Last Week I attended the funeral of a 2 year old girl, a former patient of mine. At 1 year of age, she was diagnosed with a rare mitochondrial disorder and has been in and out of the hospital since last December. I actually took care of her on Christmas Day last year. Her first of many hospitalizations over the holidays. As the days increased in each length of stay I became one of her Primary Nurses, meaning I was assigned to her whenever I worked. As her illness worsened, these became busy days. "Miss E" required 1:1 nursing with her complicated tube feedings, speical medications (i.e. one given over an hour, every 4 hours day and night), central line fluids, frequent diaper changes, etc. Her little body endured so much! She was throwing up constantly, never ate anything more solid than yogurt, and probably was in persistent pain.
Yet she smiled, she laughed, she enjoyed her life in the hospital and her short visits at home. She loved playing in a bucket of water with her toys, squirting them with hospital syringes. She liked to "help" with procedures, and would hold an extra alcohol wipe while we worked to clean her line. She was a very smart patient. She knew her nurses names, knew "the treatment room" meant pokes. She liked going for "walks", meaning she sat in a toy car we pushed. Most kids like to go see the fake fish on the first floor. Miss E loved to go see the "noses"- Pictures of patients in Tibet with various sized nose rings. She loved music and singing, she danced around by bouncing her upper body up and down while sitting in her bed. She never learned to walk.
At the funeral her father spoke of the 7 ways Miss E coped with hard times (AKA being in the hospital) and how we can follow her example. She used books, music, playtime, water (she constantly asked for "one more sip"... and he compared this to Christ's Living Waters), comfort objects, close friends and family, and silliness. We all need a little silliness in our lives he said. He then explained to the congreataion some of the "silly songs" Emily liked. Of course, they are from Veggie tales. Belly button, SUV, and the hairbrush song are her favorites. He started singing a few lines over the pulpit. It was hillarious! And good to be laughing at a funeral.
Her family is truly amazing. From the time I first met them last Christmas I have been impressed with this humble, strong in testimony mom and dad with 7 kids, including 2 sets of twins (Miss E is a twin). As I talked with them through the months I really came to know these amazing (yet normal) parents who were simply dedicated to their children. At least one family member was ALWAYS with Miss E. We got to talking about the church, our callings, girls camp, missions, nursery,.... the more I got to know them the more the more impressed I became. They are an example to me of striving to live righteously, and of seeking to know God's will and following what He would have them do.
One nurse took it upon herself to make sure Miss E had her nails painted (after we got to know her). She was her personal manicurist. Even when Miss E got transferred to the ICU a couple times, she always had beautiful pink painted nails. In memory of our chubby cheeked angel, all of the nurses attending the funeral had painted our fingernails pink.
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Thank you Wendy's kids meal, for the inflatable blue crayon offering endless amounts of entertainment.
