Like most parents dealing with the unexpected diagnosis of hip dysplasia, not knowing anything about the condition I went right to google as soon as I found out. What was this condition my little girl had, what do I do about it, what is the long term prognosis, how am I going to deal with a baby in a harness/cast/brace? So many questions were swirling around in my mind.
What I discovered was that there were a lot of other parents out there dealing with the same situation...and so I spent a lot of time chatting with folks on some of the message boards and hip dysplasia groups out there. There are a lot of folks who are so compassionate and caring and giving of their time to answer all the questions of a newbie to hip dysplasia and to them I owe a LOT! Those groups provided a lot of support and advice at a very uncertain time in our new parenting lives!
I have become kind of jaded lately. We are now half way through our spica experience and baby, baby's daddy and I are much more comfortable and confident in our situation now than we were at the outset, so we have settled into life with hip dysplasia much more reassuredly. I still visit the message boards in search of new tips and tricks, but also to chat with those newbies just dealing with a recent diagnosis as I remember all too well how frightening that was, how scared we were and how we just needed a little reassurance. What I am dismayed to see are all the fear mongers and argumentative folks that exist on these boards. Parents seeking advice are given it, but some of it comes in negatives. Want advice on something -- one parent will say one thing, then another chimes in about how wrong the other parent is and what the more sensible solution will be.
The other ones that irk me are those who disparage the advice of doctors. Maybe I am spoiled in Canada with having doctors I can trust, and while I do agree you need to be inquisitive and seek a second opinion if you are not sure - what good does it do to plant the seed of doubt in a parent's confidence in their medical team? It is difficult enough navigating all the specialist appointments and just getting through this with our precious little ones. Where does this need to discount each other's experience and advice come from? I am afraid that this probably just causes more anxiety for those newbies to HD. I truly believe these folks just need to hear what others are doing and then make the best decision based on their own instinct, and all of us board crawlers need to understand that...and remember back to how we felt when we first got the news. There is not one of us that has the best answer - we just know what we would do and what works for our own unique situation. What I have learned is that there are so many varying degrees to HD that we can't possibly assume that what works for us will work for everyone .
So here is my plea - for all of you message board crawlers out there who think you know best. You don't. Please remember that. Only the mom and dad of the little one know best. All they need from us on those boards is our compassion, our experience and our support. There. I said it. I'm done. And maybe I should take a break from those boards for a while.