“Every new beginning comes from some other beginnings end.” -Roman philosopher, mid-1st century.
Riding home from the hospital, I got that familiar feeling in my gut. That feeling of fear and awe, that I was responsible for the survival, nurturing and education of this tiny being who we named Scott. The only difference was that this “tiny being” would “never” grow out of his need to eat every few hours.
(The word “never” is a strong word that seemed accurate 34 years ago. Just this year a company in the United Kingdom patented a product called Glycosade that is allowing people with this disease to sleep much longer than was previously possible.)
After nursing for a few months Dr. Crigler suggested it was time to switch to a formula laced with glucose. In 1978 glycogen storage disease was still being treated with continuous glucose during the night and very frequent feedings during the day. Frequent meant every one and a half hours with this little guy. If he didn’t take in some form of glucose his familiar sweet, inquisitive spirit would wilt and droplets of perspiration would form on his nose and forehead. If I waited too long his elfin hands would tremble as if he had palsy. Children with glycogen storage disease Ia cannot raise their own blood sugar efficiently.
Before he was one year old Dr. Judah Folkman, the Surgeon in Chief at Boston Children’s Hospital, cut into Scott’s small abdomen to perform a gastrostomy. Now we had the capability of infusing glucose into him all night by way of a pump, just like his sister Natalie. Now he could sleep without being awaken.
Probably out of necessity he learned to say words early. He would come to me and say, “Mama, ‘feetsies’,” which he has since explained meant that his feet were going numb or tingling; one of the signs of severe hypoglycemia. His favorite foods were chicken and rice, which turned out to be perfect for him.
I became more organized. Eight bottles of formula with added glucose would be lined up on the bottom shelf of the refrigerator door everyday; all different colors. When he could walk I allowed him to take his own bottles from the refrigerator.
Occasionally he would not finish a bottle and the next one would start early. I tried to keep track of which bottle he took at which time. Sometimes I found half drank bottles in the toy box or hidden in his stuffed animals. These were his first steps towards autonomy.