All summer, Gabriella had been coughing. She was often congested. And her respiratory complications raised alarms about aspiration.

It was the week before Labor Day, eight years ago. More than a decade had passed since those tumultuous early days of dehydration and surgeries and the malignant frozen section. Much of that time was calm, even if the monotony became disheartening. But be careful what you wish for…

My wife made the rounds among our daughter’s specialists, adding an allergist and a pulmonologist. We became concerned about asthma, which ran in my family. After a trip to the ER in March, we were giving her respiratory treatments at home with a nebulizer. This involved pulling a clear plastic mask over her mouth and nose, squeezing liquid Albuterol from narrow tubes into the apparatus, dispensing it in gas form.

These treatments became a daily ritual, which largely fell to Lisa. I had a long workday, and she was the medical professional. Plus, the new routine intimidated me. What did I know about dispensing medicine?

Only later did I realize how stressful it was for her. Years of education and training and experience as a practitioner don’t prepare a mother to treat her own child.

All of this made me feel a bit useless. At the beginning, it had all been so enormous. We had gone from having our first baby to discovering how unique were our challenges, from a crushing diagnosis to ten surgical procedures. I was there for all the hospitalizations and the meetings with the geneticist, and I attended appointments with the orthopedist and the brain surgeon. When the bank I worked for got sold in 1996 and I was laid off, I took the opportunity to spend six weeks caring for Gabriella while Lisa was having Alexander.

By 2010, life was different. I headed to the train station each morning at 5:30 and arrived home around 8 p.m. Most of the developments came during visits with the pediatric specialists. I was left with a dislocated anxiety.

The physicians involved were different, too, focused on digestion and breathing as opposed to eyes and bones. There was something more subtle about these complications, something more mysterious.

On the Tuesday before Labor Day, Lisa went for a consult with the new pulmonologist. She shared the x-ray of Gabriella’s lungs, which showed markings consistent with chronic inflammations, similar to asthma. The congestion and coughing increased her chance of aspirating, she confirmed. And she added a second medicine, Pulmicort, to the daily respiratory treatments, while prescribing chest PT to loosen the accumulating mucus. She even recommended a device that would administer this therapy by itself: the Vest.

Chest physical therapy consists of rapid hits with a cupped hand on the patient’s back and upper torso. During her hospitalization the previous March, Gabriella discovered how much she hated chest PT. Some combination of discomfort and insult over those repeated light body blows caused her to pout and cry. Even more, she had hated her experience with the Vest. Neither Lisa nor I relished inflicting such misery on our child, but as usual my wife got stuck with most of the burden. But we opted against reprising the Vest.

In the meantime, we explored whether her respiratory issues had a GI component. A few days after seeing the pulmonologist, Lisa took her to the gastroenterologist. She expressed hope that the lung treatments would prevent further infections and pneumonia, but warned that if they didn’t, she would seek a pH probe to test for reflux, one possible cause of aspiration.

Not long after, Gabriella missed school with a wet cough and a low-grade fever. The pulmonologist ordered more x-rays. We increased the frequency of her nebulizer treatments and her chest therapy. Later that week, she remained very congested with a thick sputum. On the third day, Lisa made the rounds of the specialists.

That evening, she briefed me on a most ominous morning. Gabriella looked pale and she weighed 55 pounds, down 7 in two months, unsurprising since she hardly ate. The GI was concerned. She prescribed an immediate suppository, with another that night. Within forty-eight hours, if our daughter hadn’t resumed eating, she would have to be admitted to the hospital and fed through an NG-tube. The gastro also raised the possibility, that she might need a permanent G-tube. We had discussed this previously, hoping to avoid it if at all possible.

The lung doctor added something else. While the x-ray of her chest was clearer than expected, the view of her abdomen showed an unexpected development. Gabriella had kidney stones.

Suddenly, all was spinning. I had a difficult time processing all of this information. It was likely at least some of these symptoms interacted with one another, but how was unclear. I had no ability to distinguish among different types of feeding tubes, but all of them brought a foreboding. And kidney stones? I didn’t know a lot about them, but I knew they were painful.

It pained us that Gabriella couldn’t tell us herself where she hurt. And we prepared ourselves for a new period of the unknown.

To be continued…

The feeling lurks within like a sleeping beast. It’s not so much a spike of fear as a lingering dread, ready to be roused at any moment. By a phone call, a blurring over the eyes, a bump on the scalp. Or a retching cough.

We had settled into a routine. Those first few years – the dehydration, the cataract and clubfoot surgeries, the cancer scare – had indoctrinated us into a life of constant anxiety. A decade later, our daughter’s spinal fusion surgery had exploded any sense of normalcy. Now came the reign of tedium.

Lisa bore most of the burden, the hurry-up-and-wait activities of doctor visits and lab tests and billing questions. I worked. Gabriella went with delight to Lakeview School, and we tried not to dwell on the pace of her development. Or on the fact that her IEPs (the educational plans documenting her goals and her progress), hardly changed from year to year. Her health was stable, our primary concern.

But there were worrying signs.

For one, in September 2005 she weighed 57 pounds. Her height was already in the fifth percentile for eleven-year-olds, and her scoliosis surgery that month effectively stunted any further growth. The awful complications following that procedure weakened her and over the ensuing year, she dropped ten more pounds. The low point for me was looking at a photograph taken on the beach with her brother and cousins, finding that her arms and legs looked skeletal. It took another twenty-four months for her to regain what she had lost since the operation. After that, she plateaued between 55 and 60 for two more years.

One reason was that Gabriella remained a picky eater. I had reasonable luck in feeding her on the weekends, but it was still a struggle to get down a couple jars of baby food and a dish of applesauce. Before the scoliosis procedure she had begun using a customized curved spoon, laboring to control it to her mouth and needing lots of help, but finding pleasure in the act itself. She also toyed with drinking thickened juice from a cup, lifting the two-handled vessel to sip; this was important because she drank little water except when squirted between her lips with a syringe. But these burgeoning skills were among the things she lost when they straightened her back, never to return. We resumed holding the spoon ourselves.

She ate pureed food, and Lisa put meat or vegetables in the blender to vary her flavors, but sometimes she would choke, unable to process anything but the bland mush in the Gerber and Beechnut jars. Too much coughing interrupted a meal and often signaled its end. We heard similar frustrations from her teachers and speech therapists at school.

The coughs weren’t limited to mealtime. Our daughter became prone to respiratory infections, often succumbing around her birthday in late November. More than once, we spent Thanksgiving at home, trying to get her fever down, to ease her discomfort, to keep her from gagging herself into vomiting. She contracted bronchitis a few times, and pneumonia several more, always in her undersized right lung.

The confluence of these symptoms – her flatlined weight, her limited water intake, her frequent coughing and her respiratory setbacks – worried Lisa. It was a busy time at my job, and she took our daughter to nearly all of her pediatric specialist appointments by herself. Perhaps because I tried to stay optimistic, I rejected the idea of more comprehensive problems. But even within me, the dread began to stir.

What I never suspected was that this would soon become the second most stressful and medically-involved period of our daughter’s young life.

To be continued…

Nostalgia is a funny thing. I’ve experienced it in memories of childhood, of our early marriage, of good friends, but I never expected to find it when thinking back to our daughter’s earliest surgeries, moments filled with shock and apprehension. Yet this week that’s what happened.

On Friday, Gabriella had an appointment with the ophthalmologist. She sees him only every couple of years, which is a good sign. It was to be a late morning visit, and Lisa reminded me that his office is often crowded, the waits long.

This would be the first time I had accompanied them to his office in twenty years. On the roster of medical specialists our daughter has seen over time, he has long been routine.

It wasn’t always that way. We discovered a milky blurring when she was six months old and learned soon after that she had cataracts. She was already seeing an ophthalmologist for strabismus, and he performed four separate surgeries for this new problem, two each to remove the cataracts and to implant intraocular lenses, plus a fifth to correct the crossing of her eyes.

The two excisions were her first two operations, her first exposure to anesthesia, our first exposure to the surgical waiting room. By the time he had inserted the second artificial lens, however, our daughter’s medical situation had grown more severe. Our frustrations over getting her to accept glasses or contact lenses paled alongside the need to break several bones to correct her clubfoot. Or multiple surgeries to remove a tumor affixed to her skull.

All of this is two decades in the past, but it still casts a long shadow over our lives. And yet I looked forward to this doctor’s appointment.

In the late morning, we got Gabriella ready and into our adapted minivan. The office is half an hour away, and we arrived fifteen minutes early. As I had before, I appreciated that he was the rare pediatric specialist who continued to see our daughter after she turned twenty-one.

Soon they called her name. A medical assistant led us into an outsized examining room. More than the handicap parking space at the end of the long row of exterior doors, more than the waiting-room with the bead-maze toys, this spot brought back memories. All around were pieces of equipment I recognized, even if I had never learned the names of any. And my déjà vu increased when her doctor came in.

Life with Gabriella has introduced us to the best and the worst of the medical profession. We had a geneticist with a miserable bedside manner. One surgeon couldn’t be bothered to let us know that the malignant frozen section was wrong, that our child didn’t have cancer. But there have been many more amazing physicians, neurologists and orthopedists and neurosurgeons, and this man, Dr. Engel, Gabriella’s only ophthalmologist over all that time.

We looked at each other with big smiles, we shook hands, we exchanged pleasantries. Two decades had grayed his temples and left a few lines on his face, but those kind eyes brought that spark of nostalgia. The eyes of an eye-doctor, they had reassured us and buoyed us and comforted us in those first unstable days.

Back then, his practice was small. When we met, he extended his hand and said, “Call me Mark.” Of all of her doctors, he was the one that felt like a colleague. A friend even.

He examined her on Friday with the same gentleness and easy command I remembered. Unlike the visual exams I’ve experienced, there was no eye chart with rows of shrinking letters, no refraction test with the fancy device with all those rotating and clicking lenses. He assessed her vision using measurements of the eyes, he puffed air to evaluate the risk of glaucoma, and then he dilated her pupils and we sat back in the waiting room before returning for him to examine the backs of her eyes. He also checked the intraocular lenses, which have held up well since she was three.

Then it was time to say farewell until her next appointment in two or three years. We shook hands again and headed out, and I felt a warmth I’ve rarely known in medical offices.

Nostalgia comes in the most unexpected places.

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.