“When we are no longer able to change a situation, we are challenged to change ourselves.”

Victor Frankl

My intuition had been right. Something was gravely wrong with my daughter. The blood tests that the pediatrician had ordered showed that Natalie’s liver function tests were severely deranged. She was admitted to Boston Children’s Hospital, but the Chief of Medicine was out of town. More data was gathered by interns and residents and presented to him upon his return.

Before Natalie’s father and I had our first (and last) meeting with the Chief of Medicine, he had already decided that Natalie needed to be seen by the Chief of Endocrinology. The meeting was arranged.  Dr. Crigler  John Crigler, MD – Children’s Hospital Boston  turned out to be a very tall, thickset, impressive gentleman with a hint of the South that still lingered in his speech. He bowed his head slightly toward me as he asked more questions, but gave no answers. I was mostly numb those days, going through the daily hospital routines with my feelings steeled up inside. I tried to exude a positive attitude. Denial can wear the most obscure disguises.

The following day in a conference room on the floor where Natalie had spent the previous three weeks, we were told that our daughter had one of three diseases, the last of which was possible, but unlikely; Glycogen Storage Disease 1a or von Gierke’s Disease.  Glycogen storage disease type I – Wikipedia, the free encyclopedia  There followed an uncomfortable silence. The only way the later disease could be confirmed at the time was a liver biopsy. It was suggested that a gastrostomy be put in place during the biopsy to facilitate the around the clock feeding schedule that she required. I had waited and waited for information. When it came there were no tears, only resolution laced with tension and fear.

The emotional side of the new trajectory of my life was too complicated to wrap my mind around. I was more worried about superficial things like scars and my little girl never being able to wear a two piece bathing suit, because thinking about what the future might look like was unspeakable. There were no words to ease the pain, no experience to draw upon, no one I knew who had walked this way before. The only choice in my mind at the time was to follow the advice of the doctors and to carry on.

I was 21 years old. Weren’t most people my age out partying with friends? My life revolved around making critical decisions for my smiling, giggly, good natured baby girl who I loved more than myself. Glycogen Storage Disease was an issue a pill could not fix. It was a chronic disease that would require a lifetime of care. The liver biopsy and gastrostomy were scheduled for the following week.

Lesson Learned: Acceptance of change is a process.

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