re: re: re: Family (long)
Jun. 9th, 2005   7:10pm
Well there are two ends of the spectrum on this subject. You have families like yours that seem to go overboard and then the families like others that think we are crazy and over protective. I understand your need for normalacy when you talk about your son. I think it may still be new to them still, so give them some time to ease off. Maybe they still need to talk about it to get comfortable with it. From my end of the spectrum I have had a full family blow out at Christmas one year when my brother was throwing up Christmas Eve from some stomach virus, and inviting us over his house Christmas day. It is tradition that we go over his house Christmas day. SO, my choice to stay away from a house that was just hit by some stomach bug was unheard of. They were so upset that I chose not to come. They love my daughter too. You would think they could make that connection of love and wanting her healthy. Didn’t matter to them. That just tells me they didn’t respect CAH enough to understand, it could put her in the hospital if she got that stomach garbage. I was so hurt. I think as she got 0lder they understood a bit more. So embrace those that are over talking CAH. You won’t ever have to worry about them coming over your house, or inviting you over theirs if there is a sickness. Like I said, maybe they still need to talk about it. I would politely set them on track explaining your feelings about wanting everyone to respect CAH and know it’s boundaries, but to still realize life goes on normally and you want your son to grow up knowing that. That is what we have done from day one. A positive parent attitude goes a heck of a long way. My daughter will be 8 in a month. Never does she consider herself different. Just special because she is. As a matter of fact I just had a talk with her teacher about this today. She said you would never know she had a thing wrong with her. She is so resilient, positive, and outgoing. I said that is has always been my goal. To help her feel as normal as possible. Another thing we have talked about since she was little was how everyone has something in their life they have to deal with. Some wear glasses because they are born with poor eye sight. Some are born without legs and need a wheel chair, some need hearing aids and so on. She was born missing a chemical in her body that is needed to make it run smoothly. Sorta like gasoline in a car. We have talked about it just last week. I talk about CAH and what it is in different steps that she understands. At her age level. It has worked thus far. Last week we baked a cake. I said now if we didn’t put the eggs in, this cake would bake, but it wouldn’t taste just right. CAH is like that. You need that extra ingredient your body is supposed to make in it’s own. So we replace it with your Cortef and Florinef. Then everything works the way it was supposed to with that chemical. She got it. So it is all on attitude. I think you have a great one. Obviously you did your job in educating your family. That is awesome. They sound like they are full of love for your son. Now you just need to keep educating them by telling them to respect CAH, but letting him live his life normal. (Now girl, if you get a plastic bubble for him for Christmas from one of them, then you got a problem.) (smile) Of course I already tried to paten that myself !(wink) 
Laura
Rare Disease Search Engine, Homeschool Sites, Online Homeschool, Online Income, Ethical Adsense, Creative writing, Family Web Hosting, Christian Radio, Tulsa Parks