Kaimuki’s HUGS reaches families across Hawaii

KAIMUKI—Imagine your life is rolling along pleasantly enough with its usual bumps in the road—career frustrations, increasing debt, marital stresses, toddler temper tantrums, and so forth. You and your spouse are both working, bringing in a decent living. You have two children, and are doing your best to provide for them, saving for their education and offering them every opportunity possible. Then, one day you learn that one of your children has a life threatening illness.

All of a sudden, your previous problems don’t really look like problems anymore. Getting your child well becomes your singular focus.  Thankfully, you have health insurance, but now you are missing work to stay with your child so he or she can receive needed treatment. The hidden cost of illness—missed work, co-payments, prescription medication, additional childcare for siblings, and often times travel—can place such profound stresses on a family’s budget that there is no way to prepare for it. 

On top of that, the ill-child becomes, understandably, such a focus that the needs of the other family members, emotional and otherwise, fail to be properly addressed. The illness thus takes its toll on the entire family, with each individual family member suffering in different ways.

Often times siblings have a particularly hard time coping, their sadness compounded by other complex emotions such as jealousy and anger. Routines are disrupted, discretionary income that normally would facilitate family activities or vacations evaporate, and even quality time spent as a family gets invaded by mounting responsibilities related to the illness. This is when an organization like HUGS can really help.

HUGS (Help, Understanding, and Group Support) is a small but successful not-for-profit organization run out of a quaint Kaimuki bungalow. There are five full-time staff members, plus interns and volunteers.

Since its founding in 1982, it has carried out its mission statement to an ever-increasing number of families: “HUGS supports families by improving their quality of life as they face the emotional and financial hardships of caring for a seriously ill child.” 

HUGS is non-disease specific. About half of its children have cancer, predominately Leukemia. Many others have heart conditions. Otherwise, there is a wide range of illnesses represented, some extremely rare. In fact, the only criterion for qualifying for HUGS is having a child age 21 or younger with a serious, chronic life threatening illness in the family. What unites the diverse group of HUGS families is the fact that they are coping with a constant series of financial, spiritual, and emotional challenges.

Last week, I went to speak with Steve Crocker, their Family Services Coordinator. He is an affable guy who clearly loves his work. Crocker immediately set me straight about HUGS. Contrary to the common perception, HUGS’s primary goal is to support and strengthen families in ways that are fun and family oriented. It is not a bereavement group, but rather HUGS seeks to improve these families’ quality of life through peer-to-peer support and joyful events that celebrate life. Some of these events are monthly, others are annual.

One example of a monthly event is something called “Respite,” which is actually offered twice a month, for a total of eight hours. “Respite” provides parents and caregivers a much-needed break from the intense demands of caring for a seriously ill child, as well as their siblings. This free childcare service, staffed by both HUGS staff and volunteers, is a win-win for both the children and the parents. The HUGS facility is ideal for this service with its beautiful yard and playground, lots of toys and books, and many other fun and creative activities. Emergency “Respite” is also offered on a case-by-case basis according to needs and staffing.

There is also both a Mom’s Night and a Dad’s Night each month, another form of “time off” for the parents but with the additional component of camaraderie with other parents in a similar situation. Again, this is not done in the form of a support group but instead ranges from dinner and a movie, to seeing a play at Manoa Valley Theater, or even spa night. The venue’s location rotates to different areas of Oahu throughout the year, to make it accessible to as many HUGS families as possible.

Family lunches, dinners, or Family Fun nights also occur at least once a month, offering relaxed “together time”—something that is often in short supply, particularly when families are doing long hospital shifts. Some of these events are sponsored by companies such as Prudential Foundation and FCH Enterprises (Zippy’s), who donate the food and activities. This month, the Family Dinner will be on September 25, and features a Zip line, bounce house, and shave ice.

Two major annual events include the Christmas Party and Celebration of Life.

The Christmas Party is designed with both children and adults in mind, and with the intention of minimizing anxiety during the holiday period. The holidays can be a stressful period during the best of times. Try to envision coping with a serious illness while managing expectations to be joyous and happy. Wouldn’t it be nice if someone else did the legwork involved in creating a nice Christmas for the family? That’s what HUGS does. Central to the success of this event is finding appropriate gifts for each of the children in the HUGS families.

To that end, HUGS holds a toy drive that solicits age-appropriate and often specific requests for toys. Although HUGS has consistently witnessed an abundance of generosity on this front, one challenge is receiving the gifts early enough to make the postage deadline for the neighbor islands. If you are interested in getting involved, it is never too early.

The annual Celebration of Life serves as a microcosm of HUGS. It manages to combine heartfelt acknowledgement of the loss of a child with a joyous celebration of life for the living. Each year a special venue is selected, whether it be the Honolulu Zoo, or, this year, the Polynesian Cultural Center. The day features a Remembrance Ceremony followed by a day of fun. This year’s Celebration of Life addressed the importance of family and ancestors. The Island of Aotearoa’s cultural presenters designed it specifically for HUGS families and followed it with a butterfly release, a special touch.

It is also worth mentioning that since there is not a branch of HUGS on the outer islands, HUGS subsidizes airfare for these families for one event per year—usually for the Christmas party or Celebration of Life. In addition, there is a fund to help families with airfare when the patient is being treated off-island. The Hawaiian Airlines Hawaiian Miles Program donates mileage to their cause. 

Other financial assistance to families include the Kokua Kupboard, which provides food, help with a variety of transportation needs, and a funeral fund, for the unfortunate instances when this is necessary.  Although there are some HUGS families that lose a child, the majority of HUGS families manage to overcome their illnesses.

Last month, HUGS was honored by ProjectFocus, which selected HUGS as their 2010 partner agency. ProjectFocus Hawaii is a non-profit founded in 2005 on the premise that “everyone needs a voice, and no one needs it more than a child who has much to say.”

ProjectFocus teaches photography to at-risk children, giving them an outlet for expression and perspective on their experiences. HUGS children aged 10-18 were invited to participate in a 12-week photography internship program, where they learned how to take quality portraits of their siblings, including the proper use of lighting, backgrounds, and even good interview techniques. They also wrote accompanying essays on how they felt about their sibling. The program culminated with the opportunity to display their chosen photograph at Macy’s special invitation-only gala event. This exhibition will be traveling to other venues on Oahu, including The ARTS at Mark’s Garage and the Kahala Mall.

What makes HUGS unique is the specificity of their mission and their ability to create a joyful atmosphere in the face of trying circumstances. By offering an invaluable combination of comprehensive pragmatic help, empathy, and fun diversions, HUGS takes the concept of Ohana to another dimension.

HUGS is always looking for help so that it can continue to provide these vital programs and services to Hawaii’s families free of charge.  It relies on grants, donations, and volunteers from the community. If you or your company would like to get involved, make a donation to the toy drive, or even just donate some Spam (a perennial favorite that is always in short supply), please contact them at (808) 732-4846. You can also find them online at www.hugslove.org. 

For more information about ProjectFocus Hawaii, and to find exhibition venues and dates, visit www.projectfocushawaii.com..