My wife and I always wondered how much he would remember of Maura's 2-month stay at the Children's Hospital of Philadelphia, or the flurry of neurological and pediatric check-ups after her release. Judging by his sense of purpose applying the medical kit, those memories were still a part of his vivid recall. The toys offered him a creative means to activate and explore those memories.
For all his deliberate play, I was shocked when he plunged the fake syringe into my mouth. It caught me off guard, and I nearly managed to choke out a reprimand when my wife shot me a sideways glance from across. the room. Then it dawned on me. This wasn't a pointy needle for immunization; he imagined the oral syringe we used to administer Maura's anti-seizure medication three times a day. Who could fault such a keen observer?
As for Maura, each and every day was marked progress. Each and every day distanced us from her last episode of epilepsy in early Septmber. Having already weened her off the anti-seizure medication Phenobarbital, my wife and I were eager to begin phasing out Topomax-- a medication more commonly known to treat migraine headaches.
Topo was also the only medication which required constant refrigeration, which seriously hampered our ability to "pick up and go" without more seriously planning our outings around her medication schedule. With a fair amount of consultation with CHOP's neurology specialists, we delicately planned to decrease Maura's Topomax schedule over a three week span-- ultimately eliminating the need for this particular treatment.
My wife administered the last dose of Topomax earlier this week. We allowed that major milestone to gracefully pass by with not much more than a FaceBook post acknowledging the event. It only took one incoming phone call to break that piece of mind.
Twenty-seven of my seventh grade students continued to research and write annotated bibliographies well into that Friday afternoon as the front office directed the phone call to my classroom; I discreetly answered the phone, nervously anticipating the next weighty words to drop with crushing gravity.
"Joe, Maura had a seizure this afternoon." There wasn't much more that could be said over the phone, and I could accomplish even less from my remote location miles away from my wife and children. We exchanged a few more words: Caroline outlined the narrative with a few critical details, and I offered a few words of heartfelt support. I hung up the phone and turned to finish out the rest of my school day.
Am I disappointed? No. The word too heavily conveys the idea of failure, lack of hope, and feeling unfulfilled. If anything I feel very relieved that Maura and her medications were able to hold the seizures at bay for such a long duration. Proud in my wife's determination to work with Early Intervention and physical therapy to develop the gross motor skills. Relieved that my son is handling our family crisis like a well adjusted 3-year-old.
So... we restart the clock back to "day zero seizure free," continue to manage Maura's seizures through the best medical attention CHOP can provide, and and continue to hope Maura will one day outgrow her epilepsy.
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