We as a family have survived, changed, grown and even thrived since that sad and difficult time in 1991 when Sarah first fell victim to meningitis and then to encephalitis.
Thinking back, I remember the days and nights spent at the hospital and the fear and uncertainty that were our daily companions. For many months, when I stepped out of the elevator on the neurology floor, my stomach would clench and my heart would race as I imagined what might await me around the corner.
I remember my toddler thrashing uncontrollably as a result of neurologic dysfunction, of being fed formula mixed with corn oil to try and keep up with caloric needs. I remember the placement of her feeding tube. I remember her being “slept” for weeks without end into an artificial coma with potent drugs. I remember her, in a neurologic “storm”, biting off her own tongue. I remember the day that I realized that she was blind. I remember two other children hospitalized with encephalitis, dying.
I remember bringing my two healthy, sad, confused and terrified children to stand next to her bed and talk to her, pretending all was well.
I remember the dance, two steps forward and three steps back. I remember Sarah’s respiratory failure, her tracheostomy tube being placed, her cardiac arrest. I remember my husband, as a physician being stoic, but understanding full well what was happening. I remember myself being doggedly optimistic and not understanding, at all, what was happening.
Ultimately Sarah went to live in a pediatric nursing home. She lingered for many years in an unresponsive “vegetative state”, enduring pain, illness and pneumonias, seizures, dislocations, surgeries. We struggled to keep body and soul together, and adjusted to the new reality.
Alan was inspired to create H.A.L.O. to enhance quality of life for children like Sarah, and to an extent it helped us heal.
Seven years further into our journey, I thought I saw Sarah trying to smile. Alan assured me it was just gas or wishful thinking but as years passed I became more convinced I saw it. But was it an authentic smile or another neurological aberration?
Now, 25 years down this bumpy road, I am pleased to report that Sarah is definitely smiling - and frowning and crying - with intention. After her tracheostomy tube was removed about two years ago, she started to make sounds, randomly at first and now with intention, on command. She even chortles with intention. Does she understand? Fool or optimist that I am, I think she might.
I am realist enough to know that Sarah’s life is fragile and her condition complex. Julie and Danny have grown up. Sarah has just grown. Despite her challenges, she has managed to outlive her life expectancy and for that we are grateful.
We visit Sarah two or three times a week. Sometimes I beat myself up thinking that it is not enough. What if we could do more to make her happier? I console myself with the thought that had Sarah’s life been “normal” she would have long since flown the nest and we would be seeing much less of her as she pursued her dreams.
I would gladly wish that for her. We are blessed to have Sarah in our lives for as long as she is able. She is safe and well cared for and well loved. I can’t ask for more.
Gayle Pinshaw
