This means that I can never truly let my guard down now. It's not nearly as acute and frightening, but there is always a moment of panic every time Zane says he's tired. Every time he stops playing and says he needs to rest. Every time he requests a to take a nap or seems to have less energy than normal. He recently had a sinus infection, which presented as him having no energy and generally feeling bad. This is what heart failure looks like as well and with the absence of other symptoms that's immediately where my mind went. I never thought about this those first seven years. I never questioned if something was wrong with his heart. Now that will always be a fear, a thought in the back of my mind. I quiet this fear with rational science that his heart is better than it has ever been. However, there is always the knowledge that at some point those symptoms will return and we will start the surgery process again. So my new normal is grateful, but diligent.
While looking back on this past year there are moments that surgery feels like a life time ago. It seems like a distant, painful, memory. Then there are moments when it feels like yesterday. When I walk past the PICU at work and have my breath taken away thinking about the days we spent there. The trauma fresh on my mind, but remembered with pride at all of our strength and perseverance through it all. Zane has grown so much and the experience has really matured him. He has gained a new since of gratitude for things that eight year olds don't usually think about. He has had multiple moments this past year where he has verbalized his deep gratitude for still being alive. That gratitude is a blessing only given to children who have had to actually face the possibility of death. I wouldn't wish it on any child, but as I've learned there are always gifts given, silver linings, in each hardship. That's why the best people I know haven't had the easiest of lives.
Zane's pride in his heart journey only grew over this year. There was a brief time, the first month or two post op, where he didn't want to talk about being in the hospital. I completely understood this. I was ready for him to possibly not want to talk about his heart story as much as he had previously. But as time passed, and I think as he began to fully understanding what a huge battle he had conquered, his pride and openness returned. He once again was happy to explained his condition to his classmates, celebrated his heart birthdays at school, and was ecstatic to be chosen as one of the faces of the Kid's Heart Challenge in Oklahoma this year. The love and support his teachers and peers have shown him this year really helped him be proud of what he's been through.
This part of the journey was amazing to watch. One of my parenting mottos, like I've said before, is as a parent it's not my job to shield my children from pain. My job is to point them towards their pain and tell them they are bigger, stronger, and braver than whatever hard thing they are facing. This past year was the part of the journey where I got to show him the fire he had walked through so that he could see that he is really fire proof. It's the part that makes all the tears, all the fits, all the impossible conversations worth while. It's the part where he begins to understand his own strength so the next hard thing, the next fire he has to face, doesn't seem quite so scary anymore.
As the year progressed, and the fog began to lift from my mind, I was even able to begin to think about maybe taking care of myself. This was an idea that hadn't even crossed my mind for months. I took comfort, and found a new confidence to face hard things in my life knowing that I had survived one of the worst things I could possibly imagine so anything else would seem easy. Our We Can Do Hard Things sign in the living room was a reminder of what hard things we had done and a motivator to face new hard things. A reminder that whatever hard thing I was facing that day pales in comparison to the ones I had faced before. I tried to meet each daily struggle with gratitude. There have been tough days this year for sure. Frustrated moments with each child, fits have been thrown, arguments have been had, everyone has gotten in their fair share of trouble, I've faced all sorts of hard things, but I was able to meet all these things with gratitude. I stayed firmly grounded with what a blessing it is for these to be the struggles I'm dealing with this year.
This year I was able to start reading again. When the fog of fear is there my brain can't take anything else it. I can't concentrate and would find myself having "read" three of four pages but had no idea what I'd read. I'd missed that last year and am happily reading more than ever. A little thing I know, but something I'm grateful for. Recently I read the book Of Mess and Moxy by Jen Hatmaker. In it there is a chapter titled Rewoven. In it she talks about he daughter's beloved baby blanket being torn up by a dog and how she took the torn up, broken yarn to her mother in law and she was able to remake her blanket, stronger than before. She then wrote about how this is the way God works. He doesn't do the breaking. The hard parts, the tragedies are not part of His plan. What God does is take the broken pieces of our lives and weaves them back together so that we are stronger than we were before. He takes whatever hard things we have to face and uses them to make us a better, stronger versions of ourselves.
When I read that it spoke to me so deeply and perfectly describes this last year. I've grappled with the everything being part of God's plan for a long time. This is the best way I've heard it described and it's exactly how I've tried to explain it to people, but never could find the right words to articulate it. This is how I feel about this past year, but it's also how I feel about our entire heart journey. Zane's heart condition is a terrible thing that just randomly happened. However, through this struggle I've truly become stronger, braver, and more full of gratitude than I could have ever been had our family not been through these things. I've seen my son become braver and stronger than I could have ever imagined. Sure I wish I could take it all away. I wish he was born with a perfect heart and he had never had to deal with any of the pain or heartache. But that's not the case so I'm grateful for the journey. I'm immensely proud Zane, but I'm also immensely proud of everyone in my family. All of us went through this fire and we all survived stronger and braver than we ever thought we could be.
So on May 31st this year we celebrated this amazing, scary, hard, wonderful life of Zane's. We started the day with a heart donut followed by buying Hamilton tickets for the whole family. A heart birthday present he will get to enjoy in August. Then in the afternoon we capped off our plant week activities with a trip to the Myriad Gardens where Zane proudly rocked his scar in the splash pad.
Zane's heart cake this year broke into four pieces when I took it out of the pan. So, just like Zane's heart, his cake required a few repairs but ended up as good as new.
This is what two heart surgeries and almost nine years of being a heart warrior looks like!
We ended our day with dinner at my mom's new house. I got lots of teary eyed hugs from this kid and he cuddled with me on the couch before he went to sleep. I just love this sweet boy and words can't express how grateful I am that he's still here and he's doing so well after all he's been through.
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