This is something that I often get asked by parents of kids with O.I. "What do you wish your parents had known?" "What do you wish your parents had done differently?" "What advice would you give to us?"The answers that exist for these questions are simultaneously too numerous and yet not enough it seems! That means that this post with only three pieces of advice is already going to be insufficient. My only excuse for this is simply: I am not a parent.


1. Know that you are not a failure.
There will only be so many times that you will be prepared for a fracture, and more times than you're comfortable with that you won't. I have yet to meet or hear from anyone with O.I. who deems their parents at fault for not having been at the ready to prevent a break, a fall, or some other mishap. You're also not a failure when the way you slip your arm underneath a broken leg one time suddenly seems to be totally inadequate the next time. Just because something worked once doesn't mean it's going to work the next time - I think that should be Lesson #0 for parents of any child. You're not a failure when you forget to bring the right sling or splint, and you're standing there doing a major face-palm screaming silently at yourself. You're also not a failure when you don't cave in to our every beck and call when we break a bone, because we may think that the world should suddenly bow down to our needs every time a fracture happens. We might think you're a little bit of a failure if you call us by our siblings' names instead. I mean c'mon, we look nothing like them!

2. There is such a thing as over-worry.
I'm not in any kind of position to tell you to worry or not to worry (because even if I did I'm sure we would all know what would happen anyway..), I'm just saying that the line of over-worry totally does exist. We all know that you will and there will be less of a white-elephant feeling in the room if you are honest with us about it. Worrying means that you care and we get that. It also means that our well-being has an impact on you that we ought to know about! I think one way of keeping a distance from the line of over-worry is to not worry alone. It won't all be that feeling in your head, your chest, and on your shoulders. I would like to think that there is some sense of relief when you can say to yourself well at least she knows how worried I am. So please, don't do it alone because there is support and power in numbers. Once in awhile when we take that step we are also lucky enough to find a solution!

3. We're going to pick and choose.
It is partially your job to ideally give us everything that we might need (think beyond the medical and disability sense.) Things that you think we might need. But ultimately we are going to pick and choose from among those things, selecting the things that we think that we need and those things that we know that we'll need. This isn't some attempt to for us to criticize your parenting skills or for us to show how ungrateful we are. This isn't an attempt at all, in fact. It's how we're becoming our own individuals so that we won't be total and complete miniature versions of you! (Because while that thought might be fun in theory, in reality don't you think it might be a little bit of a nightmare? A little bit freaky?) But even as we do pick and choose there's no doubt in our minds that you're going to be there.... adding in your two cents and then some. Right?