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. Continue reading
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 our “Creatinies” make to the world in which we live. I have been asked more than once what I think our three awesome boys will grow up to be, and my answer is, and will always be, “Grow up to be?” Continue reading
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 the positives, because that’s the only way to move forward.
But at some point, life can serve you a stark reminder that it’s not always ups – we have to learn to take and deal with the downs too. Continue reading
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 six weeks. Six weeks of one-armed activity. One-armed getting dressed, one-armed doing my hair (which proved to be the most difficult, if not impossible, activity), one-armed cooking, one-armed mothering. I wasn’t even able to drive for the first week of my injury. In my house, I need all hands—and arms—on deck to make things run. Continue reading
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 interest from medical experts around the globe to deserve its own dedicated meeting. Continue reading
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 anywhere for him. Continue reading
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 we were treated to sun and 15 degree weather. A beautiful day. So I took advantage of the day and we went to a place nearby called Lynde Shores. Continue reading
I’m grateful for so many little miracles in my life. Every time I watch Max play soccer or hear him bounce the basketball, I am grateful. There was a time, not long ago, that I thought that Max would be very, very different from kids his age. Even today, I have a fear that something will change and his condition will worsen. Continue reading
Thanksgiving is upon us friends, and let me personally wish each and every reader a Happy Thanksgiving! (Those of you not in the United States, feel free to scarf down some turkey and pie, just for the fun of it!) The post this week will be what I am thankful for, or at least a few of the things, because my blessings are honestly far more than I can fit here, nor would you want to read such an exhaustive list. Continue reading
I would have never guessed in a million years that I would have a child who has CTD. I mean, who has even ever heard of it? I sure hadn’t. Not until the day we finally got in to see a geneticist. I still was skeptical. All these tests they were running, all the time you hear that it is a less than one percent chance that your child will have this or that, it would never happen to me right? Continue reading