My Son Has A Serious Medical Condition, And This Is One Of The Hardest Parts

by Brett Grayson
Originally Published: 
A ginger boy with CLOVES syndrome in a blue-green checked shirt holding his hand over his ear and lo...

Thursday morning, 4:00 A.M.

We tiptoe into our four-year-old son, Matt’s room. We need to pick him up and transfer him asleep into the car.

“You do it. You’re better,” my wife, Lauren, whispers. This is not true. She always wins at Yeti in My Spaghetti. She just wants to be able to blame me later when he’s freaking out in the car.

Why 4:00A.M.? I’m a morning person. (I could not be less of a morning person. I should have been in a rock band.)

I carry him down the stairs and out the garage.

I strap him into his car seat. (Let’s give letter grades to appropriate car seat parenting. An “A” is appropriate for a car seat that doesn’t shift, a harness securely on, doors and windows locked, and a car started with heat or air conditioning before you put the child in. An “F” is appropriate when you haven’t done any of the items in “A” correctly and you run back into the house to retrieve your phone while the child sits in the car ready to be kidnapped. Note: Putting the child in a hot car during the summer, closing the door and walking around to your side, assuming that the eight seconds of no oxygen is no risk, might also warrant an “F.” Footnote to this footnote: I have done none of the acts which warrant an “F,” and only know of such behavior by parents based on reports of others’ mistakes.)

And we’re off. I drive because anytime Lauren drives on a highway for more than eleven consecutive minutes, she becomes narcoleptic.

I put Howard Stern on and I’m laughing at something inappropriate.

“Brett, turn it off.”

“He’s sleeping.”

“He still hears it.”

“I’m driving. I need to stay awake … fine, give me the snacks.”

“You don’t need snacks.”

I sigh. “This is how real addiction starts. Constantly being denied things by your loved ones.”

“Fine. Put Howard Stern back on. He’s going to need therapy anyway with us as his parents.”

Boston Children’s Hospital – waiting room, 7:30A.M.

I try not to stare at other kids. Some look totally normal. Others are much worse off than Matt. I can’t help but compare, and I can’t decide if seeing kids worse off than Matt provides me any relief.

Or why I’m even having these horrible thoughts at all.

Matt was born with CLOVES syndrome, a rare overgrowth disorder, in which his right arm and hand are oversized, his right foot is deformed, and he has port wine stains all over his body (red spots).

His veins are also affected, which is why we’re in Boston today for a full body MRI.

Radiology Department

A team of nine doctors and three medical students squeeze into an examining room. One doctor leads the discussion and explains Matt’s case.

Matt is too young to understand the situation, but he loves the attention. Forget Howard Stern. This is why he is going to need therapy.

They need to take his vitals. Lauren sits him on her lap and puts Paw Patrol on her phone. He’s well-behaved for the vitals, including the blood pressure: “It’s just an arm hug!”

But vitals are done and it’s time to take the phone from him. He has a meltdown. That’s the least of his problems, though. They need to put a mask over his face and put him to sleep for the MRI.

I leave. I can’t take it.

Waiting room

The test is three hours.

Lauren has brought a ton of stuff to do. She’s on the phone. She’s sending emails. Her computer is out. It’s how she deals with things.

I’m in the corner trying to sleep. I brought work too, but I’m feeling too bad for myself to do work.

I’m restless and take a walk. Children’s hospitals are a unique place. You feel important when you are there–like you are doing something meaningful today–but at the same time you feel very unimportant because you are so helpless to do anything, and are at the mercy of people who apparently have a better chance of helping your child than you do.

You feel terrible that you have to go there; but when you’re there feeling bad for yourself, you see kids who have it so much worse than your own, and that makes you feel lucky.

I see another father pacing around like me. We make eye contact. You feel a kinship to other parents, yet you’re hesitant to take that kinship past the walls of the hospital, because the last thing you want to do when you are outside of the hospital is be reminded that your kid spends some of the time in a hospital.

I walk by Lauren. “Relax,” Lauren tells me in the midst of the thirty-five things she is doing.

I can’t relax. I run through my checklist of vices:

– Another Xanax. I can’t, I’m driving home after this.

– It’s unlikely the hospital has a casino.

– Or alcohol.

I decide to go to the food court. “You want anything?” Lauren doesn’t hear me. She’s busy adding a Radiology section to the giant blue binder we have for Matt’s treatment. She’s not particularly organized in other parts of her life. But this book is immaculate. It’s her attempt to control what little she can over his condition.

One hour later

I have eaten 2,500 calories. I either eat nothing at all when I’m nervous, or an entire zebra. Today, I chose a zebra.

I’m trying to get lost in my phone, but my mind is running, a dangerous endeavor for me.

I want my kids to live in ignorant bliss for as long as possible. Death; hatred; pain; suffering. They’re going to learn eventually. And that’s okay. It’s part of life. In fact, I think I was sheltered for too long and wasn’t prepared to handle my mental health struggles that hit me in my 20s.

But when you’re four-years-old? That’s too young. You deserve at least ten years of complete innocence.

We’re doing all we can: withholding info; making it into a game; showering him with brownies after procedures. And at four, it’s still working. Barely.

Recovery room

We sit next to his bed. He’s sleeping peacefully.

Today was only tests; nothing invasive. But it certainly feels invasive. There’s an oxygen piece in his nose, an IV in his hand and a heart monitor.

I watch them wheel another child into the next curtain and it all becomes very real. I put my head on Lauren’s shoulder and we get emotional.

“You yell at him sometimes,” Lauren says.

“I treat him the same as Liz, like he’s normal.”

“But he’s not.”

The nurse is monitoring Matt’s vitals. “When your friends complain to you about flower decorations, do you just tell them to shut up?” I ask her.

She laughs. “Sometimes. But isn’t that what we all want? To be able to complain about nonsense?”

Matt wakes up. For someone who asks why every two minutes, he doesn’t ask why now for some reason. I don’t know if he’s too scared, too overwhelmed, or just too confused.

I’m glad he doesn’t ask. Because frankly, I don’t know why.

I fear that as he becomes more aware–when he realizes this isn’t normal. It’s his normal, but it’s not normal–that these trips are going to become even harder. Pancakes made in the shape of Mickey Mouse’s head won’t cut it anymore. Cheeto fingers aren’t going to bring a smile to his face forever.


We received the results the next day, and they aren’t great. There’s a vein in his leg that is concerning and could clot. He needs a procedure, where they go in through the groin and fix it.

There’s risk. It’s five hours under anesthesia. It’s surgery. And yet, I’m not nearly as concerned about the surgery as I am about how we are going to explain it to him.

That he doesn’t understand any of this is both the best and worst part of it. He hasn’t really suffered so far. We do the suffering for him.

But it feels like we’re keeping a big secret from him. And the more invasive the procedure, the harder it is to keep the secret from him. The closer we are to him doing the suffering. The closer we are to his innocence ending.

Thursday, 1:00 P.M.

As we begin our long drive home (with a stop for Mickey Mouse pancakes), I turn to Lauren. “What are we telling Liz?”

“The usual.” Our five-year-old daughter Liz will be envious that we spent all day with her brother. We will say we got stuck at Matt’s check-up at the doctor, leaving out the good parts (Mickey pancakes) and bad parts (everything else).

Liz’s innocence is still secure. One out of two isn’t bad.

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