Her shoulder blades protrude, and I can see the outline of her ribs as she puts on her PJs. I am now acutely aware of what awaits me tomorrow in the clinic. The scale reprimands me before the team even has a chance to get a word in. Nourishing your child is a very basic instinct, and I am overwhelmed with feelings of failure.
Lung clearance is hard. Intravenous antibiotics are hard. Food is not supposed to be hard. That is why the emotions are so encompassing. However, the verity is that malabsorption is as much a part of this disease as bronchiectasis. What stops us from acknowledging the disease's role in this particular hurdle?
The war rages within me with each meal, each snack, and each high calorie shake mix that I begrudgingly serve her. I know that Maylie is fighting a war within her body each and every day.
I can choose to feed the soldier or feed the disease.
Each time I choose processed/high sugar foods to appease the numbers, I feel like I give the other side ammunition against my daughter. I stand here looking at a little girl that is doing everything within her power to fight CF every day, and my job is simply to support her.
A couple years ago, I attended the CF Foundation social worker/dietitian consortium where I listened to case study after case study presenting statistical evidence to support the correlation between BMI and lung function. I had heard parts of the same story so many times before, but it was in a setting that begged me to recognize the gravity of a situation I wanted to ignore.
Unfortunately, I spent Maylie's first three years in a state of misguided defiance. I would go to clinic prepared to defend my efforts as a mother. Unbeknownst to me, that was never in question. Failure to thrive is an extremely personal and emotional diagnosis, and one that gives you a false sense of control. Everything changed once I acknowledged that Maylie's need for a feeding tube was as disease-specific as her need for Pulmozyme. I was free from the guilt that blinded me all those years. Why do we see nutrition intervention as a reflection of our own failures?
Once the decision was made to follow through with the feeding tube, relief consumed me. This small war was over; I could stop fighting the tube.
Maylie has had her tube for almost four years, and while it comes with another set of demands and a few complications, it was one of the greatest tools that we have implemented into her CF care. If your team has discussed the tube with you, I encourage you to embrace the chance to have another weapon to fight CF. See it as a step up, not a step down.