I'm six years into being a heart mom. In those six years there has been a lot of hurdles, a lot of milestones, and a lot of lessons to teach. From the very beginning there were a few things that I wanted to make sure I got right. First of all I wanted to make sure Zane knew about his diagnosis. I wanted him to understand it and not be ashamed of it. I wanted him to know what he went through and to be proud of the scars he bears. I also wanted him to feel comfortable talking about. I didn't want this one part of his life to define him, but I wanted it to be a part of his story that he could celebrate. Through the past six years there have been a lot of long talks and lots of looking at pictures. From when he was very little he wanted to know about when he was in the hospital and I wanted to tell him. I've discussed on various levels of learning from "you're heart had a boo boo that had to be fixed." To our most recent conversations about what would have happened if they hadn't fixed his heart. As he grew our conversations grew.
All of this hard work, for me, was preparing him for when he exited his little perfect bubble at home and went out into the big bad scary world of school. Where no one knew his story, where kids were mean, and he needed to be able to stand strong in his truth, in his story. I am happy to report that after a few months in kindergarten and I think I can officially say all of our hard work has paid off. On the second or third day of school he told his teacher about his surgery and his scar, after she didn't ask him about his "I'm conquering CHD" tshirt. Then this month I saw that his birthday was listed on the 19th. It was a happy accident leading to him being able to celebrate his heart birthday at school. A week or so ago he told me that he had "told his class about his heart surgery." He told me that his teacher had asked him to explain his heart birthday to the class. Then my six year old, brave, confident, proud, heart warrior stood up and told his peers about having heart surgery as a baby. He explained that every year, on the day he had surgery, we celebrate his heart and his life. He didn't show his scar, because he "was embarrassed," which I don't believe, but I'm sure everyone had already seen it.
I can't imagine having this strength, this confidence in myself at six years old. I'm glad that he didn't go into the gruesome details of how they cut his chest open and tied it back together with wire. I am beyond proud, that at six years old, he has the words and understanding of his diagnosis to tell his peers his story. So today he and his class celebrated his heart birthday. He was quick to tell his teacher that this wasn't the actual day of his surgery, but close enough. In his class there is a birthday bag that each child takes home. They bring back their favorite book, snacks for the whole class, and two pictures of him and his family. Zane picked out a family photo (per the instructions), then he asked if he could take a picture of "his surgery." After telling him I didn't have pictures from inside the OR. We settled on the scrapbook page from when he was in the CICU. I could see his first childness shining through, since the page had four pictures on it and the rules said to bring only two pictures, but we powered through and he brought the whole page.
Of course I had to work on his big heart birthday celebration at school, but he brought cookies, his favorite book "The Naked Mole Rat Who Gets Dressed," and his pictures. When I got home he was wearing his birthday crown and told me he'd had a great day. He said his friends called him brave and were all "happy he is ok." Aren't we all big man. Tonight I will rest a little bit easier knowing that this kid has is a proud heart warrior, ready to tell his story and proud of what he's been through. May you never loose your confidence young man! I love you so much!!
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