I'm a middle child and my siblings never seemed to be jealous of me over my skin. Maybe it's because I'm the middle child [img]http://www.ichthyosis.com/ubb/biggrin.gif
This post, as normal for me, is rather long, and I've brought up a few extra points. Take or leave what you want, and I promise I won't be offended. First off though, I haven't heard of anyone having twins with ichthyosis, let along twins where only one baby has it. That doesn't mean it hasn't happened, and I bet if you contacted F.I.R.S.T. at www.scalyskin.org
they could get you in touch with anyone that has had this come up.
My sibs are and were either very protective of me, or since they're younger than I am it's just something that's always existed to them. The younger ones haven't really questioned it other than asking how I handled being teased. I believe my younger sister's Grandma said "God made Chandra that way," which is a good answer for a lot of folks. But for my little sis, that didn't work very well and really upset her as she thought it was a darn mean thing to do to me!
Yes, there will be a day when David and Jonathan realize they're different, but frankly that day probably won't happen until another child or adult points that out to them and they (the boys) finally notice it being pointed out.
David most likely will be quite protective of Jonathan, even if he IS jealous. That's pretty much what happened with me and my older sis. She did beat up on me a lot, but by golly as far as she was concerned, she was the only kid allowed to beat up on me! Then again, David may not ever be jealous and maybe Jonathan will be jealous of him! There's no way to predict. I think the dual lotion idea is a good one, and in fact I've heard of entire families having a "lube time" where all parents and children put on lotion so nobody feels left out. This family has two children with ichthyosis.
In my opinion, it is ok for a parent to say they don't know the answer to a question a child asks as long as it's followed up with "and this is how we'll deal with it because it's healthiest for us, safest, kindest, etc. and so on." If there's not an answer that you feel you can give your child, then it's ok to say "I don't know."
I do think however, that for the children to learn what the condition is called, and to be able explain it in their own words is one of the best things you can help them do.
By the time your children are six years old and in kindergarten, or even much younger, they will understand when someone comes up to you or your spouse and asks what happened to Jonathan. Because people will ask when you're not around, your child needs to be prepared. The things people used to ask me before I looked physically mature were absolutely appalling, and they would never and have never dared to ask me as an adult.
You will be doing both Jonathan and David a great service if you tell the questioner to ask the child they want to know about. Also teach your children that they don't have to answer if they don't want to, as frankly, it's nobody else's business but your family and the children's health care provider, and eventually the children's educators. This goes for you too, you don't have to answer every Tom, Dick, and Harry's (or Harriet's question). One thing I do is carry business cards around with me I printed up on my computer. The front side says what the condition is, and has some of my top answers to questions like
1. No, I wasn't burned in a fire, it's Lamellar Ichthyosis
2. Yes, it's genetic, yes I was born with it
You get the idea. The back side has F.I.R.S.T.'s mailing address with a request for donations. Frankly, people get upset when you don't answer as they think they were trying to be helpful. They're not, they're just being nosy, if they truly were trying to be helpful, they'll donate to F.I.R.S.T. so more research can be done to find a cure or at least things to help our skin feel better!
Ok, how's that for a response? I'm sorry it's so long! I know it's overload in many ways and contains a lot of things that you might not have to think about for years, but on the other hand, when you're trying to get crying babies into the car and get home before the ice cream melts in the grocery bag, whipping out a business card and handing it to someone is really helpful!