‘My entire life, I witnessed a person with disability have a joyful life. No matter what her life looked like, it’d be a good one.’: Mom births daughter with Down syndrome after advocating for uncle

Read part one of Taryn’s story here.

“I cannot remember the moment I knew my Uncle Robert was different. As my mom’s twin brother, he was always around, so I am sure I just gradually realized he had some differences from the other adults I knew. Robert 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.’

The world then was harsh when it came to disabilities—there was no early intervention and options were limited. The common thing to do was ship people like Robert off to an institution. My Grandma Jean, although she was a single mother with six other children, never considered it. Robert was a part of our family—at every holiday, celebration, wedding, funeral, all of it.

Older man sitting on beige couch with hands clasped on chest — Courtesy of Taryn Lagonigro

We lived around the corner from my grandmother, so we saw them often. When she passed away in 1992, my mom became his guardian. My grandmother trusted my mom would do right by Robert, and she did not let her down. For almost 30 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 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.

Brother and sister walking on street with white limo in background — Courtesy of Taryn Lagonigro

The first time I learned about advocacy myself, without even knowing, was when my mom overheard some kids saying the ‘R-word.’ I was young, but she explained to me how hurtful this word was. From then on, I spoke up whenever possible and safe to do so. I’d like to think along the way, some people changed their language because of Robert.

After 38 years of knowing Robert and unknowingly learning from my mom, I heard the words, ‘Your baby will be born with Down syndrome.’ A far different diagnosis, yet one that thrust me further into the world of special needs. But I knew my daughter would be okay. The reality is Rhea has far greater chances in life than Robert ever did, but I know no matter what life would look like, her life would be a good one.

Uncle holding niece in leather chair — Courtesy of Taryn Lagonigro

For my entire life, I witnessed a person with a disability have a joyful life. I saw him feel all the things we all feel—grief, love, joy, anger, excitement. I knew from experience a person’s value in life is not based on grandiose achievements and material things. It is based on family, kindness, and love. My mom passed away this April, and 31 days later, so did Robert. Together since the womb, they were not meant to live apart.

It is after both of their deaths I have truly reflected on their relationship, and what having Robert in our family gave 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 having Robert in my life helped all those things.

Mom holding laughing and smiling daughter — Courtesy of Taryn Lagonigro

He will have forever made an imprint on my heart, and possibly countless others, and not everyone gets the chance to leave this kind of legacy. I miss them both so much but am so grateful for all they left behind, and take comfort that their togetherness transcends time. And when it comes to life, I know all you need is love.”

Family of 6 sitting on blue blanket outside — Courtesy of Taryn Lagonigro

This story was submitted to Love What Matters by Taryn Lagonigro of Caldwell, NJ. You can follow their journey on Facebook and Instagram, here and here, and on her website. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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