The thing about the thread that binds parents of children with Down syndrome is that, like all thread, it can sometimes seem invisible. There are moments in time when parenting our children can sometimes feel lonely. This doesn’t mean that we don’t have amazing support systems from our family and friends but there are days …
Once Lily was officially home with us, we began taking her to weekly sign and music programs aimed specifically for parents and children with special needs. The majority of children attending the program along with us had a diagnosis of Down Syndrome, so it felt a little bit like walking into our own special clubhouse. …
We took some time after Paxton to just settle for a bit. After all of the rushing, we didn’t want to keep pushing ahead and were obviously scared about more heartbreak. We needed the time to reflect and figure out what to do differently the next time. We knew that there would be a next …
The moment that Lily’s surgeon started talking is captured like a snapshot in my mind. For me, it’s the line in the sand that defined “before” and “after”. We, unlike so many parents of children with Congenital Heart Defects (CHD), knew of Lily’s original heart issues, AVSD and Coarctation of Aorta; we were prepared for …
On Friday afternoon I will walk 200m up Spadina Avenue. It should take less than 5 minutes but it will be 5 minutes that I hope will go on to mean so much more. Earlier this year I applied to be one of the torch bearers for the 2015 Parapan Am Games and on Friday …
5 years. Since just after that horrible day 4 years ago, the goal has been 5 years. “Take her home and grow her,” they told us, “if the day comes when she needs a heart-lung transplant, the success rate improves dramatically once a child is 5.” It seemed impossible. 5 years felt more like a …