Journal

The more I think about guardianship and what it entails, the more enraged I become. Part of my frustration is that the safeguards that are in place to protect people with disabilities from losing their independence and autonomy ironically discriminate against those who are on the profound end of the disability spectrum. One commenter disputed…

When Meredith was just 5 months old, we returned to the Children’s Hospital of Eastern Ontario (CHEO) for what felt like the 20th time after our initial discharge in mid February of 2024. Hours after Meredith was born in early December, she was airlifted from the small community hospital where we lived to CHEO’s Neonatal…

Tell me all about it. Tell me about your sorrow and heartbreak. And then about the confusion of feeling such despair while also experiencing inconceivable joy. Tell me about your worries and the constant hum of fear that sits just under the surface of every moment and every breath and infiltrates your dreams while you…

con·tin·gen·cy plan (/kənˈtinjən(t)sē plan/) noun: a plan designed to take a possible future event or circumstance into account. It has been written that caregiving is not for the faint of heart. The truth is that life happens regardless of your perceived resilience, strength or willingness to do so. After I got over the notion that…

Collision On March 29th 2003, I was paged (yes, you read that right!) that a client was in labour at 3am on a clear winter’s night. Just before I hopped in the shower, I decided to do a pregnancy test. It was the end of the month, after all, and my period hadn’t paid me…

***If you haven’t read Part 1 and Part 2, I suggest you do so before continuing*** From all of life’s big moments, both joyful and tragic, we can learn something. This experience of the last 2.5 years, has brought a wealth of insight and wisdom with it. One thing for certain is we can never…

Setting our story free (you can find Part 1 HERE) and having it received with such love, concern and support was such a beautiful gift that you gave to us. Thank you for the thoughtful comments and private messages, the suggestions and inquiries about various aspects of this horrible experience. I regret my lack of…

Elie Wiesel wisely reflected that “Whoever survives the test must tell their story. That is their duty.” This notion of sharing one’s story to perhaps help someone else who is coming along after has always resonated with me. It is the reason why I wrote my book. And now I have another story to tell…

For many years, after surpassing several life expectancy predictions, we coasted as there was an unfamiliar sense of predictability, stability and consistency to our days and nights. We had tremendous supports and a pot of funding that allowed us to staff daytime and nighttime care so we could both work and sleep and carve out…

I knew this period of stability and predictability wouldn’t be everlasting. Once Meredith surpassed her life expectancy of the age of 8, I felt relief and a sense of peace. We had made it beyond this magical number that had loomed in the distance like a marker in a race. It wasn’t until we got…

I have pondered the term “life expectancy” for about fourteen years since we learned, after a sudden close call, that Meredith’s life would be significantly decreased due to her medical fragility. It was something the doctors had known since her birth two years earlier but did not express to us. They recognized that there was…

One day, this life we live will cease to exist and the future we dread will come to pass. One day, my arms will be empty. Arms that held you from birth until death. Every cell, every muscle, every tendon will recall the weight of you in my arms. One day, I will no longer…

I think of them often. You know, the mothers who came before me. The mothers who were the trailblazers in this land of special needs. They are the mothers who were urged by not only the professionals who knew best but by their family members to place their babies in institutions; a better place for…