I suppose I have been advocating for people with Down syndrome since before Rachel was even born. Receiving a prenatal diagnosis gave me months to learn and prepare for our adventure. Over the years, my views and philosophies have evolved, shaped by experience, advocacy, and the ever-present desire to create a better world—not just for Rachel, but for all individuals with Down syndrome. While I have always advocated for policies and programs that would benefit Rachel, I have always strived to understand and champion policies for the greater good. I have often prayed I was doing the right thing.
Looking back, it is fascinating to see how our convictions shift and how certain moments still take us by surprise. Inclusion has always been at the heart of our mission for Rachel’s life. We have wanted her to have the same opportunities as her peers, for others to presume competence, and for her to be seen for who she is. Yet, even now, as an adult, Rachel continues to amaze me, causing me to pause, reflect, and celebrate.
Rachel loves her job at The University of Kansas Health System, where she has worked for almost three years. When I drop her off or pick her up, she often comments, “The flowers look so pretty. I’m so proud they take such good care of our hospital.” She beams with pride when talking about her workplace—it’s not just a job to her; it’s a place where she belongs.
Rachel has always been generous and thoughtful, especially when it comes to birthdays—both hers and others. Like many people I know with Down syndrome, she celebrates her birthday year-round, but she also makes a point to honor the birthdays of those she loves. This year, she was especially excited about my birthday. She texted friends to share that she had bought me roses because, in her words, “She deserves them.”
But what made this gift even more special was how she bought them. Rachel purchased a beautiful bouquet of roses from the hospital gift shop—the same shop where she often buys cards and small gifts. The staff know her well and are always kind to her. When my husband commented that the flowers might have been less expensive somewhere elsewhere, I did not hesitate in my response. Yes, they probably were, but that wasn’t the point. Rachel experienced pure joy in making this purchase independently. A co-worker of mine put it perfectly: “It was where she had access. She did not have to ask her parents, a friend, or anyone else for help. She did it on her own, with her own money, at the place where she works.”
Rachel takes immense pride in her job and all that comes with it. When I paid holiday is around the corner she will say, “I do not have to work Monday! It is a holiday, and I get paid.” While she still struggles with money concepts, she values her paid time off and holidays just like anyone else would. She proudly tells others about her advocacy for the ABLE Act, how she opened the first Kansas ABLE Savings Account, and how she contributes to her ABLE account every month.
I shouldn’t have been surprised by her excitement over these things, yet somehow, I was. Her joy in being able to give gifts, her appreciation for paid time off, and her pride in being paid just like everyone else —it all felt like a full-circle moment. We have always expected her to be included in every part of life. And yet, here I am, feeling an unexpected and wonderful “aha” moment. Experiencing my own daughter value the very things I’ve spent over 25 years advocating for—that is the true “aha” moment.
Rachel’s independence is growing, even in a world where she still relies on us or others for support like transportation. But this? This was hers. And that is a beautiful thing to celebrate.
