Tags archives: Celebrations

  • To Witness Love

  • You might think, from the title, that I'm about to tell you how incredible it was to witness the birth of my new niece, Penelope, this week.  You're not entirely wrong.  Being allowed to be in that room, to share this moment with my sister - my other half - is beyond anything I can put into words.  To be one of the fir[...]
  • Keep Love Alive

  • "T'is the season when the saints can employ us to spread the news about peace and to keep love alive." 10 points to you if you knew that was from A Muppets Christmas Carol, but another 10 points if you know that for all of the Christmas songs and carols out there, this is the one line that always takes my breath away.[...]
  • Worried Voice vs. Mamma Voice

  • So, Lily  has had a walker since she began junior kindergarten last year. We've had some success with it, mostly because the staff at her school are incredible and just keep pushing her.  She would take a few steps but for the most part would just use both feet at the same time to push herself forward.  She could only [...]
  • We're On the Next Chapter

  • The last of my guest voices is an incredible photographer, Kelly Searle, who I'm still hoping will decide to make an impromptu trip to Toronto one day when it just happens to be gorgeous outside so that I can use her incredible talent to capture some new photos of Lily, but I digress.  Kelly is also the mamma to Dolly,[...]
  • Jax's World

  • Shortly after Lily came home, Jess was talking to a woman who said to her, "I've heard about people like you."  A little taken aback, for a moment Jess wasn't entirely sure which of the "like you" categories the woman was referring to - lesbians or parents who had chosen a child with Down Syndrome.  The woman was refer[...]
  • "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 ar[...]
  • 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 time, but we just needed some [...]
  • 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 [...]
  • 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 of t[...]
  • 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 afternoon, I will take my place and hold that torch pr[...]
  • #500 for 5

  • 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 lifetime, especially whe[...]