Congratulations to Runner-Up winner Robin S. of Vancouver, Washington.
To enter this year’s 20th Annual Caregiver Story contest, click here!
Every day has been a learning journey with my little girl. I took her in at birth and we laughingly agree sometimes that we are like the blind leading the blind. Both of us disabled, but me fiercely devoted to protecting and caring for her. My every thought and action are a devotion to her care and happiness daily.
She, who might be my ‘forever child’ as I envision, will become fiercely independent with all the skills and tools we have learned over the years together. So many therapies, IEP’s, meetings, doctors and appointments come along with a feisty, autistic 11-year-old who also has a benign brain tumor and spina bifida. The many tests, procedures, spinal cord surgery and two brain surgeries to recover from are a testament to her bravery and tenacity in the face of adversity.
There are also school and family nights, friends made, basketball games and goals achieved. These are the victories we hold on to.
Despite all her challenges she continues to surprise and amaze me daily. With her love for art and music and her dramatic flair, she fills our days with never-ending laughter and an innocent excitement that leads her to the need to know everything about everything.
Our life also comes with mood swings, headaches, pain and meltdowns.
With sensory dysfunction, any change or stimuli can bring this on. As a single mom battling a rare illness and recovering from seven of my own brain surgeries, it is often a struggle. The balance is hard to come by, but after 11 years, I have learned where to find the small moments that are necessary for my own health and sanity. There are pockets in time, small moments you can grab like a bath, a walk alone or a movie with a friend. Then there are times you need a bigger gesture to reset your spirit.
I ask for help when I need to from our small village. I search endlessly for resources that might benefit our tiny family. And when I need to, I tap out. I find a way via family, friends or respite to get in my car and drive away. I drive to a place I don’t have to care for anyone, to a place where I only need to think of myself and don’t have to be constantly busy.
This often brings me to the ocean. The sea washes away my worries and as I stare at the waves, my mind empties and my soul fills back up. I am me again, just Robin. Not mom, or caregiver, or foster parent, but Robin. I empty my mind and heart of all the busyness for just that time, so I can go back and be an even better more patient vessel for love and healing for my little star.
Never forget to put on your own oxygen mask first is essential to saving you both. You are equally important as a person and caregiver, as a human being. In understanding and believing this, you will find your balance. Self care isn’t selfish, it’ a beautiful gift and you should accept it without guilt or a second thought whenever it’s offered to you. Your life will be better for it, and a happier you means a happier them. It’s all connected, interwoven in the tapestry that is this challenging yet still beautiful life.
Winners were selected by a panel of independent judges: Margarita Bermudez, the Manager of Professional Training and Healthcare Services at Alzheimer’s Los Angeles; Amanda Hlynosky, RN, BSN, a critical care nurse at Cleveland Clinic; and Leigh Ellen Key, Executive Director for Crohn’s & Colitis Foundation, South Texas and Louisiana/Mississippi Chapters. Click here to learn more.
