There’s a whole lot of guilt involved in genetic conditions.  Sometimes there’s the guilt of passing down “bad” genes, but that isn’t always the case.  Sometimes it’s just a guilt of your kid has to deal with tough stuff and you can’t do much to make it better.   Thankfully, I’m much better at this than I was when Eddie was first diagnosed and a young child.   But I’m still working on it.

With Eddie having surgery in a week, he has nearly run me ragged trying to pack an 11 week summer break from school into 6 weeks.  And we’ve done a good job of it.  We’ve traveled to Florida for the NCAA Baseball Super Regionals that Wake Forest played in, he’s worked two weeks of Wake baseball camps, we celebrated his 16th birthday, he’s gotten his driver’s license, we’ve been to the movies, we’ve rented movies, he’s been swimming, he’s had several friends over to the house, and on and on and on.  It’s been a whirlwind.  Fun, but an exhausting whirlwind.

His dad and I have had a few conversations about his endless desire to go and his numerous requests to do.  As you can imagine, some of these requests now include driving a car with a friend and no parent to speak of.   Many times his requests begin with, “Since I’m having surgery soon and I’ll be healing for so long….” (The recovery period is 6 weeks for the breastbone to heal.  It takes around 2-3 months for most patients to feel 100% again.  No driving for 6 weeks.  )  So it is easy to understand his desire to buy the hottest new sneakers, or to spend every waking moment on adventures with friends, or to go to a water park, or to swim the English Channel, or to leap tall buildings in a single bound, or to hike Mt. Everest but those things aren’t always practical.  Plus, if he gets run down and sick, surgery is a problem.  So it’s hard as hell to tell him no.

But the reality is surgery or no surgery, I have an obligation to parent.  He will recover from heart surgery.  It may be several months, but he will recover.  However, he will never recover from being an ass if I teach him that when life is tough, the world will bend backwards to make you happy and accommodate you.  Because that just doesn’t happen.  It’s a balancing act of saying yes sometimes, but saying no when the situation requires it.   So we’ve had some battles and I envision a few more before he goes in to the hospital next week.  But it’s all good because even when we argue or frustrate each other, he knows I love him.  And that’s way more important than saying yes to any temporary request.


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