This past week, time inched toward a date on the calendar that has brought back difficult memories of grief over the past few years. On April 16th, 2022, my mom had a massive stroke that led to a metastatic cancer diagnosis spreading to her brain and beyond. It’s hard to put into words the experience of caring for your mom with cancer, watching her decline from a devastating unfairness, and eventually saying goodbye while holding her hand in your childhood home. Losing my mom in this way is an experience that I know will define me for the rest of my life, both as a daughter and a mother, but also as someone living with CF.

When I lost my mom, I lost the biggest support in my life with CF. I lost my cheerleader and the knowledge she possessed as a respiratory therapist for 40-plus years. Most importantly, I lost the cornerstone of the force propelling my life forward through each difficult season. My mom had a special way of picking people up, placing them back on their feet, and lovingly guiding them to solid footing. Indirectly, losing my mom felt as if the CF rug had been pulled from underneath me, the solid ground turned to loose sand.

Over the last year, I have had to rectify how to cope with CF without the safety net I once clung to. I wondered:

• Who do I call following good (and bad) CF appointments?
  

• Who can I count on to anticipate my needs when I fail to ask for help?
  

• Who would encourage me to wave the white flag when my determination outweighed my well-being?
  

• Who would understand the complexity (and the tireless effort) of being a mom while living with CF?

• 
  Who would celebrate the simple expulsion of a mucus plug? (The answer: Ashley Ballou-Bonnema, but that’s for another post.)
  
  

My mom was the keeper of some of my deepest darkest fears with CF, and she worked in my life to ease them. Our relationship was special, in a way only others with CF might understand. In truth, I felt lost without her. Losing a part of your support system is challenging. In fact, it is downright disorienting, and it’s OK to stumble in its aftermath.

I surely did.

Be patient

The first few CF appointments I attended after my mom’s death, I was an unhinged mess. So much so that they sent in the social worker to do a mental health screen on me. I was grieving

and being in CF clinic knowing my mom was gone was super triggering. No one on my CF team expected me to be put together, even if I put that pressure on myself.

Thankfully, I was reminded by my doctor that I was exactly who I needed to be in that moment: someone who was trying desperately to heal. And, healing is often messy and non-linear. There’s no shame in that. She reminded me to be patient with myself, and that I would slowly feel more stable with time. In the end, she said I wasn’t alone along the way. She was there to support me in any way she could. Although I felt like I lost my support from my mom, I have always had multiple avenues of support I just had to accept the help being offered.

Practice self-care

Throughout my mom’s cancer journey, people kept saying to us as her family and caregivers, “Take care of yourself.” I understood what they meant but the reality is we were merely surviving. There was no alternative at the moment. After her death, I knew survival was no longer the goal, revival was necessary if I ever wanted to be “OK” once again.

Self-care often means leaning into the things that build you up. Simply, I started doing things for no other reason than they brought me joy and distracted me from the void I felt. I read more books, went out to dinner with my cousins, hugged my kids, and smelled their little heads forcing them to let go first, I adopted a stray cat and watched her become a plump, spoiled house cat, etc. Slowly and meaningfully, I came back to myself. I connected with the other parts of myself apart from life with CF and life as a grieving daughter. I felt less alone and focused not on what I lost, but on what I could hold on to in the present day. Little by little, it helped. I felt my feet begin to wobble on solid ground, once again.

Face your fear

Shortly after my mom passed, I started coughing up blood. I knew I needed IVs but the idea of facing home IVs for the first time right after my mom died felt crippling. How was I to survive this challenge while my mental health was fogged over by grief and isolation?

I tried to get out of it. I avoided the signs and symptoms until finally, I faced my fear with my mom’s advice scrolling through my head and called my CF doctor. “I want you to take care of yourself. You can do absolutely anything. You are so brave, my Janeil. ” Just like ripping off a bandaid, I jumped into IVs knowing it was something I had to do. And what do you know? I did it. Completing IVs, accepting help from others, and being patient with myself, my mom was right, I am brave and can do anything. I can rebuild my support system and I am not alone.

Like many life challenges, you just have to hang in there until you get somewhere.