In Collaboration with HUGS (Help, Understanding, and Group Support)
ProjectFocus Hawai`i Presents
“I love my brother but everybody loves my brother too much. I think I love my brother more than I love myself. I think itʻs because everything about Josiah is more interesting than me. He was born on September 12, 2001, the day after the September 11th attacks. Josiah was born with tumors on his neck called cystic hygroma. They were so big he couldn’t breathe on his own. He has to have a tube on his throat and another tube on his stomach for feeding. My birthday is September 30, 2000. Nothing happened on that day but me being born and I am too normal to be noticed…Josiah gets attention wherever he goes. We were sitting in a shopping cart side-by-side but people only talk to him, telling him how cute he was. I tried to make people talk to me, I would cough like Josiah or cry like him but I didnʻt do as good a job as he did because nobody talked to me. I guess sick kids are cuter than ok kids. People forget that I am also a child although I am healthy and I would love to be noticed sometimes. I love ProjectFocus because Josiah doesn’t get to go and I feel important.” – Zaccary, Age 9.
All of this year’s ProjectFocus Hawai`i participants are siblings of seriously ill children receiving support from HUGS. They are the ones who often feel neglected, isolated, and alone during the time their siblings are receiving treatment, are in recovery or, as in the case of two participants, when their beloved sibling passes away.
Our participants have had to grow up quickly. Many of them have spent weeks, months and years in the shadow of their ill sibling, often entertaining them in hospital rooms; playing games, reading books and worrying about the fragile life in front of them whose stories they can’t quite comprehend. Caretaking becomes a shared family activity where regardless of age everyone joins in to offer a helping hand. Otherwise normal childhood activities like baseball practice, soccer games and hula are placed on hold or missed entirely while the family resources are directed to the ill sibling.
Raising a family is a joy — but even in the best of circumstances, it is also a challenge that requires time, energy, and care. When a child becomes seriously ill, the joy of family life can be disrupted by the many demands of the illness. It can take all of a family’s resources just to get from one day to the next. For the sibling of a child who has become seriously ill, it often means less emotional support from parents who are pushed to the limit.
In spite of these challenges, there is one recurring theme among our participants and their siblings; a deep and abiding love. “Kindred Spirits” reflects the compassionate caring these siblings share and gives this year’s participants a chance to be recognized for both their artistic accomplishments and the dedication of time and energy they have invested in making a better life for their ill brother or sister.
HUGS (Help, Understanding, and Group Support) supports families who are facing the emotional and financial hardship of caring for a seriously ill child. It is one of the few nonprofit organizations whose goal is to help every individual within the family.
Central to HUGS’s philosophy is the belief that families of seriously ill children can provide unique support for each other. HUGS seeks to create a network of peer-to-peer support by providing family events, peer groups, and other opportunities to foster these relationships. HUGS also offers scheduled respites, parents’ nights, teen groups for siblings, and the laughter wagon, which visits the pediatric wards of three O’ahu hospitals. HUGS strives to keep families together in the face of overwhelming adversity and to help them find community and support among others in similar circumstances.
On any given day, HUGS is helping hundreds of families across the state of Hawai`i. In the past ten years, the number of families asking HUGS for help has doubled.
2010 SUMMER INTERNS
Dezandria Cambra-Orpilla ~ 2009 Participant
Rachel Deliz ~ Community Volunteer
Tyler Holck ~ Punahou School
Caelan Hughes ~ La Pietra Hawaiʻi School for Girls
Alison Nichols ~ Punahou School
Macy Ring ~ Community Volunteer
Kalia Schuster ~ Punahou School
Devin Washington ~ Community Volunteer
Kelsey Yamanaka ~ Punahou School