Embracing the ‘both/and’ of hemophilia in the season of thanks
It's hard to be thankful when it comes to my son's chronic pain
I do love Thanksgiving season. Families gather, food is shared, and quality time is priceless. But not everyone enjoys the holidays. In them, we’re encouraged to live a life filled with thanks, a life of thanksliving. Ugh. Yes, it’s a nice thought, but sometimes it’s enough to distract people from the season’s meaning.
Is it OK to not be thankful? Absolutely! I’m embracing the concept of not being thankful this season. I’m not thankful that my work as a hospice chaplain is filled with grief for the ones I serve. I’m not thankful that sometimes my faith wavers. And I’m certainly not thankful that both of my sons have a bleeding disorder.
Yet living a life of not being thankful can lead people down a dark and lonely path.
My 17-year-old son, Caeleb, is suffering from chronic pain in his target joints (right knee and right ankle). Hemophilia has been a constant presence in his life, not only because he needs medication to keep him from bleeding, but because this disorder has often caused him to live as a disabled person.
His school attendance has been spotty lately, and I’m concerned about him graduating from high school on time. I feel like my sons when they were about 5 years old, when they said, “I hate hemophilia.” I remember those words coming from their little mouths, and I didn’t ignore their feelings.
While raising my sons, I worked to find the good in hemophilia. I’ve gone places I never dreamed. I met people I never would’ve known. I’ve spoken to audiences about sustaining hope through their chronic illness. I consider myself a woman of hope. But lately, that hasn’t been my reality.
I know the importance of giving thanks in all situations, but how do I give thanks for my son’s pain? It’s easy to see only the negative and live in what I call the “either/or.” Either hemophilia is terrible all the time, or a bleeding disorder can be seemingly nonexistent. Either bad or good.
The space of ‘both/and’
Why not live in the “both/and”? I live in the space of both/and because my son does struggle with pain, but he’s not currently bleeding. It’s a space of living with both the good and the bad.
Finding the silver linings in any situation is impossible when anger and grief are at the forefront. Once the clouds begin to float away, we can get a new perspective on the things that are difficult in life.
Instead of being angry at losing a job, a new opportunity could be life-changing. When a relationship ends, the future may have someone better suited to bring joy and happiness. And when my son cannot get out of bed because of his pain, I need to give thanks that I have my son. Caeleb is the son my doctors said I’d never have.
How I wish I could take his hemophilia away. I’m angry and heartbroken. I genuinely don’t give thanks for my son’s bleeding disorders. I refuse to let his season be filled with “either/or.” Instead, I’m working to live a life of “both/and.”
We can find the good in everything, but until that happens, it’s OK not to be thankful.
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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