Thursday, October 31, 2019

30 Stories 30 Faces 30 Years: The Guzzo Family

“Intangible” sums up what CCA means to our family. One can’t put a price on what we get from CCA: Family, friendship, understanding, support, knowledge, camaraderie, and unconditional acceptance.

                  --Paula and Bob Guzzo, caregivers to their son, Scott

The Guzzos -- Paula, Bob, and their son, Aaron -- are the ultimate, three-member caregiving team. Watching this family create an ecosystem of support, opportunities, and life-enhancing love for their son, Scott, is something that must be experienced. Seamlessly,  
the Guzzos waltz into all kinds of spheres, make the space their own, putting everyone at ease, while simultaneously elevating Scott, age 36, to be his best self. And they do it all with dignity and grace many of us only experience through yoga teachers, pastors, and priests. Though their actions may appear easy, Paula assures us that all three of them, Bob, Paula, and Aaron, are “Calm on the surface, but paddling like crazy underneath.” 

Sassy Moms' Club at Annual Retreat 2019
Family Advocacy work with the Governor of Indiana

Paula and Bob were tireless advocates from the very beginning, researching each and every diagnosis that Scott was given in hospital and pharmaceutical libraries they had access to through their employers during the mid 1980s. They went on to fight to get Scott into an inclusive classroom, in the same school as their younger son Aaron, in their hometown of Evansville, Indiana. Much of their educational and Individualized Education Program (IEP) journey was documented in a series of informative blogs, published on the CCA Kids blog in October 2013. The posts are chock full of insights and ideas that only the Guzzos could create thanks to their taking a critical eye to interactions with school, local, and national government officials. At the end of the second blog in the series Paula says it well, “Please do not read this and feel sorry for Scott or us. Instead, celebrate the victories and know that one person, one family, can and does make a difference.” And boy, have the Guzzos done that for their son and for many other children across the country!

Cher Crewz 2018
Paula, Aaron, Bob, and Scott

Scott, born with what was initially an unnamed condition, was later diagnosed at age 11 with Crane-Heise syndrome. The extremely rare syndrome with only 10 known cases to date, affects his face, skull, and other parts of his body. He depends on help from his family and care attendants to see him through each day. Nevertheless, Scott has an indomitable spirit, a spit-fire wit, and impeccable taste in music. Paula says, “Scott embraces life and celebrates EVERYTHING—all day, every day! He is joyful. Scott is nonjudgmental (mostly) and accepting. Scott’s faith is unwavering. He is bold and kind at the same time. He leads us in those areas.” Unsurprisingly, Scott loves to attend concerts and works at the Evansville Ford Center as an usher. He loves snapping pictures and traveling to new destinations as his busy schedule allows. 

Caretaking, at any level, is hard work for the family of a person born with a craniofacial condition. “As parents, we try to delicately find the balance of shielding Scott from life’s cruelties while at the same time sharing him with the world,” says Paula. The devoted couple somehow make it a priority to carve out time for themselves, too. A healthy relationship is the bedrock upon which their family ecosystem is built. Without the love, faith, and trust that Bob and Paula share, the beautiful life that Scott enjoys would not be possible.

Celebrating Scott's Birthday last year 

While the Guzzo family redefines normal in a way that works for them, their approach to life works for all of us: “We look for the joy in every day and know that tomorrow is a fresh new one.” Over the years, Paula appreciated serving on CCA's Board of Directors, and the family enjoys continuing to represent CCA at acceptance-raising and fundraising events throughout the country.

Thank you Bob, Paula, and Aaron for all that you are and all that you do. You are a powerful example for so many CCA caregivers, and indeed, the care you’ve given our own organization has helped us grow, too.
New Parents, Bob and Paula, hold their newborn in 1983

November is National Caregivers Month. Please help us celebrate the caregivers in our lives and community!

--Kara Jackman

No comments:

Post a Comment

We welcome and encourage all readers to post feedback, however, we reserve the right to remove any comments that are deemed offensive or unrelated to the topic of discussion. Thank you for understanding and for helping us to foster a healthy environment for the families that we serve.