Tag Archives: lifelong care

My husband likes tattoos.  Really likes them.  I do not have one spot of ink on my body.  An indecisive person like myself is not a good candidate for tattoos.  It’s a struggle for me to decide on where to eat out, so choosing an everlasting piece of art to adorn my body is not […]

When my son Spiro was first diagnosed with CTD, I thought it would mean better management, a quick fix, and a real turn around for my son’s symptoms. We were being seen by Canada’s leading children’s hospital. I remember that appointment with the neurologist who initially told me about Spiro’s CTD. I was alone. My […]

There are certain days that have a significance in all of our lives. Something that happened on a day that changed the path we took, or influenced our perspective, our choices, or future. For me, that day is today. For the past seven years January 13th has been a day of reflection. This is the […]

My name is Levi. I am 5 years old and ALL boy. I love everything life has to offer me. I am an easy going, BUSY, happy, funny, & smart kid.

Happy New Year friends! Have you made your resolutions yet? To be honest I don’t do resolutions, I plan for contributions. So, with that in mind, the topic for this blog adventure is going to be the gifts that are given to others. To be more specific, I want to talk about the contributions that […]

I thought this post I would write about some of the things I guess us parents all go through, at some point or other. It feels like Ella makes such huge leaps forward every day – new words, new emotions, new actions. We can forget the horrors that we have been through and focus on […]

I broke my arm about two months ago. I’m 41 and I tried to ride a skateboard. It didn’t work out. It seemed like a much better idea in my head. While I counted myself very lucky—no surgery, no cast, no major damage to joints or ligaments—the broken humerus left me in an immobilizer for […]

When they say Paris is magical, it’s true. The ACD was honored to attend the CTD workshop, organized by Dr. Aurore Curie, Dr. Vincent des Portes, and representatives of DeficSience and Xtraordinaire. It’s seldom that a rare disorder can generate enough attention to be included on a conference program, much less, garner the respect and […]

Every time I pack my bags I get this funny feeling. It’s true that I hate leaving them behind, but I can’t not go. I feel this calling and it’s bigger than me. It’s bigger than any of us. I’ve traveled to ten cities and two countries for CTD, but I’m not complaining. I’d go […]

Approximately every month my kids’ school has a P.A. Day.  These are well deserved breaks for the kids and this month allowed me to spend my first with them in years, because I actually had the day off. The day itself couldn’t have been more perfect. It was the middle of November in Canada and […]