Margaret M. – Scholarship Contest Essay

Editor’s Note:  Margaret M. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook “Like” or Twitter “Tweet” buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.

My youngest son, Evan, was born in 2004 with a rare craniofacial syndrome called Apert Syndrome. This syndrome affected nearly every bone in Evan’s body. His head was misshapen at birth, he had hydrocephalus, his fingers and toes were fused, he had a cleft palate, and his spine was curved. He wears both hearing aids and glasses. He battles respiratory and digestive challenges on a daily basis.

The moment Evan was born I was torn from the role of expectant mom and thrown into the role of healthcare manager and caregiver. I was completely unprepared for this profound change in my life.

Since that moment I have been Evan’s advocate and caregiver. I have spent countless hours searching for answers to make Evan’s life the best that it can be. Some of the most pressing issues I have been confronted with include: Who are the best doctors for Evan? What surgeries and medical interventions does he need? What therapy and extra support does he need? What are the daily routines that will keep him healthy and strong? What does he need to grow cognitively, in spite of physical challenges and development delays?

In my searching I have discovered some great resources. However, sometimes I feel like a one-woman exploration team finding my own way, alone, through uncharted territory. Just as an explorer documents each step of her journey, I have been documenting my experiences. I find that I learn from my notes and reflections. I also find that I am driven to share my discoveries in order to make other parent’s journeys a bit easier. Why reinvent the wheel? If I have an experience or knowledge that someone else could benefit from, I want to share it. Perhaps my most surprising discovery is that I now have a life that is richer, more joyful, and more meaningful life than I ever dreamed possible. Evan has grown into an eight-year-old with a boundless enthusiasm for life that inspires me every day.

In my newly released book, UNCOMMON Beauty – Crisis Parenting From Day One,  I share 97 short essays outlining the ideas that helped my family survive the first few years of Evan’s life. This book includes both practical tips and journal entries. It is my greatest hope that the essays will bring comfort, validation, and inspiration to other parents suddenly thrown into the role of healthcare manager and caregiver.

As a continuation of this book I started my blog, Marg’s Memos, in April of 2012. Here I share inspirations, affirmations and reflections on special needs parenting as Evan moves through elementary school and continues to struggle with complex health issues.

I envision Marg’s Memos as a place for parents to find fresh motivation and new resources to be the best possible health care managers, caregivers and special needs educators to our children. It also highlights the important fact that caregivers need to care for themselves and offers strategies for achieving this.

The Internet has been an important key in my success through this journey. I have been able to connect, learn, support and be supported, and close geographical obstacles by using the Internet and social media. I have used blogs, websites, e-mail, Facebook, Google alerts, Skype, and Facetime. Whether or not I have discovered all of the tools that are out there to be discovered, or if I am using what I have discovered to their fullest benefit, I don’t know. I would like to learn more in order to know more.

I am forging my way with limited financial resources remaining after Evan’s many surgeries and medical needs. If awarded this scholarship I am certain that I would learn vital information that would be extremely valuable as I continue searching for answers, advocating for Evan, and sharing what I discover. As a participant in the conference I would also welcome the opportunity to share my own knowledge through discussion.

Thank you for considering my application for participation in the 2012 Social Media Summit presented by the Mayo Clinic. I am grateful for the opportunity to participate in the 2012 Patient, Caregiver Scholarship Contest.

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