Thirteen years ago, I had to learn a new language. Like any new language learning, it began with learning how to spell.
Our day-old son was cradled in my arms when the phone rang in my hospital room. Thomas had been bleeding from his circumcision site since the day before, but I honestly wasn’t overly concerned. In my mind, of course he was bleeding – he had just had what amounted to surgery. Our pediatrician had assured me earlier that morning that he would “get the bleeding stopped.” He was worried, though, but has a great poker face; he recognized it wasn’t normal bleeding and ran lab work. By that afternoon our pediatrician was on the phone with me and my husband, saying, “I’m sorry I can’t be there with you right now. I always cry when I tell a family bad news. Thomas has severe hemophilia.”
My response: “How do you spell that?”
In the years since, we’ve not only learned how to spell hemophilia, but to live and even thrive, with it. It’s not been an easy path, but a path full of exploration, adventure, and even rewards. It’s been wrought with an education into medical lingo and insurance terminology. The vocabulary came easier than learning some of the hands-on, real world techniques.
The last thirteen years have been filled with a PhD level education about hemophilia. It’s not easy material to learn, but we learned it nonetheless. We didn’t set out to learn the language of hemophilia, but we had to and now we are quite fluent in it.
Sometimes you just don’t want to learn a new language. When Pokémon Go became a worldwide sensation earlier this summer, I resisted. I thought the game sounded like a horrible security risk. “I’m going to send my child wandering around intently focused on his phone looking for some make-believe thing-a-ma-jig? No thanks.” But my husband, Nathan, is insatiably curious. He downloaded it just “to check it out.” Within twelve hours, Thomas had it downloaded on his phone too.
There’s now a new language floating through my house. Nathan and Thomas have spent the last month on a new path of exploration, adventure, and rewards. They have a lingo and vocabulary I don’t understand and at first that irritated me. But then I listened: there’s a real beauty in this new language. There’s no talk of bleeds, or infusions. The only time I hear “poke” is in reference to Pokémon.
And the best part? This game (which admittedly for the first weeks I called “that blasted game”) has opened my child’s eyes to being outdoors and getting some exercise. That’s another whole new language to him. Hemophilia and inhibitors have kept his activities pretty limited and video games have been a saving grace. But this video game has encouraged him to get up and move, and despite my earlier concerns, he’s been able to do so safely and at his own pace.
Keeping an open mind and continuing to learn is best lesson we can ever teach our children. While I’m not sure that I’ll ever be as comfortable in speaking Pokémon as I am speaking hemophilia, I am sure that giving in and letting Thomas have the opportunity to learn that new language was a good decision.
And for the record: to properly spell Pokémon, you need that little accent over the e and you just have to hold down the key on your keyboard. 🙂
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Sonji lives with her husband, Nathan, and three children Nora (14), Thomas, (13), & Natalie (10), in Colorado.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.
