Until you have a special needs child, I don’t think you can ever really appreciate what a gift it is. I hate to hear when this happens. Would anyone ever do that knowing in all honesty that doctors are wrong a lot of the times?

But I know a lot of people are ignorant and don’t put themselves in other’s shoes (not that it excuses it). I read a story in my child development book about a woman who had previously figured she’d abort a child if she knew beforehand it had down syndrome or something of the sort. Well when it came down to it, her child was in fact at risk for having down syndrome. Her feelings were definitely not the same once it actually happened to her…that was her baby after all.

Sad stuff :/

Oh, yep, I get it too!! People are SO horrible. I always regretted NOT having an amnio, because for us it would have been the difference between watching our baby almost lose her life and working for years to get her back…or have medications, therapies, etc ready and waiting for her. Instead my child suffered and I still have horrible guilt about that. Sadly though, people respond as though they’ve just tasted bile. “you would have kept her?? knowing she would suffer all of her life??” I always respond “do you see that adorable blond girl who loves life and people? Do you see how happy she is? How could I have made such a decision, she was my gift”

How could you have possibly made that decision with that sweet precious one you named Laelia?!! Jason and I talked about the “God thing”. Early on Jason wanted to know how God could have done this to our baby. At the time Jason was not a Christian, and I was a loss for words, but I knew that her disease was not punishment from God. Then the words came to me..”he didn’t do this to her, he knew she was going to have problems and issues and he CHOSE us, he knew we would love her, that we would have community support and the love and support of a large family, HE knew she needed us.”

Stupid people will always be there…”Have you taken her to a doctor? Doesn’t that cough sound horrible to you?? It sounds like she needs medical attention!” (sigh) I just smile, and ignore it now. If people are rude enough to say something like that, they won’t understand her illness. Instead to my short information about Cystic Fibrosis they say things like, “oh I’ve heard of that, they outgrow that as they get older” or “wouldn’t it be better if she were at home resting, I heard they die really young” Or “I’m sorry how long is she expected to live?” Stupid people.

Wow. In my circles, the opposite would be more than true. After all, we don’t live in Gattaca.