Rachel’s Take on the “Cure”

This morning, like 49 other 8th graders at her middle school, Rachel trudged off to be a WEB (Where Everybody Belongs) Leader. She is the bright shining face the incoming 6th graders will see. They will look up to her as a leader, and the couple of 6th graders with Down syndrome will see a mentor for sure!  I’m pretty sure she’s the first person with Down syndrome to serve in this role at her school.  Way to go Rachel.

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Earlier this week NBC News ran a piece Could It Be a Cure? Pictures with Rachel and an interview with me were featured in the piece. The piece has garnered quite a lot of chatter. Someone wanted to know what Rachel thought about the idea of a “cure.” I said I hadn’t asked her. Part of the reason is because I just didn’t think most 14-year olds could cognitively process that question. Rachel knows she has Down syndrome, and she will tell you “I love my life.”  Someone told me yesterday, “Who wouldn’t love her life?”  True – she is blessed.  However, I decided to pose the question to her and she threw me for a bit of a loop.  She told us that she wished she didn’t have Down syndrome.  I clarified the answer. That’s not what threw me for a loop though. Her reasoning did.

“Why do you wish you didn’t have Down syndrome?” I questioned.  Rachel, “Because I don’t speak very well and it is because I have Down syndrome.”  Her father and I told her that her speech was fine and she speaks publicly and yada yada yada.  I thought that was the end of the discussion but I did wonder what had precipitated her thought process. Had someone said something to her? Most of her friends are able to tell me what she is saying and she is really good at getting you to understand. She has articulation issues but if she slows down, her intelligibility is fine.

The next day we picked up Savanna to head out for WEB leader training. Rachel is excited about school starting. Savanna not so much. Rachel told Savanna, “I’m kind of nervous about 8th grade.  I’m nervous about making friends.”  We had had this conversation the night before as well.  Savanna responded much like we had and said, “Rachel, you have a lot of friends.”  Rachel said, “I am nervous because I don’t talk very well and friends won’t understand me.”  Savanna looked at me puzzled and told her that she talks fine, and we both gave her encouragement.  She told Savanna, “It is because I have Down syndrome that I don’t speak well.”

After I dropped them at training, I found myself weepy. Something about the interchange stabbed my heart and threw me for a loop. I began searching for why this was bothering her so much at this point in time. She told us no one had said anything to her. Yesterday, we visited with her former para and she told the para the same thing she had told Savanna. Same encouragement from Ms. Stefanie.  Then she said, “It says in Just Like You that people with Down syndrome don’t speak well.”  I said, “Is that why you are on this kick about your speech?” She said yes and I proceeded to tell her that that is not what it says. It says that sometimes people with Down syndrome have a hard time speaking but people should listen and try to figure out what they are saying because they have important things to say.  We then told her that one of the reasons she was picked to be in the video is because she speaks and communicates well.  She smiled.

Last night and this morning, she prayed that she would speak well with the 6th graders. She told us that she was nervous because they might not understand her. We reminded her that she has spoken to big groups of people, has met Congressman, Senators, football and baseball stars, Mr. Bill Dance, auditioned for Disney and has been in 13 plays while many other people wouldn’t even get up in front of someone an say “hi.”  We reminded her that she was selected because she was a leader and a role model. We reminded her that we all need help sometimes and that if she needed help, she has two co-leaders to help.

She smiled really big and off to be a WEB Leader she went. With that smile, that attitude, that work ethic and desire, I am certain that today will be another amazing day in the life of Rachel and the incoming 6th graders.

By the way – wasn’t it Moses who told God, “I don’t talk so good?”(from Ken Medema’s, Moses.)

 

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