An illness in the family brings chaos to my daily routine

A gentle hand shook me awake.

The practice of “shaking me awake” originated with my caregiver, Danielle, who was accompanied by her 3-year-old daughter. Elena took it upon herself to wake me up. Every morning, a tiny little hand would touch my face, followed by a whispered warning. “Five,” she’d say, as in “five more minutes,” which my sleep-addled brain usually interpreted as “kill me now.”

Years later, my dad has continued the practice. Every morning, he shakes my leg until I indicate that I’ve heard him. Most days, I don’t even open my eyes, nodding silently or mumbling something along the lines of “’kay.”

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This morning was different, though, because the shaking wouldn’t stop. With an affronted groan, I opened my eyes to see my mom.

“Your dad isn’t feeling well, so I’m getting you up this morning.”

Just like that, I was awake. “Is he OK? Is it COVID?”

He hadn’t taken a test yet, but they were pretty sure it was dehydration — he had all the symptoms, from dizziness to nausea and fatigue. He had no fever, so we knew he wasn’t contagious, but he was still in no shape to get me out of bed.

Fortunately, my dad came down with COVID-19 a few months ago, so my mom and I weren’t at a complete loss. It didn’t take long for us to settle into a kind of rhythm.

Of course, nothing is that easy.

First it was my chair. After weeks of pain and tweaking, I’d finally adjusted to my new ride. I wouldn’t be driving marathons any time soon, but I could make it from one room to the next without hitting a wall, which was progress. But my mom was thrown by all the changes. Everything was different, from the controls to her ability to get me in the chair.

Then it was my meds. I recently started naturopathy, so I have a laundry list of new supplements. It’s so complicated that I printed a cheat sheet for my dad to reference. He eventually got the hang of it, but my mom was overwhelmed.

We made it through the first day, but nights are always the worst. When Dad is out for the count, Mom has to get up halfway through the night to help me into bed. By the time it’s all said and done, she’s too amped up to fall back asleep. She always seems to draw the short stick.

The second day went more smoothly, probably because it was the weekend. I settled in for another night of video games, with the understanding that I would call my mom when I was ready for bed.

Unsurprisingly, I lost track of time. It was 1 a.m. when I finally told my Google Home to call Mom.

It went straight to voicemail.

The wonder of Prozac is that I don’t immediately have a panic attack when things go wrong. Instead of worrying that Mom had died sometime between 9 p.m. and 1 a.m., I called again. And again. And again.

It wouldn’t be the first time she’d slept through a call. I knew that, eventually, she’d wake up, check the time, and come upstairs. But I decided to call my dad on the off chance he’d pick up. I spent the next 15 minutes alternating between phone numbers. By the 20th call, I gave up, resigning myself to a long night of “Leverage” reruns and “The Sims 4.”

Then I got a Facebook message from my dad: “R u good?”

A few minutes later, Mom came stumbling in, hair mussed and glasses askew.

“I called you 20 times,” I said as she fumbled with her frames. “It went straight to voicemail.”

Apparently, Dottie had been playing with her phone. Somehow, despite her lack of opposable thumbs, the cat had managed to activate airplane mode. Mom and I burst into laughter, the kind that comes with sleep deprivation and too much stress.

It’s always an adventure with the Albers, especially when one-third of the family is sick.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.