Pat Stewart, as shown above with his son, Ryan, shares his thoughts about being a father to his two sons, both of whom are living with a developmental disability.
The most wonderful thing about being a dad to Aaron and Ryan is enjoying the unconditional love and innocence that they give on a daily basis. It is hard to express the emotional bonds I have with my sons. I always want to be with them. Not knowing what the future holds for them is most difficult. I am not able to control what happens to them as adults, particularly after Diane and I pass on. That is the single greatest stress I have each day.
When Diane Stewart contacted me and inquired about my project and possible collaboration I was immediately captivated with her family’s story. Diane and her husband, Pat, have two sons. Aaron is 21-years-old and aging out of high school in May, and Ryan is 18. Both boys have cerebral palsy, use wheelchairs, need maximum assistance with all personal care with the exception of feeding and are on the short term waiting list for a Medicaid waiver. The first time I photographed at the Stewart home my goal was to document their evening routine knowing that this would provide the opportunity to capture compelling shots of the challenges Diane faces in caring for her sons. I photographed Diane single-handedly getting these strapping young men, who are twice her size, fed, toileted, bathed and dressed for bed. To say that I was amazed at her abundance of energy, patience, physical stamina and playful demeanor is an understatement. This past weekend I returned to capture the morning routine and to create a family portrait. After many attempts to get all four of the Stewart’s to look up with flattering expressions, Aaron and Ryan tired of this tedious undertaking and started to joke around. Not knowing whether I had captured a good family portrait, Diane and I viewed the images on the LCD screen on my camera. When we got to the family portrait I posted above we simultaneously blurted out, “That’s it!.” This image embodies the spirit of the Stewart family. Although the Stewart family story is one of unimaginable demands it is also a story about love, joy and the ability to make the best out of a very challenging situation.
Yesterday was a cold, blustery, winter day that was predicted to produce icy roads and possible flurries. While some school districts closed and many offices delayed the start of the day, business proceeded as usual at the Capitol. I was asked by Dawn Alford, the Acting Public Policy Director at the Georgia Council on Developmental Disabilities to testify at a legislative committee meeting about the need for increased funding for more Medicaid waivers to support persons living with a developmental disability (DD). I had the opportunity to speak to legislators about my project, Real Stories, Real People, and present several of the photo essays. This is the time to voice your support for funding to support people with DD. Please contact your State Senator and Representative and ask them to support funding for the following:
Unlock the Waiting List Ask – $16,493,000 for 1000 NOW/COMP Waivers for FY 2016
Supported Employment – $ 1.96 Million for 250 students leaving high school to secure gainful employment in an integrated work setting
A link on my website will assist you in identifying your legislators and provide you with contact information at thttp://www.realstoriesrealpeople.org/how-can-i-help/