A wise woman who has a son with special needs once told me that there are good days & days when you just wanna bury your head in the sand. And there were not more true words ever spoken about having a kid with different needs.
Tonight as I sit here I just wanna bury my head in the sand. I'm having a hard time with friends having NT scans and ultrasounds that show things that are considered soft markers for down syndrome. I'm not having a hard time with them grieving. I'm not having a hard time consoling them during what is an incredibly difficult waiting period.
I wouldn't wish for anyone to have a child with down syndrome, but only because of the extras. The extra dr appointments. The extra worry. The extra "what ifs". Yes yes. I love Sean no matter what and they'd love their little one no matter what as well. And what I know now about down syndrome helps me to embrace it. It has shown me that Sean would probably be just the same kind of little guy he is now if he only had 46 chromosomes.
Having said that, I'm having a hard time with other people's response to the news. Other friends saying "thoughts & prayers", "I'm so sorry". Things like that. Why can't other friends, who now know that kids with down syndrome are more alike than not, just say things like "it's not ideal, but it wouldn't be the end of the world" "Look at the amazing things he can accomplish" and things like that instead?
It lets me know just how alone I really am in my circle of friends. That even though people can be happy that Sean has had a lot of achievements, they still wouldn't want someone like him for a son. It will never matter how many achievements Sean has. It will never matter how awesome Sean is. Most people would never want a kid like him.
When we found out, a lot of people told me that kids choose their parents because they know who can take care of them. I guess Sean picked well. We love him and wouldn't want him any other way! Even with the extras.
I really feel desensitized to Down syndrome. I feel like it really would be no big deal to hear the diagnosis. However, as you say, there are a lot of 'what-ifs' but that is with any pregnancy. Hopefully people see our children more and more and can become a bit desensitized as well. Sean really is doing so well and is so adorable. I am happy things are going great for your family :)
ReplyDeleteI know what you mean. It's kind of a slap in the face to hear the people you thought embraced your son as fully as you, now acting horrified that someone else may fall in your shoes. Sigh.
ReplyDeleteOn the flip side, I remember very clearly when an acquaintance held Eon as a baby and declared, "Oh, I so want another one!" She didn't care that he had Ds, to her he was a baby and that was a desirable thing, no matter how many chromosomes he was sporting. It made my week!
Some people get it. Some don't.
I truly feel like in my heart if that's what God chose for my future child one day it would be ok! Sean has taught me that, really. I love Sean!!! I will love any child God chooses for me one day
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