- Why I moved to Toronto when I was 19
- The early days of my son’s Fragile X diagnosis
- 14 months that had a huge emotional impact on me
- How the death of my friend gave my life a new purpose
Before my son’s Fragile X diagnosis, he struggled with all the traditional milestones. But he was sweet as a button and easy to tote everywhere. Hell, I didn’t even take a mat leave as he was so easy. He just hung off my nipples while I did my work…piece of cake right?
When he struggled with speech, language & developmental delays, I knew something was wrong. How was I such a child prodigy but unable to teach my son who I was spending countless hours with one on one?
Not to mention, I wasn’t working then. I was building myself professionally across several industry verticals. I was also volunteering in the church, and with Scouts Canada. I couldn’t be more blessed with this role as his one and only. And I was:
- And still not figuring my son’s challenges out.
We saw every specialist, took a ton of assessments and seemed to be chasing answers. Growth was becoming more challenging as it was clear that he wasn’t as “at one” cognitively as his peers.
Every physician we talked to took us out of the autism spectrum…not once…but twice
Then everything changed in March 2015 when a physician recommended genetic testing. This led to my son’s Fragile X diagnosis.
Fragile X, for those of you who don’t know this, is a genetic syndrome/disability.
I had already known of his ADHD diagnosis and learning disability. But finding out about my son’s Fragile X diagnosis helped me figure out why. The test results also revealed that I am the carrier of Fragile X.
So, my chances of passing on the gene during fertility are 80%. This was a life-changing discovery.
Shortly after I found out about this, my immediate mission was to advocate for my child. Because his needs required ongoing support, financial grants, and a better learning environment. Then, my boss let me go from my job.
The company was restructuring, and I had to struggle with:
- And balancing work against parenting needs.
Only two months after my son’s Fragile X diagnosis, I found a great job…
I started working 60-70-hour weeks that included travel within Canada. We were in a good spot. Although I was grieving for the life my son may never have, compared to the hopes and dreams I had for him.
We travelled to Brazil upon recommendation from Dr Oz for healing deep in the jungles by a local healer, Jon of God. This was impractical, but I also needed to have the reality of my son’s diagnosis settle in.
I also didn’t want to look for answers or immediate solutions. Because I was part of an ongoing journey to advocate for my son’s rights and provide for his needs.
No matter what adversities we encountered, it was a year of:
- And commitment.