There I was: sitting in front of my computer scrolling through Facebook, tears streaming down my face as I watched a video of a small child in a vest vibrating slightly on his couch, tablet in hand. Inspirational music played in the background as information followed about the frequency of these treatments, the details of their impact, and everything this boy would endure daily in his life with cystic fibrosis.
Although I'm not sure why I remember that moment so vividly, the way I felt while watching that video -- and the thought that immediately followed -- are forever engrained in my memory: “Thank you, God, for bringing me a healthy child.”
Five years later, when our pediatrician called and told us that our new daughter, Kaehler, tested positive for cystic fibrosis in her newborn screening, all I could picture was “the vest.” It immediately made me think back to that boy. My tears. The challenges this baby girl would face.
The vest had become my own unofficial symbol of these trials, and all I could imagine was walking into our first CF clinic meeting and walking out with a vest.
I had expected it to be the visible cross she would carry for a disease that is often defined as invisible.
I cannot put into words how relieved I was when my husband and I were told that we wouldn't start with a vest and walked out of that first CF clinic appointment with a tiny pink cup to use for chest physical therapy (CPT) instead.
But then, life happened. Our girl grew and grew. We celebrated with gratitude for her continued growth and weight gain despite the challenges of CF, but we also learned quickly that our strong little girl had no intention of being held back.
The struggle to corral a toddler is real -- not to mention twice daily for 30-minute manual CPT sessions -- especially when said toddler has already been sitting still for an hour's worth of other treatments. As Kaehler closed in on her first birthday, CPT had become the hardest part of our day.
In December, Kaehler finally measured big enough for a vest at clinic. Our respiratory therapist walked us through how to use it. She explained the parts and pieces, taught us how to hook everything up, and told us she'd place the order for us. A company representative would come out to the house and help us set up. As always, we could call her with any questions.
When she walked out of the room and closed the door, I suddenly became overwhelmed and tears rushed through me. I looked at my husband, who had tears in his own eyes. Only this time, I knew we were both thinking the same thing: We had made it. These were tears of joy.
The fight was over. No more holding her down or back. No more screaming sessions while we tried to get her in just the right position for three-minute intervals, tapping gently to keep her healthy.
Although the hoses that connect her to the compressor are only a few feet long, they are just long enough to let her stand at a play station or to sit amid her toys. We can sit with her and have a picnic while she does her vest. She plays games with her brother. She can be a normal toddler and fight the symptoms of cystic fibrosis.
With manual CPT, we had 30 minutes of actual therapy and at least 15 minutes of fighting with Kaehler between positions. Although each dedicated area only needed three minutes of attention, trying to get her into just the right position -- and then repositioning when she fought back -- added a lot of time to our therapy sessions. With the vest, Kaehler puts it on, the timer turns it off 30 minutes later, and we're moving on with the day. It also takes the stress off of us because we no longer need to worry about whether her squirming and reluctance to sit still impacts the effectiveness of our treatments.
While everyone has a different form of airway clearance that is right for them, the vest has been a welcome change to our once-difficult routine. It was also the change I had feared the most.
I had worried that moving to the vest would be an official transition into our new reality -- a physical display of our new life with cystic fibrosis. And while it's certainly not something we can hide since it takes up a large amount of space in our living room, it's also given her more time to just be a toddler.
There are so many things about having a child with cystic fibrosis that have shaken me straight to my core. I never could have imagined that the one thing shaking her would be just the stability we needed.