This will be my last post, at least for a while. ThingsMyDaughterTaughtMe is going on hiatus, but before I sign off, I wanted to express my gratitude to each of you.

I started this blog to share different aspects of our life as a family, including experiences, everyday activities, and some lessons I’ve learned along the way.

Posting has allowed me to reflect on the most intense events of Gabriella’s early days, from her birth through her dehydration to the operations to remove cataracts and a recurring tumor. I recalled her diagnosis at six months and our euphoria when it turned out to be inaccurate. I related other moments of joy, including the Level Two ultrasound that proved our son was unaffected by his sister’s syndrome. Reliving these experiences stirred old anxieties, but also brought back feelings of relief and even nostalgia.

I recorded some of our routines, from the stories-and-prayers-and-whistling that mark every bedtime in our house, to the sleepless nights that follow, punctuated by the beep-be-beep-beeping of Gabriella’s pulse oximeter.

I told about some marvelous devices that have bolstered our daughter’s health and made our lives easier, as well as the challenges we’ve faced several times when the power went out.

I’ve reflected on our adventures in travel, hopeful that our successes and our course-corrections might inspire others to take similar risks. Another post highlighted the sensory-friendly showings that have become more prevalent these days, a welcome  and welcoming innovation for families like ours.

I described things that bring our daughter joy, Disney World and animals and swimming and being in motion, and the ways she expresses her elation. One recent post also shared my euphoria when she clicks and cries ‘Woo-ee!’

Several posts described my own faith journey, from the crisis I faced after Gabriella’s birth through our life-changing visit to Lourdes. That’s a story that remains incomplete, but writing about it helped me understand it better myself.

And I’ve celebrated the amazing people in our lives, family members and friends and professionals and the unique community surrounding us. I chronicled her days in Early Intervention and Lakeview School, including the need for brute advocacy against the bureaucracies out there, and her more recent adaptation into her day program at Ladacin. I even offered suggestions for the special education teachers of tomorrow, based on our experiences with some great teachers of today.

Much of this content has comprised my perspectives on life with Gabriella, but one week our son Alexander wrote a popular guest post. And several times I’ve given due praise to the remarkable woman with whom I share every day of this journey, my wife and Gabriella’s mom Lisa.

Several posts have gathered insights I thought worth sharing, thoughts on how being Gabriella’s dad has made me a better leader, a better writer, a better man. I pondered questions I’ve considered for twenty-four years, including ‘Why her?’ and ‘What must it be like to be Gabriella?’

Throughout these past eighteen months, one thing has been consistent: my amazing readers. Some of you have been here since that very first post about communion dresses, others found the blog in recent weeks. Whether you came only once or check in every week, I can say only Thank you. Thanks for the chance to share my feelings in a new way. Thank you for allowing me to reconnect with the memories.

As I said at the top of this post, I am putting the blog on hiatus. This has been a difficult decision, but I’ve covered the core of our family’s history, the essence of our daily lives, and more than enough ‘wisdom’. I’d rather stop posting before Things becomes derivative. If something changes and I have a new series of stories to tell, I may well resume this blog (and those of you who remain on the email distribution will receive a notice just as you have until now).

In any event, thank you, thank you, thank you.

Third of three parts

With the tumor removed, Gabriella began the healing process. Lisa and I held a vigil at her cribside. In the lounge, they offered chairs that folded out to beds. We took turns clutching at sleep, more me even though my wife was pregnant with Alexander. I pulled my knees to my chest in an exaggerated fetal position so my calves wouldn’t hang off the end. Terror touched sparks off exhaustion in the hollows of night.

It was all too much.

Again we faced an exercise in waiting. My imagination painted all sorts of dour scenarios, radiation treatment and chemo and worse. Much worse.

During rounds one morning, the mesh helmet came off. Her hairless head, the scar circling her scalp, her exaggerated hazel eyes – all of it summoned a pity too powerful for tears.

“What are we going to do?” my wife said for the dozenth time.

“I have no idea,” I confessed in the dim early light. “I’m out of hope.”

“You can’t be out of hope,” she said. “You have to keep hoping for all of us. For her.”

I knew I was the optimist in the family. I said I would try.

Soon enough we got to take her home again. The routine was familiar: the packing up of tiny clothes and hospital blankets the nurses insisted we bring with us. (I fixated on whether it was right to keep these things.) When I picked up her pink snowsuit, I remembered a moment on the day of the diagnosis when I walked in on Lisa’s mother, clutching that same snowsuit to her chest and dancing a mournful waltz, struggling for breath and understanding.

When we arrived home and I carried her into her bedroom, lifting her onto her changing table with the smile widening on her stricken face and our family around us laughing and pointing and me shivering with a hesitant joy, I wondered how much more we would all have to do the same. And I realized that I would do it however many times I had to, to keep her safe.

And then, once more, we waited. Waited for the phone to ring, for the sign that the doctors had an answer. For the results, preliminary or final, of the pathology report, from our hospital or from Chicago. Waited for anything to chip away at the horror of the frozen section.

We had waited so often before, but this was different. I could think of little else. Days passed. Lisa called their offices, first one neurologist and then the other, the plastic surgeon and the oncologist. Nothing yet. By now they should have heard something. Our minds invented explanations, mostly that they didn’t want to break it to us until Chicago confirmed the bad news.

One day, Lisa called and they told her to hold on. The plastic surgeon was coming to speak with her himself. Absently I put Gabriella down on her playmat. The darkness filled me again. I watched my wife’s face, expectant but with a sickly expression, then clearing, almost blank. Was it good or bad? She hung up.

In a dazed voice, she told me. The doctor was reluctant to get our hopes up until we got the final report from Pathology and the second opinion from Chicago, but it seemed as if the frozen section was wrong. So why did she look so pale? “He was surprised his staff didn’t tell us the last time we called,” she said.

“That was two days ago,” I said.

“He didn’t seem too phased by that.”

Anyway, it looked as if the tumor might be an angioma, a benign growth.

We could have been angry at that point, outraged even, at having been denied the answer for days that we had been desperate for, and we wonder why they hadn’t bothered to call us when they found out. “Wouldn’t they think we’d want to know that?” I asked.

Then jubilation sang through the house. I grabbed Gabriella under her arms and swung her around in merry circles, my daughter giggling with the rush.

“Be careful,” Lisa said, laughing through tears. “She just had surgery.”

A week later, Chicago seconded the opinion that the tumor was benign, although they called it cranial fasciitis. It seemed an appropriate name for the creeping monster that had cost Gabriella a piece of her skull, but in the end I didn’t care what kind of benign-tumor label they gave it.

I believe our world needs a sanctuary for parents and family members of people with disabilities, and for those who want to know more about our lives. This site is an oasis in a world that is learning a little at a time about those like us and the amazing people we love.

I offer insights gathered in more than twenty years as father to both a beautiful daughter with multiple disabilities and a wonderful son with all the potential life holds, together with decades as a leader in a mission-based organization. There have been times when life has taught me about work, and others when work has taught me about life. It’s a different way to think about the work-life balance.

As an introvert by nature, for many years I kept my home experiences inside. Then one day I was invited to share with friends and colleagues across my company. I called my talk Things My Daughter Taught Me. Despite having spoken about business many times before groups large and small, I found it daunting to talk about my family life, infused these many years by the exceptional child we’re raising. And yet hundreds of people listened for an hour, with many more watching a recording afterward. I was truly humbled and deeply grateful.

I became inspired to share more of what my daughter taught me. And so this site was born.

I know many others out there have experienced the boundless love of special people like Gabriella – each situation unique and yet sharing surprising similarities – whether as parents, siblings or family, as committed teachers or therapists or medical practitioners, as volunteers, students or friends. I invite you along on this incredible journey, and to tell others you think might benefit.

In our world today, time is precious. Thank you for every moment you devote to Things My Daughter Taught Me.