“I Just Want to Be His Mama”

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 …

Meeting Levi

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. …

31 for 21: The Rest of the Journey

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 Faces of PVS

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 …

A Dirty Shoe

“It looks like she may have stepped in gum, or play-doh.” We’ve been harbouring a little secret around here.  Our little bum-scooting maniac is showing signs that she’s no longer content with just having access to the things directly in front of her on the floor.  She’s decided that the things on the other side …

200 Metres for Hope

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 …