The Reality of Parenting Through Illness

I knew something was wrong when Mikaela, my youngest, was still in bed. She is my early riser, so when she didn’t get up, I checked on her. One look at her and I picked up the phone and made the call.

Winter in New England means darkness, cold, snow—and illness. So many illnesses. This winter was no exception. The other day, I found myself at yet another doctor’s appointment.

Mikaela is the sturdiest, health-wise, of all my three children. She’s the one who sucked her thumb—a “thumb habit,” as her orthodontist called it—well into her elementary school years. She’s also the one who, as a toddler, may or may not have eaten French fries off the floor of a McDonald’s. No cup of Dunkin' Donuts coffee was safe around her—if she saw it, she took a swig, even if it belonged to a complete stranger.

I mention these things because I truly believe they contributed to her rock-solid immune system. She rarely, actually never, gets sick. But on this day, something was different. What began as a mild cold had turned into a fever, and she just wasn’t herself. Out of concern, I reached out to the pediatrician’s office.

I was direct:

“Mikaela has a sore throat, a headache, and this morning she spiked a fever of 102.5. She needs to be seen, and I would like her to be tested for flu, COVID, and strep throat.”

The office assistant hesitated briefly, then scheduled an appointment for later that afternoon. When I hung up the phone, I reflected on how sure and confident I had been in advocating for my child. That confidence didn’t come from nowhere—it came from years of experience advocating for my other daughter. The one who has a rare disease.

The Evolution of a Medical Advocate

Over the years, I’ve spent countless hours fighting for proper treatment, challenging doctors when necessary, and educating myself rather than blindly accepting recommendations. That experience has transformed me into a strong and informed advocate, not just for my rare kiddo but for all of my children.

There was a time when I didn’t feel this confident in medical settings. I remember sitting in a doctor’s office years ago, nodding along, hesitant to question decisions out of a fear of looking ignorant and ill-informed. But experience has taught me that medical professionals, while knowledgeable, don’t always have the full picture. And when it comes to my child, I do.

When we arrived at the doctor’s office, Mikaela was tested for everything I had requested, plus RSV and a urinary tract infection. I was fairly certain she didn’t have either—she hardly had a cough, and there were no symptoms of a UTI—but I didn’t argue. We went home and waited for the results.

An hour later, the doctor called. Mikaela had the flu. I expected the next step to be a prescription for Tamiflu, as she was within the window for the antiviral medication to be effective. But the doctor didn’t recommend it. Instead, she wanted the illness to run its course without intervention.

I disagreed.

Why should my daughter suffer longer than necessary if we could reduce the severity and duration of her illness? The doctor and I had a difference of opinion. She presented her reasons for not prescribing the antiviral, and I presented my reasons for wanting it. In the end, I picked up the prescription from the pharmacy, and Mikaela took her first dose that evening.

The Power of a Parent’s Voice

Advocating isn’t always easy. It can feel exhausting, lonely, and even frustrating when medical professionals push back. There have been moments when I have second-guessed myself, moments when I’ve wondered if I was being “too pushy.” But each time, I remind myself: if I don’t speak up, who will?

Had I not been seasoned by years of advocating for my rare child, this situation might have turned out differently. I might have simply accepted the initial recommendation without questioning it. But parenting a child with a rare disease has given me experience, confidence, and the ability to push for what is best for my children when necessary.

I have spent countless hours thinking about what my child’s diagnosis has taken from me and from our family. But there are also things we have gained.

We’ve learned to be present and appreciate the small moments. We’ve developed a knack for “making lemonade out of lemons” more often than not. And for me, I’ve gained the ability to advocate fiercely for my loved ones, by any means necessary.

These skills are hard-won, born from challenges I never expected to face. But they are also gifts, ones I carry with me, always.

To Every Parent Doubting Themselves

So Mama, if you ever doubt yourself in a medical setting, remember this:

You are The Expert in your child.

No one knows better than you the look on their face when they are not feeling quite right, the change in the sound of their voice when their asthma is flaring, the slowness with which they rise from a chair when their muscles are inflamed.

So speak up. Ask questions. Advocate.

You have more power than you think.