“There is ebb and flow. Leaving and coming. Flight and fall. Sing and silent. Reaching and reached.” – Ally Condie
I am unfamiliar with the author of that quote and her thoughts behind it. But as I prepared to write my one-year anniversary column, it grabbed my attention. The words describe well how I have approached awareness and advocacy throughout my son’s pulmonary hypertension (PH) battle and during his post-transplant life.
As Condie’s words describe so eloquently, I have found during our family’s PH journey that my participation in these goals has ebbed and flowed, depending on my need and ability. Experience has taught me that this changing of the tides is a normal and healthy approach to dealing with a rare and life-threatening disease.
After my son Cullen was diagnosed with PH, I spent most of the first year educating myself about the disease and developing my advocacy skills. A wonderful group of PH moms welcomed us into their circle, and we supported one another by email and in a Facebook group called “Families of Children with Pulmonary Hypertension.”
As a newbie, I asked a lot of questions and took notes based on the experiences of others. I also silently listened when members discussed fundraisers, conferences, and other ways they were raising their voices about PH. This all made a big impression on me, but I was not yet ready to jump into spreading awareness.
Eventually, my son’s quality of life improved, and I was well on my way to earning what felt like an honorary medical degree. My family had adapted to a new normal, and despite the predator that had invaded our lives, we began to share happy moments again. It took all this to happen before I truly felt comfortable discussing PH with others and explaining the desperate need for awareness.
I also noticed that the support group had transitioned into an extended family of sorts. With them, I felt most comfortable voicing concerns, asking questions, sharing good and bad days, listening instead of speaking, or sometimes even disappearing for a while.
During periods of extraordinary stability or overwhelming decline, I occasionally needed a mental health break from PH. I would take short breaks from the group so I could free myself from constant PH thoughts. This helped me enjoy the good times, and not snap like a twig during the bad. My PHamily understood and was always there for me when I returned or checked in on me if I was away too long. They were there for me during the final fall, when my son was out of treatment options and listed for a transplant. And they rejoiced with me after his successful surgery.
A few months post-transplant, Cullen and I took part in the “Race Against PH 5K,” but after that, we took a sabbatical from awareness and advocacy during that first year of recovery. He no longer had PH, but his new heart and lungs came with a lot of responsibility and much to be learned. We had to take the time to adjust to this new normal.
As time passed and Cullen was doing well, I started offering more attention again to PH awareness. When he approached his fifth transplant anniversary, I considered how much stories like his had provided us with hope and support in the past. While searching for a way to pay it forward, former Pulmonary Hypertension News Forums moderator and columnist Kathleen Sheffer mentioned that she was leaving her position to focus on her photography business. I jumped at the opportunity to become a moderator, and recently celebrated my first anniversary with Pulmonary Hypertension News.
I have tried to make my column, “Life As a Caregiver,” an open and honest journey forged by the struggles and strengths that my son and the rest of my family have endured through the years. His PH and transplant journey has not been easy, but it has not lacked hope, and that is what I try to inspire in others.
As a forums moderator, I offer the understanding that we are all in different stages of PH awareness and advocacy. I appreciate the members who actively share and ask questions, but understand those who would rather quietly read and reflect. Sing or be silent, we welcome all!
New topics are offered weekly, and we frequently revisit past ones so that no matter what phase of PH you are experiencing, you have material to read that might help you. If you have a question but feel uncomfortable asking it, send a private message to me or co-moderators Jen Cueva and Brittany Foster. We will happily ask it for you and make your forums experience a positive one.
Thank you, column readers and forum members, for providing me with the understanding and support that I have tried to provide to you. I look forward to another inspiring year.
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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