For over a year my family has lived like most everyone else in the world. We get up, go to work and school, have fun, go on trips, eat and play….it’s all very good. Our oldest son has gone away to college and our youngest is in the fifth grade. The blessing has been that hemophilia has not been the center of our lives for a very nice extended period of time. Hemophilia is definitely part of our lives since my mighty, ten-year-old warrior, Caeleb, needs daily infusions, but after the infusion, all is well until the next infusion. I definitely can’t complain.
Despite a positive inhibitor reading, I find that during these times of “normalcy” and routine I can get pretty complacent, and hemophilia is truly something that is in the back of my mind, until I see my son run with his dogs. He loves to go to the park and run with our dogs and there is a magnificent laugh that bounces off the trees when Caeleb is giggling from extreme doggie love. He runs with sheer abandon, face bright red with beads of sweat running down the side of his face and he is as happy as ever. Yes, my son runs! But there is that limp:
- The limp that developed over a few years of constant bleeds.
- The limp that reminds me of the times he could not walk much less run.
- The limp that makes it hard to get up the steps on the bus.
- The limp that is a result of horrific pain.
- The limp that causes his knee to ache in the winter.
Seeing the hitch in Caeleb’s gait reminds me of the times we spent week after week in the hospital with no kind of routine in sight. I automatically smell that “hospital” smell and hear the beeps and whirrs of non-existent monitors. Sometimes I let that limp take away the joy I have in seeing my son run.
How soon I forget about the wheelchair that I would lift in and out of the car as we went to school. It now sits in the corner collecting dust. It’s almost like it is saying, “I’m right here…waiting. I have nothing but time, and you will need me again.” And let’s not forget the stares when we were out in public as we wheeled Caeleb in his wheelchair. That was always hard to explain to Caeleb. People assume way too much about an individual who needs mobility assistance and unfortunately they think you are exaggerating.
I could easily let Caeleb’s past define me as the mother of a son with hemophilia. But it’s not about me; it’s about making sure that my son has as healthy of an outlook on his bleeding disorder as possible. Caeleb is busy learning to play piano and trumpet, is in the robotics and Lego clubs at school, and is becoming a pretty good artist. He’s not living in the past, so why should I?
That limp may be with him for the rest of his life and it will always be a reminder of what was. My job as a Mama Bear is to make sure that my son never dwells on what was. I want him to dwell on what will be. And so will I.
That limp will never steal my joy.
Cazandra lives with her husband Joe, and 20-year-old son, Julian, and 10-year-old son, Caeleb, in New Mexico.
*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.