Last night, I had a really hard time falling asleep. Instead of the usual crashing that I do at the end of the day, I ended up laying my head down and my mind started racing. You know how that goes. Those nights where you just can't stop thinking. You jump from one thing to another. Sometimes it's good stuff. Sometimes this is when I do most of my worrying- late at night, while I listen to the husband snore.
This time, I started to think about Natalie. I couldn't figure out why her 5th birthday felt more special this time. It just did. I was fixated on why hadn't I planned a birthday party for her? This miracle has been part of our family for 5 whole years.
I can't say that my days of thinking about her health and being worried have ended. But those days have become far and fewer between especially since her recovery of her Fontan 2 years ago. With each surgery that she has gone through I've always known that we have bought more time with her. Because as a CHD parent you know this immediately after getting the very first diagnosis- that all surgeries allow you more time to spend with your child. For the most part, no CHD can be fixed. But doctors and surgeons have learned to figure out ways to bypass the problem. To reconstruct. To allow your child more time to grow.
Everything after childhood becomes a science experiment. Natalie is one of those children growing up in a new day in age where she wasn't tagged with "blue baby syndrome". Her defect had a specific name and very specific surgery already planned for it- a surgery that becomes perfected every year. Even an outcome has been expected. Just like our lives, Natalie's life is unpredictable as well. She could live to be 30,40,50, or 80.
I kept letting my mind wander last night to those days we spent by her bedside during her recovery from her 3 surgeries. Especially with the 2 where she had very large chest incisions. And how terrified I was. How terrified both of her parents were. How scared we still are. And how we won't let the fear run our daily lives. We can't. Natalie won't let us.
Thank god for that.
When Natalie was diagnosed at barely 3 weeks old, I sat in the cardiologist's office and I felt like I was holding this ticking time bomb. I felt like my little child was going to die at any point. I somehow believed that the surgeries would save her, but proof really was in the pudding at this point. I know that this sounds so morbid. And so dramatic. But in a way, maybe it's not being dramatic.
Sometimes, okay, most times I feel like I don't have a right to even think about how I feared her dying at any moment. I don't know why, but I still feel that way. Is it because it could turn into some self-fulfilled prophecy? Am I just being paranoid? In 2007 and 2008 why did I only hear of CHD-related deaths and no good outcomes? Does anyone survive living with half of a heart?
Or do I really feel like she could die at any moment and I have zero control? That is the real question. Because that's the part of the whole CHD world that every parent dreads- hearing and seeing the words "sudden cardiac death".
But even I could succumb to "sudden cardiac death" because of heart disease running in both sides of my family. Anyone can.
I still check her in the middle of the night sometimes. I have never typed this before, but if James gets up in the morning before her I panic and immediately feel this blanket of horror take over. I am so terrified that one day I'll walk into her room and.... well..... okay...... that's getting morbid. But it's my brain and that's how my brain likes to mess with me.
But it is what it is.
And every time I check her, she's warm, completely alive, and beautifully sleeping. And I hold onto that feeling of relief and those words that echo in my brain "see!!! you worried for nothing!!! stop doing that!!!" I do..I yell at myself in my brain. I really should put those words in CAPS.
If you've had a newborn, especially your firstborn, you totally understand where I'm getting at. That new mom fear that keeps you checking your 4 week old in the middle of the night every so often. If you know of this feeling then that's exactly how I still feel about Natalie- 5 years of this feeling and I know it'll never go away.
But lately, I've spent less time worrying about her health. Because she continues to kick the hell out of CHD's ass, I don't have to spent so much time being concerned. Yeah, the worry is there 24/7, 100% of the day and the week but I can push it a little further to the back of my brain everyday. And hell yeah, I get those panic-ridden feelings of rushing in to check her in the middle of the night but it's no where near as often as how it used to be.
I sit here and watch Natalie race around the apartment with her stuffed Ariel and stuffed cat "Loki". Playing mermaids and giggling along. Having fun like usual. I wish I could have x-ray vision and see her little heart pumping along with her shunt and to see those lungs working hard. I imagine how beautiful it must look. Her heart is what I always love to call "modified". It's better. It's awesome.
It's never going to be fixed or cured, but she has a beautifully reconstructed, modified heart.
A child who is going to turn 5 years old in a week, was heading into a downward spiral pre-Glenn shunt at 5 months old.
Science is fucking amazing.