"I don't know how you do it"

well, I don't really have a choice

Yesterday was a rollercoaster of a day for me.

The web3 project I’ve been working on launched the presale for our NFT project. It was very exciting and went extremely well, but it was also exhausting. By the way, check out our awesome new website here and subscribe to our newsletter here.

My family was supposed to go on a trip to my wife’s parent’s cabin, leaving me on my own at home with plenty of time to focus on my work. But instead, my three-year-old daughter Em got sick. Somehow. Thankfully it’s not COVID. We don’t really go anywhere since she has a history of respiratory issues, so we have no idea where it came from.

So they stayed home and I had to juggle both work and my family while feeling like I was neglecting both. It was not a fun feeling.

This is a long way of me saying that I didn’t have time to get a full-fledged piece ready for today.

Em being sick reminded me of a snippet I wrote back in the summer, which I liked, but could never really find a place for it. It was part of a writing exercise I did where the goal was to mimic another writer. In this case, I was emulating a massive paragraph written by Dave Eggers in his book A Heartbreaking Work of Staggering Genius.

I hope you enjoy it.

---

Photo by USGS

“I don’t know how you do it.”

It’s a phrase I’ve heard countless times since Em was born nearly four years ago. Frankly, I’m a little tired of hearing it. But I also understand why people go there. I get how they can’t comprehend what’s it’s like to watch your daughter nearly die at birth—and two other times during her first week of life. And it’s hard for most people to comprehend what it feels like to have a child with a disability like cerebral palsy.

The truth is, I don’t really have a choice. When you have a child with a disability, you just need to figure things out—sometimes out of desperation.

I’ve written before about how there is universality in the specifics when it comes to writing personal stories. So I thought what better way to show it than to get incredibly specific on a single item we sometimes use at home with Em. It’s one small example of how even the smallest things can be wildly different when you have a child with a disability.

When Em starts retching, I hurry to help her. She can’t be flat on her back, so I roll her on her side to prevent fluid from blocking her airway and choking her. She will usually spit up some clear saliva or foamy milk or yellow-ish stomach contents. Since she had surgery to tighten up her esophagus, it’s usually not a large amount of fluid. But it doesn’t take much for her to have trouble breathing. The important thing is to get the fluids out of her mouth, which usually means reaching into her mouth with something wrapped around my fingers to try to physically remove the slimy fluids. We’ve tried a suction machine, like a portable version of the one dentists use, but the suction is too intense for her. Tissues break down easily and she ends up with tiny bits of paper in her mouth. Paper towels are too scratchy. Have you ever tried blowing your nose with a paper towel? No thanks. Regular towels or washcloths are too thick to shove into her mouth. Same with cloth diapers. Allison sometimes uses the neck of Em’s shirt or onesie, but now a bunch of them are stretched out. But then, one day, I saw Allison use one of Em’s receiving blankets and I realized they’re perfect. They’re thin, but not too thin, meaning they’re not quite opaque and you can sort of see through them, so they’re absorbent enough to get the job done and thin enough to hold around your fingers while you reach in her mouth to relieve her of her excess secretions. They’re also great because we have an abundance of them and they can be washed when they inevitably get crusty as the fluids on them dry out. So I took two of them and cut them up into small rectangles, maybe four by five inches or so, and now we have something like thirty of them in rotation. Necessity is the mother of invention, or so I’ve heard.

---

Thanks for being here. I hope you enjoyed this short one.

If you liked this piece, could you please click the heart button to let me know?