Originally Published on www.cff.org on June 1, 2016
My mind races. My heart aches. I have read five chapters in a book that I couldn't even summarize for money. I honestly couldn't even produce the title if need be. I sit patiently, waiting for my name to be called. I have been waiting almost two hours; it seems like lifetimes. I finally conclude that no one actually needs me.
I grapple with the emotions I am experiencing right now. What is this feeling of loss? I wonder if it is lack of control, missing the interactions with staff or maybe it is simply frustration that I have been following an unspoken protocol, ignoring that my daughter was ready to fly solo. I have spent the past 10 years trying to protect my daughter from the “unspeakable” by being her advocate. I now question if I have been misguided. Maybe the best way to be her advocate is to recognize that she has the tools to advocate for herself.
After realizing this, my mind becomes calm and my heart takes on a feeling of pride rather than loss. I realize that today, after she was asked a very simple, yet life-changing question, “How have you been feeling?” for once she didn't look to me to answer.
I am not there.
She is given this rich opportunity to think about that question, assess what that means to her and respond as the true expert in her life. How empowering. The reality is that my intelligent and capable daughter has brought a book to clinic because I have been her voice. Other than the exam and PFTs, she actually has not needed to attend clinic because I have been so thorough in reporting the nuances of her life. My controlling nature comes from a place of love, making sure that I have ample opportunity to articulate what I observe, voice my concerns, ask questions about the unknowns in an effort to be an advocate for my daughter. As though that will somehow give her an edge to fight this unforgiving disease.
I now see that my need for control runs the unintentional risk of teaching Maylie that she is simply a bystander in her own care. I come to a modest yet poignant realization. We have the opportunity as parents to demonstrate our love in an entirely supportive way, more as a coach than as a leader. I have shown her my dedication to managing cystic fibrosis by never missing treatments, by attending all her clinic visits and by being her advocate in the seven years since her diagnosis. It is now time for me to allow her to become the expert.
CF constantly reminds me how little I know. In this moment before she finds her way back to the waiting room, I finally realize my role: to support my daughter on her journey, living with a chronic disease. That role will constantly evolve as she grows. Sometimes it is hard to keep up with how quickly she advances. Sometimes I think that she needs me more than she does. Sometimes I want her to need me.
Seeing her come out of the clinic room, full of pride, brought immediate clarity to what it is going to take to raise a healthy and happy individual living with such a complex chronic disease. Empowerment. We all want to be an expert, to be revered, to be seen as capable. I look back at all the steps toward independence that Maylie has taken since her diagnosis, and I am certain that she is ready for this transition into self-care. She cannot wipe the smile off her face. She is an expert in her own life. Finally.