Putting it in Perspective

You know it's a funny thing: how drastically your perspective can change about something.  Sometimes it's simply time that changes it, but I think more than that it's the things we see around us and our life experiences that really alter perceptions.  Like my perspective of things as a parent versus the judgey opinions of a single, young twenty-something is comical.  iPad at the table in a restaurant? Sure, if it means Sean and I can shovel a semi-warm meal down on borrowed time!  Cheese for dinner? Vitamin-D and calcium are in those, aren't they? And you're eating something without me begging too hard so.....Perspective, people, it's all about perspective.

About 2 years ago, Sean and I were sitting by the phone waiting for the results of the genetic testing on Jack, praying that the first round was wrong, that we were worrying for nothing.  It felt like the world was falling apart; how could we handle a special needs child? Finding out our sweet boy did, without a doubt, have Down syndrome was devastating to me at the time.  I can vividly remember thinking, "Everything we had dreamed of and hoped for him will never happen," and believing that with every fiber of my being.  My perspective was shaded and shaped by things I knew from the past: special schools, institutions, limited life skills programs, and simple jobs to help keep busy; this is what I thought was in store for my baby boy: a limited life expectancy and a world that did not hold much promise or opportunity for him.  It's no wonder I cried my eyes dry.  As I read everything I could, scoured websites, and spoke with advocacy agencies and parents of children and adults with Down syndrome my perceptions and perspectives changed drastically and with such an intensity that I wanted to time travel and slap the me of two months prior silly.  Was it going to be challenging? HELL. YES. Tears? Most likely.  But as the mother of a beautifully bold, precocious, and lively then two-and a-half year old our life is full to the brim of challenges and mommy-tears already. 

When Jack died, the fire in my heart went out.  I felt ashamed that there had been a time where I was worried about his abilities and disabilities.  We didn't have him at all now and I had had nerve to cry over perceived imperfections?  I hated myself and could barely look in the mirror.  I thought, "Go ahead, cry, because this is really what you should have worried about all along, his health, not beautiful almond-shaped eyes, and how fast or slow he'd walk or talk, you stupid girl."  We would have taken him at his worst and loved him fiercely just to have him with us at all, again changing my perspective.

As two yearly has ticked by, sometimes painfully slowly and others flying by in a blur, this gradual shift in perspective has surprised me the most, probably making others think 'yea right, easy to say that now in light of everything that happened'.  But as I continued reading and following the lives of other families and parents touched by Down syndrome, still feeling connected to them despite the absence of my son, I couldn't help but feel something that I couldn't put into words until last night, when it hit me like a ton of bricks reading something another mother said about her own little boy.  Jealous.  I feel jealous.  And no, it's not a jealousy in that they have their children and I don't, that unfortunately is inherent in our situation and is not something I can rectify-that will ease up only with time and acceptance, I'm afraid.  No, it's not that.  It's a jealously in the utter fullness of their lives and the people in their lives, forever changed by the their amazing babies, children, and grown adults with Down syndrome.  I believe you can only be made better by being in the presence of individuals that work so hard for every single thing they achieve.  These parents, siblings, family members and friends, changed for the better in a nothing-short-of-magnificent way by their experiences of watching the challenges that are overcome and the achievements that are reached by the amazing, determined individuals they have the honor of loving.  I root for them, cheer them on, sending all the love and positive vibes I have within me.  But I would lie if I said it was not without a pang of jealousy and longing in my heart.  And this, all because of perspective. 

So yes, my perspectives have shifted. They have, in many cases, absolutely exploded and been reborn; as a parent, as a parent of a special needs child, as a grieving parent.  I don't know what the future holds for me, but I'm sure it will involve some sort of change.  After all, if things are not changing, we aren't really living. 

Perspective, my friends, it is all about perspective.