By Taryn Lagonigro
My mom had a twin brother named Robert who was born with a developmental disability - possibly from a prenatal illness. This was 1951, so it would be years before he would have any sort of diagnosis, which back then was “mental retardation.” I cannot remember the moment I knew my uncle was different. We lived around the corner from my Grandma Jean, so we saw them often, so I'm sure it was just a gradual learning that he had differences from the rest of the adults I knew. When my grandmother passed away in 1992, my mom became his guardian. My grandmother trusted that my mom would do right by Robert, and she did not let her down.
Back then, the world was harsh when it came to disabilities. The common thing to do was ship people like Robert off to an institution. My grandmother, and then my mom, never considered it. Robert was a part of the family, at every holiday, wedding and celebration.
The first time I learned about advocacy, without even knowing, was when my mom overheard some kids saying the “R” word. I was young, but she explained to me how hurtful that word was. From then on, when possible, I spoke up. Our family and friends all knew Robert, so I’d like to think that along the way, some people changed their language because of him.
For almost thirty years, I watched my mom be an advocate. I watched her sit on regular calls with local agencies, fight for aid and support for Robert and ensure he was being well cared for. There were times Robert lived with us, but most of the time my mom got him into assisted living complexes where he could have a social life and thrive. She made sure those places were within driving distance, so that she and my dad could pick him up every weekend. She got him a cat, paid for trips and made sure his life was a happy one. He loved Elvis, baseball, giant coffees, a cold beer on the porch and joking around with my dad. He greeted everyone with a smile, asked them how they were, and often asked how their mom was doing, even if he never met her.
My mom's advocacy was something I admired most about her, and I never knew I would need to be one myself, but in October 2019 I learned Rhea would be born with an extra chromosome. All of those years of observing my mom and learning that the world is more than neurotypical people would lead to me raising a daughter with Down syndrome. While I am learning as I go, I am grateful for the foundation that learning from my mom gave me.
My mom passed away this April, and thirty-one days later, so did Robert. Together since the womb, they were not meant to live apart. It is after both of their deaths that I have truly reflected on their relationship, and what having Robert in my life did for me. I think about what my life would be like if Robert had not been there or if my mom or grandmother did “send him away.” Would I be as compassionate? Would I be as understanding of people different than me? Would I so willingly have welcomed a child with Down syndrome without a second thought? Maybe…but I know that having Robert in my life helped all those things.
I haven’t worried much about who will look after Rhea someday, because outside of hoping to raise her to be independent, I had the fortune of being raised by a woman who went above and beyond as a sister. I’d like to think some of her is in each of my older girls, and that they will know what to do just like she did.
Robert and Rhea do not have the same diagnosis. The reality is that Rhea has far greater chances in life than Robert ever did. However, for my entire life thus far, I witnessed a person with a limiting disability have a joyful life. I saw him feel all the things we all feel – grief, love, joy, anger, excitement. So, when the doctor said, “your child will have Down syndrome,” I knew that she would be ok. No matter what life looked like, her life would have value because I knew Robert’s had value. He will have forever made an imprint on my heart, and possibly countless others, and not everyone gets the chance to leave that kind of legacy.
The Beatles song Blackbird (one of my mom's favorites) reminds me of Robert. He was given a body and mind with many limitations yet he did his best with what he had...and he gave people the best.
“Blackbird singing in the dead of night, take these broken wings and learn to fly. All your life, you were only waiting for this moment to arise.
Blackbird singing in the dead of night, take these sunken eyes and learn to see. All your life, you were only waiting for this moment to be free.” I miss my mom and Robert immensely, but am grateful for all that they gave me.
Portions of this article were included in an article published by Love What Matters. That article can be found here.