for prayers.  I post facts and details and statistics.  I berate my family and friends with requests to wear red in February for Congenital Heart Defects.  And when a child passes away, I feel a small chuck of my heart break off.  It could just as easily have been Jackson, or even Mason, and that terrifies me.  I wake in the middle of the night to check on my kids.  I stand over them to make sure I see their chest rise and fall, rise and fall.  I place my hand over their mouth until I feel their warm breath on my fingers.  And then I crawl back into bed, one ear always listening to their monitors, and I sleep for a few hours and then I get up and do it again.

Having Jackson has given me a voice, to shout from the mountain tops, to anyone and everyone who will listen to me.  I educate that 1 in 100 children are born with a Congenital Heart Defect.  I inform that twice as many children die of heart defects as all forms of childhood cancer combined.  I report that more than half of children born with a Congenital Heart Defect will require at least one massive surgery in their lives.  My sweet Jackson has already had two in his short fifteen months here on earth.

And while it is easy to focus on the negative outcomes, and the losses, I also try to celebrate when there is a win.  When a child is finally approved for cochlear implant surgery that will enable them to hear for the first time in their lives.  When a baby is rolled in for life saving heart surgery, given little chance to survive, and comes out thriving better than anyone hoped or dared to dream.  When a child receives a long awaited and precious gift of an organ donation.

I am humbled to have given birth to such a teacher in these matters of the heart.  I hope that my stories, good bad or otherwise, have opened your eyes to the world around you.  I pray that the lessons you have learned have taught you to hug those you love.  Tell them every single day that they mean the world to you.  Put away your phones and your tablets when you are gathered around the table for a meal.  Play hooky from work, take your kids out of school for the afternoon, and just go run wild at the park, laughing and playing and truly enjoying one another.  Time is a precious commodity.  Spend it with the people who mean the most to you, being present and appreciative and kind.