Therapeutic Respite

Our young members have reported that they require fewer and shorter hospitalizations following their Arizona stay. Their teachers vouch for the improved school performance and attendance. The question is why?

Boys and girls with CF regain that invaluable sense of normalcy during their respite in Arizona—especially city kids, which many of our patients are. The humidity of major metropolises such as New York, from which many of our young beneficiaries hail, is of no help to CF patients, and during the year, a CF child must adhere to a time-consuming (some say tyrannical) regime of physical therapy, medications, and diets. On respite, therapies and diet needs are not neglected, but retreat to the background in the face of hiking and strolling in the great outdoors and breathing in that fresh, crisp Arizona air so relieving to CF-tortured lungs. The Child Life Society gives CF children and their families the vacation opportunity they once could never have even dreamed of.

The medical community has noted that joy and humor “decrease stress and anxiety, reinforce immunity, relax muscle tension and decrease pain” (Cerebrum, Dana Press). And laughter, the best medicine, is shared in high doses among families on respite.

The Child Life Society covers all costs of the respite program, from arrival to departure and everything in between.

After landing in Tucson on a fully subsidized round-trip flight, each family, which includes CF parents, patients and siblings, picks up their pre-arranged rental car provided individually for them by our organization. After riding into town, they settle into their cozy, clean and fully appointed apartment provided to them by a dear friend of our organization. The Child Life Society maintains several such apartments, each apart from the others to prevent the cross-infections commonly caused by mingling CF patients and to ensure our families' privacy. The apartments are in close proximity to a shul with daily minyanim, shiurim and a mikvah. A small kosher grocery store is also available! The families are also given the assurance of full medical backup should it be necessary.

Once newly arrived families have gotten their bearings and have unpacked, the remaining days consist of an informal schedule of sightseeing, hiking and sorely needed quality time. A typical day consists of morning physical therapy, breakfast and prayers, followed by a day trip in their rental vehicle—perhaps to the Sabino Canyon, or to long hikes on the beautiful nature trails, a museum, or a theme park, all accented by a picnic lunch. (CF children on past respites have been known to experience returns of robust appetites, with many gaining vitally needed weight. These patients will undoubtedly return home stronger and healthier, and will continue to thrive.) Upon late-afternoon return to their apartment, the children might do a little schoolwork or play outside, then have dinner and take a walk with their family before undergoing another muscle-strengthening therapy session and going to bed.

Having a chronically ill child adds stress to the entire family. Add four or five other siblings who all need attention, and the challenge of taking care of a CF child can become an emotionally, physically and financially draining burden. The Child Life Society's Arizona program lightens this load, providing a breath of fresh air for all and reestablishing family bonds between parents, children, and siblings that will strengthen and carry them through the year. It gives overworked parents a chance to unwind, relax and focus on providing quality parenting to all their children equally, and that rare opportunity to spend time with each other.

One mother recently described how her three CF children excitedly talked about their Arizona trip, months later. She marveled at how the children felt better physically when they merely discussed the trip. Naturally, the trip itself had an even greater impact.
“My seven-year-old daughter has always been shy and reserved, and this trip caused a major difference,” she said. “My 12-year-old son was excited about flying in an airplane for his first time, and we saw a major difference physically and mentally in all the children. It was a great experience as a parent. Everything was done for us and we were able to spend lots of quality time together. Everything in general was a lot calmer.”

The value of the Arizona experience to CF patients and their families is immeasurable, but the following letters from participating children and families say it better than we ever could. Below are letters from a CF patient relative and a CF patient, respectively:

"Dear Rabbi Wolkenfeld,
There is no way to describe the joy you brought to the sisters and grandmother of a six-year-old CF patient. We all spent quality, physical, aesthetic and bonding time amidst the glories of Tucson, Arizona. Sabino Canyon is breathtaking (or should I say, breath giving). The awesome mountain ranges peppered with perennial coati and myriads of desert mounds enhanced our awareness of G-d's unending creations. For a bonus, we were privy to the most gorgeous, brightly lit rainbow I've ever seen. Thank you for giving us the opportunity to inhale the healing air of Tucson".

A grateful grandmother

"Thank you very much for such a nice trip. I had a grand time of my life in Arizona. The best part was going with my mother and father to the canyon. I wish that my hospital is there and not in Manhattan".

Shaindy

These true-life experiences are only possible thanks to visits to Arizona, providing CF children and their families health, physical and moral support, hope and happiness.