Second in a series. Read part one.
Grief and guilt are not easy to express or explain.
It has been five years since my son’s heart and double-lung transplant after a lengthy battle with pulmonary hypertension (PH). I am thankful and overjoyed that he has continued to push through the challenges and survive. I’m also wracked with guilt knowing that many have not been as fortunate.
This made me think about how I often share watered-down versions of my happiness while grieving mothers are possibly doing the same when expressing their sadness.
I asked five grieving mothers for their perspective on survivor’s guilt. They shared so much that this column became a two-part series.
Christina Doak’s daughter, Katy, was most likely born with PH, but she was not diagnosed until the age of 4. Her 10-year battle with the disease concluded with a double-lung transplant at 14. A second chance at life was a gift that Katy never took for granted, although it was one she found herself fighting to keep.
She briefly enjoyed her life after transplant until she was diagnosed with post-transplant lymphoproliferative disease — a type of non-Hodgkin’s lymphoma. She courageously fought this battle and won, but two years later, she was diagnosed with acute myeloid leukemia (AML).
Katy received a bone marrow transplant and passed away from complications of AML at 18.
When Katy was diagnosed with PH, Christina and her husband faced the sadness of knowing their daughter would be lucky if she lived to celebrate her 20th birthday. “This is the reality of every family who has a child with severe PH,” Christina said. “Every child and family have their own journey and individual struggles with this disease. Nothing is even remotely easy.”
Christina is forthright about the PH journey and emphasizes why she feels no animosity toward those whose children are still alive. “I feel happy for their accomplishments and heartbroken over their struggles,” she said. “Knowing that this disease is so hard to live with allows me to continue to be empathetic for these families.”
It is her wish that every child will live to their fullest potential during the time they have left. Life is fragile, and Christina wants families to make happy memories. “Katy had her journey, which she fought hard for, and every person with PH must navigate their own.” For that, Christina only has love and respect.
She said her reasons for limiting her use of social media had more to do with avoiding political posts than reading about the ups and downs of PH life. She follows and supports a few who helped her through tough times. But continually hearing about others’ struggles makes her heart ache, and that is why she avoids PH and transplant support groups.
Making the decision not to share more of her knowledge and experience was difficult. “PH took up so much of my life,” Christina said. “I am taking a break.” She also feels at a loss for how to comfort people when there are no words to convey the depth of pain, struggle, or grief that families might be going through.
But Christina acknowledges that posting about all aspects of a patient’s journey is how one gains support and raises awareness.
Rhonda Williams is in the early stages of grief, so talking about her daughter is difficult.
Shea was misdiagnosed as having severe asthma for most of her life. That excused her from participating in physical education classes, but offered little help in high school, when walking across campus would cause her to pass out.
It eventually became clear that Shea was struggling with something more serious than asthma. She received a heart and double-lung transplant in December 2014, soon after her PH diagnosis. Almost five years later, Shea passed away from rejection in her lungs at age 21.
It’s difficult for Rhonda to believe that Shea is gone, which makes it difficult for her to follow the journey of others right now. She loves the optimistic parents, but it makes her cry to think about how they have no idea of what might be ahead.
Prior to her daughter’s passing, Rhonda tried to keep her posts to social media positive and happy. But as a mother and a nurse, she struggles with her own version of survivor’s guilt: “I spent so much time trying to focus on my daughter’s future — I feel I missed her decline.”
Rhonda’s husband, Jim, has been her source of strength. Together they are focused on helping her son through this difficult time.
My takeaway from the five mothers in this series is that we should base what we share and how we support one another on personal need and ability. PHamily is about compassion and understanding. It is not about guilt.
Note: Pulmonary Hypertension News 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 Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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