I wish I had a dollar for every time I’ve been described as strong, but what if people knew my weaknesses, unfathomable sadness, and heartbreaking mistakes? As a caregiver to my son, I’ve had to accept his reality and mine. I’m not a pillar of strength or perfect in what I say or do, but I can learn from my shortcomings.
My first lesson occurred pre-diagnosis, while vacationing. I took hold of my 6-year-old’s hand and his father took the other as we helped him jump ocean waves. Suddenly, he went stiff as a board, making it difficult for us to keep his head above water as his eyes stared off into the sky. We yelled at him for fooling around, but he claimed no memory of behaving that way. Two years later, he was diagnosed with pulmonary hypertension (PH) — what he had experienced that day was a seizure.
I wish this was the only pre-diagnosis experience that left me feeling guilty, but there are other haunting memories. It was after listening to similar stories from other PH parents and hearing about their pre-diagnosis nightmares that I began to forgive myself. Guilt is emotionally draining, and if I wanted to be strong for my son, I needed to let go of it.
The next lesson was to refrain from making promises I might not be able to keep. Blood draws and IV starts are problematic for my son due to small, collapsing veins. Imagine being an 8-year-old and having a nurse desperately try to find a viable vein; out of desperation, she goes for the foot. This was a traumatic experience, and I made a risky promise to keep it from ever happening again — risky because it remained an option.
A few failed promises have been, “One more test and then you can eat,” or worse, “You get to go home tomorrow.” I learned the hard way to respond with my head and not my heart on such matters — until after transplant, when I made a bigger mistake.
Since his diagnosis, my son has made it clear that he wanted to be kept in the loop about all of his medical concerns. I managed through five years of heartbreaking PH honesty, only to jeopardize this hard-earned trust during a moment of weakness post-transplant.
There was concern that he had developed post-transplant lymphoproliferative disease (PTLD); in other words, cancer. I was advised not to tell him until the diagnosis was certain, so as to avoid unnecessary anxiety. Suspicious, my son asked, “What aren’t you telling me?” and demanded an answer. The news came the next day that he did not have PTLD, but the betrayal of trust lingered. Time healed all wounds, but I never forgot the hard-learned lesson that some promises just can’t be broken, no matter how much they might break my heart to keep.
Another challenge has been learning to own my sadness, but not obsess over it. During a hospital stay, I shared an elevator with a mother whose child had just died. I immediately noticed her frigid stare and exhausted condition, and overheard the whispers from her family.
This experience, and the realization that it could happen to me, was overwhelming. I was new to this reality, and I bottled the pain until three days before Christmas, when my son excitedly told me that he had asked Santa for one gift: an R2-D2 remote control toy. Remembering that grieving mother sent me on an obsessive hunt through countless stores.
In desperation, I rummaged through a bottom shelf and found one hidden in the back. We’ve kept the toy as a symbolic reminder of what we have been through, what others have been through, and why each day is precious. What started out as obsessive sadness gradually changed into a sort of sad emotional strength that I rely on to this day.
With sadness there are tears, and I have shed them, often in private, like in the shower or car, or on the floor of a hospital bathroom. I’ve learned that crying is healing and strengthening. It also gives someone else a good opportunity to be strong.
My son has had a number of right heart catheterizations over the years. I would remain composed while he was wheeled into the operating room, but once he was asleep, I would cry from seeing him look so vulnerable. My husband would gently lead me into the waiting room, and despite feeling very much the same, he would comfort me.
I used to feel embarrassed and disappointed in myself, but eventually learned to accept these moments of weakness and appreciate my husband as also being a strong and compassionate caregiver.
Through these experiences and many others, I have discovered that I am a strong person, but only because I am also weak, sometimes sad, and often imperfect.
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.