Tales of a TET Baby: Age Four

From that day, four years ago, when our tiny, five day old Zane was diagnosed with Tetrology of Fallot, instantly a list formed in my mind of the specific days in the future that I was dreading. Of course the obvious first day on this list was surgery day. Beyond surgery there were other days I knew I would be facing that filled my heart with ache; when Zane was old enough to notice his scar, when he began to realize that his scar made him different, the day someone said something mean to him about it, the day they tell us that is condition is worsening and it is time for him to get a valve replacement, and the day that he asked/figures out that he will have to have another surgery. That last scenario happened, completely unexpectedly a few weeks ago. 
 
This day I had been dreading came out of the blue while Zane and I were cooking dinner. In between chopping things up and stirring our creation he said, "Mamma, am I going to get another stripe." What a weighted question. I knew in a four year old mind, "another stripe" means literally another stripe, beside his current one. If he needs open heart surgery it'll be the same strip just cut open again, not easy to explain to a four year old. Or if they can do his valve replacement via cardiac cath, which everyone assures us will be the case, then he won't have to have "surgery" per say again, but still needs a repair. That's even harder to explain to a four year old. As these things were going through my head I found myself trying to explain how heart valves work to a four year old. Then I stopped myself and realized I truly had no idea what to tell him. I knew that this was a question he would have and that eventually I'd have to explain to my son that his heart, though it has been repaired, isn't fully functional either. But when I envisioned this conversation I didn't picture trying to explain it to a four year old.
 
We stopped what we were doing and I sat down with my beautiful blonde headed boy, who by this point had more than a bit of fear in his eyes, and I did my best, in that moment, to explain that his heart still doesn't work quite right. "Is it broken mamma? But you said they fix it when I got my stripe." And then that all too familiar feeling of my heart sinking and the realization that we can't pretend that it never happened, set in again. This feeling is followed by a deep sigh, tears welling up in my eyes, and me feeling a little bit sick to my stomach, all at once. I told him that it's much better, that he isn't sick, that everything is fine for now, but when he is much much older doctors will need to fix it a little bit more so that his body can stay nice and strong. Who knows what parts of that conversation his four year old mind heard, how it was taken in, or if he understood anything at all. However, since we had that conversation the topic of his heart condition, and his need for another repair, (getting another stripe) has come up in some shape or form everyday. So he obviously took some part of what I said into his little mind.
 
It just so happens that this past week I started the process to get him into a pediatric cardiologist here. I desperately do not want to do this. This means hurdles to jump through to get his medical records here, then more hurdles to actually get an appointment. All these hurdles involve retelling my son's medical history over and over, followed by the eventual cardiologist appointment, which judging by how Zane and I's conversation went, might be traumatic. The appointment will be a full reliving of his heart history, going over everything with someone new, who I'm admittedly hesitant to trust. As much as his cardiologist in St. Louis was the person to deliver my life's worst news to that point, I truly grew to love him. He was there through every step. He loved Zane and was a wonderfully kind man. I loved that hospital and trusted everyone in it to be the best of the best, because I worked beside them. There was no doubt in my mind we were at the best place for him and I felt beyond confident in his care there. I'm sure they will do a great job here as well, and honestly I know exactly what they will say to us. So in reality this particular appointment shouldn't be a big deal, but again, I'm always concerned for the future, hoping we are in the best place for him at that time.
 One evening, while explaining to Zach about the numerous hoops we will be jumping through, Zane heard me say the sentence, "My son has Tetralogy of Fallot." When Zane heard me say this, he turned to me with a look of complete terror on his face and began to cry. I realized in that moment that he had most likely never heard the actual name of his heart condition before. And to a four year old I'm sure those big words sound terrifying. There were no words to explain it, I just cuddled him and reassured him that he was fine, and that mommy was just working on getting him a new heart doctor here. The day after this happened I was picking him up from school and the new director asked me if I was a doctor. When I explained that I was a nurse she told me about how Zane had showed her his scar and told her he was going to have surgery again. She thought this was just so cute, I can't help but think why he feels like it's the first thing he needs to show people when he meets them. 
So four years later our TET tale evolves. I am trying to stay on my toes and be more prepared for the questions he might have. I am researching better ways to explain everything to him. I am counting my blessings that he was born with such and out going, confident in his own skin, spirit. I remain grateful that he is here with us to have these conversations, as I am constantly aware of many children around the world with his condition who don't make it to this point. There are lots of days that I never think about it now, which was a point I wasn't sure I was ever going to get to. However, a lot of those days are now abruptly interrupted by Zane's questions or conversations about his stripe or his broken heart. By the grace of God our story continues and it appears this story line is going to remain a major part of our life.