Lightening the load is crucial when parenting a son with hemophilia
To keep moving forward, we must let go of unnecessary burdens
I have battled weight and self-image issues since I was a teenager. Being present with my hospice patients day in and day out becomes draining. I take on any pain and disappointment my husband and sons experience. And when I witness my boys struggle because of hemophilia, the burden becomes more than I can bear.
I live with heaviness.
My youngest son, Caeleb, turned 18 last week. I make a special dinner and dessert for my sons each year, and we end the day with the story of their birth. However, this birthday was different, because hemophilia was not forgotten.
Caeleb spent the day asleep. His pain is often so intense that sleeping at night is almost impossible, leaving him exhausted the next day. Unfortunately, his birthday was filled with physical pain.
When Caeleb turned 8, he was in the hospital, but the nurses and doctors made him a poster and brought him treats. They made the day special despite his pain. I was afraid this year’s birthday would be filled only with pain and nothing to make the day special.
My work schedule is different than in years past, and I felt terrible coming home late on his special day. But when I asked Caeleb what he wanted for dinner, he said Domino’s would be perfect. The heaviness lifted for a moment.
But then I felt like a terrible mother again because I didn’t have time to make chocolate and peanut butter cheesecake, his favorite dessert. Instead, I brought home special cupcakes from a bakery, and they were delicious. Caeleb enjoyed the evening with his family, standing around the kitchen island eating pizza and cupcakes.
On that day, I realized I was putting more on my shoulders than necessary. I am in a season of life where my own physical pain is often overwhelming. Fortunately, I keep moving. Sometimes I need to lie down and rest, but I find a way to work through the pain when I have responsibilities.
Caeleb cannot easily work through his pain. It is different from the pain I experience, and I’ll never understand what his feels like, just like he’ll never understand mine. Still, we talk often about our experiences. I’m trying to teach him that life continues, despite pain, and we must move forward. It’s a difficult lesson to learn, especially for an 18-year-old.
Moving forward
When it comes to living with a bleeding disorder, some complications seem to never end. For Caeleb and many others, the aftermath of excessive bleeding will last a lifetime. Those burdens are very real.
Despite my ongoing battles with weight, self-image, and the emotional toll of caring for my hospice patients, the most significant burden I carry is witnessing Caeleb struggle with hemophilia and intense pain from damaged joints. As I navigate through my own challenges, I’ve come to realize the importance of putting down unnecessary burdens and lightening my load.
It’s a lesson I’m trying to impart to an 18-year-old facing a lifetime of complications from hemophilia. The burdens may seem never-ending, but life continues despite the pain.
I want Caeleb to know there is hope for his future.
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.
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