Tony Bennett UVA basketball

It is hard to watch your children do something that you know will hurt them, even if they love it more than anything in the world. It is hard to allow them the space to make their own choices, even if you know how those choices will turn out.

But a big part of parenting is doing just that. We spend so long believing that the hardest part of parenting is holding on.

Holding on to a newborn you are sure is going to slip from your clumsy hands. Holding on to your sanity as you fumble through the day on no sleep. Holding on to a spoon, slippery with mushy peas. Holding on to a toddler’s hand as they take wobbly steps. Holding on to art work and memories of misspoken words. Holding on until they are just a little older.

No, the hardest part isn’t holding on. It’s letting go. Letting go of their hand on the first day of school. Letting them make real mistakes. Letting them try. Letting them fall.

There is inherent tension between our instinct to protect our children from harm at all costs and our duty to let them learn how to make choices for themselves.

For us, that struggle invariably centers around the faulty DNA that, at best, causes physical limitations and, at worst, causes unbearable pain.

For us, the struggle culminates every year with a choice between their greatest dream and our worst nightmare – UVA Basketball camp.

UVA Basketball John Paul Jones

For several hours, the boys gleefully run up and down the courts at JPJ, shoot hoops with their idols, and get to be like all the other kids.

What euphoria that is. Not just for them, but for us.

But just like Cinderella’s coach turns back in to a pumpkin at the stroke of midnight, some time around noon on the first day, reality crashes down on them. On me.

They change shoes, they ice their feet, they pretend they’re fine even as I watch them limp down the court as the other boys streak past. I see their strained faces as they will themselves to ignore the excruciating pain and the inevitability of incapacitation.

And in those moments, I blink back my own tears and wonder whether I have made a mistake by letting go too soon.

They are the tears that burn. Not just my cheeks which are flushed from running between two practice courts, juggling three bags filled with shoes, bandages, surgical scissors, and gauze. They are the tears that burn deep inside with the memories of my own failed attempts to push the limits of what my body can do and the intimate knowledge of the consequences those choices bring.

It is hard to let go.

But we did. Partially because they have to learn for themselves what their limitations are. Partially because I wanted to believe, like they did, that this time might be different. That perhaps they, unlike me, could will themselves to do the impossible.

They couldn’t of course. But they never gave up trying.

Yes it is hard to let go. But sometimes the hardest things are the ones that make your heart bigger.

Like when Will won the award for Thankfulness, one of the program’s 5 Pillars.

Or when the coaches created a Perseverance award for Jack.

Or when the trainers and the players and the staff sat with them, supported them, and cheered for them, even as they hobbled down the court.

Or when Tony told them he was proud of their determination.

Or when Coach Sanchez gave them both piggyback rides to lunch and then took my keys and moved my car to the loading dock so we wouldn’t have to walk up the steps.


Or when we saw them struggle and fall and refuse to give up.

Yesterday they saw the coach of a top ten basketball program hold up a copy of The Giving Tree and tell 250 boys that the greatest happiness comes not from winning but from servanthood. From loving other people more than yourself.

Tony Bennett Giving Tree

Yesterday they were the beneficiaries of that love.

Yesterday they learned that bad things happen and beautiful things happen and sometimes they are one in the same.


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  1. Yes, this is our life right now, and forever.

    I grew up with EB simplex, and my youngest son has it also. At nine years old, he is extremely active, even though we both know that many of his activities will result in blisters that keep him out of action for a few days. Currently, he’s on a travel baseball team, and his coaches are aware of the situation. He also plays basketball and will try volleyball this year as well. He watches as his older brother plays football, a sport that would never work for him. He tried lacrosse a few years ago, and the elbow pads and gloves immediately caused blisters on his arms and hands.

    Growing up in Arkansas, I was on a swim team year round, because the chlorinated water was great for the healing process and, of course, the sport rarely caused blisters. My coach also carried me around the pool deck to save my feet from the hot concrete. I’ve tried to get my boys interested in swimming but, no such luck.

    I do have a question that I wonder if you’ve thought of, or know anything about: What happens in the event of a broken bone? Something that seems to be a right of passage for so many kids would be absolutely dramatic for a child with EB. A cast would be horrific. Have you ever heard of any type of alternative cast for kids with EB simplex who break an arm or a leg?

    1. Hi Michelle! Thanks so much for sharing your story! What shoes does your son wear? Do you have any tricks for staving off the inevitable? I haven’t been able to find a pair of athletic shoes that don’t give them blisters within a minute. So for the most part, they play in their Crocs.

      I too have tried to get my kids into swimming and they do it reluctantly but not with the fervor I had hoped for 🙂 As for the broken bones, I actually broke my arm when I was a kid and had a regular old cast. The doctors took care to put a lot of padding on the inside and for the most part I fared well. My youngest broke his wrist last summer and because it was a minor fracture, they chose to put him in a removable splint instead of a plaster cast and he did well in that. We could remove it if we needed to to cut blisters or get in the pool (phew).


      1. Well, we do a bit of trial and error with gym shoes, but right now the ones that work best are anything made of lightweight, breathable material (no leather or vinyl) and which are low-profile (meaning they do not come up very high on the ankle). He does have a pair of baseball cleats that cause blisters nearly every time he wears them in the summer. For fall-ball, when the weather cools down, it’s not so bad (we live in Chicago).

        I just ordered him a new pair of Nike Kids “Tanjun” (search for it on Zappos). These types of gym shoes work pretty well, but there definitely will be blisters the first few times he wears them. He gets very excited about a new pair of shoes, and very disappointed each time when he realizes he won’t be able to wear them every single day until after a breaking-in period of anywhere from a few days to a few weeks.

        The socks make a big difference, too. He would love to wear thicker, multicolored gym socks, but when the weather is warm those are definitely off limits mainly b/c they are just too warm, too bulky, too much. Mostly, he just wears ankle high, thin, moisture wicking, stay-dry socks. Again, it doesn’t prevent the blisters entirely, but it does help.

        When he has open blisters, we cover them with a dollop of Aquaphor so the socks don’t stick to the wound. And, in the summer, I try to get him to the pool as often as possible to let the chlorine do its magic. When the pool doesn’t work out, I put him in a lukewarm bath with about 1/4 cup of chlorine bleach. It helps to dry out the wound and also keep it clean.