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 …
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 …
When you parent a child with special needs and any type of medical needs, you often hear people say, “I don’t know how you do it.” Most of the time I just shrug it off because I don’t always know either, but as a parent, you don’t think about it, you just do it. However, …
I find one of the most difficult challenges about parenting a child with special needs is trying to find a work/life balance in a world where these 2 things don’t always want to play nicely together. I’m incredibly fortunate that my job offers flexible hours and it is a benefit that I value over any …
She’s looking for number 100! 100 what, you may ask yourself? A while ago, we asked the people we love to take a few minutes out of their lives to register to become organ donors. Originally we set our goal at getting 25 people to register. We reached that goal and then decided to double …
By being a, “heart mom”, we get to see a lot of amazing things that happen on the 4th floor of Sick Kids. The staff – doctors, nurses, OT’s, dieticians, child life specialists – they all play such a huge role in making incredibly scary situations actually seem managable. Luckily, behind them, is a group …