The Adapted Life
Welcome to The Adapted Life Podcast, a dedicated space for those who have faced profound challenges, particularly those who have navigated the journey of having a child born with severe disabilities. This podcast serves as a sanctuary for connection, offering support and strategies for building resilience when life unfolds differently than we envisioned.
In this series, I share my personal journey with my disabled son, detailing the ups and downs we experienced together. Our story is one of love, hardship, and ultimately, adaptation. But now, my focus has shifted to the complex and often lonely path of adapting to life after the loss of my son.
Grief is a powerful, consuming force that changes everything. It can feel isolating and overwhelming, reshaping how we perceive the world around us. Through this podcast, I hope to explore what it means to grieve, to honor the memory of my son, and to find ways to move forward while carrying his spirit with me.
We'll discuss practical approaches to adapting to loss, including how to find joy in small moments, the importance of community support, and strategies for navigating everyday life when the ground beneath you has shifted. This journey is deeply personal, yet universal in its themes of love, loss, and resilience.
Join me as we create a conversation around grief and adaptation, turning our experiences into pathways for healing and connection. Every story shared strengthens our community and reminds us that while loss is an inevitable part of life, we have the capacity to adapt and find new meanings, even amidst heartache.
The Adapted Life
Crisis! Special Needs Formula is Recalled
April 29, 2022
CRISIS! NO FORMULA FOR MY GTUBE FED SON!
In this episode, I wanted to share with you my experience with the recent recall of specialized formula that we needed to feed our 24 year old disabled son. The recall, of Elecare Jr. and the subsequent supply chain crisis of baby formula and enteral g tube formula for adults and children, was extremely stressful.
We went through having to watch Daniel experience a dangerous allergic reaction to a substitute food that the doctor thought would be safe. I spent days calling, everywhere, to find any supply of any amino acid based formulas even similar to what Daniel had been using for many years.
Eventually we had to switch to a different type of formulation all together, a vegan whole food made nutrition with peptides, created for g tube feeding. That is called Kate Farms, and for now he appears to be tolerating it fairly well. We are watching every symptom so carefully.
When the solution to feeding a fragile person suddenly disappeared over night, I was left scrambling to find a solution. And there was nothing similar to the original formula available anywhere.
He isn't a person who you can just, try this, try that... because of extreme sensitivity.
Adapting. When the solution to the solution is not longer a solution, because both solutions are rendered not available.
it is my world, caring for my son. I am his LIFE giver, not just his CARE giver. I take this responsibility very seriously, with deep awe and gratitude because of the love I have for my beautiful son.
I am one of a beautiful collective of people like me, who for many reasons, are faced with adversity and challenge in caring for another person. In LIFE giving, and all that comes with it.
This is my adapted life story. It changes every second. I have learned to surf the waves of hypervigilence. And with deepest empathy and compassion, I want to reach out across the universe to all who need someone who gets it. I get it. I am here, in Connecticut, caring for my son facing joy and challenge each day, writing and podcasting about it, creating video content for others to watch and share about this adapted life, and finding ways to grow in purpose and passion.
DEVELOPING PURPOSE FROM RESILIENCE IN ADAPTING.
Thank you for listening.
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