A Laramey

Despite her day job as a bureaucrat, A. Laramey is a writer, dabbles in photography, spends too much time on the internet, and occasionally gets some exercise. Her favourite colour is green, she wants to work in a bookstore when she grows up, and when she dies she wants her tombstone to read "To Be Continued..."

You can read more about her erstwhile beginnings below.

 



­My beginnings are as you might expect.  I was born in 1978 when my mother was in her 27th week of pregnancy, approximately three months early.  At birth I weighed 2 pounds, 1 ounce, or 980 grams.  My mother likes to tell me that I fit into the palm of the doctor’s hand, that I was so small they had to use a wash cloth for a diaper as there weren’t any small enough to fit me.  

My birth records indicate I went through quite a few medical issues in my first weeks of life.  Much of this was surprising for me to discover, the exact details of all the procedures were difficult for my mother to recall as there were so many of them.  Off the top of my head I know there was: a hole somewhere between my heart and my lungs that miraculously closed itself off.  There were blood transfusions to combat kidney issues and jaundice.  There were tubes inserted into my lungs to help me breathe, and constant scares when I would just stop breathing. 

Suffice it to say, it was not easy. 

Or so I hear. 

As I write this it is the evening before my 35th birthday, and the stories I have heard all my life about my birth seem like mythology to me.  Like the origin story of someone else’s superhero tale.  I can sympathize for my mother, and even for the tiny baby, but it does not feel like it was me.  I might be a “miracle baby” but it has rarely felt that way­­­. 

Don’t get me wrong; I was one of the lucky ones.  I still am, I suppose.  To be able to sit here typing this story illustrates as much more than just saying so.  And I’m not using empty words when I say that I was ‘lucky’.  That is how I see it.  I was not a ‘fighter’, as so many people seem to want to label critically ill babies and children.  How could I be a fighter when conscious choice was beyond me?  No, the fact that I survived and thrived has come down to nothing more than luck, good medical interventions and good parenting. 

Growing up, the first ten years or so of my childhood were the easiest.  I find this somewhat ironic as I’m sure they were the most difficult for my mother.  I am the youngest child in my family, and thus my mother was aware of the developmental milestones for most babies, and when I reached 6 months of age without having acquired some key physical abilities she took me in to see my pediatrician.  He was the one who informed her I had Cerebral Palsy. 

To this day I have no idea how that diagnosis was made, but I suppose such details don’t matter.  The diagnosis was provided and it was not wrong.  It was also not very clear.  All the doctors could tell my mother was that I wouldn’t die because of it.  Whether I would walk, have a normal IQ, need spinal surgery, lose my sight, all were possibilities but not certainties.  No one knew what would happen; no one knew how (or whether) I would function.

The first years of my life were filled with physiotherapy and occupational therapy at a preschool for children with disabilities.  I did learn to walk, albeit with some difficulty – on the tips of my toes, with my feet turned in.  It became clear to those around me as my linguistic skills developed that my intellectual abilities had not been harmed.  What was left to conquer was the physical. 

Physio had helped to loosen my muscles and become less spastic, but it was clear to everyone that further intervention was needed.  So, at 4 years old I underwent my first heel cord lengthening surgery, allowing me to finally walk with my heels on the ground and almost normally.  A second procedure would follow a growth spurt in my eighth year, the same year it was discovered I needed glasses.

For me, these years hold few memories, and the ones they do are only marginally touched by my cerebral palsy.  It is one of the ways I have been lucky, to have such a mild case of CP is rare.  But it is also a mixed blessing.

I grew up in the 80s, a decade when people with disabilities were beginning to be ‘integrated’ into every day society.  As a result, I was one of the first children with a disability to attend my elementary school, a fact that was made abundantly clear by the lack of experience, competence and compassion of those around me – adults and children alike.  It was here, at school, that it became clear that while being disabled might be ‘ok’, being different certainly was not.  There was a continuum of compassion, or so it seemed to me.  Kids with far more severe disabilities than me were protected and accepted.  I, on the other hand, was too close to normal, yet just far enough from it to be scary.  A live, human example of the ‘uncanny valley’ effect.  

Somewhere around the preteen years the bullying and harassment began in earnest, once again from both adults and children.  This went on for years, forcing me to change schools once and only truly ended in my final years of high school.  It was not easy.  In fact, there were many times I wanted to just disappear and fade away, to simply stop existing because there did not seem to be much joy in it.  I would simply not go back to school after lunch, or spend all my time reading, hoping to drown out the worst of it.  I didn’t fight it and win, I wasn’t untouched by it, there wasn’t some miracle moment that gave me strength, I just kept slogging through because that seemed to be the only option. 

It got better, of course.  Most things do, given enough time.  I went on to University to get my Bachelor of Social Sciences in Criminology.  Not only did I graduate Cum Laude, but I had the best four years of my life.  I belonged, I had friends, I dated, I finally started to feel normal.  University also provided me with a summer job with the federal government that turned into forever when I wasn’t looking.

Today, at 35, I still work for the federal government.  I live in a beautiful apartment in downtown Ottawa, and I have a life full of hobbies like photography and travelling.  I’m not sure I would say that I am the person I am today because of my disability, but rather in spite of it.  I may not be climbing mountains or winning Olympic medals, but I have not let cerebral palsy stop me from leading the full and independent life that I have always wanted.

To parents of premature babies who may face similar difficulties in their lives, I’m afraid there is no perfect advice.  Every child is different and unique, including those with disabilities.  Just know that premature birth and its possible subsequent difficulties can have good outcomes.  

All is not lost.