When pain is an indicator

As a caregiver to a chronically ill child with a rare autoinflammatory disease, I find I also have chronic behaviors. Daniel often teases me about being an expert in him (which in all seriousness isn’t wrong). But after six years of living on this journey with him, the trauma of almost losing him early on […]

“No such thing as failure—only setbacks”

2020 has been a year to remember. For many, it’s been a year that had meant job loss, isolation, illness, financial struggle; it has meant shifting gears, completely changing plans and, in some cases, moving on from something that you thought was part of your life purpose. The tweets and memes swirling the internet show […]

Covid 19—Fear of the Trojan Horse

Chances are you remember the story of the trojan horse from school or remember hearing about it from a book or movie? It’s the one about the huge hollow wooden horse constructed by the Greeks to gain entrance into Troy during the Trojan War. The story goes that the Greeks gave the people of Troy the large wooden […]

How my son’s fever set our world on fire

“My son has a rare undiagnosed autoinflammatory disease, that means he has recurring fevers, rashes, arthritis, interstitial lung disease, and a life-threatening blood disorder” “Wow! I am sorry! I think my friend’s aunt has an autoimmune disease” When I speak, to the newest resident doctor at the hospital, and they ask what his diagnosis is: […]

COVID19 & Immune Suppressed Kids

While Canada begins to relax please don’t forget. Coronavirus has taken the world by storm, exposing issues in healthcare, ravaging seniors homes and putting the most vulnerable at risk. As a country we have fought back – for and with each other by being apart. We have stood together by practicing social distancing and kept […]

Brace Yourselves – COVID Post

When I was a little girl my parents took my siblings and I to the ocean in Cape Cod. Just this past summer we took our kids there, because there was so many beautiful memories. But we primarily stayed on one side of the Cape. Once on my families adventure my parents and little brother […]

Fears

This week at work, I had an interesting conversation with some of my coworkers. There seems to be a lot of lighthearted humor around the office as a result of one person’s phobia. So, it made me think of some of my irrational fears. I inquired of my coworkers what some of there strange phobias […]

Broken Glass

I know this update is long overdue, its been two weeks since our trip to Sick Kids and we’ve had more treatment days at London Children’s Hospital since then. So I am sorry for the radio silence, things have been a little bit busy and I haven’t had a moment to do an update. When […]

Anger…The Unspoken side effect of Chronic Pain

There is a complication, a side effect that Daniel has faced that isn’t often spoken about; but that is a real issue for children who have chronic pain, and hospital visits. This big complex feeling of anger – that when he has medications, steroids, worries, fears and pain all this can invoke anger in a […]

Streams of light

Our family just returned from a vacation and it was such a joy to see Daniel running through the sand at the beach; to hear him giggle at his sister; as they dove into the ocean to see what underwater creatures lay beneath them. One day I watched the sun fade and the bright blue […]