When an Illness is More

After the holidays are over and as the new year begins, I find myself filled with hope.

Looking forward to new goals and plans, I’m excited for a fresh start.

On the contrary, every year’s beginning also hits with the same suffocating feeling of anxiety.

Flu season is in full swing. RSV is rampant.

As my daughter's winter break from school ends, anxiety shifts to full-on panicked dread.

How can I send my child with complex medical needs back to school now? Why would I put her at risk during a viral explosion?

Recently, I was talking to a healthcare professional about my worries over this year’s flu season.

She made a point that helped me realize that my fretting is not overexaggerated.

She reminded me that when most children experience an illness, while it can be scary, it’s typically not a dire situation.

Hearing one simple sentence made all my self-doubt disappear. “For your child, it’s more than an inconvenience.”

Time missed from work and school is not ideal for any family, but usually, viruses wrap up quickly without lasting effects. She was right. It’s more than an inconvenience for us.

So much more.

For my daughter, an illness is:

Fever that can’t be treated with Ibuprofen because of her kidney issues.

Seizures. A high body temperature always sets off a neurological storm. They bring trauma and an uproar of chaotic terror.

Regression. Seizures often send her back several steps in progress.

For us, an illness is me sleeping on her bedroom floor, with one eye open, listening to every breath she takes. It’s instinctively jumping up to look at her, each time she moves.

Constantly checking her heart rate and oxygen saturation with a pulse oximeter.

Forcing her to endure endless suctioning because she can’t cough productively or blow her nose.

Having a hospital bag packed and ready to go, just in case. It’s being prepared to seek emergency help, calling an ambulance if needed.

It’s watching my perpetually joyful girl suffer silently, without the ability to tell us what hurts.

She rarely recovers from infections swiftly; it always takes her body longer to recuperate. We’re left in a state of survival mode until she’s well again.

When an illness strikes, there’s just more for us to fear.

This season, I know I’ll feel some guilt over keeping her home from school. She loves being there and she’ll miss weeks of positive social interaction. It’s still the right call. Being as proactive as possible to protect my vulnerable girl takes precedence over everything else.