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A Day in the Life -- Parenting My Son With Disabilities

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After eight years, it feels like nothing has changed. Yet everything has changed.

My 8-year-old son Henry’s strong internal clock makes him, again, the first to wake this morning. My other two children, ages 10 and 6, are still sleeping.

I get Henry dressed and carry him, straddled on my waist, down the stairs to his wheelchair. Instead of getting him ready for his bus, I sit him in front of a laptop at the kitchen table and let him watch some TV before virtual summer school.

After I mix and pour his medication in his feeding tube and give him some breakfast (pureed pancakes), it’s time to get on a telehealth consult with a new doctor. I walk away for privacy and spend the first 30 minutes of the call explaining Henry’s medical history. A story that, in the past, forced me to sit and breathe slowly to get through. But the repetition over the years has numbed me to its intensity. I know how to weave in and out of the narrative, sharing only relevant facts I know the doctor wants.

After hanging up I schedule four more appointments before realizing how hard it’s been again. All month I have been explaining to friends how relieved I am that he has another diagnosis and new medication to help. But, how nice would it be if he just wasn’t dealing with any of these issues?

My other two children are finally up and run down the stairs.

“What do you guys want for breakfast?” I ask, guiltily hoping the answer is cereal because I’m already tired and emotionally drained.

While I’m prepping their breakfast, Henry’s physical therapist pops in the kitchen slider. We wave haphazardly. He’s been coming around twice a week for the past seven years. He scoops Henry up in between class and carries him away. I hear them laughing and bantering back and forth. I take a long deep breath, glad for the reprieve of having one child temporarily occupied.

Dishes cleaned up, I check my calendar, and am reminded that the permanent ramp we ordered will finally be arriving next week. I want to get my application into the relief fund as soon as possible so we are in the queue. If we qualify, it can take six months to a year to get reimbursed. This is my third application. I know the drill. I draft the necessary information and hit send.

I get up to clear my head and take a pulse on what my three children are up to. My 6-year-old is Facetiming with my mom.

“Hey, Mom!” I poke my head into the corner of the screen and wave.

“Morning, Honey. How was the call with the doctor?”

I shake my head in response, too tired to repeat the news of the morning. I briefly flash back to our early days in the NICU when the information was so overwhelming my head would spin. I quickly remind myself I’m not there anymore.

Later that day, I need to take Henry to the otolaryngologist (ENT) for a follow-up appointment. He hasn’t been back since getting ear tubes over three years ago, and one is dislodged. Our appointment runs smoothly, aside from the busyness of the office that I don’t expect during a pandemic, so we hide in the corner of the waiting room, keeping more than six feet of distance. Henry technically hasn’t been classified as high risk, but I’m not taking any chances.

We do a dance around a little girl about Henry’s age and her mom as we try to check out. I see the girl point a finger in our direction and ask her mom a question starting with the word “Why…” but I can’t hear the rest. I don’t need to hear it. I know the drill. The mom answers her softly, which quiets the girl. I know it’s a reasonable response. Something like, “Some people are different” or “He needs that because he can’t walk.” She doesn’t have the deer in headlights look many others do when the only thing they know how to say is “I don’t know” as they look around sheepish and embarrassed.

The mom passes us on her way out the door and smiles at me, her eyes crinkling above her mask. The repetition of this scenario over many years allows me to shed my feelings quickly. We head out the door, me chattering to Henry, a big grin on his face in response. We make a quick stop to have labs drawn, killing two birds with one stone.

Once back home, my other two children greet Henry with warm hugs and excitement. It’s now raining so we sit together on the family room floor, snuggled under a blanket. I make them start “The Lorax” over from the beginning. Ironically, I was playing the same music in the car, so Henry and I are already in the mood.

Henry sits on my lap and yells out a squeal of delight while I squeeze him, relishing his cuteness. He laughs at his brother’s silly antics and revels in his sister’s affection. We enjoy the rest of the evening in peace with dinner and family time.

Night soon arrives and it’s time to shuffles the kids upstairs to bed. But minutes before, Henry unexpectedly throws up. Something he hasn’t done in over two years, and only recently started again while we trial and error diet changes. I pause bedtime to clean up, and then carry on as usual with baths, storytime, and finally, lights out.

With the kids asleep, my husband and I relax for a few minutes and catch up. We turn on “Schitt’s Creek” for some laughs. I stay up later than I should.

A few minutes before I doze off, I get up to check on the kids one final time. I peer at Henry, soundly sleeping, his long eyelashes fluttering with dreams. And I know we will be OK.

Tomorrow is another day. We will take it as it comes. We will figure it out.

Originally published: February 21, 2021
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