A week ago, we got Gabriella in the pool twice. This wasn’t always a big deal, but it is now.

Our daughter has always enjoyed the water. The sight of her shower chair rolling down the hall toward her room brings whoops of joy that continue until we dry her off afterward. Her favorite moments at the Shore involve riding her beach wheelchair into the low tide and feeling the spray on her toes. But the occasional dip in the pool remains her ideal.

We have our guesses why she loves it so much. After spending most of each day in her chair, it must be pleasant to feel her legs adrift. We only take her into heated pools, whether indoor or out, and the warmth seems to soothe her. Either Lisa or I hold her torso to torso, sometimes facing us, sometimes facing away, relishing the shared experience. We also appreciate the glee on her face as we bob her and turn her in the water.

The pool at our summer place has provided many hours of fun for our family, but I have become somewhat more hesitant to bring her. The process remains straightforward. We wheel her chair to the top of the pool-stairs, I lift her out and down into the water, I get her to the deeper end. My wife and I pass her between us, changing her position to keep her interested. With her ear close to my lips, I whistle as I do at bedtime. Lisa holds her facing out and they make a game of splashing Daddy. We stay in for thirty or forty minutes and she is peaceful and happy. When she gets cold, I carry her to where Lisa waits to wrap her in a towel, and we settle her back in the chair to dry off. After a short time in the sun, we transport her inside and up to our floor and remove her navy-blue swim-diaper, less absorbent than her usual diapers. It’s a fair bit of work and unchanged with each passing year, but it brings great pleasure.

Years ago, it was easy to bear our daughter up from chair to my arms and walk her down the pool-stairs into the low water. Even at age twelve, she weighed less than sixty pounds. Her mom and I were younger, too. Now, however, Gabriella weighs nearly one hundred and our backs have gotten creakier.

Last year, we saw two other families struggling to get loved ones in the pool, including a young man much heavier than our daughter. We’ve asked about installing a handicap-accessible lift to manage getting her in and out, and will continue to pursue this.

When we’ve traveled more recently, we have sought pools with ADA lifts. While infrequent, we have been able to get her into the water in a facility in Williamsburg and on our cruise a few years ago. And then last week, when my mom hosted a Van Heest family reunion at Mohonk Mountain House, we got her in twice.

The ADA lift offers a chair that starts over the side and ranges out over the water. Some facilities demonstrate the equipment and then turn it over to the family, but Mohonk had their employee operate it. We transferred Gabriella from her wheelchair to the lift-seat, then I lowered myself into the pool and they lowered her until I could receive her. We took advantage of their morning Adult Swim hour when it was less crowded and quieter.

Both times, Gabriella loved the pool. And with the benefit of the ADA lift, I emerged with energy, ready to enjoy time with family in a beautiful setting.

After Gabriella got her Panda adapted stroller, getting around became more complicated. While the Panda divided into two pieces, both were heavy and unwieldy and they consumed the whole trunk of our car. She still weighed less than fifty pounds then, but loading her and her equipment in a parking lot was overwhelming, and more so for one person. The time had come to buy an adapted minivan.

We didn’t care for minivans, but many of our friends with children drove them. We also knew our daughter would someday move to a full-size wheelchair and a ramp would become crucial.

This was 2001 and we had to figure out how to navigate the conversion process. (It’s still complex.) Only a few dealers in New Jersey sold adapted vehicles. Once we purchased a van, the dealer would ship it to one of several companies in Michigan and Canada. The adaptation would take between six and eight weeks and cost $25,000, on top of the price of the minivan.

Perhaps our most important choice concerned the location of the ramp. Rear-entry models were newer then, but came only with Chrysler and Ford vans. The more established side-entry conversions featured more carmakers.

How to decide?

We took our daughter to the Abilities Expo, a convention where vendors exhibit a wide range of equipment for people with disabilities. It’s become an annual sojourn, enabling us to try out many of the implements we’ve bought over the years.

Because several dealers were showing converted vans, the Expo offered more models and perspectives than we could have gotten visiting showrooms. We wheeled Gabriella into each vehicle and sat in the rear seats (often the second row in an adapted minivan adjusts out toward the doors or replaced with less comfortable buckets). We noticed distinctions like the incline of the ramp and the visibility from the driver’s seat.

Our normal activity also informed our decision. We do less parallel parking and frequent lots without available full-size handicap-spot, so we concluded the rear-entry format would be more flexible. We ordered a Dodge Caravan.

Our conversion offered automated access, with a single button that lifted the hatch and lowered the ramp. It was a new Canadian design, and we were among their first American customers.

We also had to get Gabriella from inside to the new van. None of our exterior doorways offer access without stairs, so we hired a carpenter to build a ramp on the opposite side of our two-car garage. His ingenious design split into three distinct sections, each latched to the wall but folding down into place. This allowed us to keep our other vehicle in the garage.

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A few months after we received our converted Dodge, we took our first family vacation to Disney World. As we did on our recent trip, we went by AutoTrain from Lorton, Virginia. We were within a few miles of that station when the van idled and then died.

At once we asked ourselves: had buying the newer conversion been a mistake?

I pulled to the shoulder of the highway and got it started again, but it soon failed again. After an anxious period, we coaxed it to Lorton and made it onto the train.

After arriving in Florida, I brought it to a Dodge dealer. When they raised our car, they said they had never seen such a ‘chop-job’, and that the conversion made their diagnostics more difficult. Again we began to wonder. When they couldn’t find anything wrong, we became nervous every time we loaded into our van while in Orlando. We held our breath, but it gave us no more trouble on that trip.

It became as reliable as one might expect from these vehicles, recognizing that for all the expense, they don’t last as long as unadapted vans. The adaptation included cutting and soldering the pipes beneath the van, which led to problems with the exhaust system. And the added weight of the ramp construction stressed the wheels and we had to replace our tires more often, another common problem.

Yet it met our needs. Before long it was time to replace the Dodge, and we knew we had no choice. We needed another adapted minivan.

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Upon returning to the Abilities Expo, we learned that our conversion company had become more refined in the years since we bought our Dodge. We went with them again, choosing another Chrysler.

Our friends have long since moved on from minivans but we haven’t, and at times our vehicle feels like a symbol of our different status. But we maintain hope that someday we and our twenty-something daughter will graduate from the ranks of ‘minivan families’. At the last couple of Expos, we have discovered a growing selection of cars and SUVs available for adaptation, although most are too small for our needs.

In the meantime, we count on our adapted minivan to open new horizons in our lives.

Every day, we use equipment to care for and transport Gabriella. These range from medical implements to her wheelchair and bath-chair to our minivan with its rear-entry ramp. Then nostalgia strikes, and I venture to our basement (and into the recesses of my mind) to find some of the unusual devices of her earlier years. Her corner-chair. Her prone stander. And the amazing Scalamobil.

I’ve never been mechanical and find myself intimidated by the need for adjustment and upkeep. But as with medical terminology and care routines, I’ve learned enough to get by, and then I depend on Lisa’s greater facility.

Early on we obtained her Panda stroller, the subject of a drawn-out battle with our insurance company. Like much of her equipment, the Panda served both our daughter’s needs and our own. A buggy transferable between indoor and outdoor bases reduced the mud her baby stroller tracked inside and simplified getting her around when we left home. It also helped us all transition, both physically and emotionally, to a time when she would need a full-size wheelchair.

Gabriella was born with low muscle tone, lacking the strength or agility to crawl on her own. It thus became vital to stretch her and position her on the floor. For this purpose, we got her the Tadpole tumble forms positioning equipment. Each piece contained foam covered in a colorful smooth plastic shell in a different shape. We’d use a blue wedge to support knees with contractures that impeded bending, or a red triangle along her side to keep her balanced while lying on her belly.

Some devices came as a result of surgeries. I’ve written about her comic adventures with tiny eyeglasses and contact lenses following her cataracts surgeries. She wore a soft foam-filled cap after they excised the tumor from her skull. Both encouraged us, representing part of her healing process.

Sometimes, insurance covered the expense, but more often we needed to make the investment ourselves. And then there were the gifts of ingenuity. Lisa’s sister Joanne built Gabriella a marvelous corner-chair that we strapped her into with Velcro; this provided our daughter with comfort and support for several years (see this week’s image). On a smaller scale, an aide at Lakeview School customized a spoon with a smooth curved handle that Gabriella held to feed herself. The love that went into crafting these solutions brought us appreciation and joy.

Other equipment strengthened her bones and muscles. Her physical therapists at school used a prone stander, as large as a piece of furniture. They would angle Gabriella forward on her chest and belly and thighs, secured in several places. This device promoted weight-bearing and gave her a sensation much like being upright. They also introduced us to adapted tricycles. Because she’s a kid who is happiest when she’s in motion, riding was an exciting sensation for her.

To bolster this strengthening outside of school, we got a stander and an adapted tricycle for home. We used each with some trepidation, and soon decided to focus her strength-building at Lakeview, under the oversight of trained therapists. Then Gabriella’s scoliosis worsened and we had to stop using either device even there.

Of all her equipment, the most remarkable was the Scalamobil. Advertised as a stair-climber, the Scalamobil replicated the motion of ascending or descending steps.

We live in a center-hall Colonial, with the bedrooms on the upper floor and the living space on the lower. When she was younger, Gabriella weighed so little that carrying her to and from her room required little thinking. Her weight remained in the bottom 10% for her age, but as she approached fifty pounds transporting her up and down became more difficult.

When the vendor unboxed the Scalamobil and demonstrated it on our staircase, five steps to the landing, then eight more upstairs, we were filled with wonder. The device had three wheels on each side, large on the inside, small in the middle, and a third on the exterior. When backed against the lowest stair, they moved like gears to gain a foothold on the step above, then gyrated to lift the chair. Coming downstairs, they reversed direction, with one securing the next step before descending.

Once convinced it was safe, we lifted Gabriella into the seat. The Scalamobil had a lap-belt and a harness strapped across her chest, and a foot-stool fitted to its base. At first, she looked frightened at the whirring and rising, but soon it was part of our daily routine, more important as she gained weight.

Gabriella has introduced me to a world of equipment I would never have known otherwise. Home-made and custom-built, simple and miraculous, these devices each proved essential to our daughter’s development.

Even at four, Gabriella hadn’t outgrown her baby carrier. She grew in sporadic bursts, but like most things, her weight remained behind the norm. So did her length, a word that bothered me because she was at an age where parents described their children as forty inches tall. But because she was unable to stand, they measured her lying down and reported her height in length.

Not long after starting at Lakeview School, Lisa brought her to their well-respected wheelchair clinic. This, too, was a reality I had come to gradually. Because our daughter had an angelic face, it wasn’t always obvious in public that she was too old to be sitting in a stroller, at least until she contorted and whined. We absorbed that we would need to move to something more grown up, but the idea of our child in a wheelchair seemed so final.

The director of the wheelchair clinic did a thorough evaluation and confirmed our fears. Gabriella couldn’t sit independently and she lacked the necessary support. As a result, she wasn’t eating well and her posture was worsening. She needed a platform that made it easier for her to swallow and improved her digestion.

They introduced us to the Panda mobility buggy. I had never imagined such a thing existed, a whole system of devices. While out and at school, her buggy would sit on a wheeled base. The buggy and base were detachable, allowing me to stow both pieces in the trunk of our Camry when we took her out. The Panda came with a separate component to snap the buggy into at home. Lakeview’s recommendation also included a solid seat and back customized to fit Gabriella, and a variety of other parts, including supports for her torso and legs and feet. There was even a sun visor because her eyes were photosensitive following her cataract and strabismus surgeries.

My sorrow at the thought of my child forever in a wheelchair turned to hope. This system would help her eat better and would correct her worsening posture. Months of work culminated when Gabriella’s pediatrician wrote the prescription and we submitted to the insurance company.

It took them only two weeks to mail us their denial “because custom chairs and equipment are not a covered benefit”. We were disillusioned.

This equipment had piqued my optimism. If necessary, I told Lisa, we would pay for it ourselves, even though it cost more than $5,000. I was prepared to cut corners to give her the solution she needed.

Then we heard that many insurance companies deny expensive equipment in every case. They knew some families would pony up the cost themselves, while others would give up. Not long before, I had moved to work for an organization well known for ethical behavior. In comparison, this unfeeling approach seemed wrong.

We decided to dispute the rejection.

As always, we were thorough in our appeal. And as usual, Lisa did most of the work. Over time, we encountered these rejections for everything we sought for our daughter’s care, but this was a new experience. We rebuilt a case we thought we had detailed in our original submission.

And then we waited.

In mid-December, six months after their denial, we received a response from our insurance company. The letter started by telling us they upheld their rejection of the sun visor and the basket, calling them convenience items, and not covered benefits. I never knew why they felt the need to make this point first – perhaps to save face? They went on to say they had reversed their decision and authorized coverage for the Panda mobility chair, home underframe, shoe holders, seat insert with lateral trunk supports, tray, headrest, anterior chest support and the labor to install.

It was an early Christmas present from an unlikely Scrooge.

Soon after the New Year, Gabriella was getting around in her purple Panda. She ate better. Her posture still wasn’t great, but she gained reinforced support.

And we learned a valuable lesson that would benefit us in the years to come, and that we would pass on to others: when the insurance company denies your submission, No doesn’t always mean No.