We have all dealt with public scrutiny when out and about with our child with CdLS. Our challenge for today is to tell about our most memorable experience (good, bad, funny, or downright strange).
I have been giving this topic a lot of thought and trying to figure out what I want to say. We take Joey all over the place ~ baseball, football, and basketball games, the store, the park, and the homes of friends and family. He goes to school four days a week, horseback riding one day a week, and out to his private therapy facility three times a week. We had him to his first baseball game when he was about 2 weeks old. His schedule now is almost as hectic as his two older brothers.
Fortunately, we have not had any bad or ugly situations we have had to deal with. I know we do get a lot of looks when Joey is out crawling around everywhere or climbing on something or maybe fussing a little bit. Usually, people comment on how cute he is and ask his age. I know they expect me to say a few months old, or maybe 1 or 1 1/2, but when I say 4 years, we get a lot of raised eyebrows but no rude comments (so far anyway). One thing that sticks out in my mind is when Joey was a baby, we had Emma when Joey was only 10 1/2 months old. She was born six weeks before his first birthday. Needless to say, it didn't take long for Emma to get just as big as Joey and bigger. When we were at ball games or wherever, they would be laying on a blanket playing together, and we would get a lot of "Are they twins?" questions. I would smile and say "No, our son Joey is actually a few months older than his sister". Most people would just leave it at that and go on their way. Since Joey's diagnosis, we have always tried to let people know as much as we can about CdLS. Our friends, our children's friends, families of the teammates from our son's various sporting activities, and our family have always been very accepting of Joey. We are never afraid to talk about his condition, and we always encourage people we know to ask questions if they want to. Everyone is always really happy to see Joey (and his little sisters too!) and to find out what new things he may be doing. I feel if we are comfortable with our situation, then other people will be too. I am always very thankful for all the people that have come into our lives because of Joey, and the positive experiences we have had greatly outweigh any raised eyebrows or goofy looks.