What Cystic Fibrosis Taught Me

“If you can see your path laid out in front of you step by step, you know it’s not your path. Your own path you make with every step you take. That’s why it’s your path.”
–Joseph Campbell

The path is only clear when you turn around and look at all the twists and turns, hills and valleys, light and darkness. Looking forward, it’s just fog. It’s an act of faith to keep moving forward each day, to accept the unknowing.

Seven years ago my granddaughter was born two months early and rushed into surgery to a bowel resection. Yes, that’s right, a premature baby was in surgery for hours, and hours and hours. When she came out they told us that there were still holes in her intestines and she’d wear a colostomy bag until she was strong enough for the second surgery.

My son and his wife did not change dirty diapers they cleaned a colostomy bag. She was on life support and life was tenuous. She spent two months in the NICU before her second successful surgery.

When she was about 10 days old we received the news that Cystic Fibrosis had caused this medical crisis and we were no longer looking at months of recovery, but at months of recovery plus a lifetime of battling a progressive disease that could cut her life short too early. That her life expectancy was 38 years old.

I had felt despair before as a parent, but now I faced a deep spiritual crisis as both a parent and a grandparent. I had to relinquish control and become the support system my son needed. To shoulder his pain so that he could support his wife. He would call me and cry and tell me things that would make me scream silently into the phone while making attempts at providing comfort. The pain was physical –it was like breathing through broken glass, all day, every day for months. Tension is what held our bodies together.

Because the path forward was so unclear I had him focus on a point further out. This was August and I told him to focus on Thanksgiving whenever he was overwhelmed. To think about being at the table with his sweet daughter giving the most heartfelt thanks of his life. It was this vision that allowed him to take life one day at a time. A vision to move towards. Because the path is always unclear it helps to have a vision to move towards.

Looking back I can see I was sent the support I needed when I needed it most.  Not only one, but two of the women I worked with had children with Cystic Fibrosis. Peggy had told me, but since I knew nothing of the disease I did not remember. The other woman chose to keep it secret until she knew I needed to know I was not alone. Both women shared to save me. Peggy came to the hospital with photos of her now adult son throughout each stage in his life, active and happy, to illustrate what it actually looked like to live with this disease. More visions to move towards. I have countless other stories where the universe showed me grace during that time for which I am eternally grateful.

She is now a normal seven-year-old girl who loves school and Taylor Swift (maybe not in that order). She is compliant in taking her daily medications and doing her twice daily treatments. She strives to eat 2,500 calories a day and loves to dance. She is facing a liver transplant before she is 16 years old, and we will deal with that when the time comes.

We relearned what it means to be a family. That experiences are more important than things. That it is vital to live a meaningful life. She has made us stronger and brought us together into a tribe of loved ones–Adele’s Army. She has changed us for the better.

Our path is not clear, but we celebrate milestones and have visions of a healthy future and strive to be together as often as we can. We walk together, holding hands, one step at a time, in the fog of life.

One thought on “What Cystic Fibrosis Taught Me

  1. Thanks you, Elizabeth— this is a good reminder: “If you can see your path laid out in front of you step by step, you know it’s not your path. Your own path you make with every step you take. That’s why it’s your path.”
    –Joseph Campbell

    Liked by 1 person

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