In real life, we never call Natalie our “CHD kiddo”. In fact, we don’t really mention it to many people. I wouldn’t say that in our home we don’t make a big deal of Natalie’s special heart, but we have learned to not let her half of a heart BE who she is. We get some questions from strangers about her chest scar and we always tell them why she has it. We love the fact that we can spread awareness and answer questions. Natalie doesn’t realize that she may save a life later on for just being who she is. But then again, Natalie has always been resilient in carrying her own life.
For the past 5 years we’ve learned that Natalie is so much more than having Tricuspid Atresia. She has deep interests, things that she says she hates, things that she says she absolutely loves (she’ll even say “absolutely”), and she has puts up with a whole lot of stuff. Her patience is getting thicker as she gets older. I mean c’mon she has a big brother (who treats her so good) who’s a year older than her. She’s learned how to toughen up a little bit. She has her moments of weakness like every kid, but does her CHD stop her? Nope.
I don’t think it ever will. I also think that she would agree with me here.
Natalie is the real ruler of our home. But there’s a running joke between her daddy and I that we let her think she is. I guess being a parent you learn reverse psychology and different other tactics the hard way. Especially when MANY other tactics fail. Natalie is actually a really easy-going kid. We’ve noticed such a huge change in her personality over the summer. The clarity of her words and how she expresses herself. Her brother had the same burst of change happen to him right before kindergarten. I didn’t know or even expect if Natalie would have the same thing happen to her. But she definitely is going through it and it’s awesome. Because the other little running joke between us parents is that she wants to be treated like a baby. But even that’s coming to an end. Thank god.
Queen Natalie is very well aware of her heart condition but doesn’t see what the big deal is. With her being only 5 we always try to explain to her the things that she can do first before we say “no” to something that she definitely shouldn’t do. I always say “shouldn’t do” because the only limitations that Natalie has are the ones that she puts on herself. Tackle football, hockey, and flipping off of a high beam at the olympics probably won’t ever be safe for her, but I know Natalie. She would try anyway. That is why I’m working on growing eyes in the back of my head.
She mentions her scars every so often. She has about 10 scars total (it could be a few more): chest scar, wrist scars, neck scars, tummy scars, even scars on her hands from many IVs. But I always tell her how cool she is for having these neat scars with a story behind them. We also joke with her that she could just tell people that she beat up a bear. She asks to look at her hospital photos not too often, but every once in a while. And I ask her, while she stares at the computer screen of a little baby with tubes and wires coming out at every direction, how she feels looking at that. She always smiles and says, “it’s okay”. Natalie asks if her heart is “fixed” and right now we just say “yes”. It’s too much and too complicated to explain to a 5 year old “well..not really..but this and that were rerouted and …..” It’s just too much. So for now we say, “yes, your heart is stronger than what it was when you were 1st born”.
It really is stronger than when she was first born… and regardless of Natalie’s uncertain future we are always overflowing with hope and the strong belief that she will be ruling this household for many, many…. many more years.
She’s too feisty to not rule that long.