Vascular Birthmarks Foundation Forum - View Single Post - Question
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Old 08-15-2005, 02:37 AM
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Default Re: Question

Thanks for the advice it all makes sense, just hope we can follow the advise and raise him to be open and accepting of himself.* I can really see the benefit to education, especially with family.* We will need their support instead of comments that make us feel like we are blowing things out of proportion.* Some family members seem to think that this will just go away with time.* We will need to address the reality of the situation, though I dont want to get everyone worried about SWS or any other complications.* I need to prepare myself for the day someone comments in public, I feel so on edge with a look, dont know how to handle* comments.* It is amazing to me reading some of the other posts that people are actually that rude or lack understanding to make such comments.* I understand that people judge the unknown, but come on.* I will have to learn to take everything in stride.* I am a social worker by profession and have dealt with a lot of things and thought I was prepared for parenthood, but for whatever reason PWS was something I was not prepared for. Actually I didn't know anything about it and especially was unaware of the potential medical problems that could be associated with it.* We have learned one thing quickly and that is to question the doctors about everything, including why we are being referred somewhere.* I will not have blind faith in the medial field anymore.* I guess the more I educate myself the easier educating others will be and the more we can advocate for our child.* I am not really big on explaining the situation to everyone who asks, but on the other hand the more people know the more it will help our son.*

I hope that we can keep balance in our sons life so he can stay open with us about how he feels.* I worried about him growing up with depression before the birth mark now I worry even more. We live in a small community so people should get to know the real him.* I hope that helps them see him how we do.* *I liked the example with the hair color, seems like it would be pretty effective at getting the point across.*

On a completely different topic, do all PWS's spread or is what you see what you get with some.* I worry about his birth mark spreading down his face more.* It is getting darker, but does not seem to covering more ground, he is only six weeks old so it is a bit early but wondering if anyone knows?

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