Friday, November 22, 2013


An old friend posted on a link that I shared over Facebook last night. The link spoke of Synesthesia, a phenomenon that I have been closely observing with Sammie since he was an infant. Synesthetes have a fascinating sensory perception condition in which the stimulation of one sense triggers unconscious and involuntary reactions in the other sense. So some synesthetes "hear" or "taste" colour, "see" music, and "taste" light.  Recent studies indicate that Autistics are 30% more likely to experience synesthesia than neurotypical people, and it is definitely something I have picked up on with Sammie since, as a very young child, he appeared to try to "touch" light and "sounds" and still covers his eyes and ears when there is a smell in the room he doesn't like.

My friend commented on his own experiences of heightened/stimulated perceptions, and I found myself so curious to ask him more about it. I was just about to send him a private message, when I stopped, fingers still set to type.

Where does one even begin?

You see, where once upon a time we were actually quite close, my friend and I haven't seen each other in around 8 years.  Almost 3000 days....

I've followed him- from the comfortable distance of Facebook- as he has explored the world, fallen in love, become a father....

I've followed and read with intent curiosity his shares about politics, food, and life in general...

I've laughed at some of the comments which remind me of why we were friends in the first place...

I've smiled, sensing very much that he is happy and exactly where the Universe wants him to be...

But it has been years since I have said 'hello'. So long, actually, that I'm not even sure where to start.

You see, I'm not entirely sure the person he was once friends with still exists.

While I do know that most people grow, change and evolve over the course of their young adult lives, I'm not entirely convinced that most do it with such a strong-handed division between who they were (and thought they would be) and who they are (and have become).

I can trace back, to the day, the moment that my life got split down the middle: Zita of Then Vs. Zita of Now.

February 5th, 2010. I was 19 weeks pregnant with Sammie and received a call at work from my doctors office. He was just about to leave for Mexico but "needed to talk to me before he left" because he didn't want another doctor to have to give me the news.  The ultrasound had come back with signs of severe abnormalities. The child that we had coveted for so long, that we had risk so much for...the baby was sick. 

The whole conversation seemed to take place in a blur, but I remember every word. 

"You're going to have to decide what you want to do. You only have a few weeks if you want to terminate. We can wait and see what happens, but that will make it harder for you to act if you decide that you don't want to go through with this. What you need to know is this: the baby will probably not survive the pregnancy, and if it does, it will likely have a limited quality of life. And you are also at risk- this could be very dangerous for you."
My heart stopped beating. And for that moment in time, all I could hear was the blood pulsing through my head....and something faint behind it. Another heart maybe? My baby's heart. 

There was nothing to think about, nothing to consider. 

I knew that I would risk my life for this baby. That I was prepared to die so that he might live. 

I went home and talked to Jason, already knowing he would agree. We would fight for our child. We were his parents. It was our job to keep him safe. 

We named him that night, knowing that we would want a name in case we had to bury him prematurely, inspired by the book of Samuel, verse 27: "For this boy I prayed, and the Lord has given me my petition which I asked of him."

On that cold day, almost four years ago, something shifted inside me and I would never quite be the same again. I realized, in a real and tangible way, that there was nothing- NOTHING- I was not prepared to do for my child, and with that realization, I walked away from the selfish young adult I had been and entered a whole new world of understanding that self-actualization only comes when the self is no longer the principle focus.

Prior to that day, I had already been a friend, sister, daughter and wife. I had already loved people, many unconditionally, and had fought battles to protect them and our relationship.

But there is something slightly different between saying that you are prepared to die for someone, and actually signing a document stating that you would like another person to be saved before you are.

On that day, I knew that I would never be the same. That every hope and every dream I had would be placed on hold- possibly indefinitely- while we awaited the outcome of the pregnancy and birth.

The rest is history.

Since then, one day at a time, the person that I used to be slowly became replaced with the person I have become.

My perfect, immaculate parlour with baby blue furniture? Covered in raspberry finger prints.

My dreams of becoming a corporate lawyer? Replaced by working from home, usually during nap time.

My business suits and designer glasses? Replaced by yoga pants to make floor time more accessible.

My love of food, and obsession with restaurants? Replaced by a mostly pesticide-free, dye free, corn/soy/msg/gluten-free, casein/dairy-limited, modified Paleolithic Diet. (Yum!)

My ambitions for wealth? Replaced by hope for government supports for families with disabilities, and a sincere understanding of just how good we've "got it".

My son's Registered Education Savings Plan? Replaced by a Registered Disabilities Saving Plan.

My vision of a wet-bar in the basement? Transformed into a Snoezelen Room and Gross Motor therapy space.

My idea of a perfect Saturday night dinner? One where Sammie actually eats what's on his plate.

My dream Christmas gift? A maid service. Seriously. How awesome would that be?

My Friday mornings? Meetings and training seminars with Speech Therapists, Occupational Therapists,  Developmental Psychologists, and teachers.

My super huge, pillow top mattress? Not so huge now that I have another baby snuggled up beside me.

My days of wild-child style partying until 5 am? Ha ha. Last night, I was breastfeeding at 5 am. :P

My life? Absolutely perfect, and I wouldn't change a thing. 

But it isn't where I thought I would be, and I doubt it's where others would have predicted me to be either. Sometimes I look back and am amazed by just how far off my original path life has taken me.

And so, in moments like last night, I think back to the those friendships of the past and wonder- would they- could they- have changed with me? What would we say now if we were face to face? Would we have anything to talk about? Or would we have so much more to say now than we did before?

There are a handful of people who walked the last five years by our side. We've lost many friends, mostly due to the significant changes I have described above. Many people don't understand. Many people are scared of the life we are living. Special needs parenting is not for the faint of heart.  It is full-on, 24/7, intensive and unabashed adoration of another human being (and in our case two) with almost no respite and minimal support.

There is very little room for "you" in this world.

And the "you" that there is room for is a very different person than the one you knew before.

I didn't grow, or evolve,  or develop.

I changed. Black and white, from one day to the next, overnight.

Pre-Sam Zita is a distant memory. All that is left are the shadows of the life I thought I was meant for.

There is no regret or sadness, though there is sometimes a tugging nostalgia.

But I'll be honest with you, I like this "me" a lot more than I liked myself back then.

And I have a suspicion that, if ever we were to meet again, my friend would too.

Maybe that's why we were friends in the first place.

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