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 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, …
On July 14, 2011 at 7:30am, 2 men became our family’s heroes. From that moment on it seemed incredible to me that we had barely spoken to them, didn’t know their names and never had the chance to say thank you. How was it possible that there were people just out there that had played …
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 …