· disability,special needs,autism,family,advocacy

Every morning before I go out the door, I kneel down to strap the velcro of Bella’s braces tightly around her shins and calves. I’m in the midst of the morning hustle and bustle, and as I step out the door I realize that I’ve been feeling it. I’ve been feeling the burden of Bella’s extraordinary needs that I carry. I don’t think the pain of learning your child has a lifelong disability ever goes away. Some days it’s a stabbing pain, and some days it’s a weight I’ve learned to live with.

I think back 10 years ago when I was pregnant with Bella...

I let my dreams build up, my expectations soar, and my mind ponder all that she and we would be. I look at my life today and some days I’m barely staying afloat. In February, I wrote about my advocacy with #AutismDoesntEndAtFORD, as I joined thousands of Ontario families to protest against our government’s announcement with the rehaul of the Ontario Autism Program.

While I’ve been advocating like a mother, I had a looming realization that Bella makes our life complicated (as I say this out loud, the truth screams). Our day-to-day is that much tougher, and the challenges with therapies and education seem to be never ending. Lately I’ve been feeling defeated; broken inside and out.

I think back to a vivid conversation I had with my brother, Anthony. He once told me that I was lucky to be different. He was the one who explained to me that having Bella was the best thing in my life, as he reminded me that she was the joy the world needed. This conversation always stops me in my tracks; our family is lucky to have her.

And this was the beginning of my blog. I owe it to my brother as he helped me create a platform where I can share my tears, my screams, and my worth.

Today marks the 1-year anniversary of my blog. As I think back, I originally thought that through my writing I needed to teach others to learn to accept my daughter for her differences. However, as I write this post I’ve realized that through my writing I am learning how to celebrate and be blessed by them. Despite what life brings to our family, there is joy.

This is the cover of a book called My World, Your World and Our World In Between which is a compilation of stories and poems written by the students, parents, staff and community at Beverley Public School. Kevin Hearn, from the Barenaked Ladies drew this picture. I often find myself looking at it as it reminds me to be still and in the moment. In November, my husband and I attended a benefit concert called, Dream Serenade. Kevin played a song called Flying Dreams. Kevin wrote this song for his daughter, who is in a wheelchair and has special needs. Here are the lyrics to this song...

If you could walk, if you could talk

Where would you go, what would you say to me?

I love the sound of you movin' around

Laughin' and dreamin' next to me

But I'll never know what you see

I hope it's a flying dream

Over fields, houses and hills

Over hospitals, shopping malls and ravines

Over walls, transcending it all

Love finds itself right where it longs to be

And I'll never know what you see

I hope it's a flying dream

You centre me, you help me to see

What is important and what I should just let be

To blow away on garbage day

With candy rappers and cigarette packages

Through the dark days, the hard careens

Longing for flying dreams

There's no more leaves, the raindrops freeze

And glisten like teardrops in the the trees

Sink or swim, still sinking in

I've been swimming deep in the blues these days

Ever since fate intervened

And took away my flying dreams

Flying dreams

Flying dreams

This beautiful song overwhelms me with tears of grief and tears of joy. I didn’t get to pick my daughter’s disability. “Fate somehow intervened”, and the disability chose her.

My heart is calm and my soul is lit.

My thoughts are positive and my vision is clear.

I’m at peace with where I’ve been, with what I’ve been through, and where I will go.

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