I have grappled with issues related to weight and self-image since my teenage years. Taking care of my hospice patients every day can be very hard on my emotions. I internalize the pain and disappointment that my husband and sons go through. Witnessing my boys struggle with hemophilia adds an extra layer of burden that sometimes feels unbearable.
I carry a sense of heaviness in my daily life.
Recently, my youngest son, Caeleb, celebrated his 18th birthday. As is our tradition, I prepare a special dinner and dessert for my sons each year, culminating in the retelling of their birth stories. However, this particular birthday was different because the challenges of hemophilia were ever-present.
Caeleb spent most of his birthday asleep, his sleep often disrupted by intense pain that makes it difficult for him to rest at night, leaving him drained the following day. Unfortunately, his special day was overshadowed by physical discomfort.
When Caeleb turned 8, he was hospitalized, but the compassionate nurses and doctors went out of their way to create a celebratory atmosphere with a personalized poster and treats. I feared that this year’s birthday would be devoid of joy and marked only by pain.
My work schedule had changed, and I felt a pang of guilt for arriving home late on his birthday. However, when I inquired about his dinner preference, Caeleb simply requested Domino’s pizza, which momentarily lifted the weight off my shoulders.
Yet, I found myself feeling inadequate as a mother once more because I couldn’t find the time to prepare his favorite chocolate and peanut butter cheesecake. Instead, I brought home special cupcakes from a bakery, which turned out to be a delightful alternative. Caeleb relished the evening with his family, gathered around the kitchen island, savoring pizza and cupcakes.
That day served as a revelation for me, prompting the realization that I often burden myself unnecessarily. In this phase of life where my own physical pain is a constant companion, I have learned to persevere. While there are moments when I need to pause and rest, I always manage to push through the pain when duties call.
Unlike me, Caeleb cannot easily overcome his pain. His experience of pain is unique, and I can never fully comprehend its intensity, just as he cannot grasp mine. Nevertheless, we engage in frequent conversations about our respective struggles. I strive to instill in him the resilience to carry on despite the adversity—a challenging lesson for an 18-year-old to grasp.
Looking Ahead
Living with a bleeding disorder entails enduring complications that may seem ceaseless. For Caeleb and many others, the repercussions of excessive bleeding are enduring. These burdens are undeniably significant.
Amidst my ongoing battles with weight, self-image, and the emotional demands of tending to hospice patients, the weightiest burden I bear is witnessing Caeleb’s ordeal with hemophilia and the excruciating pain stemming from damaged joints. As I navigate my own challenges, I have recognized the importance of shedding unnecessary burdens and lightening my load.
This is a lesson I am striving to impart to an 18-year-old confronting a future marked by hemophilia-related complexities. The burdens may appear unending, but life persists despite the pain.
I aim to convey to Caeleb that there is hope on the horizon.