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Originally Posted by The Faba
Those who are in favor of having children have an argument that seems very self centered. They admit that the childs life will be more difficult, and have the mentality of thinking 'Well, that sucks, but just deal with it. If you don't like the idea that I'm risking giving my kids disabilities then you're not accepting of disabled people.' Thinking someone bitter for not wanting to pass on a disease is silly, at best, to me.
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Having a child is in itself a selfish act. You don't bring a child into this world for his or her own benefit. How can you make a decision for the benefit of someone who doesn't exist? You do it because you want to have a child and raise a family.
And really, that's what it comes down to. You're trying to approach this issue logically when logic has nothing to do with it. This is an emotional decision to make and what it comes down to is that you have to weigh your desire to have a child against your fear of the child being born with HED. The shitty part about all this is that if you decide to do it and the child does have the condition, you're going to regret it; but if you don't do it, you're going to regret it too. You're always going to wonder what might've been. The only possible outcome that will leave you emotionally in the clear will be to have a child who doesn't have the condition. Since you've already stated that you're against the alternatives (adoption, IVF, selective abortion), that would mean taking the risk.
I'm not going to sit here and make a list of reasons for and against having a child. For one, it'd take more time than I care to commit to this and besides that it's really something that you're perfectly capable of doing for yourself. What I am going to suggest is that you need some perspective on this illness. It's the focal point of your decision-making right now and you have to deal with that, one way or the other.
I stated my opinion in
this thread, but will state it again. Knowing that you are most likely a carrier, you and ratbastid both need to be 100% certain that if you have a child with HED, you can cope with it. Basically, take a moment and, as an exercise, assume the worst. Assume that your child
will have this disease and then do some soul searching. Don't try to rationalize or weigh pros and cons, because this isn't a rational decision. Just really ask yourself if you still want a child and then listen to the answer, without the need for justification. If you decide yes, then you can proceed with an optimistic outlook, knowing that the odds are in your favour and that even if the child does end up with HED you can deal with it.
Also, this is really something you and your husband need to discuss. This is not a decision that's made by committee, because nobody here will be raising the child (affected or not). You two together need to be okay with this, one way or the other.
I'll leave you with one final point to ponder. I never did have the pleasure of knowing your brother, but from what you've said of him I gather that he enjoyed his life. If he were to weigh in on the issue, what do you think he'd say?