After an uneventful pregnancy including four “normal” ultrasounds, Mariel entered the world with a Down Syndrome diagnosis and cardiac malfunction. Discharged from Memorial Hospital at five days old, Mariel was then referred to Cardiology at Seattle Children’s Hospital. While waiting for the referral to be processed, she was visited by a home care nurse. Her exam led to a trip to the pediatrician, then an ambulance ride to Memorial, and ultimately an emergency flight to the ICU at Children’s Hospital—all in one afternoon. While she appeared to be a sleeping newborn, she was actually in cardiac and respiratory failure. Our little family camped out at the Ronald McDonald House, even celebrating Halloween and her big sister’s second birthday there, while keeping a rotating vigil at her bedside waiting for a miracle. Three weeks, two surgeries and one naso-gastric tube later, we were given a feeding pump, discharged and sent home.
Our Children’s Village journey continued, including weekly cardiology follow ups, bi-weekly feeding therapy and eventually with my joining a support group. After the shock of surviving a year of doctor’s visits, tubes and syringes, joining the Holland support group was more therapy than I even knew I needed.
Through all of this, our visits to the Village were a family affair, attended by Mariel’s not-yet-in-preschool big sister Salome. My first “Passion for the Village” was “Hallelujah there’s a childcare area.” What could have been a scary weekly to a doctor’s office was transformed into an anticipated trip to the coolest play area in town.
My “Passion” continues with my contribution to the planning of the “Passion for the Village” event this last May. Being able to share my fifteen years of hospitality experience, including event planning at one of Washington’s premier wineries, my journey is really starting to make sense.
I am “Passionate” about the quality of care that has been a constant in our nearly three years at Children’s Village. We attend weekly speech therapy, both at the Village and at the Pegasus Project where she is learning new words while horseback riding. We are also blessed with an amazing educator who visits our home bi-weekly to encourage social and fine motor skill development. Needless to say, it’s all working. Some days it feels like I am trailing a pint-sized celebrity. Mariel celebrates her independence by walking sometimes running the Village halls and gets smiles and waves from everyone she passes by.
It goes without saying that having a child with special needs changes your life, but my experience with Children’s Village has put a powerful spin on the inevitable. I have a new definition as a parent and as an advocate responsible for getting Mariel the best education and the best care possible.
My daughter turns three in September, so we truly have yet to scratch the surface of the great things that Children’s Village has to offer. To guarantee that these offerings are available not only to my family, but to the countless children with special needs and their families all over the Valley, that is my Passion.