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.

It’s now a cliché to say it takes a village to raise a child, but in no case is it truer than with a child born with disabilities. Our village has become multi-faceted over two decades.

In the early years, our community was made up of medical professionals. Gabriella’s birth left us blindsided, but an intuitive nurse helped me through the first few hours while my wife recovered from her Cesarean. Suddenly faced with the unexpected, we relied on her pediatrician and a few specialists as we navigated dehydration and cataracts and clubfoot surgery and a tumor on her skull. Even today, I become nostalgic when I meet one of those early mentors on our unlikely journey.

As our daughter’s health stabilized, our team evolved. Lisa took her each week to Early Intervention, where she worked with a special education teacher and a nurse and three therapists (PT, OT and speech). We found the same model at Lakeview School, where the staff helped Gabriella blossom with dedication and patience. Lakeview also introduced us to a community of parents facing similar challenges, an invaluable resource for the scary times.

When she turned 21, Gabriella aged out of school. In New Jersey, adult programs (it’s still hard sometimes to think of her as an ‘adult’) are county-based. We’re fortunate that Monmouth County provides good alternatives. She takes part in a day program that offers a community feel, and we are thrilled that she has now moved into a room led by a former special ed teacher that provides an atmosphere much like a classroom. Again we’ve met a group of administrators, therapists and families that has widened our circle.

On weekdays, Gabriella’s nurses come early, get her ready, spend the day with her, and then transition her back into the home environment. On weekends, they arrive later and care for her until bedtime. In all cases, they manage her medical needs. Our daughter forms an attachment to many of these women, which makes it more challenging to replace them when their careers and circumstances change. Three weeks ago, we were discussing how pleased we were with her four nurses; then two had changes in their situations. As has often happened, we are again working on identifying and training new nurses, recognizing that some might not pan out. But those that do become a vital part of her community.

Each April I participate on a panel of parents of kids with disabilities for future special education teachers. Over the years, I’ve heard other panelists discuss the state agencies responsible for managing benefits for disabled adults. What struck me was that the rules seemed always to be evolving. Now that Gabriella qualifies, we have experienced the system for ourselves. We work with a service coordinator who has helped us navigate the latest changes. One outcome is that because our daughter attends her program only four days per week, we have funding to put toward other activities. We are excited about an art session we’ve begun exploring.

Most important are our family and friends, most of whom have been with us since the beginning of our odyssey. Their love has provided the support we’ve leaned on in difficult times, and the camaraderie we’ve enjoyed when things have gone well.

All these medical professionals and educators and families and loved ones make up our village, and every village needs a mayor. For us, that has always been Lisa. For all those years I worked long hours, she coordinated all the different constituencies that make up Team Gabriella.

It says a lot about our society that so many have contributed to the care and development of this one special person.

Last week, Gabriella went on a field trip with her adult program. The group has ventured out before, going to the movies (Black Panther!) and walking around the mall. This time, they spent several hours at Memorial Park in Neptune, enjoying the first summery day of the spring.

On weekday mornings, we load our daughter on the bus to her day program. We still refer to it as “school” even though she graduated in 2016, in part because the word conveys the magic of her eighteen years at Lakeview. She is always excited to go.

Enrolling her at Ladacin Network was an important step in her life. It was a big change for us as well, representing changes in experiences and routines. Gabriella goes with different nurses and she participates fully in the classroom. While her day program has less of an educational focus, they offer a range of activities including art, pet therapy, group PT and speech, and circle time. Every so often, they take a field trip.

This outing afforded the group time in the sun, complete with the sounds of summer. The park looks out onto Shark River, but it boasts a new boardwalk much like several of the Jersey Shore beaches. Unlike on our trips to Wildwood, Gabriella didn’t have access to her beach wheelchair, and they all remained on the boards rather than getting down into the sand and surf. Still, we’ll have opportunities to dampen her toes in the ocean in the coming months.

Gabriella had a great time, rarely complaining as they moved between sun and shade. Her nurse made sure she had enough sunscreen, while walking her around to keep her interested.

The trip allowed our daughter to share an afternoon with her peers. Just as with Lakeview, we (and especially Lisa) have gotten involved with the parents association at Ladacin. As an adult, Gabriella is establishing her place within a community of her own. She (and her nurses) are building their own relationships, independent of her family.

One of her program friends had a birthday on Wednesday. While Gabriella was unable to go to her group home and celebrate with her, she brought her a slice of cake with butter-cream flowers to commemorate the occasion.

Lisa and I still do almost everything with her. Next weekend, we will once again take her to the Lakeview prom, which welcomes alumni to celebrate alongside its students 15+ years old. I enjoy accompanying her, but it’s not lost on me that many other former graduates attend with nurses or aides. Even at age 23, I am hesitant to afford Gabriella that level of independence. But experiences like last week’s field trip continue to establish her as her own person, with her own community.

This is heartwarming for us, but it raises questions about the future. While I am determined that our daughter will always live with us, we know we can’t be certain. As she has her own experiences, as she establishes her own place in the community, she creates a new hope.

“Luck!” “Skill!” When we were kids, we used to bicker about the origins of a long swish on the basketball court or a slashing hit with the wiffle ball bat. (“That was luck!” “It was not – it was pure skill!”). I was thinking about that in reflecting on yesterday’s basket raffle at Gabriella’s old school, where there was plenty of both on display.

The basket raffle, also known as a tricky-tray auction, is Lakeview School’s biggest fund raiser. After missing last year, my mom joined us, and Gabriella had a favorite nurse along. We felt fortunate as well because Alexander called during the week to say he would drive out from his waning weeks at college to volunteer.

A lot of expertise goes into preparing for the event. Lisa and her friends on the Parents Association prepare for months in advance, first by collecting gifts and then by bundling the donated items into gift baskets and wrapping them appealingly. Over the last few days, they group hundreds of prizes into five categories by price and lay them out around the corridors. By the time Sunday afternoon arrives, they are weary but proud. They are a great community, a mix of family of current students and moms of alumni like Gabriella, all devoted to the success of the school that offered our children so many wonderful experiences.

Gabriella lit up as she always does when we approached the place she attended for eighteen years, and even more so as we entered the building. I still feel blessed that we got her into Lakeview after the early disputes with our former school district. She had paraded through this entrance every morning and she recognized it at once. Instead of the guard, several volunteers were there to welcome participants and sell ticket packages. Our daughter saw her Mom at the front desk and her smile broadened.

Sometimes I’ve worried this day might be a little confusing for Gabriella. Unlike a typical weekday, when the school is filled with kids and teachers and therapists, there are few children and fewer staff. We still come for other events, too, including Lunch with Santa and the Halloween Party, where the students are plentiful. (In a few weeks, we will again attend the Lakeview Prom, but that’s at a catering hall.) I don’t always give her enough credit, because this was her eleventh basket raffle and she seemed just as well acclimated from the time we got there, displaying her own personal ability.

Gabriella’s nurse took her around to see all the baskets, and this being Lakeview, everyone was extra aware of kids passing through in wheelchairs. Every so often, the organizers made an announcement on the PA system – so loud that our daughter began to sob. Luckily, we had packed her noise-canceling headphones, and she calmed right away. Meanwhile, I purchased my tickets and put them into the buckets for the many items Lisa had identified on her program. The lines were long and meandering, which I have to confess tried my patience, but of course the congestion indicated it would be another lucrative day. Soon it was time for the drawings, the ultimate sign of chance.

Mom won the second basket called and our nurse got one soon after. Alexander had his eye on a Japanese-style tea set including cups without handles, and we all stuffed that bucket – and he claimed that, too. Less than a quarter of the way through reading prizes, our table shared great fortune.

The Parents Association ran the event like clockwork, using a virtuosity they have cultivated over the past decade. Alexander and his fellow runners distributed the gifts, rolling carts with baskets through the halls between the rooms with bidders. I noticed a young boy pushing a cart and it reminded me of the first few times, when our son and his best friend were among the youngest volunteers. Now he was one of only a couple old enough to distribute the few prizes containing wine.

Our primary donation was a Roomba and I put several tickets into the bucket. Even though we gave that prize, I would feel no shame if we won it. But it was not to be. As happens most years, Lisa and I didn’t happen to win a basket ourselves.

Most importantly, the outcome was another productive day. We had often heard about the administration’s vision of building an aquatic center for its kids. The luck and skill of ten prior basket raffles, along with other fund raisers, enabled them to open the first school-based hydrotherapy pool in New Jersey last fall. We had the pleasure to see the facility in December. It allows a student in a specialized wheelchair to roll into place before lowering the floor and submerging child-and-chair for treatment. It was amazing. We felt a lot of pride that afternoon.

Approaching a special needs family, or approaching a person with disabilities directly, can often be awkward or intimidating. People have a lot of well-meaning questions, but they’re unsure whether, or how, to ask. To get some other perspectives on this etiquette issue, both on what to do and what not to do, I’ve spoken with friends in situations like ours.

People ask questions for lots of reasons. Some want to understand or satisfy their curiosity. Others are reinforcing a relationship. Some want to be helpful, to find a solution. Most are well-meaning.

From the beginning, we had lots of questions, too. There was so much uncertainty, we weren’t sure where to begin. At first, we wanted to know that Gabriella would survive, our fears exacerbated when we rushed her to the hospital with severe dehydration. As those early weeks receded, we addressed other emergencies, other threats. We tried to comprehend the abnormalities, the changes she underwent out of nowhere. What had caused them? Once treated, would they come back? Had they left lasting damage? Family and friends and those we confided in requested updates as well. Did you get the test result? How did the procedure go? (Sometimes questions just show how little people really understand what’s going on, as friends shared: when their child with cerebral palsy had hip surgery, relatives asked whether the child would now be able to walk.) While answering these questions can be draining, our loved ones were offering comfort and we appreciated their support.

Those early frights kept us on edge. We felt our circle of friends constrict a bit, in part because it was wearing to bring so many along, and we avoided encounters with those we hadn’t seen in a long time, for they would have the most questions.

Our daughter fought through each challenge. She grew stronger, and so did our resolve. But there was plenty of quiet time between the scares, and there was no shortage of questions then either. Often from strangers.

When we bundled Gabriella and took her to a department store, she would sometimes contort herself in the stroller, turning to the right and arching her head back until her eyes faced behind her.

People would stop before the carriage, and invariably they would ask, “How old is she?” Sometimes our daughter would stop twisting and smile; at other times she would keep complaining. We knew they were trying not to be intrusive, but the question still felt like a less obvious way of asking, “Is there something wrong with her?”

We would mumble “Six months” or “Eight months” or “A year.” Sometimes we felt obligated to add “She has some delays,” even if we hadn’t yet conquered the shame that accompanied that phrase.

Lisa and I often discussed it afterward. She thought they were trying to find something to say, to be kind. She compared it to “How many months?” when she was pregnant.

In most if not all cases, I believe the questions are well-meant. And I do think approaching us is far better than standing off and staring. Gabriella loves attention, and we love to find ways to include her. So what’s the best way for such an approach? (I will add that, while these thoughts reflect some perspectives of others, they are ultimately my own opinions.)

I’ll share some thoughts on what to do (and then some don’ts).

First, observe. If Gabriella is expressing discomfort or impatience, we’re more sensitive as well and it’s not the ideal time to come over. It’s better to wait until she seems happy or calm.

Second, approach in a respectful way. Smile. Say “Hi.” Ask her name and introduce yourself to her as well. (This is important. A lot of times people come and talk about Gabriella rather than to her.)

Third, ask a question that could apply to any child, not just one with disabilities. Would you tell me about Gabriella? How is Gabriella’s day going? What’s Gabriella’s story?

Finally, there are often opportunities to do something nice. Holding a door for a parent with a child in a wheelchair is especially appreciated.

Now a few things not to do.

First, please don’t stare. I hear stories about people who can’t tear their eyes away to the point that they trip over a curb or walk into a door.

Second, don’t touch her wheelchair. Many people with chairs view them as an extension of their body.

Also, it’s better not to try to diagnose her with questions like “Does she have CP?” (See above for some preferable things to ask.)

Finally, please don’t try to solve our problems before getting to know us and her and the specifics of her situation. It’s not helpful to suggest that she should sit up straighter, or to recommend ways to better adapt her chair when we’ve been taking her to wheelchair clinics and meeting with experts for years.

A caveat: children will walk up and ask direct questions like “What’s wrong with her?” That’s okay. If your kid does that, please don’t whisk him or her away and apologize. Instead, role-model by introducing yourself to our child and asking one of the questions above. We’ll all feel less embarrassed and more prepared for the next encounter.

Most importantly, don’t shy away. When an approach goes well, it can brighten both our day and yours.

What about you? Have you been on either side of a good approach, or one that didn’t go so well? Can you suggest other do’s or don’ts?