What is CdLS? How do you get it?
CdLS is a random genetic disorder. Neither Steve or I passed it down to David, but for some reason one his chromosomes mutated and this caused the syndrome. Our chances of having another child with this syndrome are less than %1. Anyone has a %3 of having a child with special needs.
Do you get upset with people who stare or make rude comments?
By and large we have VERY positive interactions with strangers regarding David. I have only had one person who was truly rude. She was a clerk at Target and she stared at David with a disgusted look on her face and asked me what happened to him. In hindsight, I thought I should have told her that he was waterskiing and the rope got caught around his fingers and pulled three of them off. Then get a little misty-eyed and tell her we never found them in the water. But really, most people are incredibly gracious and loving. Sometimes people stare too long and I get a little annoyed. It natural to look, David is small for his size and has a deformity, of course people will take a second look. The best thing to do, to show respect, is to look at the person with the disability, smile, then look at the caregiver and smile. I hate it when people stare at David but won’t make eye contact with me–maybe they are afraid, but it comes across as disrespectful.
Does Matty know his brother is different?
So far he hasn’t seemed to notice. He gets annoyed with David just like siblings do. He is protective of David (which is unusual for a younger brother) but mostly he just sees David as David. This will change I’m sure as Matty continues to mature. We want to encourage Matty to accept David for who he is and not to be ashamed of having a brother with special needs. At the same time, we realize Matty needs to have space and time where he can be himself.
Did David have a Nissen Fundoplication during his G-tube procedure?
No, we almost did a Nissen about 2 years ago, on the reccomendation of David’s GI Doc. When we met with the surgeon, she felt it wasn’t necessary since his reflux was under control. He takes Prevacid to control the reflux and is on a lactose free diet (except for the two bites of ice cream we shared with him last night!!)
If you had Matthias before David, would you want to have another child so that your last pregnancy would be a positive experience?
It’s hard to say since I experienced my children in this order, but I can say that after David was born I wanted to have another child ASAP. I felt like I missed out on the joy that surrounds the birth of a baby. With Matty we had the “typical” experience. We’d like to have another and hopefully things will go smoothly. I think every family has to decide for themselves what works for them. Having another child after a child with special needs in no way replaces the first child but it can be a healing experience.
Will David grow more fingers? (Usually asked by children 7 years and under)
We don’t think so, but hey, God can do anything, right?