I know some remarkable people. I have written in the past about my friend Sheila Siegal. She is the first person I always think of when I think of remarkable people. You probably don’t know her name. She never aspired to be remarkable, but the she gave birth into the Down syndrome community to a remarkable girl named Lori. You can look up Lori’s story but Rachel would say Lori was “super-remarkable!” Lori was taken from us in her mid-twenties. Born with Down syndrome she lived with pulmonary hypertension until her body gave out. She did more in that 25 years and touched more lives then and in her death than most people could ever hope. She lived life to its fullest. She was my friend, and she was Sheila and Bruce’s daughter. They empowered her to live and in her death they have been the picture of grace, dignity, respect, service, education and they have made Lori live on through their generosity and work in the Down syndrome and organ transplant communities. Sheila and her husband are remarkable.
Since I started blogging I’ve written about some other remarkable people. Today, I want to share about the remarkable Sara Wolff. I probably brought Sheila and Bruce into the mix because Sara Wolff reminds me so much of Lori. Not the way she looks. Not even her mannerisms but her conviction to speak for people with Down syndrome. I knew Lori on a day-to-day basis. I know Sara just from brief encounters in Washington DC and through social media. I treasure the short times I spend with her. She has a kind heart and a kind face. She works. She serves on the NDSS board. She works some at the NDSS office. She lost her mom a few years ago, but her mom had already realized the importance of the ABLE Act for her to be able to achieve her dreams. Like Sheila and Bruce, Sara has not focused on her grief, but on speaking on behalf of individuals with Down syndrome. And oh, what a difference she has made. Her own Senator Bob Casey (D- PA) was one of the co-sponsors and leaders of the ABLE Act in the Senate. She and Senator Casey became friends and she has been invited to town hall meetings and to his press conference to talk about the importance of the ABLE Act. You may have seen Sara’s petition through change.org. In her testimony before the Senate Finance committee, she made the case why the ABLE Act was the right thing to do from a logical, heartfelt point of view of someone with Down syndrome. She is a role model for my daughter, Rachel. She is a role model for all of those with Down syndrome. She is a role model for those with disabilities. Sara Wolff is a role model for all of us.
Last night, Sara Wolff attended the State of the Union Address as Senator Casey’s guest. You may have heard that this is a bit of a tough ticket to get.
Senator Casey’s office posted pictures of Sara and the Senator doing the press circuit. Senator Casey also pointed out that he would be sitting with Congressman Ander Crenshaw (R-FL) and that they had worked together in bi-partisan fashion for the Sara’s and Rachel’s of the world. It was a pretty big deal as you can tell from Sara’s smile in the pictures.
Rachel knows Sara so I wanted Rachel to watch part of the State of the Union Address with me last night. I told her about Sara being there and explained what goes on. She wanted to know where Congressman Yoder and Senators Moran and Roberts were. Then she said in her “I can’t believe this” kind of way, “Where is Sara Wolff? Why are they not showing Sara Wolff?” I tried to explain and figured Rachel would say “I was shocked that they didn’t show her.” She had to take a report to social studies today on the SOTU so we printed off a couple of pieces about Sara Wolff being Senator Casey’s guest.
At the end of the night we didn’t see her, but it feels great to me just knowing that the remarkable Sara Wolff was there representing so many of us. Thank you Sara!