Choosing to Become a Parent with a Life-threatening Disease

Janeil Whitworth avatar

by Janeil Whitworth |

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Let’s make this very clear: I don’t think I need to defend myself when it comes to the decisions that I make in my life with cystic fibrosis. However, I am a firm believer in the idea that with a greater understanding of others’ experiences comes greater empathy, and finally, greater acceptance. How am I supposed to expect someone to comprehend and empathize with my situation if I refuse to share and be vulnerable? I can’t leave them in the darkness of their own assumptions and expect enlightenment. Therefore, I think it’s important to talk about the difficulty in fighting the fear of the unknown and the dynamics of an uncertain future as a parent with a life-threatening and progressive disease. It’s not an easy conversation, but I know it’s something we all have to face: both the deep-rooted worry within us and the occasional judgment from others. I hope sharing in this way encourages the naysayers to become allies and the worriers to become hopeful.

Struggling with uncertainty

Many people with cystic fibrosis struggle with the prospect of becoming parents. Often, we feel anxious about making decisions for the future because of our shortened life expectancy and the progressive nature of our disease. Sometimes, we let the fear stop us from pursuing our goals. At some point, we have all considered the depressing reservations about parenthood: Is it selfish to want to be a parent? Will I make a good parent despite CF? Is it worth putting my family through suffering and grief if I were to die young? Is it fair to them? It’s important to be thoughtful with such a responsibility, and I commend us as a community for tackling those realities head-on, even when it hurts. I think this thoughtfulness makes us more purposeful parents. But, I always do wonder if healthy men and women ask themselves these questions before becoming parents. Probably not; and sadly that doesn’t stop heartbreaking loss from occurring in their lives.

No one knows what the future holds. We all face the same fundamental uncertainty, but with cystic fibrosis, we are made more aware of the uncertainty. We face this uncertainty every day, whereas those people who don’t have a disease like CF can casually tuck it away until they are absolutely forced to make peace with it. We aren’t that much different — the “healthy” and the “sick” mothers and fathers. It is just a matter of when and how we come to term with the great equalizer and the control we permit it to have over our desires.

Personally, I decided a long time ago to not let fear of the unknown choke the bloom of my life. Enter, motherhood.

Facing concern

Facing another’s concerns, expressed both out of love and out of spite, is a rite of passage as a parent, it seems. For everyone, not just for those with cystic fibrosis. After announcing my pregnancy, I was surprised by people’s uneasiness towards my decision to become a mother. Maybe they assumed my disease would get in the way of caring for a child? Maybe they thought I should let fear hold me back? For every spectator’s doubt or concern over my ability to be a mom, I promise you I have deliberated that same hesitation over and over and over again to the point of insanity. I have tossed and turned from worry at night, and I have shed tears while rocking my newborn baby, anxious to get it right.

Raise your hand if you are a mother and have experienced those intense moments of doubt as well.

I thought so. Once again, we are much more alike than we are different. We are in this together.

Cystic fibrosis will undoubtedly alter my experience as a parent. However, every person has their own barrier they are fighting to overcome that humbles them to be a better parent. Ask your parents what personal obstacle shaped them as a parent, and I bet it won’t take long for them to think of an answer. Was it a death of a spouse? An illness? A divorce? A vice? A career?

Cystic fibrosis is what humbles me as a parent. CF has made me a more loving, grateful, intentional, invested, resilient, and affectionate parent. Moreover, having my son has given me additional purpose and fulfillment. It has made me more fearful and braver all in the same space. It’s been the biggest risk with the greatest reward.

So what if a disease is the catalyst for those actions? In the end, I am fulfilling my roles, concurring my fears, and living a life I want to live. An outsider could not doubt the love I have for my child, and to me, that proves I’m killing this motherhood-with-a-life-threatening-disease thing. I am a mom who happens to have a disease. Let’s start recognizing our weaknesses as fuel to our strengths, and maybe we’ll never have to defend our choices to become parents again.


Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.


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