The following was written on March 2, 2017 by me, Katie Grashow. My fairy girl, Ada Mae is now 9.5 years old and lives everyday with zest and tenacity and a spirit that inspires everyone open enough to enter her foreign world full of raw living, authentic interactions and music…
I’ve always admired people who “wear their heart on their sleeve” so for the next year everyday I will be wearing #myheartonmyshirt to spread awareness for Phelan-McDermid Syndrome and stand up for the most vulnerable.
Inspired by our friend and fellow PMS mama, Victoria Feddersen who has just completed an entire year of wearing one Phelan Lucky shirt, we hope to continue to create empowerment and give voice to the precious ones among us who do not have a “typical” voice of their own. Wilhelmina (Ada’s 6 year old sister, who identifies as an elf AND has pointy ears to prove it) just announced that she will be joining me in rotating wearing our Phelan Lucky shirts, our World of Mae shirts and our Protecting Nature shirts.
The Phelan Lucky shirt, which was created by another PMS mom, Jennifer Randolph, symbolizes the gratitude we have for the unique beauty Ada and her PMS brothers & sisters possess despite many daily challenges. We feel lucky for these teachers who shine such gorgeous light.
World of Mae shirts symbolize the mystery we lived for 5.5 yrs before Ada’s diagnosis and the mysteries that continue while living with an extremely rare condition. World of Mae represents the many magical like qualities Ada possesses and the decision to rise above them through a community of kindness, creativity, and respect.
Protecting Nature shirts are significant because like Ada, Mother Earth is vulnerable and needs to be protected…as everything seems to be connected on this, Dr. Suess’s birthday…the Lorax advocates, “I speak for the trees.” Ada’s fairy ways deeply connect her to nature. She has always been deeply comforted and at most peace while in water, looking out a window observing the sky, plants and animals, and while crawling in the grass or running with the wind in her hair. A therapist once told us that often people who have intellectual disabilities (which is one of the many additional diagnoses of PMS) have an easier time cognitively processing the pace of the natural world.
We never know if Ada will or will not have various functional abilities but we do know that we will be proud and loving voices on her behalf. Throughout the next year we will share facts and insights about our life that will hopefully provide a thorough understanding and comfort level for people living with disabilities specifically Phelan-McDermid Syndrome;) #PhelanMcDermidSyndrome #fairystrong #disabilityrights #KnowledgeIsPower