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CF Familia

The Art of Caregiving

by Alicia M.

Patient testimonials represent individual experiences and opinions of the individual patient. Experiences may vary.

On my journey caring for my son with cystic fibrosis (CF), I have come across many informational resources with instructions on how to perform the basic tasks of routine care.  Such as, how to refill and administer medications, or how to disinfect medical equipment.  An area that I seldom hear anything about is how as a caregiver I can nurture and sustain a calm and healing presence. Perhaps because this is where caregiving takes a turn from a science to an art.

I am aware that when I care for my son, I support him beyond the prescribed medical plan. I also am accompanying him as a loving witness through the ups and downs of his experience living with a chronic condition. During some of the downs, when it seems that there is nothing else anyone can do to make things better, I lean on introducing a calm healing presence that can support both of us in being with what is.

Arriving at a sense of calm amidst difficult circumstances is a lot to ask, which brings me to the topic of resilience. Resilience refers to the ability to recover from setbacks, adapt well to change and keep going in the face of adversity. Building resilience is like caring for our teeth, it is a daily practice.

When we face challenging circumstances or unwanted change, we often experience difficult emotions such as shock, fear, denial, anger, or sadness.  It is important to acknowledge and process those emotions so that we do not get stuck in a negative place that keeps us from being able to regain a sense of calm and move forward.

The practice of RAIN is a simple framework I often use to help me find my footing and arrive at a place of acceptance during a challenging experience. This four-step framework stands for Recognize, Acknowledge, Investigate, and Nurture (RAIN). Psychologist and Buddhist meditation teacher Tara Brach, describes the RAIN framework as a practice of “radical compassion.” The framework asks you to treat yourself as you would a dear friend in need, with kindness, acceptance, compassion, and attention.

The next time you are feeling emotionally off balance, I invite you to find a quiet place to practice the four steps of RAIN.

  • Step 1: Recognize what is going on.
  • Step 2: Acknowledge and name the thoughts and emotions you are experiencing.  Allow those thoughts and emotions to be without trying to push them away or change them.
  • Step 3: Investigate with kindness. Ask yourself what is really going on here. Where in your body are these thoughts and emotions affecting you the most?  What wants attention? What belief does this reveal? Where is there an unmet need? What is one thing you can do to help meet that need?
  • Step 4: Nurture with self-compassion. Respond to what you are experiencing with a nurturing thought, phrase, or gesture.

The RAIN practice is a tool and a mindset. I find that the more I practice RAIN, the more habitual it becomes and the more resilient I become.  You can practice RAIN on your own by following the four steps listed above or by listening to this 7-minute guided audio.

Your practice can be a light RAIN lasting a few minutes or one lasting 20 minutes. What matters is that it becomes a regular practice to nurture your resilience and healing presence.

Campaign Videos

This Campaign Anthem video amplifies the awareness of Latinos with Cystic Fibrosis.

Inspirational Stories

CF Care as Part of Motherhood

Read the story here

Resource Links

Support Group for the Spanish-Speaking CF Community: Second Wednesday of Every Month

Led by Marilyn Calderon, LICSW
The group meets on the second Wednesday of every month from 5:00 to 6:00 pm PT (8:00 to 9:00 pm ET), and addresses the unique issues faced by Hispanic/Latinx individuals and families affected by CF. The group is open to adults with CF as well as family members of adults and children with CF. The group meetings are held in Spanish and facilitated by Marilyn Calderon, LICSW.

To register, click here. Please allow 3-4 hours before the meeting to register.

Sponsored by Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, Gilead Sciences, and private donors.


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