This is not a sad story.
“After Alexander” actually began quite unintentionally. My son, Alex was born in 2009 with a very rare and complex form of congenital heart disease (CHD) called Right Atrial Isomerism. In the weeks that followed his birth, I needed to find a way to communicate with our family and close friends who were understandably concerned about our situation. Phone calls weren’t working out so well because we were exhausted, and it was difficult to remember all the facts about his condition and to explain what they meant. It was also very difficult to hold it together in those early days. Our world had kind of been turned upside down and we were terrified. The first piece of advice I received was from my Aunt. My cousin had spent a significant amount of time in hospital as a child, and my Aunt told me I should keep a journal.
“It’s a great way to keep the facts straight and to get your feelings out”.
My journal took the form of a series of online updates posted through carepages.com, which remains my forum of choice for Alexander’s health-related updates to this day. The feedback I received from family and friends was very positive. I was able to explain the medical terminology in simple terms and usually draw a lesson, or some unique perspective from even our scariest moments.
Early in 2015, I was encouraged to contribute a few pieces towards the Cardiac Kids blog. Cardiac Kids is a wonderful group that raises funds for children who are suffering from Congenital Heart Disease. I agreed, but decided that my writing would focus less on the specifics of Alexander’s condition and more on what I’ve learned, and the many ways having a baby with CHD has impacted my life positively. Though at times the fear and uncertainty have been overwhelming, I wouldn’t trade my experiences or the relationships I’ve built over the last six years for anything.
So, as much as I enjoy offering contributions to other people’s blogs, I decided recently to take the advice of several friends, and start my own.
Who do I think can benefit from following? Well, I think that new parents of kids with CHD, or other serious progressive diseases will relate best, especially other Dads who might be struggling with their feelings about their new reality. It took me a while to sort a lot of this out for myself, and I know what you’re going through. I also believe that anyone can appreciate a new perspective on a difficult situation from time to time though, so even if you’re not a parent, or your kids are perfectly healthy, you may still enjoy reading along.
This story starts with Alex, and continues to evolve for all of us who know him. I hope you enjoy reading about my new outlook on life, the lessons I’ve learned, and the man I became, after Alexander.
