This question was posed in one of the OI Facebook groups and (I believe) comes from a parent of a young child with OI. The question got me thinking about the day-to-day struggles of living with OI as the kid vs the day-to-day struggles of the caretaker or parent. But since I will only write from what I know, I wanted to answer this question from the perspective of the kid with OI – with the hopes that it will provide some answers for parents and caretakers.

It is absolutely frustrating to be told that there is no visible fracture seen on the x-ray while your leg is so clearly burning in pain. It will throw a curveball to anyone’s day when you find out that the place you want to work at isn’t wheelchair accessible, and won’t become accessible because the building is historical. It can be aggravating when you were only doing what you usually do and your femur breaks for no reason. These are only some of the day-to-day realities of someone with OI, but that’s just how I view them. I don’t see it as struggles so much as “this is just my life.” I don’t know any different.

With that said though I grew up in a family where I’m the only one with OI, and didn’t meet another person with OI until midway through my 20′s. So while I have never actually lived a life other than one with OI, I am constantly surrounded by people who DO know a life that’s vastly different from mine. And when I watch my brothers or my friends going about their lives, there is definitely a noticeable ‘ease’ in which they are able to live. It’s when I compare certain aspects of my life with what I see around me that I begin to wish I was more like ‘them.’ Many of my friends don’t need to check accessibility of places beforehand, my brothers took karate lessons at the Y and played soccer; generally speaking, there is a freedom of movement and lack of concern for what ‘might’ happen that I am sometimes curiously hungry to know about.

And at this point it becomes easy to be consumed by wishful thinking. Thoughts of “wouldn’t it be great if I weren’t this short? What if I could be just as tall as the average person?” And on the flipside it also becomes easy to be totally disheartened by how different my reality is from most other peoples: “I wish I could enjoy my summer vacation like my friends and not have to be stuck in a cast after surgery for three months.” This is when I realize that I am only making it difficult for myself. Just because I am surrounded by people who are different from me doesn’t mean I should allow my own life life to be undervalued, underappreciated, or joyless. Years and years of these thoughts have popped in and out of my head, and to this day some of those thoughts STILL sneak in through my filters.

It’s important for those thoughts to be around and to not completely ignore them or write them off. Acknowledging the frustrating and seemingly hopeless moments allows us to better appreciate how we pull ourselves out of them. Overcoming the boundaries and bottom-less pit of the hopelessness quicksand involves determination, focus, and a sense of never quite being satisfied with the present. Be determined to experience more joy. Be focused on your own reality and not the distractions around you. Be antsy and curious for what else tomorrow might bring.

We all have our off days, (and actually I just had a really off week myself!) but it’s important to continually ask ourselves is this all we’re capable of? Is this all we want? Is what’s in front of me the best that I can do? And if you’re uncertain about your answers to those questions – chances are you’ve got just a little bit of fight left in you yet!