He’s Not a Burden, We’re Not Broken

When Blade was a baby, his sweet smile and mop of blond hair, would often attract ooh’s and awes from anyone who laid eyes on him.  Standing in a check out line was a great place to show off my boy and brag to strangers who’d say, “Awe:), how old is he?” 

Blade...Awe:)

Carson also has a sweet smile and a mop of blond hair but when I stand in the check out line with him, we often feel pitied, stranger’s say, “awe:( what's wrong with him?” It is not the question that that rubs me the wrong way, it is the delivery.  I do realize that this response to Carson is intended to be caring and empathetic and that people have a right to be naturally curious and question the world around them, but pity is an almost daily reminder that most people view circumstances like ours as a burden.  Many people measure quality of life by ones ability to walk, run and talk so when they see Carson, sadly some assume he would be better off unborn…..they would be very, very wrong.

Carson... Awe:)

We are not burdened by Carson or his diagnosis, nor are we broken. Carson is a blessing just the same as our other two children are.  He is happy, full of purpose, irresistibly adorable, and he can already assume credit for inspiring a lot of positive change in the world.

My biggest beef is in regards to accessibility.  I would happily trade the over-abundance of pity for consideration and wide-spread Universal Design in a nanosecond! I try to be friendly and positive yet, I find myself turning into a defensive b*tch in parking lots.  When I get my able-body out of my car to unload the kids, I am often shot looks or rude comments from people who assume I am abusing a disability placard.  Many people have remarked that I am lucky to be able to have access to the primo parking spots.  Frankly, living with physical limitations is a fairly high price to pay for a good parking spot.  Not to mention, in many places there is only one or two parking stalls (if that) designated for person’s with disabilities, which means that equal access is not always guaranteed. 

We have had record breaking snowfall in Edmonton this past week, my patience with people is running out.  It seems that many people feel that accessibility is weather dependant…those folks would be wrong (and rude).  How does someone justify parking where ever they want because there is a ton of snow?  If accessibility is compromised for able-bodied people, just imagine for a second how much more it is reduce for a person in a wheelchair.  Ever try pushing a wheelchair through the snow?  Ever try carrying a 50 lb child with low muscle tone through a snow bank? (I know many people; myself included, who just answered yes)  Both are not only difficult, but unsafe. 

If not for great friends and strangers doing good deeds, making considerable effort to clear snow ahead of our arrival, and ensure a reasonable access point, effectively replacing my frustration with gratitude; I believe I would see a decrease in my impulse control (and I am white knuckling it at times as it is).   Every effort made is such a blessing. 

A beautiful sight a midst all the snowfall, right in my own community:)

I apologize to the elderly couple that I misunderstood and blasted in the Londonderry Mall parking lot.  And to the guy who was trying to help someone out of a snow bank and got in my way, causing me to get stuck and have a mild tantrum about it before accepting his help to shovel and push my car out.

Thank you Mom for making our home accessible by shoveling for the past week!  We (and our neighbors) are going to miss you.  Thanks to Rich for making the school parking lot and sidewalks accessible….our community is lucky to have friends like you:)  Thanks to the school staff who shoveled and held open doors, greeting us with us with a smile, in spite of their hatred for the ugly weather.  Thanks to the neighbors who shovel our walk.  Thanks to Crystal for supporting me and empathizing with me during melt-downs (my bff drives a special needs school bus...she kinda gets it;).  Thank you to the school staff and Lisa for not making me feel like a delinquent parent for not taking my kids to school for half the week:)



I will call this  'Mama Mountain' until it disappears (in July likely!)