Wednesday, September 12, 2012


Today when Jacob was done with his warm water therapy, and we walked through the gym, we saw a familiar face. It was Jacob’s friend Alyssa from last year. She was so happy to see Jacob! She didn’t really know what to do with herself! She hadn’t seen him all summer long. It was so good to see a familiar face, who knows how to best interact with Jacob and doesn’t think twice about the fact that Jacob might be different than she is.

The question “what’s wrong with him?” is a question that we get a lot at the beginning of each school year. The first couple of times it really hits me in the stomach. It is a complete reality check of how the world looks at Jacob. They see the differences in Jacob that we have gotten so used to that I don’t even think about it any longer. It is part of who Jacob is, and we roll with it every day.
After that hit in the stomach, I realize that the question is very innocent. It is a question of curiosity. It is a kid who wants to understand Jacob. It is not a child, who wants to hurt Jacob’s or my feelings. But how do you best answer that question to a 5-year old kindergartner? You can’t really start talking about mitochondria. God knows that I was blown away the first time someone brought up the topic of mitochondrial disease with me. It is not the coolest kindergarten topic!
So, we have learned that the best way to bridge the topic is to say something along the lines of: There is nothing wrong with Jacob. Jacob was born this way. This is how Jacob is. Jacob is different from you in many ways. Do you have any questions about the things that are different between Jacob and you? And oh boy the questions flow! Can Jacob get out of his chair? Can Jacob walk? Can Jacob talk? Why do you put a tube down Jacob’s nose (when we suction him)? Why does Jacob eat with a tube in his tummy? Why is Jacob wearing a diaper? Why are Jacob’s muscles not as strong as mine? When all the basics have been covered, we can move on to more fun questions like: How does Jacob communicate with his buttons? Can I help Jacob with his buttons today? What is Jacob’s favorite color? What does Jacob like to do on the playground?
The two things the kids are stuck on this year are the fact that Jacob is wearing a diaper, and that his weak muscles don’t let him walk and do so many other things most kindergartners take for granted.
As long as we can have an open dialogue about Jacob with the kiddos, Jacob gets so much in return. Most kids realize he is a great buddy to have. On his second day of school, one kid couldn’t help himself, but ran up to Jacob and told him how much he loves him! One kid saw Jacob outside of school at the playground. He had to announce to the whole class that he had seen Jacob outside of school, and that they live close to each other! Today, we were late for school (mommy’s fault), and Jacob’s entrance to the classroom disrupted the whole class, since everybody was so super excited that Jacob had come to school, and that he had remembered to bring his cool communication buttons!
The questions still hit me in the stomach once in a while. But I am also very happy that I have come to a comfortable place with Jacob when these questions are as much part of starting off the new school year as having a health care plan in place, and school supplies stocked up. I can also not say enough about Gemma’s role in establishing Jacob in the classroom each year. She is super comfortable to have these conversations, and explaining it all to the children. She is enabling Jacob to make friendships over and over again. It always ends with a win-win situation for Jacob and his classmates.


  1. You are so cute and it's totally understandable that this question sometimes hurt you. But that the kids actually do ask and are interested is a great, great sign. It means they care and obviously they do. So cute that that little boy told him he loves Jacob. And I think I told you this before, but what Jacob (and also Gemma and you) give to all his classmates is priceless. They learn how to care, how to see another child for who they are and not what they can do or can not do. They will always remember and when they meet another child like Jacob later in life they will know how to communicate, how to ask questions and how to play and accept the child for who they are. It is a gift Jacob gives them (and has given us) no school, no teacher, no parent can give them. I am thankful and happy for all those kids who get to spend a year with Jacob in a classroom. And Bal Swan is such a great environment to host these relationships. (-;

    1. Thanks for reminding me of the experience of the other children as well. I see it myself in Sarah all the time. Bal Swan is a wonderful place! We're looking forward to seeing you all Saturday!