Taylor Carpenter is an eight-year-old who recently competed in the Special Olympics World Winter Games in Austria, earning a silver medal in dance. When she and her sister returned to school they were welcomed home with school-wide celebration and victory lap.
Taylor’s father, Michael, posted the video to Facebook, saying, “This is inclusion. This is community. This is love.”
“Words cannot express the feeling the love, the joy, the pride, the friendship displayed and represented in the video that represents part of Taylor’s school welcoming her home…celebrating her accomplishment, her journey, and most importantly her. To all involved in her life thank you everything you pour into her she pours into her life and into her dance.” Continue reading
On March 21 we celebrate World Down Syndrome Day. We celebrate uniqueness and joy and individuality. We strive for acceptance and respect for a group of people who are far too often demeaned, underestimated, and marginalized. Today I also celebrate Kaitlyn, whose far too brief time on this earth left a light that still shines brightly.
Kaitlyn passed away in December, 2013 after a brief battle with illness. She had Moyamoya disease, a little-known condition that can affect individuals with Down Syndrome. Her loved ones were stunned with grief, and it sent a shockwave through the local community. It seemed inconceivable that her life was taken so early. She was only 15 years old.
Kaitlyn had a lot to teach us about living and loving. She lived enthusiastically and joyfully. She loved unconditionally and freely without expectations or conditions.
Among her favorite things were the color pink, Disney movies, music, dancing, and her family. She showed those around her that true beauty lies in being, as her mother so eloquently put it, “Perfectly imperfect.”
This is Bill, and Bill is SERIOUSLY Not Boring. He is 50 years old (almost 51!), lives with his sister who is his loving caretaker, and his favorite things are his sister’s homemade cookies, his nieces and nephews, and Reba McEntire. Bill has Down Syndrome, and he has a lot to teach the rest of us about love and enthusiasm. Bill has some BIG feelings, and it is contagious.
I had the privilege of meeting Bill this winter. We were at a chili cookoff at our church, I introduced myself and we started talking. He started telling me about his nieces and nephews (he has their pictures in his wallet and proudly shows them to everyone he meets) and how much he loves kids. He told me that he would like to help and volunteer with the children’s activities at our church. I found it interesting he would mention that to me since I am not involved in the leadership of that ministry. I think now that it was divine intervention. I told him his idea sounded great, and that I would have to talk with his sister and the children’s ministry leadership and I would get back with him.
Then you know what I did? I am shamed to say, not very much. His sister agreed that he could help out and that she could bring him. I mentioned it via text or FB to a couple people involved with the ministry and didn’t receive a response. I don’t think they realized I was asking permission to move forward, OR they didn’t see my message. It was an incredibly busy time of year so I let the issue drop for a couple months. I didn’t want to overstep my bounds, and I knew that helping Bill get involved would take a bit of logistical work. I was worried that people would see that as an inconvenience (as an aside, that is exactly why a lot of families of children with special needs avoid church, because they are afraid their children would be seen as an inconvenience). I should have given more credit to my church and the loving people that are a part of it, and I should have followed through. Thankfully, I was given a second chance to give BILL a chance. Continue reading
Dear Father: I once watched you and your adult son, who has Down Syndrome, enjoying an outdoor summer concert together. I still think about that day, because I couldn’t stop staring at the two of you (but not for the reason one might think). The relationship you have with your son was one of the most beautiful, precious things I have ever seen. It brought tears to my eyes. I wanted to talk to you and your son so badly, but out of respect for you (and my husband, who gets embarrassed when I make a scene) I simply observed from a distance. But today, as I reflect on what I witnessed, you continue to have my admiration. Continue reading