My friends over at CF Yogi wanted to talk a little bit about what they’re doing to get the CF community up and moving! I’ll let Myra take it away…
My name is Myra Giaffoglione, and I’m a parent of two young children with cystic fibrosis. My journey as a CF caregiver has developed right alongside my yoga journey and I’ve discovered that having this regular yoga practice helps keep me steady. My mat is where I regroup—it is a healing space where I can put our hectic schedule and my to-do list aside, if only for a few moments. It is where I check in and counter the toll that the pace of daily life takes on my physical, mental and emotional well-being.
The physical practice of yoga keeps me strong and limber for the literal ups and downs of our CF routine; strapping the kids in for treatment, carrying them through the doctor’s offices, snaking my way around them at night to position an albuterol spacer in their sleep, and occasionally even sleeping alongside them in hospital beds.
The mental practice of yoga helps me to see the true value of being fully present in our relationships with each other. As my children grow before my very eyes, I’ve found that my clearest and most accessible memories of our time together form when I fully tune in to the experience we are having—when I carry my mindful yoga practice off the mat into my daily life.
“The things that make me different are the things that make me.” —Winnie the Pooh
The kids started showing interest in yoga very organically as they watched me make it a priority in my own life. They became curious, wanting to give the poses and “calm” time a go for themselves. Their own yoga practices offer them very individualized benefits, since while my kids share the same genetic mutations causing CF, they are very different children!
My son, who will be seven this summer, has embraced yoga for its calming effects and for the delight in the connection he feels with me in sharing something I love. Together we revel in his newfound ability to “go inward” and marvel at the steady beating of his own heart, the soothing sound of his breath and the wonder of what it “looks like inside.” He is like a little zen sponge, and I am in awe of the curious and open-minded way he naturally approaches a mindfulness practice.
On the other side of the coin, his physical yoga practice is helping to improve his strength, coordination, flexibility and so very importantly, his confidence in the capabilities of his own body. He is also beginning to open his eyes to the larger world around him and his yoga practice helps him to develop compassion as he learns firsthand how we all look, speak, move and experience life a bit differently – and that is ok. In fact, it’s great. It’s what makes us special, unique in our differences!
“Let her sleep, for when she wakes she will move mountains.” —Anonymous
I’ve also come to delight in the incredible strength and physical fearlessness of my daughter, who has just turned five. She is very different than her brother, gravitating toward the physically challenging aspects of yoga. I love watching the freedom in which she constantly, unapologetically moves and takes up space (she is.a total.bed hog). She loves being upside-down and has been practicing donkey kicks for years, occasionally toppling over, popping up and declaring “I’m ok!” before I even have a chance to ask!
Yet while her strength, stamina and flexibility come naturally, she is challenged in her focus, discipline and the management of her fierce emotions. Through yoga she is learning to sit peacefully for longer periods and to self soothe. She is also learning the means and language to acknowledge and express her emotions . . . as well as the sensations in her body. This is a dream for a CF family as it helps us stay on top of changes that may indicate a CF progression that could be halted with timely intervention!
“It’s not about proving something. It’s about sharing something.” —Yo-Yo Ma
Don’t get me wrong, the practice of yoga has not made my family invincible to the trials of life with CF. Rather, it gives us a set of positive tools, helping us focus on our strength and abilities instead of giving in to the temptation to brood over our circumstances and perceived limitations.
The free virtual Kids Yoga classes offered through CF Yogi are a collaborative effort to create an inclusive, non-competitive place where our CF families can explore these tools for themselves, learn how others are using them, and find ways that they may benefit their own family in all its wonderful uniqueness.
We look forward to seeing you on the mat!
The views expressed on any guest column, are that of guest contributors, and not necessarily those of Gunnar Esiason or the Boomer Esiason Foundation. Nothing in guest columns should be considered medical advice; such advice can only be given by a physician who is experienced with cystic fibrosis. The Boomer Esiason Foundation, Gunnar Esiason, and guests cannot be held responsible for any damage which may result from using the information on this website without the permission of your medical doctor.
