The disability world is an exotic place. Unlike any other vista I've ever visited. Along with it comes a myriad of heartaches and blessings associated with the journey.
From the moment I learned about my sons existence, our lives have been different. After his traumatic birth, lifeflight, a 3 month stay at Primary Children's Medical Center in the Neo-Natal Intensive Care Unit, the discovery of his lingering disabilities, and then the exploration of just what those diagnosis' meant, after three years of Early Intervention, transitioning to the school district, delving into the vast world of Individualized Educational Programs, wheelchairs, and standers, equipment... and on and on and on.
I still find myself in a strange place. I feel like I am on the top of a mountain looking down at a world I don't recognize. I wonder often, just HOW did I get here. Not only how did I get here, but where am I going? There are a million "what-if's" lingering out there. A million decisions to be made, paths to be carved and what I hope is a lot of life still to live.
One thing I have learned on this journey is that people in our lives respond to it differently. Some jump on the wagon and have ridden it with us. Others have pulled away. Some dance in and out of our lives, to the best of their ability. This I can understand. It is a hard ride. There have been more tears, more heartache, more wallowing, more drama than most people care to be a part of. I have not handled myself well. Its been a huge change and adjustment for me, and I like anyone thrown out of their boat in the middle of the ocean have not responded well, done the right things, said the right things, behaved the right way. I have wounded and offended people.
I feel like I am at a new place, a juncture of sorts. Where I want to navigate my journey. Rather than traveling down a white water river in a boat with no oars, I want to take charge. I want to facilitate preparation. I want to focus on the positive things. I want to arm myself with knowledge so I can make more informed choices. I don't want to just "survive" this experience, I want to flourish.
This is the new avenue I am going to pursue. You are more than welcome to join me. I'd love some company.