Back on the Train

I don’t know what changed my emotional direction, but I’m back on the Down syndrome train!  I knew as with all things “this too shall pass” and that it was just a phase, but when you’re in the midst of it, you wonder how long it’ll be before you’re back to celebrating the joys and even embracing the challenges.  I’m back to that point.  Phew!  As normal as I know it is to feel frustration and disappointment at times, that doesn’t make it any easier.  For one, no one likes feeling that way in general, but then to feel that way about your own child, leaves you with this overwhelming guilt.  But I’m in a good place again and feeling good about my little amazing wonder, and watching her grow and develop and reach those oh-so-hard-to-reach milestones.  I’m back to celebrating. 

I had an interesting interaction recently.  I sat and talked with a woman who wanted to know how “bad” was Chloe’s Down syndrome (i.e., how high or low functioning she is).  She also talked to me about her “retarded Uncle, not Down syndrome retarded, but regular retarded” (yes, those were her exact words).  I know I probably should have used that as a teaching moment about political correct terminology, but I instead just focused on trying to educate her on how wonderfully lucky and blessed we were to have such a wonderful child.  But I also made it clear she’s not some stereotype of what people think Down syndrome is.  She’s an individual with individual likes, desires, dislikes. . . she’s happy and charming, but also a real live pain in the ass.  She brightens our LIVES, but also challenges us like any other child.  As EVERYONE who has a child with Ds knows, she’s more alike than different.  So I may not have “schooled” her on the correct terminology, but I think I did educate her a little on life with a very special girl who just happens to have Down syndrome.

 

As always, thanks for reading and sharing with us as we navigate our way through this amazing journey!