Trying to understand

We are still not even a week out of our official diagnosis with little E but I am just struggling. I can't sleep, I can't focus, I can't stop worrying. Though I need to stop all this for the sake of my beautiful baby in my tummy. I am sitting here reading the blog I found of a mom who has a son with metaphyseal chondrodysplasia, schmid type, and just getting overwhelmed for many reasons.

One, because I am reading so many similarities of what I have seen with E this past year. We have been questioning/worrying about her walking since she was about 18 months. She didn't start until 15 months but just never seemed to 'get it right' and just have this waddling about her, and even the way her toes touched the ground seemed off. And she is starting to 'run' a little but it's just nowhere near the other running 2 year olds I see. She also still gets on her belly and scoots down the stairs, which I also don't see these kids doing. She has always just been so s-l-o-w. Just thought and assumed she is just a cautious person still workign on her walking confidence. And I never worried b/c I kept telling myself not to compare, as that is always the advice given to moms. But now I am looking back and all of these things are pointing to this disorder. Also how every time she fell (and even still sometimes) she lands face/head first. Likely because she just can't get her arms out and her head is disproportionately large to her body.

It's just, who knew? Who could ever suspect she has something so rare that affects only 200,000 people? I mean, really, what are the chances? I am just still feeling so sad and worried about the future. Not for me, not for my husband, but for my little E, and how the outside world will treat her. I know we will provide the best medical care we can for her, but it's the social part of this that is worrying me to no end. All parents worry about their children getting teased, and to add in a potentially socially unnacceptable trait, who can even imagine what will happen. I just want to shelter her from the world already and she's only 2. I have a lifetime of learning here now. This is going to be quite a long road. I just want my baby to be OK and be 'normal'. But I need to accept we may have a new 'normal' in this house.