My son inspires me to move forward, despite physical limitations

Over the years, I’ve expressed my creative side in ways I never imagined possible. The space intended to be the formal living room in my home is, instead, my quilt room. Sewing machines (yes, plural), fabric, colored markers, pens in Mason jars, paper for greeting cards, and brightly colored yarn on a loom reaching from one end to the other stand at the ready. Beads made of wood, paper, and ceramics fill jars sorted by size, and piles of photos wait on a shelf to be placed into scrapbooks, transporting me and my family to happy times.

It’s so much better than a “man cave.”

This creative space is my sanctuary. Fabric banners of various colors and patterns hang from the ceiling, because color and the feel of patchwork are my favorites. (I call my style “patchwork chic.”) Two bookcases with my favorite books and journals are within reach, and a cozy chair invites me to sit, read, be silent, and pray with the incense of the day burning. This room, with its unique blend of creativity and spirituality, is where I find solace.

But there’s also something daunting about my special place.

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Last November, I had spinal decompression surgery. A compression of my spine had caused me to lose feeling in my arms and hands, like when your leg falls asleep times 100. It was frightening.

Almost 10 months later, the numbness in my arms and two of my fingers has returned.

With the holiday season approaching, I decided to start a simple project. Since I’ve been unable to sew and do intricate craftwork for almost a year, a doable project came to mind: fabric coasters.

I start with a fabric “sandwich,” which consists of a few pieces of fabric stacked together with strategically placed folds. The sides are then sewn together, though a few inches on one side are left open so that the sandwich can be turned right side out.

Easy. So I thought.

I took the coaster out from under the sewing machine needle and began to push the layers through the opening. I felt like I had 10 thumbs. I couldn’t believe I had so much trouble gathering the corners of this square of fabric, let alone pushing them through. I took a breath, worked on it, took another breath, worked on it again, and finally succeeded after about 10 minutes. When I finished, I thought, “This is too much.”

My son’s resilience inspires me

I immediately thought about my youngest son, Caeleb. He’s a sophomore in college and has severe hemophilia A with an inhibitor. This condition has been incredibly difficult for him. His elementary years were the hardest; he even lost mobility for an entire year. Joint bleeds in his knee and ankle would last for weeks at a time, resulting in damage that now causes bone to rub on bone.

Caeleb also endures chronic pain, which is sometimes so debilitating that getting out of bed is excruciating. Mobility issues are a constant problem, so he uses a wheelchair and a cane as needed. Even if his pain isn’t at a high level, his limitations from joint damage are always evident.

When faced with limitations, it’s easy to give in and raise the proverbial white flag, a symbol of surrender. That’s what I wanted to do as I worked with my numb fingers, attempting to push fabric through a small opening. It sounds silly. To craft or not to craft — yes, it is a question, and one that’s not terribly important. Yet when the act of creating is life-giving and that ability is taken away, it’s heartbreaking.

Caeleb’s journey with hemophilia is a testament to resilience. Despite his physical limitations, he never gives up. He may not be able to run or walk at a fast pace, and long distances are difficult and exhausting for him, but he never stops moving forward.

My holiday coasters may look a little wonky. But with every wrinkle, not-so-straight stitch, or uneven fold of fabric, my heart will be whole. It’s in these imperfections that I find joy, knowing that each one is a testament to my own resilience and determination.

Numbness will not deter me. With my Caeleb’s unwavering spirit as my guide, I’ll overcome any obstacle, one stitch at a time. His resilience isn’t just his own; it’s a beacon of hope for me and anyone else facing challenges.

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, and are intended to spark discussion about issues pertaining to hemophilia.