My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). During his pediatric PH years, I had the pleasure of meeting other children just like him. Kids who liked to have fun, learn new things, and express themselves through talents they were just discovering. Young people who were dreaming about what they would like to be when they grew up. These new friends were also sons and daughters, grandchildren, nieces and nephews, cousins, and students.
Like most children, these are the things Cullen and his new friends enjoyed discussing and sharing with one another. The difference between them and other youth was the primary location of their gatherings. They were getting to know one another under a hospital roof.
Yes, they sometimes shared medical war stories and comforted one another during difficult times, but not to the point of dwelling on their illness. Cullen loved his friends for all the wonderful things that made them unique, and for the things they had in common other than PH.
But as the kids were being kids, the other adults and I were often whispering about our roles as PH parents and caregivers. I think it is fair to say that this is how we first identified with one another.
We would comment on how wonderful it was that our children didn’t allow PH to define them. But I don’t recall us bragging much, if at all, about how as caregivers, we didn’t allow PH to define us. We needed and welcomed the opportunity to chat with other parents who grasped what we were going through and sympathized with the unrelenting fear that PH would take our child.
However, as time passed, I noticed our friendships evolving into something more than the gathering of PH parents, or as fate would have it, parents of children who received transplants. We could enjoy meals together and not discuss our child’s illness between every bite. We could often be heard laughing louder than our kids at everything from awkward medical moments to normal everyday life experiences.
There were conversations about our husbands and our own parents, hobbies we enjoyed, books we read, movies we watched, what we studied in school, and careers we had. Lo and behold, we were more than PH parents and caregivers after all.
For some reason, I found it more challenging in the “real world” to not be defined by my son’s PH or his heart and double-lung transplant. I was the mother of the sick child, and everyone knew it because I told them. My life revolved around spreading awareness and advocating for my son, whether at home, at work, or out socially. The more I witnessed the normal lives of others, the more I could only see myself as a PH mom.
If I could go back in time, I would still be a strong PH advocate for Cullen and paint my world with awareness, but I would also make time to put the brush down and enjoy more of life. Quality of life should be just as important for caregivers as it is for the patients.
I would go on more date nights with my husband and not use them as an opportunity to privately discuss PH or transplant. Work would become a welcome distraction and a time to recognize myself as someone other than a PH mom. I would thoroughly enjoy school functions instead of secretly feeling sad and worried about Cullen’s future. And as much as I would still need my friends to lean on, I would also make more time for relaxation and fun.
And just like the amazing adults whom I have come to know through the Pulmonary Hypertension News Forums, I would make better use of good days by enjoying the other aspects of who I am besides a compassionate caregiver.
Since my son’s transplant in 2014, I have made strides in recovering my lost identities. Ironically, as a PH News columnist and forums moderator, BioNews has played a huge part in helping me achieve this. The company, which publishes this site, is dedicated to providing not only a safe place for employees and forum members to discuss their rare diseases, but also to remind one another that we are so much more than an illness. The inspirational stories shared throughout the “30 Days of PH” project in November provide shining examples of this.
What are you besides a patient or caregiver? Join the PH forums and share how you keep this rare disease from defining you.
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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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