I was reading a post written by Ellen over at To The Max. Ellen is an excellent writer.Â She is also a very loving Mom to two kids, Sabrina, and Max, who has cerebral palsy.Â MaxÂ has a smile that will make your day and an unsurpassed devotion to the color purple.
Ellen writesÂ about her experience of watching a young woman with Down syndrome who holds a job cleaning tables at Whole Foods.Â Ellen is very honest in her post as she describes an unexpected moment ofÂ self questioning where she wonders if wiping the tables at Whole Foods is a job her son, Max might have some day.
“This was not my plan for my child. Not that I had a specific plan, but it vaguely included brilliance, a top-notch college and a high-powered job. It did not include cleaning tables, mopping floors, pushing the mail cart around an office or other jobs I have seen people with disabilities doing.”
Maybe it is because I have 5 older kids.Â 3 that are in college. The oldest just passed her Praxis and is applying for a position as an Intern for Alpine School District.Â After which she willÂ be hired as a teacher. Another dreams of fighting fires.Â He’s majoring in Fire Science, and will need to get his EMT.Â The third isÂ praying to be accepted into the nursing program of her dreams.
All of my kids are above average in the smarts department, with one who has tested off the charts.
But brilliant? Â Well,Â Reed and I don’tÂ qualify for that status either.Â So I guess my kids could blame it on their gene pool, but I don’t feel sorrow that they aren’t brilliantly solving the problems of the universe.
I put much more value on their making the world a better place each in their own unique way.
So, while Ellen feelsÂ griefÂ while watching this young woman, my reaction comes in the form of a big ‘ol
See, I have never once felt a moment of grief over the ‘could have beens’ with Parkrer’s extra chromosome.
Each time I look at Parker I see a little kid who is being who he was meant to be….perfectly.
That’s not to say that the feelings of other parents of children with special needs are wrong.
Because there is no wrong or right here.Â Just each person’s personal experience.
Ellen is very bravely sharing her feelings openly and honestly.
(Did I ever tell you about my dear friend, who when hearing that her brand new son had Down syndrome, remembers her first thought being how never again could her family have another family portrait taken. A few years later, in a Christmas card she sent to me, this friend shared that if there was a cure for Down syndrome, she would pour it down the sink.)
Anyhow, back to my point here.
Ellen writes that seven years after Max’s birth, she still mourns the loss of the child she expected, even though she adores the child that Max is.
She says that this is something that she believes that only a parent of a child with disabilities understands. And yet, even though I hold a membership card to the disabilities club, I. still. don’t. get. it.
When someone expresses grief over the loss of a loved one, that I can relate to.Â I’ve experienced it.
But I’ve never experienced grief over Parker’s living, over whatever happened to cause those chromosomes to stick together.
Now just so you don’t think I live in denial, or a place where unicorns and rainbows reside, when I see typical 5 years olds, my heart does indeed sometimes skip a beat.
I find myself remembering that typical 5 year olds really are much taller than Parker. Most 5 year olds don’t breathe out of a hole in their neck or eat viaÂ a hole that goes directly into their stomachs. And they talk.Â Most typical 5 year olds talk.
But I have never felt grief over who he might have been if not for that extra chromosome.
When I see a disabled adultÂ bagging groceries at the grocery store, or cleaning tables at the Rainbow Cafe up at Primary Childrens hospital, I whisper a little, “YES!”
Then I go up andÂ introduce myself and Parker. I search out the line the man with Down syndrome is bagging at.Â Even though that line is always the longest because everybody adores Dean, that’s the line I park my cart in.Â I thank the disabled man as he washes down the table we are about to sit at.
Then I write letters to PCMC and Albertson’s corporate offices thanking them for hiring such excellent employees.
I see both the disabled adult and the companies that hire them as forging the path for those that will come later.
I feel pride.Â It brings me great courage.Â I get excited at the thought of Parker being able to have these experiences.
Where Ellen felt unnerved, and described seeing an adult with disabilities as being a shock to the system, I feel only joy.
And while I use Ellen’s post as an example, there are many other parents who feel this same way.
And remember, I’m not judging here.Â I’m not condemning anyone’s feelings.Â Â Seeing how deeply this topic affects other parents has really made me think.
I’d like to know if there are others out there who feel the way I do.
Or maybe some that feel the way that Ellen does sometimes and then the way I do at other times.
And then I’d like to remind everyone, that there are many, many people who right this very second, would be thrilled to be offered a job cleaning tables, bagging groceries, and sweeping the floor.
Maybe it is time for all of society to remove a beam from our collective eyes.
It’s timeÂ our corporation of humanity recognizes the value of any type of honest work, regardless of who is doing it.Â This world would be a pretty boring place if we were all rocket scientists, or brain surgeons.
Imagine if we all refused to buy into the social and intellectual caste system that permeates our culture, how much better life would be for everyone.