I’ve never been one to give into feelings of despair. I’m a generally positive guy, and pretty good at keeping a level head and remaining optimistic about the future, even in the face of a daunting reality (I am a lifelong Maple Leafs fan after all).
This side of my personality has served me well in my role as a Heart-Dad, though that’s not to say I haven’t had my moments. There have been some pretty good breakdowns, few and far between, and they usually happen when I’m driving alone. The next time you see a weepy guy parked next to you at a red light, it’s ok, he’s probably just a Heart-Dad.
I think something that we have in common as heart parents is that at one time or another, we’ve all imagined what our lives would be like if the worst happens. What if he doesn’t make it? How long do we get to have him for? For me, these thoughts creep in from time to time when I’m thinking about the future, and they crush me when one of our friends loses their little warrior. I know that the medicine and science continue to advance, and without a doubt I’ve seen miracles that should restore my confidence, but the doubts still weigh on me from time to time.
I remember in the weeks leading up to Alexander’s first surgery, I was feeling particularly overwhelmed. It just hit me one day that this entire situation really didn’t fit into my plan. Leading up to Alex’s birth, everything seemed pretty well thought out… business was good, we were into our new house, my daughter was thriving, the new baby was coming, and summer was on its way. Nowhere in my plan did it read “become a heart-parent and learn the meaning of fear and uncertainty”. I was sitting in the office of my family doctor, discussing Alexander’s upcoming operation, when I finally said those fateful words…
“Why us? What did we do? Why did this happen to our baby?”
Now I know that thinking like this isn’t healthy, but I said it anyway. I’m not sure how I was expecting my doctor to respond, after all, it was more of a rhetorical “woe is me” sort of question. You should understand, I’m 37 years old, and I’ve had the same family doctor since I was eleven. Our relationship is strictly professional (we don’t hang out after work), but there’s a bond there, a familiarity built over years of watching me grow up. I guess I was expecting her to say something comforting; the response I got was something different…
“Why not you?” she asked.
I remember being really surprised. I felt a little angry actually, because I didn’t find her response particularly helpful in the moment.
“In my line of work, I hear lots of people ask that question, and then they leave it there, and just go on feeling sad and bitter. My advice to you is to try to answer the question you just asked me,” she added.
I’ve given her response a lot of thought since then. “Why not me?” It’s a strange point of view.
Well, we live pretty close to SickKids, so getting to our appointments isn’t too challenging. My career offers good flexibility when I need it (I run a company with my brother), so I get the time away I need. I’ve also got a wonderful team at work, and someone I trust completely to manage the business while I’m off, so that’s helpful. My wife Michelle and I balance each other perfectly as we deal with the stress of our situation; we’re usually able to stagger our little breakdowns so we can support one another. Alexander’s sister is incredibly patient and gentle, and her personality is well suited to growing up with a heart-sibling. Alexander has three sets of loving, engaged grandparents, who are incredibly supportive and involved. He’s also surrounded by incredible aunts & uncles, godparents and friends. The staff at his school is remarkable, and very caring. We have a strong faith and are a close family. We even live next door to a recently retired SickKids nurse.
“Why us?” I asked once.
“Why not us?” I reply today. We’re actually uniquely well equipped to handle this.
I know that even among heart-parents, it might seem like rationalization, but believe me, I’ve given this a lot of thought. I suspect that if you actually try to answer the question, you might find you’re the right choice for the job too. At the very least, it will make you evaluate your situation, and might make you thankful for some of the little blessings you took for granted.
Perspective is something I think about a lot, and with that in mind, consider this. That precious little heart-baby didn’t just become part of my life, Michelle and I also became part of his. From that perspective, when God chose a family to raise a child with a complex heart condition, for however long we have, He chose right when He chose us. There has never been a doubt that Alexander is in the right place, and I am so grateful for him.
“Why us?”
Because Alexander is our son, that’s why. In the end, it could be no one else.
Originally published on “Joshua’s Hope”, 2015.
