When we finally got discharged from the hospital, we had to stay in our Gainesville apartment for about a month before we were able to come home. Since we didn’t want to expose N to a lot of people (germs!), we pretty much stayed inside the house when we weren’t out walking the dogs. This offered me a lot of time to ponder how I was going to handle teaching N that he is not a normal child. I really struggled (and am still struggling) with how to go about doing this.
On one hand, I want him to be normal. I know the idea of normal has about a thousand different definitions, and everyone’s normal is unique to their situation. But the crux of the issue is that I don’t want him to feel alienated because he isn’t going to be like a vast majority of his peers. He has something very distinctive about him; not many people go through what he went through. In my twenty six years before having him, I had never, to my knowledge, met someone who had had a transplant. I had never known anyone who had been on life support. He will know people who are like him simply by meeting or seeing them in clinic, or perhaps we may send him to a Congenital Heart Defect (CHD) summer camp, who knows. But statistically, he’ll probably be one of very few (if not the only) kids in his daycare or school who has that kind of medical history.
We struggle with letting Davis be a “normal” baby, especially with his immune suppression being so unstable. We don’t ever want our fears to hold him back, and we want him to truly enjoy the life he has.
-Amanda and Tucker Boswell, son Davis 15 months post heart transplant
Being different can be difficult. On one end of the spectrum, it may distance you from your peers because you feel like you don’t belong. This goes back to the herd mentality. Conformity is the key to survival. Whether it’s intentional or not, kids can be incredibly cruel. They are often brutally blunt about identifying something different from themselves, and their social filter is virtually nonexistent. I’m terrified of the first time I hear some other child blurt out, “Mommy, look at that boy’s scars!” Do I ignore it? Do I explain it to them? It’s no one’s business but our own, but I don’t want him to become a pariah.
I don’t want him to feel the need to cover himself up, either. What about the first time he’s invited to a pool party? Or to the beach? How many people are going to stare and point? How will he handle the attention, whether it’s outright negative or simply curiosity?
On the other hand, being different can make you a novelty. He’ll always be “that kid with the really epic scar” or “that kid who has a transplant.” He’ll always have a really unique conversation starter and that shock and awe factor.
My hope is that we can instill enough confidence in him that the stares and his differences won’t bother him. I am also hopeful that he can form close friendships with some children his age that he can grow up with that will be almost desensitized to his condition, to the point where they don’t even acknowledge it as a difference. He can be just another kid to play with. I think that’s how we create our own normal.
The flip side of that is understanding that what makes him different is truly extraordinary. He is a warrior. He has overcome more in this past year than many do in a lifetime. He’s certainly stronger and braver than I could ever be, and he’s only one! That is mind-boggling to me! I want him to always know how incredible he is, and that this thing that makes him different is also what makes him so spectacular.
In order to do that, and to make sure that ideology is deeply rooted before the seeds of self-doubt that are sewn in the teenage years take hold, I need to start now. My high school Latin teacher preached to us that Repetitio Mater Studiorum Est, or Repetition is the Mother of Studies. If you study something and repeat it over and over to the point of exhaustion, it becomes ingrained within you. That’s going to be my approach. If I tell him often enough how incredibly amazing he is, just the way he is, he’ll believe it. And if he believes it deeply enough, no one can take that from him.
I’ve begun this indoctrination process through a silly little book I wrote for him called Super N. There are tons of kids’ books featuring children as the protagonists, and this helps children relate to those characters and their situations because the characters are just like them. But go figure, there aren’t many children’s books about getting a transplant, taking your medicine, and being a good boy at clinic. That’s when I decided to write my own book for N (I’m suddenly seeing a trend here). What better way to find a relatable character than to make him the star of the story?
When you have a baby nowadays, somehow the Powers that Be find out about it, and they drown you in coupons for anything and everything baby related. I got coupons for $100+ designer fashion nursing covers, every brand of formula under the sun, customized family portraits, you name it. Luckily it just so happened that amongst the pile-o-coupons was one from Shutterfly for a free 8X8 photo book, so I thought “What the heck. It’s free and it can’t hurt.” I opened up Microsoft Paint and started sketching. Let me tell you, folks. It wasn’t pretty. But I “painted” these little cartoons of an ambulance, the airplane he flew to Shands in, his ECMO machine and Berlin pump, and even an Echo machine. I drew them all with happy, smiling faces, and in the text I wrote about how they were his friends and helped him get stronger so he could get a new heart and become Super N (he even has a cape in the story; it’s pretty awesome). I included his scar in the cartoons of Super N so that it would normalize that piece of it for him as well. There’s a portion about how he has to take his medicine so his heart will stay strong, and the script on the bottle has Super N on it. You get the picture.
By reading this story to him, and by making him the main character, I can show him that he can be the hero of his own story. He can be this awesome person and accomplish whatever he wants even though he was so sick. Heroes are often depicted as having rippling muscles, a chiseled jawline, flawless hair, and some form of super power. My hero has a zipper scar and an Alfalfa hairdo, but he will always know that he can be just as much a hero as the next person.
If your child is currently in this stage, I encourage you to write their story out for them. At the very least, it’ll be a fun little keepsake when they are older, and at the most it’ll normalize something about them that is very abnormal. Personalizing their story and sharing it with them will help them feel special rather than odd or different. Toddlers are incredibly primitive, emotionally overloaded beings. They don’t yet understand anger, fear, happiness, or sadness. So meeting them on their intellectual and emotional playing field and talking to them in a way they understand will generate far more success than trying to lecture them. That’s why kids’ stories are so helpful in teaching those lessons.