Gratitude and grief can coexist in cystic fibrosis parenting
Raising a child with a rare disease prompts a wide range of emotions
“I want to have a baby girl with pink hair and a baby boy when I’m a mommy,” my daughter, Claire, boldly announced as I was cooking dinner the other night.
She’s a lot like other 5-year-olds, dreaming of her baby dolls coming to life — except she has cystic fibrosis (CF). My dreams for her future were shattered the day she was diagnosed. I don’t know if she’ll ever become a mom, graduate college, or get married. That’s the reality of having a child with a life-limiting disease.
She doesn’t know that her innocent comments about becoming a mother sent me spiraling into an analysis of what her future may or may not bring. Deep down, I feel grief in the rawest form that her life may look very different than she or I could ever imagine. All because she inherited a rare disease.
Most days I scurry through life, too busy to focus on the sad, grief-ridden aspects of CF. Yet in moments like this, I’m reminded of reality. My daughter is very much alive and, for the most part, thriving. But I still grieve the life I thought she’d have the day I learned I was pregnant.
Maybe this sounds ungrateful, especially to those who have lost a child in the physical sense, but there’s also grief in raising a child with a disability. There’s a famous poem that acknowledges the pain that can come when life goes in a drastically different direction than you’d planned. I certainly didn’t plan a life for Claire full of surgeries, hospital stays, pills, and breathing treatments.
I’m not a bad mom or person because I have moments of sadness about what life has dealt our family. The future is uncertain, and there will always be a piece of me that’s deeply sad I can’t change that fact.
Can gratitude become toxic?
The attitude of gratitude is everywhere this time of year. I believe in the power of recognizing what you’re grateful for. But sometimes it’s not so simple for families with children with rare diseases who are in a prolonged grief cycle. There’s gratitude in our lives, but there’s nuance to it that typical families don’t understand.
Those late-night coughing fits when my daughter can’t catch her breath don’t send me running to my gratitude journal. The rising life expectancy numbers give me hope, but it’s still not enough to quell my grief completely. My child has to endure so much every single day. I can’t turn away from that. I can’t unsee the pain and suffering.
To make matters worse, I often feel like people try to push gratitude on me. “She’s alive. She’s not in the hospital. Be grateful.” And the old favorite platitude, “It could be worse.”
I’m frequently met with this rhetoric of toxic gratitude regarding Claire’s disease. The insinuation is that because I experience a range of emotions, including sadness, I’m not grateful. This perspective discounts how hard it is to feel optimistic in the face of daily adversity. I’ll admit there are many hard days when I’m not grateful at all. In fact, I’m angry.
When it’s dark, look for stars
Raising a child with CF can feel a lot like looking for stars in a sky full of rain clouds. Stars may be there, hidden deep behind layers of the storm. It may take a lot of work and time to find them. Sometimes there just aren’t visible stars, no matter how hard you look.
Suppressing my true feelings doesn’t allow me to process all of my emotions. Others shouldn’t judge my seemingly lack of a sense of gratitude. It may not be as apparent some days, but I am thankful for the opportunity to see my daughter achieve things I never thought she could. Still, it’s unfair to place an expectation on me to be grateful all the time.
This season, I’m here to tell you that grief and gratitude can live side by side in the world of CF parenting. We all process grief and gratitude differently. Different days and seasons of her disease bring a myriad of emotions. I may be sad sometimes, but I always consider it a privilege to raise my daughter, even with an uncertain and often dark path in front of us.
Note: Cystic Fibrosis 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 other 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
About the Author
Comments