disabled adults

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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CW: Discussion of mental health issues


Mean Boys alumni caller and all around good guy Shortbus Murphy joins us to talk about dropping an amputee on her face, cleaning jizz off the mentally handicapped, and how to really play the "why are you hitting yourself" game. We also nerd out about wrestling and then have a long and involved discussion about music, whats going wrong with it, whats going well and what we like. The episode cuts off a bit abruptly at the end due to audio issues, but I promise I'm getting better at this.