Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

Big sister Kristy with little sis, Amy.

A happy marriage, healthy babies, a nice house and a great career – these have been my life goals for as long as I can remember. Throughout my teens and twenties I had very strong feelings about the qualities my potential life partner must have: kind and patient, love Disney and traveling, will never move away from New York, and most importantly, understand the relationship I have with my sister Amy and my role as a sib. Amy has intellectual and developmental disabilities, epilepsy and a mood disorder and my partner needed to accept the fact that she will one day be my sole responsibility. Despite this clear list of requirements, I never did meet the one during those early years. By the time I was 30 I had experienced great moments of growth, but also real moments of heartache, and so I decided to let go of my list, forget my concerns about being a sib, and just see what happens. Theoretically this was a solid plan, but in hindsight my attempt to separate myself from my sibling role led to me losing sight of myself all together. It was not until marrying the wrong person that I started learning the most important lesson of my life: in order to find happiness and live authentically I needed to figure out how to maintain self-acceptance, and to be honest about my own needs, without losing myself in the process or dismissing what mattered to me most. It was not long after this that I finished my master’s degree, took a solo 12-day road trip, initiated my divorce, found a new apartment for myself and my cat, and then, very unexpectedly, met Cory.

Kristy and Cory with daughters Emma, Brianna, and Hannah.

From our very first conversation, Cory and I each recognized there was something extraordinary about our connection. He also was divorced and had two children, and early in our relationship we found ourselves having quite an unconventional conversation, cautioning the other about the wonderful yet exhausting roles we occupy – mine as a sib and his as a parent. Cory argued that his role of parent was more intense and required more flexibility and compromise. I understood this, and agreed that there is no greater responsibility than parenting young children, but then noted the difference being that his role would eventually change. Typically-developing children grow up after all, and as they do it is only natural for the parent’s involvement in their lives to decrease as they begin to build lives of their own. When you have a sibling with disabilities, however, the sib role is unlikely to change, and if it does, it usually only becomes more complicated. Cory assured me that night that he understood. I took a deep breath, finding security in my honest transparency, and moved on from there.

Less than two years later we were married, and I officially became a stepmother. Not long after I became a mom to our new baby daughter, Hannah. The decision about becoming a parent is a very complicated one for most sibs. For me, the decision was both easy and terrifying. I knew I wanted to have a baby, but I had no idea how I was going to handle the dual role of being Amy’s sister and a mother. My biggest foreseen challenge was knowing that I would no longer be able to drop everything and go when called upon. I have always been the diplomat of my family and the one who could make it work where my sister was concerned. Albeit my practice of dropping and going was very problematic, it was how my family functioned and disrupting our process caused great concern. Self-care however was non-negotiable once I became pregnant, and then when our daughter arrived, her care became my highest priority. Establishing boundaries was extremely difficult, and witnessing the fallout was even harder. What I did not expect were the positive changes: the ways in which Amy’s new role as Aunt Amy gave her access to a type of independence and autonomy that she was never able to achieve before. These moments have been incredible, but without question I could not manage this emotionally and physically taxing rollercoaster without heavily relying on the support of my sibling community, and, most of all, Cory.

Aunt Amy with niece Hannah.

The Sibling Leadership Network (SLN), and our state chapter of SibsNY , have been my lifeline for more than 12 years. Whenever possible I share this great resource with Cory, but as a sib-in-law, his needs for support are often different than mine. The types of support a sib may need looks different for every family. For us, Cory may support me by being by my side while trying to manage a meltdown in the middle of a holiday dinner, or he may be the first responder and fielding calls from Amy after I have answered over 20 that day and cannot handle one more difficult conversation, or he might hang back at my request while I go address an issue, because I need to know I’m returning to a peaceful home and a consoling husband that is not equally depleted as I am. As sibs, we possess a certain skill set, a toolkit that sib-in-laws do not naturally have access to because they do not have a lifetime of experience behind them. Once they step into this role, however, they are alongside us, for all of the good and the bad, and they need support just as much as we do. Thankfully, there is now a private group on Facebook just for sib-in-laws, a safe space for sib-in-laws to gather together to support each other and share resources and ideas. This group is growing and will undoubtedly become a great resource as it progresses.

Over the years my list of life goals has certainly fluctuated, and I am very thankful for the pieces on my original list that have finally come together; happy marriage, healthy baby, and a great career. As I embark on my forties, there are a number of priority items that have now been added to this list: being the best role model for my daughter and step daughters, starting Hannah’s college/travel fund, securing a future plan for my sister, improving her quality of life while keeping the balance of my own, learning how to sew, becoming a better cook, having more quality time with Cory and our girls, continue practicing self-acceptance, and being honest about my own needs without losing myself in the process or dismissing what matters most. And to live authentically and keep sharing stories because there is nothing more powerful than the moment you realize you are not alone.