A Journey of Gratitude in Preparation for the Holiday Season
A columnist acknowledges the love and support she's found in the rare disease community
Thankful, grateful, blessed. These three words are part of a table decoration my husband recently bought me and placed on my desk as a reminder of the incredible life we are living. No matter the time or day, these three words give me hope and inspire positive thoughts and feelings.
As we start the holiday season, I have taken some time to reflect on these words and my own feelings of gratitude, thankfulness, and blessedness.
In the five years since my youngest daughter, Bella, was diagnosed with neuromyelitis optica (NMO), I have made it my personal mission to be closely involved with her care, advocacy, and education about the illness. I do this to further people’s awareness of the disease, so that diagnoses can be given much more quickly for those searching for answers.
I’m thankful for NMO foundations like The Sumaira Foundation, which work tirelessly every day to connect with patients around the world, advocate for new research, promote awareness, and develop therapies to help patients cope with an NMO diagnosis or to regain their strength while recovering from a neuromyelitis attack. The lessons I’ve learned from the many podcasts, webinars, and Zoom meetings are always at the front of my mind when I check in with Bella’s doctors.
I’m grateful for the opportunities I have as a rare disease mom, caregiver, and advocate. I’m grateful for the chance to help others who have been affected by neuromyelitis optica through my position as Colorado ambassador and now program manager at The Sumaira Foundation’s biweekly support group, The Human Collective Project.
I’m also grateful for the opportunity to fulfill a lifelong dream of being a writer and having my own column here at BioNews, the parent company of Neuromyelitis News, where I am surrounded by others on their own rare disease journey.
I’m thankful for the amazing doctors and researchers working every day to make life with NMO better, and for the ability to share these new findings and the stories about unique personal journeys. I am inspired and moved by everyone’s courage and positivity, because it gives me courage and positivity, even during the darkest of days.
Most importantly, I’m grateful for all of my blessings. I have an incredible support system in my husband, kids, other family members, and friends. I know that I can count on my loved ones in both good times and bad. Being part of a community of rare diseases can be difficult, lonely, and challenging at times. Knowing that I have a support system in my community and family is what gets us through the tough times and allows me the ability to be there for others during their time of need.
With the holidays upon us, I plan to remain present in the moment and grateful for all of the opportunities, the love, the people, and the positivity in our lives. Being part of a rare disease community has been one of the biggest challenges and the most rewarding part of life to this day.
Here’s to wishing you and yours a holiday season full of thankfulness, gratitude, and blessings.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).