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Cruel Summer

It’s that time of year again. Summertime means kids of all ages play baseball, swim and spend days running around carefree.

That’s not the case for my boys. It took me a long time to be OK with this. And even now, after I’ve come to terms with the fact that my boys won’t ever participate in typical activities, reminders still sting. And unfortunately, reminders come daily for the three brutal months of June, July and August.

Man, would I love for my boys to play baseball. I would love to watch them on the field, cheering them on from the bleachers. I’d be a bundle of excitement and nerves as they approached the plate, rearing the bat back and staring down the pitcher.

Unfortunately, that’s not our reality. I’ve spent many columns telling you about Nick’s many diagnoses that keep him in and out of the hospital. This time, I’m going to share some things about my son Ethan.

He’s 7 and he had brain surgery. A piece of his skull was removed and there’s a mesh patch in its place, so he can’t play sports with head injury risks — contact sports and anything involving balls are definitely prohibited.

It feels like such a letdown that he won’t experience the camaraderie of teammates, hitting a homerun or getting the honor of receiving the game ball.

I have three nephews, all near Ethan’s age. Two of them are playing summer T-ball this year. They love it, and they’re both excelling. I am so proud of them, but honestly, the thought of watching them play makes me anxious. Of course I’ll attend any games I can and cheer them on like the doting uncle I am, but inside, I’ll be swallowing that painful feeling that swells in my throat, knowing this developmental milestone will be something else Ethan has to miss.

Swimming, on the other hand, is something that Ethan can do. It looks a little different for him than other kids. He requires a lot of support and someone to monitor his vitals constantly. He has ichthyosis vulgaris, a genetic skin disorder that limits his sweating so he overheats quickly. Being outside for even a short amount of time means we bring the oxygen tank and extra water to potentially push through his gastronomy tube in the chance he overheats, gets dehydrated or has difficulty breathing, all of which happen quite a bit during the summer months. So we stay indoors as much as possible.

When we leave he house, we make sure we have everything on a multi-page checklist. Oxygen? Check. G-tube supplies? Check. Extra diapers? Check. Medications? Check. I’m exhausted before I even get out the door.

Then I stop thinking about my summertime blues and start thinking about Ethan. Would he even want to play baseball? Does he even like to swim?

I refocus on my blessings and all the things that Ethan can do. He can dance. He took a hip hop class this past spring; the recital was in May and he did great. He may not have always been in sync with the rest of the dancers, but he sure thinks he’s Justin Timberlake out there.

This summer, I will proudly watch Ethan do his thing on the dance floor and my nephews do their thing on the field.

I have to remember, it’s not about me. It’s about coming together as a family and accommodating him in anything he wants to do. Ethan doesn’t see his limitations so I shouldn’t either.