The Ordinary Becomes the Extraordinary

The Ordinary Becomes the Extraordinary

The favorite Winter Olympics sport in my home is figure skating. My husband can tell you who won which medal in any Olympic games, and when he hears a piece of music that was used by a skater, he can not only tell you the name of the piece, but also who skated it and when. It’s something that has been his passion since he was a kid and he has even recently started teaching lessons at the local rink. What surprised me was when my youngest son, my mighty warrior Caeleb, wanted to take lessons.

Caeleb has gone ice skating with my husband numerous times and he even broke his wrist at the ice rink the day before summer camp. We enrolled him in lessons, and he now looks forward to Saturday mornings at the rink. He even “assists” his dad with the beginner class.

My husband came home in amazement after Caeleb’s last lesson. “You wouldn’t believe what he is doing!” exclaimed my husband. Caeleb is soaking up the instruction from his teacher as he learns to skate backward and has even begun to skate “crossovers.”

Caeleb is 12 years old and taking lessons at the local ice rink. He’s not in training to become the next Nathan Chen, he is just skating for fun. This may not sound like an extraordinary feat. Honestly, it qualifies as ordinary for most people. But in this case, you are reading about a little boy who spent over a year confined to a wheelchair. This was the boy whose complexion was as white as a sheet. He’s the little boy who suffered excruciating pain from joint bleeds. And he is the little boy who walks with a limp because he has right-knee and right-ankle target joints.

Caeleb is still living with an inhibitor but has been able to find a treatment plan that has helped him control his bleeding. Not everyone with an inhibitor is that fortunate. His port is accessed daily, and he is infused with large amounts of clotting factor. It’s what keeps him running, playing, walking, and yes, even skating.

I still vividly remember the days I would have to carry him to use the restroom because he could not extend his leg due to a chronic bleed. To see him now, standing tall on his own, is something that often takes my breath away. When your daily life has been filled with watching your child struggle to do the most basic tasks, there are moments that completely overwhelm you.

There are so many things that we take for granted. The most basic functions like walking, running, and even giving someone a hug are not things we have to truly think about. When these basic functions are taken away because of an illness, it is devastating. And when a little warrior fights his way through the seemingly impossible to do things beyond his wildest dreams, it’s in those moments that my heart overflows with gratitude.

***

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.

Tagged , , , .

Cazandra Campos-MacDonald is a motivational speaker, writer and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra's older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (21) and Caeleb (11) in Rio Rancho, New Mexico. You may follow her blogs and view her TEDxABQ talk at www.cazandramacdonald.com.

Leave a Comment

Your email address will not be published. Required fields are marked *