A Tough But Necessary Lesson

When you have a child that deals with a serious medical condition and his father also deals with a serious medical condition, that child learns lessons well beyond his years.  The life of a rare medical condition is ….. well….rare.

My child has learned what it’s like to be under anesthesia….many times.  My child has learned what it is like to work twice as hard at school work to catch up for the days he has been absent due to surgeries or medical appointments.  My child knows how to maneuver his way through a few hospitals very well … at least well enough to find every vending machine, coffee shop, and cafeteria on the premises.  My child knows what it feels like to be left out of birthday parties and athletic teams.  My child knows what his heart rate and blood pressure should be.  He also can tell you within millimeters of the exact measurement of his aortic aneurysm.  My child can tell you the name of a world-renowned cardiologist.  My child can give you a pretty good explanation of how genetics works without going into Punnett squares.  My child can explain to you how it feels to have MRIs and CT scans.  My child can also explain to you the term arterial tortuosity because he has it.  My child can explain how it feels to have to talk to your dad on the phone because he is in a hospital two hours away recovering from heart surgery.  My child can also explain dreading the dentist because every single time you go it’s just more bad news.  My child can explain what it’s like to recover from a surgery that basically rebuilds your eardrum.  My child knows things that I can only understand by proxy.

But you know what my child has yet to really learn?  How to tell your best friend goodbye.  That was today’s lesson.  And it is gut wrenching.

Three years ago Eddie was accepted into a nonprofit program called Team IMPACT.  I’ve mentioned it in my blog before.  This incredible program matches children with life-threatening and chronic illnesses with collegiate sports teams.  Eddie was the first child with Loeys-Dietz Syndrome matched.  He was also one of the first participants in North Carolina.  He was partnered with the baseball team at Wake Forest University.  Coincidentally, the father of one of the team’s players serves on Team IMPACT’s board of directors.  It was as if it were all meant to be.

Team members are chosen to be the student liaison ambassadors for the child.  It’s really their job to take the lead in building and nurturing the relationship between the child and the team.  Eddie’s ambassadors were Max and Christian.  However, Eddie built very special and strong relationships with several other team members.  Now, those guys have graduated.

We all knew this day would come, but it has always seemed so far away.  But here we are.  Graduation happened nearly a month ago and the season ended last week.  It’s time for goodbyes.

The team made the NCAA Regionals, but Eddie wasn’t able to go with them to Texas.  However, he did greet the bus as it returned to bring the team to their home stadium one last time.  There were pictures and hugs.  Eddie wrote personal letters to each of the graduating players and those who likely will not be returning because they will be drafted and begin careers as professional players.  He passed those out.  But there were two that he missed.  The bus arrived just ahead of him.  Two players, Christian and Aaron, not knowing he was coming to welcome them home, left.  They had to pack up to return home and begin careers as young professionals outside of North Carolina and what has to feel like an eternity away from Eddie.  And of course, these two players were the two he considered to be his best friends on the team.

Well, tonight, in the midst of finishing up preparing for their long trip home, they visited Eddie to say proper goodbyes.  Eddie gave his letters.  They left him with personalized gifts.  And then it was time.  Time to say goodbye.  As you can imagine, there were many many tears shed.  I can’t imagine.  Sports….it’s a world that Eddie loves so much and yet his body …. his condition won’t allow it.  His aorta is much too large and dangerous and potentially fragile to risk it.  But yet these guys have found a way to make him a teammate.  He is part of the brotherhood.  He is a Diamond Deac.

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