It’s very hard for your family when you’re born with a disability.   There is the whole set of issues around what did we do wrong why do we deserve this why is god punishing us.   Then they have to deal with what and how will this baby grow up and make its way in the world.    Then there are all the broken hopes and dreams parents have for their kids.    Well she grow up to be a doctor?   Well he grow up to be an engineer?   Well they run for political office or compete in the Olympics.   Finally the questions of how are we going to deal with this what are this child’s needs and oh my god what’s next.

I had a friend tell me this morning it takes so much to build something time effort focus energy.   All of what you’ve built can be gone in a second.    Life goes on.

From experience I can tell you it’s impact-full enough when you have a child.  For me I was a totally different person after my children were born then I was beforehand.     I can’t tell you from experience what it would have been like to have a child sick, still born, or born with a disability.

In my family of origin even though my eye condition is hereditary there is little to no support because no one will talk about it.   What I am is really a byproduct of my mother’s advocacy.    Unfortunately advocacy gets you only so far.  Ultimately you as a disabled person need to create and maintain a support system and stand on your own two feet.   Parents pass on and life changes everything.

For me it was very hard because by the time I reached grade eight I was literally an alien to my family.    Just to cover my buttocks.    This is not a slight on my family.  They are very loving and caring and I still need all of that believe me.   But in my needs with my disability my blindness and my culture of blindness I was totally outside their understanding.     I couldn’t follow in my parent’s footsteps or even consider the dreams they had for me.   I had to ultimately stand on my own and find my own way.   I was lucky that with my large extended family my aunts and uncles and cousins provided education and life experiences of an immediate family.    Essentially I have a community of parents.    There have been many people that have taken on the mentor role for me and the varied experience of each I’ve added to my toolbox to get through life.

I’ve been lucky to have so many people step up and teach me and guide even me listen to me be complain.    I’m lucky to have a support network that stretches past each place I’ve lived with very special friends in each.

I know that my having a disability has impacted my relationships with my immediate family.   It’s only been with age understanding maturity, I hate that word, that I have come to realize how impact-full my disability has been on all of us in my immediate family.   That we’ve all done our best to support each other and be a family and bring out families together to share with our children.   But there have been wounds that have been painful there has been impact.    Knowing that doesn’t make it any easier.  Some wounds some rifts are very hard to fill.

I dream of having an experience of an ideal child parent relationship.  I almost feel like Pinocchio searching for the blue fairy to make me a real boy.

Posted in: Everything Else, Living

About the Author:

Kyle has ocular albinism and has been legally blind since birth. Kyle leads a very active live and is besides his professional career involved in many projects for persons who are different.

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