While other parents had a typical back-to-school season, I watched as my daughter was dealing with constant pain — and no diagnosis

• I thought my last back-to-school season as a mom would be joyful and nostalgic, but it wasn't.
• My daughter had a debilitating illness, and I didn't know whether she'd ever make it back to school.

It was the first week in August and my last back-to-school season as a mom. Other parents found these final days of summer before the last first day of school bittersweet, but it wasn't so sweet for me.

My daughter, Annie, was supposed to start her senior year of high school in a few weeks, but instead of picking out colorful new binders or finalizing her first-choice college, she was in an antiseptic doctor's office sitting on an exam table, the thin paper loudly crinkling whenever she nervously shifted. I was on a stool in the corner, crossing and uncrossing my legs while I waited for the white-haired doctor to offer us anything — a diagnosis, a prognosis, a lead, or even a hunch.

"There's some left-side weakness," he said, turning to face us both. "But other than that, everything looks normal."

Normally, normal is good — the word you hope or pray to hear. The two syllables that allow you to exhale. But not for Annie.

We didn't know what she had

We were one spinal angiogram, two MRIs, three X-rays, four blood panels, seven doctors, and 142 days into our search for the cause of the searing pain in Annie's back. The mysterious and debilitating burning started one day on the school bus last spring and never went away.

But we weren't getting the answer today. Annie looked crushed. Again.

"It's OK," I mouthed when I saw her eyes well up. She shook her head and looked down.

I felt my phone vibrate as we walked to the elevator — it was the group text of other moms I knew:

"Can you believe they're seniors already⁉️"

"Let the countdown 'til we're empty-nesters begin‼️ —>"

"Early action or early decision…? "

I wanted to join the celebratory chat, to be joyful and nostalgic in anticipation of this milestone, but I couldn't. What's the emoji for "I'm not sure my once sparkly-eyed kid's going to make it back to school because of an unknown illness?"

I texted back, "Looking forward to what's to come!" even though I was dreading it.

She has Ehlers-Danlos Syndrome

I was ashamed to admit the dread and ashamed that I wasn't more grateful for our family's privilege — we had health insurance. We lived in Los Angeles and had access to specialized medical care. We could afford to keep looking for a diagnosis and a fix. But watching my kid disappear into sickness and give up on college-campus tours, a-cappella-group performances, senior prom, and falling in love eclipsed everything good.

We sat in afternoon traffic on the way home, and Annie kept adjusting the passenger seat as she tried in vain to get comfortable. She was crying so softly that I didn't notice until I turned to her at a red light.

"I don't think I can go back to school like this," she said. I wasn't sure she could either, but I knew she didn't need to hear that from me.

"You'll get there — I promise. We'll get you lumbar pillows and let your teachers know what's going on, and we'll make this work," I told her, desperate for her to believe me.

When we got home, I busied myself to quiet my helplessness. I reviewed the medical records on the kitchen table and filled out a "Request for Accommodations" form so Annie could get what she needed to make it back to school.

I left the line asking for the diagnosis blank because she didn't have one yet. Her diagnosis came months later when we learned that this pain was the first of many Annie would battle because of a hereditary and incurable connective tissue disorder called Ehlers-Danlos Syndrome. A crushing diagnosis that two renowned specialists confirmed by spring break.

She made it to the first day of her last year of school

Two weeks later, on the first day of school, I stood with Annie in her white polo shirt and grey pleated skirt while waiting for her school bus. The busy street in Santa Monica, California, was teeming with excited parents taking pictures and nervous students with oversized water bottles and overstuffed backpacks. Annie was biting her nails. I was tapping my foot against the pavement, trying to see my daughter off to her last first day of school with fake confidence. The bus pulled up, and Annie turned to me, half smiling, and said, "Wish me luck." I squeezed her hand. She squeezed back.

The bus was filled with eager students, and I watched Annie smile and hug her friends. She looked happy. Normal. Healthy. I closed my eyes and let this snapshot linger — this moment of firsts and lasts, of uncertainty and hope — a portrait of my daughter's undeniable grit and resilience.

All of this was bitter and sweet.

Sharon Schindel has raised two kids into adulthood and is also a documentary film producer, a wife, and a mom to an excitable labradoodle.