This past Monday I had the honor of making a presentation to an incredible group of special needs parents and caregivers in our community. I had been looking forward to this opportunity for months. This organization was created by a friend and pediatric nurse who witnessed a major gap in services for special needs children.
Gabe and I planned a role reversal. During the campaign, I introduced him at our various events. It soon became clear through my sharing of Mickie’s story that we had a committed passion for helping parents access the best possible care for their children. Gabe would start this time. He illuminated our battle with epilepsy and our journey to save Mickie’s life with militaristic precision. He has this way of explaining difficult concepts in an easily digestible way. I then shared my experience with post traumatic stress upon returning home from Mickie’s brain surgery. I had gone into hyper-perfectionist mode and was fighting hard to hold it all together. I would have breakdowns when the house was in disarray, fully aware that this was the state of our being as parents of little ones. I asked myself why? The answer shocked me. On a subconscious level, if everything was in perfect order my daughter would not die. I needed something to control, even if it was the perfect placement of a throw pillow. I knew it was time to heal. I manifested a dream babysitter, Sam Strong, who came regularly so I could attend yoga class.
As I navigated my way from this survival state, organically the phone began to ring. Families facing epilepsy were being referred to me. As my advocacy efforts expanded, so did the healing in my heart and my daughter’s brain. We reaped the benefits of developing relationships with the various therapists, teachers and doctors helping our daughter. As difficult as it may be, I have found it valuable to think about each situation from the position of the school, doctors, insurance providers, etc. Amongst restrained resources and challenging environments, I worked hard to make information available to her team. I believe this facilitation allowed each provider to be effective in their role and helped in getting Mickie the support she needed. This way of being allowed us find a pathway to the “yes”; to ask the right questions; and put in the right referral to influence a system designed to support typically developing children. Because as we know in the special needs community, there is nothing typical about what we do. It also helped that Mickie was a bright-eyed, eager to learn, charmer.
Lastly, I shared my recent revelations about the importance of self care and healing. Every mom and dad needs to take care of themselves so they can care for their loved ones. My journey includes a daily practice of meditation, yoga, journaling and reading. Am I perfect at it? No. For me, that’s evolution. Done is better than perfect in my world.
We ended the evening with questions and an open dialogue. As mothers shared their struggles and blessings, my heart chakra radiated with love and connection. My intention was to empower them to be the best advocates for their children. They were warriors fighting on behalf of our most vulnerable. I sought to inspire them and they inspired me.
Blessings,
Mrs. Griess