The title of this post is one of the lines from my daughter’s college essay about her night that she stayed with me in the hospital this past June as I recovered from my Melody valve procedure. Her reflection on that role reversal got me thinking about my own roles.
As it probably is for you, too, we have many roles; mine include wife, mother and daughter, to name just a few. In the days leading up to my procedure, it was often the worry over those roles that kept me up at night before I knew how this latest challenge would end: Would I be well enough to care for my kids? Would I still be able to make a living? And of course the big one—would I survive?
Thoughts of leaving my children were the most difficult, but surprisingly, what kept bringing me to tears was the thought of leaving before my parents, especially my mom. She has been there for me countless times over the many years as I have lived with my heart defect—so many hospital stays, doctor visits, setbacks and triumphs through the past 45 years. My mom has endured and survived this defect just as much as I have and with each new challenge I can see the worry as plain as day on her face.
As I am sure it is the same for many ACHDers, my mother’s role of mother in regards to my health lasted far longer than those of my healthy peers; her importance is far greater as keeper of information and advocate for my care. Time has ticked on and her role has changed as I have taken over many of those aspects. I make the decisions, sometimes not to her liking, and I am the communicator in my own healthcare maze.
When I want to go to an appointment alone, I can see her feeling a bit hurt, as if I don’t need her to navigate this path for me anymore. But the reality is, I don’t want to put her through it anymore. I want her with me as support, not as a burden. And to put her through yet another hurtle this past spring was heartbreaking for me, no pun intended. To possibly not survive? It was just not right.
The natural course of events is for children to live and their parents grow old, with us taking on the role of caretaker and keeper of information. As hard as it is to think of not having my parents here with me, having them lose me first would just be cruel. I never want them to lose their child, not at this stage of the game. No parent should go through that at any age, but for us ACHDers, our parents have earned the right to see us grow old.
That night, when my 18-year-old daughter took the helm of my care and my mom headed home to give my partner a break with our other two girls, I too saw our roles shifted—but not just for me and my daughter. I see how my role as one woman’s daughter and another woman’s mother really means being there for each other, whatever role is required. And I am thankful for them both.
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