Transitions & Finding Balance
By: Dorrie Pilot, sister of JFGH resident, Gillian (Gillie)
It’s hard to believe it’s been almost 20 years since I became guardian of my sister Gillian (Gillie). As the sibling of an individual with Down’s syndrome, I inherently knew that one day I would become her caretaker, but I was completely under-prepared when the time came abruptly at the very young age of 26.
Transitioning from sister to guardian, for me came with a heavy price. The sadness of losing Gillie as my friend, and stepping into a more parental role with all of the responsibilities and frustrations that accompany caring for someone with a lifelong disability still persist, but as the years pass by, I am learning (still learning) to accept my new role in her life, and consciously try to practice that role with grace, understanding, and lots of humor.
Before our parents passed away, Gillie and I enjoyed a friendly sister relationship. I loved her like a protective older sister, and thoroughly enjoyed our carefree interactions. Like many siblings of disabled children, I was and still am her fiercest defender, quickly giving the evil eye to any stranger who may have snickered or stared at my kind and sweet baby sister. Hearing the “R” word would send me into a tizzy. I had her back, and she had mine. We had fun together, played in the park together every night, went shopping at the mall, giggled, and truly enjoyed each other’s company.
That all changed when our mother passed away suddenly one August evening, and I was instantly thrust into full blown caregiver mode at the age of 26. How would I care for my sister? Would we live together? How would I work and still care for her? How would I date someone and care for my sister at the same time? How would I learn how to handle her finances? Make medical decisions? How would I marry? Raise my own family? Those were a lot of heavy issues for a 26 year old to think about. There was no plan in place in our family for her care after my parents death, one of my few true regrets in life.
By the grace of God we were put in touch with a wonderful Special Needs attorney and my legal guardianship was put in place. I’m pretty sure that is when I truly became an adult. I learned what it meant to be fully responsible for another human being. It’s also the time when our relationship transitioned from siblings, to more of a parent/child relationship. I became, in effect, her mother. And both of us resented it. Our relationship suffered. She was angry when I made decisions she disagreed with. I was angry that I had to make those decisions for her. We were suffocating each other.
Thank goodness we found JFGH.
It has taken 20 years of working on our relationship, and finding balance as a sibling and caregiver of a disabled adult, but today, Gillie is happy living independently at the Revitz House in the JFGH Apartment Program. Our relationship has transitioned once again to more of an adult child/parent relationship. Like many parents, whose children grow up, move away and become independent, I have learned to breathe and let go, with the help of some amazing counselors and JFGH staff, who I have learned to trust and appreciate with every fiber of my being. We work together as a team, to help Gillie be as independent as she can be.
With the support of the apartment program, I no longer feel overwhelmed. I am confident in my decisions. I married and had children of my own that I am able to care for. Gillie has lots of structure and supports in place. She and I have a respect for each other’s roles now. She is happy, she is independent. She is safe. She is an unbelievable human being.
And I don’t resent being her guardian, not for a second.
If you have a sibling story you’d like to share, please email BShapiro@jfgh.org.