It’s been a year now since we learned Callie has spinal muscular atrophy. That day is still strong in my memory so I decided to write about it.

Callie had just turned 1 and I struggled to keep her wispy hair in place while we waited in the doctor’s office.

A medical assistant came out to greet us. She gave Callie a big smile and said the doctor was ready for us. We followed in her cheerful wake and stepped into the designated room.

Callie’s 1-year portrait

The doctor came in right away and explained how the test was done. Its simplicity made me nervous. I had come to this appointment alone, thinking this was a routine test and we would get the results later.

I realized that I would know Callie’s diagnosis in a few minutes. I needed my husband, but I had told him it was a simple test so he may as well stay at work.

The doctor began by delivering electric shocks to Callie’s foot. She cried a little, but seemed unfazed overall. The diagnoses narrowed.

Then came the painful part: a needle-stick into Callie’s thigh muscle. The test didn’t work because Callie wasn’t capable of moving that part of her leg. So the doctor stuck her again in her lower leg.

I clung to her, trying to console her as the doctor called out orders so the assistant could hear him above Callie’s screams and the crackling whir of the machine.

Then the doctor quietly said, “OK.”

His shoulders slumped as he turned off the machine and waited for me to comfort Callie.

Sorrow thickened the air. It was what we suspected. I stared at my daughter, her large brown eyes framed with long wet lashes. I cried softly as I held her head against my own. I didn’t ask many questions.

The assistant offered to help us to the car. When we reached the front office, I told her I could make it to the car alone. My tears gave way to weeping as I walked out, still cradling Callie.

My legs trembled and I made a conscious effort not to fall under the weight of grief. I found myself repeatedly sobbing the words “I’m so sorry” to Callie.

She looked at me, knowing she should be upset but not knowing why.

My hands shook as I strapped Callie into her car seat. I pulled myself into the car, shut the door and reached for my phone.