The Most Beautiful Things In Life Cannot Be Seen•
Posted on June 22 2020
I have a flashbulb memory of Sandra Monaco. There were times while we were at school together where weeks could pass and I wouldn’t see her, but I always remembered her infectious smile. It was only recently that I learned why Sandra was absent so often. In her lifetime, she’s had 41 surgeries. I had no idea that behind the smile, this teen girl was going through such trials—with Stickler Syndrome, Chronic Pain, and Glaucoma that would eventually lead to blindness. Her journey has been nothing short of heroic, and all these years later, it was my honour to meet her again. She reached out to me through Jordana’s Rainbows and I’m so honoured that she is sharing her incredible story. To my sweet Jordi: Our Rainbow Chronicles are filled with some seriously amazing humans: the kind you already knew existed in all of us. Keep guiding these introductions baby girl, and I promise to keep learning from all that you came to share with me.
My name is Sandra Monaco. I was born in December 1972 with a rare congenital birth defect called Stickler Syndrome. I was born pigeon-chested, with a cleft palate and paediatric glaucoma, and I was legally blind in both eyes. I started wearing glasses at 16 months old, around the same time I had my first of 41 surgeries.
By the age of 12, I went completely blind in one eye and I was left with just under 50% visual acuity in my other eye. Walking into walls and falling down stairs were both normal for me. My face did not grow at the same rate of my bottom jaw, and by the time I was 10, I had craniofacial deformity.
Elementary school, as you might imagine, was a terrible experience. I was a child that didn’t fit in the box of a regular student, stuck in a school system that didn’t want to deal with me. I was bullied for my ultra thick glasses, my braces, and a funny looking face. I couldn't see the chalkboard, I needed special materials, and I didn’t have the support I needed to learn at the same pace as my peers. I was passed from teacher to teacher—always somebody else’s problem. And while today there are more resources for and greater awareness of special needs students, I know that children like me still fall through the cracks of the system.
But my mother was—and still is—my biggest advocate. Never tell an Italian mother that their child doesn’t belong. She will show you the millions of ways that their child does belong and leave you questioning whether you do too. My family life got me through my days, and they are still the greatest support system. I wasn't different to the most important people in my life—my parents, my brother, cousins, aunts, uncles and grandparents—and that is all that ever mattered.
When I was 15, I had my most extensive surgery yet: a 15 hour facial reconstruction. It was exhilarating to be a teenager getting a new face. With titanium, my surgeon created cheek bones, eye sockets and a regular forehead. Many years later, I saw an x-ray of my face—my cheekbones were like bike chains and my jaw and forehead looked like they were being held together with screws. To this day, every time I have a CT scan, the radiologist will ask me what kind of car accident I was in.
My new face came at a pivotal time, and it brought me a lot of confidence, but I still felt held back from independence by my visual impairment. I would go out to social events where I was too much for some of my friends to handle. I couldn’t drive, so I couldn’t be the designated driver. I couldn’t make my way around, so I was often left alone to fend for myself while others were socializing. But I managed, and I learned very young how to be self-reliant.
At 19, I got my first job in customer service. I was an enthusiastic employee, I was promoted to manager, and I spent many years managing teams, continuing to learn and grow in my field. This is where I met my husband, and though we never knew for sure if it would be possible, we had 2 children—Adam and Jason who are healthy, happy boys.
In September 2015, everything changed. I had my 41st surgery, and I struggled to recover. I didn't heal as fast as I used to when I was younger, and after a leave of absence from work, I couldn’t return. I struggled with depression and anxiety. Not only did I have to give up my job due to illness but I was rapidly losing my remaining vision. By December of 2016 I was left with 9% vision in my left eye due to Glaucoma: my silent enemy since birth. My panic and anxiety reached a new level. Both my vision and my mental health were going dark. I cut myself off from friends and family, and I wouldn’t leave my home.
I was sad, scared, and MAD! Mad that I had to rely on others for direction, for assistance getting around my own home, even for help picking out my clothes. I was mad that I would hear comments like “but you look so normal.” I kept all this anger inside. I was deeply depressed and when it started to affect my kids, I knew I needed to reach out for help.
When I was eventually diagnosed with PTSD, Panic Disorder and Social Anxiety, I finally called the CNIB (Canadian National Institute for the Blind) where I started weekly sessions with my mobility trainer, Karen, and the dreaded white cane. I hated the cane from the beginning, but it was a tool I needed to regain my independence. Karen taught me how to hold it, how to get around the grounds of my building, how pavement feels different when you get to an intersection, and how to listen to traffic so that you know when it’s safe to cross the street. She taught me how to take the bus and how to cross a parking lot where there is no sidewalk, and eventually, I started climbing out of my darkness.
I got outside more, started socializing again, and though I was absolutely shocked when old friends didn’t acknowledge me anymore, I knew there was nothing wrong with me. I knew I was the same person, and that the problem wasn’t with me.
I’ve learned that people sometimes don’t know how to react when a person becomes disabled. And that’s okay. I found support in others who could share in my struggles. My neighbour, a woman in her seventies who I knew was also blind, invited me to join her at a CNIB support group for Low Vision & Visually Impaired Seniors. I learned so much from them. I loved their company and the stories they shared, and it was with their encouragement that I applied for a Service Dog through the Lions Foundation of Canada. I was shocked to learn that Service Dogs typically cost $25,000, and that with no government funding, these programs rely heavily on donations.
In September of 2017, I spent 4 weeks “boarding in” at the Lions Foundation training and bonding with my new best friend—my Service Dog, Kylie. I learned so much from the other participants, who were also there meeting and bonding with their new Service Dogs. It was the best experience of my life; one that I will be grateful for forever.
When I came back to Toronto with Kylie, I had a call from the CNIB. I learned that they were starting a new Ambassador Program for outreach at schools and community centres to educate people on what it’s like to live with visual impairment in today’s world. I believe that giving back by volunteering as a CNIB Ambassador and being involved in their programs has truly helped me with my independence and self worth. Giving back, being kind, smiling, and lending an ear—it all helps. I was a very strong person before this, and I’m even stronger now.
My job is to empower visually impaired kids so that they can excel at whatever they wish. The world is a big, bright place, filled with differences. That's what makes life so wonderful, fun and even a little crazy. During this COVID-19 pandemic everything except our virtual seminars has been canceled. I miss the kids that I have bonded with. While we can’t meet like we used to and I know that can make them feel afraid and alone, my hope is that this pandemic ends soon so that we can be together again—listening and learning everyday!
Just listening to Sandra I could feel how the clouds parted in her life. I could feel her optimism when she let go of her fear of being blind and learnt how to walk with a cane, when she made a new friend that encouraged her to help others with visual impairment, and how she ultimately created a new independence for herself. And eventually, when she met her new best fur friend: her guide dog, Kylie. Her rainbows started to multiply. Once Sandra started to live the life she deserves, owning her trials, she blossomed and now she has ignited her light in others by supporting young children at CNIB with their own struggles.
Sandra is an incredible rainbow. And even now, when she herself is at risk to COVID-19, when she can’t go past the paths outside her condo building, when she can’t hug her son—an essential worker—and when she has to rely on video chat to see friends and family, she is still thinking of others. She has a lot to be worried about, but she chooses rainbows.
It isn’t about me. It isn’t about you. It’s about us.
I’d like to introduce you this week to Marie Damasio. We met through our angels, Jordana and her son Tristan, who gained his wings less than a year...Read More
"What Happens When People Open Their Hearts? They Get Better." : Meeting Veronica
There are so many layers to the profound pain of child loss, one layer is the horrific thought “will they be forgotten?” Outliving a child disrupts...Read More
Meeting Fancy Nancy on the other side of fear
Jordana was an avid reader, and she was a big fan of Fancy Nancy, an early readers book series written by Jane O'Connor (O’Connor). Later when Jord...Read More