We are in a new town. A fresh start. My mighty warrior already loves the landscape that allows him to catch frogs and snails and marvel at the rain. When we lived in the desert, the eyes of our little boy didn’t see these things as easily. While in the desert, hemophilia had a good hold on him. Many of those years were filled with hospitals, needles, pain, wheelchairs, and missed days of school due to repeated bleeds.
Over the past three years, his health has improved tremendously, and Hemlibra (emicizumab-kxwh) is giving my Caeleb a new outlook on life. As he prepares to enter the seventh grade, I find that I am already thinking about the school year to come. How will the kids receive him? It’s a very small town, and everyone knows everyone, and the new kid could be a target. They don’t know about hemophilia. They will never understand how bad it can be for him. Is that a good thing or a bad thing?
Our new chapter will be different regarding hemophilia. The past is the past and will not be dredged up because it is not how Caeleb lives right now. He will be starting school as a kid who looks like everyone else, is bright and funny and a world-class goober like most seventh-grade boys. If you watch closely, you may catch a glimpse of his limp, but other than that, you would never know that he has suffered.
Caeleb has made a new friend two houses down from ours. They play basketball and go to the park every day. This afternoon, they put on their swim trunks and met in the backyard to play with the water hose. This is not an odd thing to do in the summer, but my first thought was, “What will his friend think when he sees his port? What do I need to do?” And I realized that it was his explanation to give if he wanted.
I am not just letting go of the control that I had as the mother to a little boy with hemophilia; I am letting go as my little boy begins to find his way as a soon-to-be teenager. A teenager with hemophilia who is not bleeding. I never dreamed he would be at the point of not bleeding on a regular basis, and it is still hard to accept.
It’s a new chapter in my mighty warrior Caeleb’s life. A chapter with blank pages waiting for exciting stories and adventures. A chapter filled with excitement to be fulfilled with an imagination that can take him to his wildest dreams. Our family will do our best to help him live to a new potential that we had not considered possible at one point in his life.
I will never have a 12-year-old boy loving the summer before his seventh-grade year again. I am cherishing this time, watching him run and play, with more frogs and snails to catch, and with laughter to be heard around the neighborhood.
I am one grateful Mama Bear.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.