Newsworthy: Everyday acts of kindness.
A new blog series highlighting the art of caregiving.
Photo narrative by: Lindsay Hyland
I have three sisters. My sister Julia, who shares the middle with me, was born with developmental disabilities. We’ve always had a unique relationship as I had to learn how to communicate with her in ways that were different from how I communicate with my other sisters. When Julia sees me she comes right up to me, smiles, and says “Nose!”. This might seem strange to other people but this is Julia’s personal word for me. It’s her way of saying hello and I love it. When people first meet Julia, they might not realize that she is capable of showing love but it is these moments that have proven that Julia can make really wonderful connections with people, especially her family.
Julia loves her home and we often find ourselves spending time there. It might be just for a quick hello, or for lunch, or for an event that the house is having. The staff at the house will find any excuse to have a family gathering and I know Julia is delighted to have us all over to her home for birthday parties, holiday parties, and special events! I often bring Julia with me as I run errands. With our busy schedules, this is one way we can spend time together! I enjoy bringing Julia grocery shopping with me. She is such lovely company and helps make the most mundane activities fun! Having Julia take an item off the shelf and put it in the cart might seem like such a simple task but it took Julia many years to accomplish. Julia also really enjoys going for walks. We will usually take a nice walk around her neighborhood but we sometimes head over to The College of Staten Island Campus which is close to Julia’s home. It’s a lovely campus to take a walk through. It is also the old site of The Willowbrook Institution.
Julia was born just as Willowbrook was closing and I tend to wonder what life would be like for Julia had she been born 15 years earlier. Willowbrook was such an awful place and I always pray that we never go back to that. I wonder what it was like for the siblings of those individuals living in Willowbrook. Did they have the same fears I have for Julia? Did they wonder how their sibling was being treated? Did they even know how awful it was? Walking around this campus makes me think about all the hard work it took families to fight for a better quality of life for their loved ones. I can’t help but feel grateful to the individuals who helped shut down Willowbrook. Julia would never have grown into the amazing woman she is today if she had lived there. I am so grateful to those individuals before me who advocated strongly for programs to help support individuals with disabilities.
Growing up it was a lot easier to spend time with Julia as we were all under the same roof, sharing space and having fun. As we got older, and all moved out of our childhood home, including Julia, it got harder and harder to see each other as often as we’d like. Luckily, Julia lives in a lovely community residence run by AHRC about a ten minute drive from my house now. It’s really wonderful to see Julia living as independently as she can. The staff at the house continually challenge her and teach her new skills, as well. It makes me so happy to see Julia so happy. It’s a true testament to the hard work of her Direct Support Staff. They love my sister like she is a part of their family, and in fact, the house she lives in is part of our family too! Julia doesn’t just live in a house, she lives in a beautiful home with her wonderful roommates and support staff. I can never find the right words to thank them for all they do. Their job is not easy and they are terribly underpaid for all that they do in order to create the most amazing quality of life for my sister. I am so grateful to them all because I do not think I would be able to give Julia the same quality care on a daily basis. I am relieved to know that there are men and woman who have gotten to know my sister just as well as I have, if not even better than I know her, and this makes me very happy.
Often, after spending a day with Julia, she looks up at me and says, “wanna lay down? wanna go snuggle?” and this means she is ready to go home. To her home, not mine. And when I watch her run into her room and grab her toys I can’t help but think of how happy she is and how different life might have been for Julia if there weren’t many people who believed she had the potential to be where she is today.
If you’re a sibling in New York City check out sibsNY.
