“If ever there is tomorrow when we’re not together…..there is something you must always remember. You are braver than you believe, stronger than you seem and smarter than you think.”
Winnie the Pooh
Four weeks after Natalie was admitted to Boston Children’s Hospital, the doctors were verging on a diagnosis. The path to this juncture seemed short in retrospect. We all decided the gastrostomy (Pediatric Surgery – Gastrostomy Tubes) was a good idea because of the rigorous feeding schedule that maintained her fragile blood sugar. A liver biopsy was being preformed at the same time to determine the exact nature of her metabolic disease.
There are good men and there are great ones. After a few moments with the surgeon, Dr. Judah Folkman – Wikipedia, the free encyclopedia, I knew I was experiencing greatness. When he spoke there was no judgment, but he was decisive. He was kind in his choice of words, but did not mince them. He acknowledged my anxiety and reminded me of my intellect. In a short time he prepared me, a 21 year old mother, about what to expect when Natalie returned from surgery. He drew pictures of what the tube would look like protruding from my little girl’s abdomen. I started learning vocabulary like stylette, stoma, granular tissue, G-Tube and balloons that inflated to secure the tube in the stomach. Dr. Folkman spoke in positive honest terms and I felt like I could do what was being asked of me, in spite of my fear.
I was excited about the prospects of feeding Natalie while she was asleep without disturbing her. She would finally be able to sleep without getting hypoglycemic. I seriously had no consideration at the time for my own lack of sleep and how that might effect me. Why should I? Were there options?
Natalie was wheeled off to surgery alone early one morning in July 1977. I cannot honestly remember how long it took or where I was ….probably because I think I went home for a full night sleep and I felt bad about that. When she was delivered back to her room I was waiting for her. She had a golden colored tube extending from a dressing on her abdomen and one IV in each arm dripping glucose into her veins to stave off the hypoglycemia while she was not allowed to eat. I didn’t know it at the time, but her pancreas was working overtime supplying insulin to handle the constant flow of glucose into her veins. If an interruption in the glucose lasted very long she would be in danger of severe hypoglycemia; so severe that children have perished. My ignorance was blissful, but could have been deadly.
I gently laid my hand on Natalie’s arm, because cradling her was out of the question. I spoke softly to her and told her how things would be easier now. My muscles were stiff from anxiety, I felt sweaty with perspiration, but Dr. Folkman told me I could handle this, so I knew I could.
Lesson Learned: You can do what you think you cannot.
Dear Iris, Thank you for sharing Natalie’s story with us. I would say I have enjoyed reading your posts but I’m not sure “enjoy” is the right word to use about something so heart-wrenching. I know reading about your journey will help other parents who may be facing this same road. I hope it will raise awareness of this disease and make access to a cure more possible. When I think while you were going through this I was blithely preparing for my last semester of college and my only worry was eventually finding a job… I wish I would have been more supportive at the time.
I believe most of us have good friends and different “villages” throughout our lives, but we essentially walk alone on our path. Thanks for posting.
So glad I found this, Iris. Can’t wait to read more.