ACD

05Jan 2017

Sitting in strollers in waiting room

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

28Dec 2016

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

13Dec 2016

Group of Supporters

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

08Dec 2016

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

04Dec 2016

Whitnie & Reid

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

30Nov 2016

Spiro with bird seed

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

25Nov 2016

max-soccer

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

23Nov 2016

Six Boys Halloween

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

21Nov 2016

Trenton Smiling

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

11Nov 2016

Beth's Kids

I woke up this morning with anxiety. We needed to change my daughter’s g-tube today. Through the course of treatment for GAMT, it became clear that she needed it for several reasons—medication administration, additional nutrition. She may not always need to use it as she gets older, but it was the best decision for us at the time. Because the g-tube can physically deteriorate, it is necessary to change it every few months. I do this for her at home. It’s not a great experience for either of us. Despite changing it every few months for the past five years, the idea of it still derails her. Continue reading