Thoughts of how my life could have been easier...

I try not to feel sorry for myself, I'd like to think that we're given things in life that we can handle. So I handle Hip Dysplasia, I handle sleepless nights, I handle 10hour trips, and for the most part I handle the stress, and the What IF? I think I handle this in stride because I have such a GOOD baby, which somedays I don't realize until we go out to eat or are out in public and complete strangers, anywhere from a "thug" looking kid, mothers, and men with hairy beards come up to tell me how cute and well behaved she is. Which amazes me because I thought that is how all babies are supposed to be. But my daughter is so sweet to me, so cute, and happy...which is something you wouldn't expect when she sleeps in a hard restricting brace that I can't image being comfortable in.
My thoughts on how life could have been easier certainly includes Blair never being born with HD but becuase that is the cards we have been dealt I like to think about things that could have made our life easeir. First of those being someone who would put their emotions aside and listen to the doctors because to be honest the first 3 doctors I saw I can't even remember what they said, it was all a cloud and crying.
Second I wish someone would make higher neck turtle neck onsies so the harness wouldn't have scraped her neck and socks that are soft and stay in place so that her legs didn't get scraped.
One thing that I was so jealous of were mother's that got to wear the front packs, we weren't able to because of the pressure it would put on her hips. So I wish someone would invite some other way that a HD baby can be carried.
One other important thing that we missed out on was swaddling, because Blair's legs needed to be open as wide as they would go we couldn't swaddle her. I should have made something that would swaddle the top half of her.
I also wish the U/S and x-rays were easier and faster and came out right the first time. I wish there was a book that told everything you needed to know about HD that wasn't written in the 80's and that would address feelings.
I wish people would just listen and not try to tell me "everything is fine" "look at her she looks fine" or the latest "she's walking so how bad could it be?" Until you have a baby with HD or something similar you DON'T know what it's like, walk a mile, or even a night in my shoes and see how it feels.
And lastly for my rantings today is: Hello it's 2010 you'd think they could make a better brace that doesn't have a hard plastic back that is too small, and maybe 1/2 sizes since all babies don't fit into S, M, or L...