We just returned from a trip to see Mickie’s Epileptologist, Dr. Mary Zupanc, in Southern California. This trip has become our thing. Like my fellow special needs parents, I’ve become a pro at managing the hospital stays, blood draws, routine and non routine doctor appointments and multiple therapy sessions. The preparation for a clinic visit or long term monitoring hospital stay (LTM)* begins months in advance. We call in Team Griess — Nana and dear friends step up to care for our boys in a beautiful symphony of love. We drive down and stay at our best friends’ Encino home. Mickie and I get pampered at my long time salon and patronize my old stomping grounds. The comfort of the routine helps us as much as it does Mickie. However, after fighting Epilepsy for over 4 years I have not mastered the emotional journey of dramatic highs and lows.
Each waiting room visit sends my stomach turning and a flood of memories and emotions fill my head and heart. I have flashbacks of the day we were told “Mickie will never be normal” and remember the chronic nausea I felt waiting for her to return from brain surgery. As I watch Mickie reading a book in her Daddy’s lap, I observe her same size peers waiting to be seen. I say prayers of gratitude for Mickie’s survival and the beacon of hope she is to fellow Epilepsy warriors who are losing the fight. I have thoughts of excitement in sharing Mickie’s new developmental milestones and feelings of fear when waiting to hear Dr. Zupanc’s opinion about her recent staring spells in school.
Now that Mickie can communicate better she practices what she will say when she sees the doctor we credit with saving her life. “Hellooo doctor Zeeee”, Mickie greets our Yoda in front of her Jedi team of compassionate health care professionals. A discussion about Mickie’s progress ensues. We learn our recent move that has our three kiddos sharing one room is not healthy. The number one trigger for seizures is sleep deprivation. As each child has a different sleep cycle, minor disturbances in sleep could be detrimental. She is happy to hear Mickie talking more and impressed when she hears her reciting 1-10 in Spanish. Routine LTMs are necessary to stay on top of her neurological progress so we schedule one in July as well as a neuro-psychological testing to assess her global developmental progress. This will assist her team back home in determining her Kindergarten readiness.
Before I can settle in to the appointment, Mickie begins to meltdown from exhaustion and Dr. Zupanc is expressing urgency to get to her first appointment with a young baby. I want to ask her for more time as I had a list of questions to ask her for this blog. I abstain, remembering back to our first appointment. Another epilepsy warrior awaits and time is of the essence. A bittersweet reminder of where we came from and why I’m taking a stand for global pediatric epilepsy awareness.