Julia & Lindsay

Julia & Lindsay

Newsworthy: Everyday acts of kindness. (1)

A new blog series highlighting the art of caregiving.

Photo narrative by: Lindsay Hyland

©Suzanne Fiore Photography

SFiore_LindsJules1BLOG-1024x683I 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.

SFiore_LindsJules12BLOG SFiore_LindsJules15BLOGWhen 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. 

SFiore_LindsJules11BLOG SFiore_LindsJules18BLOGJulia 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!

SFiore_LindsJules20BLOG SFiore_LindsJules26BLOGSFiore_LindsJules22BLOG SFiore_LindsJules28BWBLOG SFiore_LindsJules32BLOG SFiore_LindsJules33BLOG SFiore_LindsJules35BWBLOG SFiore_LindsJules42BLOGI 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!

SFiore_LindsJules45BLOG SFiore_LindsJules48BLOGSFiore_LindsJules49BLOG SFiore_LindsJules50BLOGHaving 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.  

SFiore_LindsJules51BLOG SFiore_LindsJules52BLOG SFiore_LindsJules53BLOG SFiore_LindsJules54BLOG 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.  

https://en.wikipedia.org/wiki/Willowbrook_State_School

SFiore_LindsJules58BWBLOG SFiore_LindsJules59BLOG SFiore_LindsJulesBLOG SFiore_LindsJules67BWBLOG SFiore_LindsJules63BLOGJulia 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?

SFiore_LindsJules61BLOGWalking 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. 

SFiore_LindsJules68BLOGGrowing 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.

SFiore_LindsJules71BLOG SFiore_LindsJules73BLOG 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.   

SFiore_LindsJules74BWBLOG SFiore_LindsJules75BWBLOG 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.

SFiore_LindsJules77BLOG SFiore_LindsJules78BWBLOG SFiore_LindsJules79BLOGOften, 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 are a sibling of an individual with special needs, please find information, resources, and support here.

If you’re a sibling in New York City check out sibsNY.

Comments
  • Anabel Flaherty

    This is beautifully done. Thank you for sharing and instilling hope in others who might be in similar circumstances.

  • WONDERFUL~~~~~As a Nurse caring for people with Dementia this story needs to be told.
    THANK YOU!!!!

    • I would like to say thanks to YOU in return Kitty – for all that you do. My grandmother had dementia and those who cared for her gave us all so much peace during a difficult time. Those caregivers are still part of our family. Also – my mother is a retired nurse and I think so highly of the work you all do! So, again, Thank YOU!