Brady Murray
July 08, 2024

Living in the Present With Marci Dunning

Marci Dunning is a medical mom and parent to four children, including her youngest daughter Freya, who has the rare Cornelia de Lange Syndrome (CdLS). In this powerful episode of Conquering Your Clownfish we explore Marci‘s inspiring story. From processing the shock of diagnosis to the daily challenges of raising a child with a rare condition, Marci offers invaluable insights for families facing similar situations and anyone seeking to understand the complex world of rare disabilities.


This blog post focuses on the weight of anticipatory grief, the struggle to plan for an uncertain future, and the transformative power of living in the present. Through Marci's experiences, we'll explore how families can navigate the challenges of raising a child with a rare condition while finding joy, purpose, and strength along the way.

The Weight of Anticipatory Grief


Anticipatory grief is a complex emotion that many parents of children with life-limiting conditions experience. This feeling became a constant companion for Marci after Freya's diagnosis with Cornelia de Lange Syndrome. This rare genetic disorder affects growth and development, causing a range of physical and intellectual challenges. With the uncertainty surrounding Freya's life expectancy, Marci found herself grappling with the possibility of loss even as she celebrated her daughter's life.


The concept of anticipatory grief is not widely discussed, but it's a reality for most families in similar situations. The fear of losing Freya became an ever-present undercurrent in their family life, affecting not only Marci and her husband but also their other children.


Despite the weight of this anticipatory grief, her family has learned to balance the reality of Freya's condition with the joy of her presence. This delicate balance involves acknowledging the fears while also cherishing every moment they have together. Marci's experience highlights the importance of addressing these complex emotions and finding ways to cope with the uncertainty that comes with raising a child with a rare condition.

The Struggle to Plan for an Uncertain Future


One of the most challenging aspects of parenting a child with a rare condition like CdLS is the difficulty in planning for the future. Marci’s natural inclination to plan ahead has been dramatically altered by Freya's diagnosis. The unpredictability of Freya's development and health needs makes long-term planning intimidating.


This uncertainty extends to various aspects of family life, from educational decisions to financial planning. The family also grapples with questions about Freya's long-term care needs and how these might impact their other children's futures.


Despite these challenges, Marci and her family have found ways to adapt. They've learned to focus on shorter-term goals and to celebrate small victories. This shift in perspective has allowed them to find joy in Freya's progress, no matter how incremental. Marci's experience underscores the importance of flexibility and adaptability when facing an uncertain future.

The Power of Living in the Present


For Marci, learning to live in the present moment has been life-changing. Faced with the uncertainties of Freya's condition, Marci discovered that focusing on the here and now was not just a coping mechanism, but a pathway to finding joy and purpose in their daily lives.


This shift towards present-focused living has had a profound impact on the entire family. Marci describes how they've learned to appreciate the small moments of happiness and progress in Freya's life. Living in the present has allowed Marci to see Freya as a whole person, beyond her diagnosis. It is important for her to recognize Freya's unique personality traits, her stubbornness, her happiness, and all the qualities that make her who she is. This perspective has not only enriched their family life but has also become a message that Marci shares with others through her social media presence.

Choosing to See Lessons Learned


Through her experiences with Freya, Marci has gained valuable insights that have helped and other families facing similar challenges:


1. Acceptance takes time: It's okay to go through stages of grief and denial when facing a diagnosis.

2. Support is crucial: Surrounding yourself with understanding friends, family, and professionals can make a significant difference.

3. Education is empowering: Learning about your child's condition can help you advocate effectively for their needs.

4. Flexibility is key: Being open to changing plans and expectations can reduce stress and disappointment.

5. Celebrate small victories: Recognizing and enjoying small progress can bring joy to daily life.

6. Share your story: Opening up about your experiences can help others and reduce feelings of isolation.


Freya has not only transformed her family's life but has also had a ripple effect on their community. There's still progress to be made in terms of inclusivity and understanding. Compared to 20 years ago, positive changes in how people perceive and interact with individuals with disabilities have taken effect in society. Her advocacy work, both online and in her local community, has played a role in educating others and promoting acceptance.

Be Kind to Yourself and Others


Marci reminds us of the resilience of the human spirit and the transformative power of love. It brings out the importance of being kind to oneself and others when life takes unexpected turns. For families facing similar challenges, Marci’s example offers hope and practical insights for navigating the complex world of rare disabilities.


To those who find themselves on a similar path, remember to be patient with yourself as you navigate this new reality. It's okay to have moments of doubt, fear, or sadness. These emotions are a natural part of the process. Equally important is extending kindness and understanding to others who may not fully comprehend your experiences or their own.


For those not directly affected by rare disabilities, Marci's story is an invitation to open your heart and mind. Practice empathy and inclusivity in your daily interactions. Small acts of kindness and understanding can make a world of difference to families facing these challenges.


Ultimately, Every life has value and purpose, regardless of ability or disability. By embracing the present moment, celebrating small victories, and seeing the whole person beyond the diagnosis, we can create a more inclusive and compassionate world for everyone. We can help their disabilities become special abilities. 


You are invited to live more fully in the present, to cherish the unique qualities of every individual, and to spread kindness in your community. Whether you're directly affected by disability or not, we all have the power to make a positive difference in the lives of others. Start today by being a little kinder to yourself and those around you.



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