What a whirlwind of change, growth and learning the past year has been for me. I have spent a month in reflection, creating a daily practice of meditation, yoga, reading and journaling. This has helped me balance out from the fast pace rollercoaster our family had been on. When I started this blog in February I declared I would use it to document my journey as a Pediatric Epilepsy and RARE disease advocate. In some ways I feel I wasn’t 100 percent committed to that. Self reflection allowed me to see this was due significantly to time commitments with my husband’s recent political campaign, moving into our new home, and resistance to being completely vulnerable. I made a concerted effort to separate my special needs advocacy and this blog from the politics. I did not want my message to be diluted within the craze and drama of the political world. My effort was focused toward supporting my husband and therefore this blog took a back seat. I have realized that the two aren’t separate. Just two pieces of my life and hats that I wear.
Gabe and I had a vision to bring service back to politics and inspire citizens to engage in the political process. I was committed to using the opportunity as a platform for Pediatric Epilepsy awareness. Although we didn’t advance to the general election, Gabe won the hearts of nearly 25,000 people who voted for him. We are so proud of our efforts and feel blessed to know our community now.
In the wee hours of June 7, 2016 the reality of our loss began to set in. Hours prior we were surrounded by loved ones and supporters when a TV station reported we had won with all precincts reporting. Phone calls and chaos ensued. We finally passed out from exhaustion and woke up with heavy hearts. I wouldn’t have wanted it any other way. The intensity of our pain was a reflection of our efforts. We dedicated ourselves fully and wholehearted to our vision and overcame the fear of losing to walk through the fire and burst the bubble.
We took the family on a vacation to decompress and made a visit to our our naturopathic doctor. Her report on my health was not good. A year of putting my self care on the back burner had wreaked havoc on my health. This has been a pattern in my life. I know what to do. Yoga, chiropractic care, golf, meditation, writing and loving on my family keep me grounded and light my fire. I didn’t need to see the blood results to know my body needed healing from the past year’s stress and exertion. That’s when I began to ponder “what’s next?” My heart is set on standing up Mickie’s Miracles but my spirit and body tell me a respite is in order. And more importantly, I must solve the problem I have uncovered. Why do I continue putting my self care last when I know being the best advocate, care taker and healer means I must put it first?
Today, “what’s next” means preparing for Mickie’s long term monitoring (LTM) admission at CHOC Children’s Hospital on Tuesday. It has been a year since our last LTM stay. Her head will be wired and connected to an EEG machine by an 8-foot cord for up to 72 hours. I am nervous and apprehensive to see Mickie go through this necessary and life saving testing. In addition, we are taking her older brother Preston for the first time. We feel he is ready to experience what his baby sister and parents may need to endure for the rest of her life. I am committed to being vulnerable with those we read my blog by sharing my experiences over the next week.
Blessings,
Mrs. Griess