written by Sue Tomesch
in memory of her son Jason
about the author:
Sue Tomesch is a Business Analyst at Manulife Bank in Waterloo, Ontario, Canada. She has worked at Manulife for approximately 37 years. Sue is married and has one son.
Why I Joined the Ability Community
At the age of 2, my son Jason was diagnosed with Duchenne Muscular Dystrophy, a genetic muscle degenerative disorder that affects mostly boys.
My son walked until the age of 8; afterwards, he was fully dependent on his wheelchair. At the age of 19, he almost died from Aspiration Pneumonia.
After spending six months in hospital recovering, he could no longer breathe independently and had to rely on a trache, oxygen, ventilator and feeding tube. He could not eat or drink by mouth, and his voice was barely more than a whisper.
However, his whispers were strong enough to move mountains.
Louder Than Words
Despite his physical limitations, my son lived his life to the fullest regardless. He became a Disability Advocate and animal rescue supporter, inspiring me and many others through his tenacity and determination.
He wanted to bring awareness to the challenges many disabled people face, and his greatest desire was to ensure that this group of people are seen and heard. He used to say, “If only I could talk, I could do so much more,” but his presence spoke louder than words.
He said the only way people will recognize us is to get out in the world and not be afraid. He inspired me and so many others during his lifetime.
Still, he sadly passed away very suddenly and unexpectedly on Dec 3, 2020, at the young age of 28, due to complications with his trache. His dying wish was for others to keep fighting for Disability awareness and animal rights. We have come a long way, but still have a long way to go.
Ironically, he passed away on World Disability Awareness day, a few hours after receiving the news that he was COVID-free. He proudly shared this news with his friends on social media and that he was doing better and would be coming back home in a few days.
His passing was so sudden and a shock to everyone.
Keep His Legacy Alive
As a parent caring for a child with a disability for 28 years and working in a full-time career at Manulife, I faced many challenges in my work and home life.
I hope to share my experiences and many learnings to help other parents or primary caregivers trying to manage their work/life balance. I was very fortunate to meet and work with some fantastic and supportive people at Manulife, and for that, I am thankful.
My faith has also been an essential part of my life and has helped me through challenging times. I have often been told, “I don’t know how you do it.” My reply, “Is by the grace of God.”
Although my focus has changed now with my son’s passing, and I am no longer his primary caregiver, I want to keep his legacy alive as a disability advocate as there is so much work still to be done.
I am very excited to see that this Ability community has been started up for Manulife employees, families, and customers, as I am very passionate about this.
I was in the Diversity/Equity and Inclusion community at Manulife for over five years, and I met some amazing people while on my journey. I participated in several sub-committees, fundraising, and other events to bring more awareness of the need to support people with all types of disabilities, both visible and invisible.
I also find it very interesting that disabilities affect all cultures, nationalities and people across all walks of life worldwide. Yet until someone experiences a disability themselves or a friend or family member, the awareness and support are still lacking in so many ways. That’s why I am so excited and passionate about this group’s work at Manulife.
Together we can make a difference.