In honor of May being “X and Y Chromosome Variation Month”, I thought I’d kick off my first blog post on May 1st. Well, you can see that didn’t happen. I have good intentions but like with so many things in life, I have one idea or activity and another pops up and another and another and the thing that I had started with doesn’t seem so important anymore, or if it does, it gets put behind those that are important to others. And that’s okay – I’m a mom. That’s our role, right? To put others’ needs before our own. I’m a mom of a 15-year old with Klinefelter Syndrome – a chromosome disorder in which boys receive an extra copy of the “X” chromosome. I’ll talk more about this in later posts, but for now I’ll give you a typical morning in our house.
This morning I watched as Ben struggled to get out of bed for 8:30 a.m. baseball practice. After reminding him to put on deodorant (twice), brush his teeth (twice), and gather his things for practice, I heard Brandon encourage him again to ride his bike to practice, which was only a few blocks away. As I watched them pull out of the driveway a few moments later, I realized that Ben was due for his testosterone shot so he was not only low on energy but having us ask him to ride his bike to practice was really similar to us asking him to climb Mount Everest. And it would be no surprise to me if he didn’t brush his teeth or put on deodorant either. It was also no surprise to me that they had to pull back into the driveway for Ben to get his forgotten glove.
When he came home a few hours later, Ben went directly downstairs, sat on a pile of folded laundry, and turned on the TV – without saying a word to either of us. Brandon gave me the look and asked me to talk to him. I assured him that Ben was fine but made my way downstairs. When Ben is in one of his moods, it’s best to tread lightly.
“How was practice?” I said, as I started refolding the laundry that he had knocked onto the floor.
“Gghh.” (This means good.)
“The weather is great. Why don’t you go outside and ride your bike or kick the ball around?”
“Gghh.” (This also means no thanks, I’m good.)
“Did you realize that you knocked all of the folded laundry onto the floor? Why don’t you pick it up while you’re sitting here watching TV?”
You can guess what his response was to that. This is often how our conversations go. Although Ben is a guy of very few words, he has come so far with his communication skills. At one time, he wouldn’t talk to us at all – he would use anger, tears, and violence. Then when he got older he used art. Then came texting. Now he uses words and sometimes even humor and sarcasm. The other day I told him it was “Hug Your Mom Day” and he reluctantly gave me the BEST hug. He later came upstairs and said “Mom, I googled that and it is NOT Hug Your Mom Day!” I’m still laughing about that one!
Having a child with Klinefelter Syndrome can be challenging, frustrating, and on some days, disheartening – but it can also be rewarding, amazing, wonderful, and fulfilling. Our experiences with 47XXY have been so unique and I just want to share them with anyone who wants to read about them in hopes we can spread awareness, education, and just real life experience – so enjoy the blog. This is KSMom! Kansas Mom, Klinefelter Syndrome Mom, or just Kinda Sassy Mom.