How a mild cold can still create a chaotic night and morning

When the screams shake me from my slumber, there’s no option to hit snooze — not as a parent of a child with aromatic l-amino acid decarboxylase (AADC) deficiency. Even my wife, Judy, who once slept through anything, has long since abandoned that luxury.

Mornings are hectic for most families, but I’d argue they’re even more chaotic for parents of children with rare diseases or special needs. I’ve often written about our successes with schedules, teamwork, and planning. But sometimes, chaos is inevitable, and you just have to roll with it.

That was especially true last week when our daughter caught a mild cold. A few sneezes and a runny nose completely derailed our well-oiled morning routine.

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Rylae-Ann Poulin, center in the red shirt, sings and dances with her first-grade class during morning assembly. (Photo courtesy of Richard E. Poulin III)

Rylae-Ann had an action-packed weekend, and the excitement continued into Monday and Tuesday. Her first-grade class held an adorable school performance, and swimming classes started now that the hot season is here in Thailand, where we live.

We believe the excitement and activity left her vulnerable to the germs that float around school. By the end of the day on Wednesday, we heard the first sneezes and sniffles. As we tucked her into bed, we noticed she had a slight fever.

She fell asleep — but only briefly. A clogged nose and persistent cough kept waking her. Naturally, Judy and I couldn’t sleep, either.

At one point, a deep, phlegm-filled cough triggered vomiting. I bolted out of bed, managing to catch most of it with her pajamas before rushing her to the bathroom. After a quick cleanup and shower, we moved her to our bed.

Sleep was sporadic. When she wasn’t coughing, she was tossing, turning, and occasionally delivering surprise karate kicks.

Rylae-Ann fights a cold and tries to get some rest as her parents watch over her. (Photo by Richard E. Poulin III)

We must have slept at some point, because my phone’s sarcastic, upbeat jingle woke me. As much as I wanted to hit snooze, I knew I couldn’t.

Judy and I know our routine. I got Rylae-Ann up to use the bathroom and freshen up before handing her off to Judy. As I headed upstairs, I heard screams of protest from downstairs. I quickly combed my hair and rushed back.

Judy handed Rylae-Ann back to me, taking her well-deserved break. Since school was out of the question, I’d have to drive her to Judy’s parents before heading to work.

I didn’t feed her much — our drive would be long, and she was still groggy — but a small, sweet pastry kept her blood sugar stable. I placed an iPad in front of her to keep her entertained.

By then, Judy had made her way downstairs, packing the essentials. We used to have a hospital-ready bag, but ever since Rylae-Ann had gene therapy, the bag’s been replaced with a school backpack.

With everything packed, I carried Rylae-Ann to the car and buckled her in while Judy loaded the trunk. After a quick kiss goodbye, we each headed our separate ways — Judy to work, me to her grandparents’ house.

Thankfully, the car ride was smooth.

I arrived at her grandparents’ house in good time, but I knew the hand-off wouldn’t be easy. Though Rylae-Ann tells me goodbye every morning and reminds me to drive safely, a change in routine meant there would be tears. The lack of sleep and sickness would only worsen her mood.

I made the goodbye as painless as possible, making sure her bags were inside before blowing a kiss to my wailing daughter. Then, it was time to start my workday — though my mind would be on her all day.

Some days are hard. Chaos is just part of our lives, and there’s no use fighting it.

Even on difficult mornings, Judy and I know our roles. As a family, we’ve weathered countless storms, and I know we’ll handle whatever comes next — together.

Note: AADC News 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 AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.