Love, Loss and Resilience
March 21, is World Down Syndrome Day—a day to recognize, advocate for, and celebrate the rights, inclusion, and well-being of people with Down syndrome. But beyond the celebration, it is also a moment to reflect on the realities of life for those who live with Down syndrome, especially as they age.
I have had the privilege of walking alongside my brother, Paul, for his entire life. Born in 1972, he has defied the expectations set for him at birth. I am two years older than Paul and still vividly remember the day he was born. I was overjoyed at the thought of having a baby brother. When he didn’t come home right away, I was so mad that I threw baby powder all over the house. When he finally did come home, I was thrilled—I had a living doll. I dragged him around the house, dressed him up, and carefully placed bows in the few wisps of hair he had.
Paul’s life has been exceptional. He could be the face of World Down Syndrome Day, a testament to what is possible when people with Down syndrome are given opportunities and the right support. He is a refined and polite gentleman, highly accomplished, thoughtful, kind, creative, smart, and resilient. But beyond all his achievements, Paul sees straight to the soul of a person. He knows if you’re sad, if you’re genuine, or if you’re full of shit. There’s no pretending with Paul.
And yet, as much as we celebrate children and young people with Down syndrome, we often overlook the older generation. Their stories are left untold, perhaps because aging with Down syndrome is not just about accomplishments—it is about loss and grief.
“ Paul’s life has been exceptional. He could be the face of World Down Syndrome Day, a testament to what is possible when people with Down syndrome are given opportunities and the right support.”
I am posting a picture of Paul alone because, if it weren’t for me and my husband, he would often be alone. People leave Paul’s life at an alarming rate. They move on, they lose interest, they get fired, they get promoted, or one day they just never show up.
For 21 years, Paul worked at an organization with over 1,000 employees. And yet, eight years after he retired, not a single person from his working days remains in his life. They disappeared almost immediately, as if those two decades and countless celebrations of their inclusive workforce had never happened. As he has aged, and as health challenges have made life more difficult, it has been even harder for him to maintain the friendships with the peer group that he once had.
Like many people with Down syndrome, Paul relies heavily on paid support. When the pay check stops, the people disappear. Even unpaid community members, at first eagerly embracing Paul with enthusiasm, promises of friendship, and warm hugs, eventually fade away.
We live in a world that moves fast, a world where maintaining relationships takes effort even in the best of circumstances. I try to help Paul keep connections alive. I reach out, remind people, organize visits, and sometimes even forge friendships I wouldn’t otherwise pursue—because Paul deserves to have people in his life. And yet, more often than not, those efforts don’t work out.
These days, Paul has learned to guard his heart. When someone gushes, “I love you, Paul,” he responds with a simple, “Thank you.” He doesn’t say it back. And honestly, why should he? Love is for those who stay and we are a select few.
World Down Syndrome Day can highlight the beauty of inclusion, the victories of advocacy, and the incredible accomplishments of people like Paul. But we also need to have an honest conversation about what it means to grow old with Down syndrome. The reality is not just about milestones—it is about loneliness, about being forgotten, about grieving the constant loss of people who were once part of your world.
When will we talk about that?
