Sharing the Story

I once called myself the Medical Momvocate, then I bought the domain name and sat on it for years. I had no idea where to start with it, what I was comfortable sharing and how much time to devote to it. I’ve started and stopped. I’ve talked myself in and out of it. 

I decided to throw all of that aside and just do it. I could share the things I have learned, the day-to-day experiences of managing my child’s complex medical issues and the toolkit I have developed over the last seven years to deal with the circumstances my family faces. For my creative outlet just as much for the potential benefit of others in my shoes.

Why did I once refer to myself as a “medical momvocate” and what does that actually mean? I have been fiercely advocating for my son from the day he was suddenly diagnosed with a craniopharyngioma brain tumor at age 4. I advocate in every facet of his life, school, social, family, home, medical, healthcare, and so on. It is a 24/7 job and I think I have gotten pretty good at it. So much so, I made it my career. I co-founded the a foundation around the rare brain tumor that took hold of my child, and left my day job to make brain tumor patient advocacy my full-time gig. 

It is not the career I chose, but I find that it gives me a sense that I have been able to make a difference for my son and others that face the same difficult journey. 

In 2021, I did some hard work on myself. Refocusing and reframing my thoughts and developing new habits that could carry me through my role as mom and advocate for my son as well as professional patient advocate. In 2022, my intention is to continue to evolve and develop these tools to continue to improve circumstances personally and collectively for the community of brain tumor survivors and families. 

I want to be strong mentally and physically because there are a shit ton of injustices out there in healthcare – particularly in rare disease. From greedy corporations that house technologies that could make a difference in the lives of patients that have zero compassion to make that technology available to medical device companies that steal ideas, get government funding and kill projects which is what I am facing now as I write this.

Writing has always been a strength of mine. I meticulously documented the early days of my son’s diagnosis as an outlet to the grief and despair I felt, but, over time, I have spent less time writing because so many other things were pulling at my time and focus. This year, I am going back there to begin to craft the story that is my experience on this journey of watching my son Alex grow up facing so many health challenges along with cognitive and learning deficits.

I have so many stories to tell. Ones that you would not believe really happened. The desire to tell these stories burn deep but the fear of putting them out there has held me back. But it’s 2022 and here I am – ready to take ownership of my role as medical momvocate.

I fight for my son and for those facing the same fateful consequence and I fully intend to win at least 95% of the battles ahead. Join me as I share my battle plans, past and present.

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