My child

In the midst of all the worries and fears we carry as heart parents, one of the things I’ve found most challenging is watching my child grow up much faster than I had intended.  I do believe that the experiences they’ve been through will make them a more caring and understanding adult, but it’s been difficult at times to watch them cope with these adversities, in many cases absent of understanding.  It’s been very difficult to reveal the scope of certain moments along this journey to them, and frequently I’ve found myself balancing what they deserve to know about the dangers of a surgery or procedure against what I feel they can handle emotionally.

My child has seen a lot, more than our friends and family may realize.  The cardiac ward can be a scary place for a little person with a lot of questions.  So can the oncology department, where we go for our thrombosis follow ups.   My child knows the fear of rushing with Mom and Dad to the emergency room.  They know what a “code blue” is.  They know what it means to look into my eyes and understand that something is very wrong.

My child knows that sometimes, tragically and unfairly, children die.

These experiences have taken their toll over time.  My child is very health-conscious, is scared of needles, and absolutely terrified of bloodwork.  My child has required counseling from experts at Sick Kids to explain upcoming surgeries, and what it will be like the first time they look down and see chest tubes, NG tubes, pacing wires, bandages, oxygen masks, IV’s, and scars.  They know that during the recovery there will be a lot of pain.  Even at home, my child knows how to recognize difficulty breathing, cyanosis, and coughing.  When playing they have to remember to take breaks when all their sibling wants to do is keep running.

My child knows, and has known for a while, that parents don’t have all the answers.  It’s a hard lesson to learn at a very young age, and during frightening times when at the very least, the infallibility of Mom and Dad should provide the reassurance needed to make it through.  Too many times, my answer to the tough questions has been “I don’t know.”

My child knows what it means to be brave for Mom and Dad, usually without asking.  Even during the long nights before major surgeries, at the most difficult times in their life, my child tells me everything will be OK.

I think every Dad wants to be his child’s hero, and partly despite our situation, but mostly because of it, I think I’ve managed to pull it off.  I’m very grateful too, because I’m one of the few lucky Dads who can also say the same of his child.

My child is my hero.  Her name is Sydney, and her little brother was born with complex congenital heart disease.