Jack was diagnosed with FXS a little over ten years ago when he was just shy of his second birthday. The first signal that something was up was his lack of talking. He still can’t talk, but he sure can communicate. Sometimes, we don’t even realize he can’t talk, we understand him so well. Jack has changed our lives and his sisters’ lives in so many ways. In some ways our lives have had more limitations than others (we won’t fly anywhere with him, we can’t go out as a family to places with too much stimulation, we had to evacuate the house recently when we lost power for three days), But, in many ways it has expanded our knowledge and compassion (how many elementary age kids can give their brother medication in the morning, how many kids want to be peer helpers and totally get kids with disabilities, and lastly, how many people will sing “Head, Shoulder, Knees and Toes” over and over again just to get a smile?). I can pick out his “EEEEEEEEEE!” out of a huge crowd and know he is near. I can go to the beach and be totally embarrassed because he takes his trunks off as he runs into the water, or be totally happy to see him run up and down in the waves. I can be mad at him when he throws his iPod out the window in frustration and cry when I see him try to put it back together and not understand why it won’t work.
The most recent thing that made me feel good about life was watching my nearly fourteen year old daughter play with Jack in the water park because she wanted to and not because she had to. She stayed with him instead of going up and down the water slide with her sisters. So, Jack may not be able to communicate verbally with us, and he does limit our live in many ways, however, he brings so many things to the family. My hope is that someday he understands how much he means to us and how much he has taught us.