Running for fun...

getting ready for the fun run

At Duke's 1000th Heart Transplant Celebration--Heath was #763.  It was a really special day to meet so many other transplant patients.  AND, we broke the Guiness Book WR for most transplant patients in one place!

“Go run down to the top of the trail to warm up,” is what I heard as I walked in a little late to my boot camp class this morning.  I ran down the sidewalk next to the YMCA and then started through the tunnel of pine trees—all the memories came flooding in and I was glad that I had been late and was running completely by myself.  You see, we lived right there for our first 6 months in Durham.  Once Heath was out of the hospital and able to be outside, we walked that pathway every day on our way to the playground at the Y.  Sometimes we walked it late at night with Zeke (our previous dog) when we needed to clear our heads from the stresses of the day.  And today, I was running that same path by myself as my sweet boy was RUNNING in the boosterthon fun run at his school.  What a difference 6 years makes.  6 years ago TODAY, Nov. 6, our lives turned upside down when the pediatrician “heard something a little funny…” at Heath’s 9-month well-check.  I was in Black Mountain with EB meeting our buddy Mason for the first time when Chris called and said, “You need to come home right now.  We need to go to the hospital.  Something is wrong with Heath’s heart…” We learned that life changes in an instant.

halloween 2014

The medicine changes that we made (mentioned in my last blog post from Dec. 2013—wow, I haven’t written in a LONG time) took a few months and many blood draws to iron out.  BUT, it appears that the doctors have found the right combination for Heath—at least for now.  Heath’s levels got to the right spots, and his liver numbers went back down (not perfect, but MUCH better).  Then, in August he had his annual heart catheterization and he had a 0 REJECTION LEVEL.  He hadn’t had that 0 in at least 2 years!    With the medicine changes also came an unbelievable change in energy level —for the better.  We had really worried about Heath being able to stay all day when he entered  first grade in August, but it hasn’t been a problem so far.  He still has some OT issues with his writing, but he has almost completely caught up with his grade level already, and he LOVES school.  He pretty much loves everything about it.  And his enthusiasm is infectious. In fact, we are starting to think that he might make an excellent school mascot in college.  If you have spent any time with him, can’t you see it?? 

Most people look at you like you are a bit crazy when you tell them this part of our family story.  You wouldn’t know what he had been through by looking at him.  Of course, it will always be there—immuno suppression, tests, meds, chances of needing another transplant—but right now we’ll just relish being in a good place.

Quite a few people in our lives have endured some really hard things since this past spring—the sudden death of my childhood friend/framily (who has 2 beautiful young children) is still unfathomable, our sweet Olivia (Heath’s PICU roommate in 2008) going back on the transplant list, our new friends’ loss of their 6-month-old baby at Duke a few weeks ago, others' family crises.  Each time I find myself racked with tears and feeling the weight of the loss and worry.  But then I try to remind myself that we’ve also seen some good things—birth of my niece, celebrations of life work and retirement, laughs at our crazy toddler (who is really going to give us a run for our money, in case you were wondering), family fun, hearing tales of friends bringing their newest child home from China today.   We have the great privilege to sit with people in their worst moments in life but also in some of their best.  In ministry we perhaps get to do that even more than most, but I believe that all of us get to do that at points in our lives.  we just have to be present—and to figure out how to try find a light of hope in the darkest moments.

UNC hospital right after diagnosis on Nov. 7, 2008

As we hit this month or so of “anniversaries” every year, I have many different feelings.  I often feel tears welling up as I am reminded of the more vivid parts of the wild journey we’ve been on so far.  Today, however, I breathed in the autumn air in the pine tree tunnel and found myself smiling.  I somehow felt a little free. And then I went and watched a bunch of really excited children run around in circles to raise money for their school.   Just another day in "paradise," I suppose, and I’ll take it.

first day of 1st grade and 3rd grade!