On Monday, I forced my 17-year-old daughter to drink 64 ounces of Gatorade laced with 14 doses of Miralax. Those of you who have had colonoscopies will recognize this as the standard prep, and realize that I was not trying to poison her. She was compliant, though miserable. She felt horrible all day, and was in the bathroom all evening.
On Tuesday, I took her to the endoscopy suite at the hospital, where she was sedated for a colonoscopy and upper endoscopy. In comparison to Monday, this was a breeze. She’d been having chronic ‘stomach aches’ for at least a couple years, and it was suspected that she had celiac disease, or gluten enteropathy. This is an intolerance to gluten, a component of wheat and certain other grains, in which ingestion of gluten causes the body to make antibodies against its own gastrointestinal tract. Some of the lining of the small bowel gets destroyed, and the patient starts to be unable to absorb certain nutrients. Symptoms can be mild or severe and can range from stomachaches to neurological symptoms. The treatment is a gluten-free diet, which essentially solves the problem, but has to be adhered to for life. A blood test will usually be suggestive of the disease, and my daughter had a positive blood test. Then the diagnosis is confirmed by upper endoscopy with biopsies. She’d already had this test once, and the biopsies were normal. But her symptoms continued. Since the disease can be ‘patchy’, the biopsies could have missed abnormal tissue. So she was getting a second test. The doctor decided to do the colonoscopy, too, in case the upper endoscopy was normal again and we still had no diagnosis. Plus there is family history of inflammatory bowel disease, so that was another possibility. After the test, the biopsies take a couple days.
On Tuesday afternoon, while my daughter was sleeping off her anesthesia, I helped my 20-year-old son pack for his extremely long semester abroad. He was leaving for Germany for 7 months, a trip sponsored by his college, so there are other American students. There is a month of intensive language, a month to travel, and then a semester, IN GERMAN. ACH!!!! His room in our house looked like a bomb had hit as he started packing- we had brought everything he owned home from Wesleyan, and he also had taken a little 10-day jaunt to Israel on Birthright, from which he had just returned on Sunday. He, and his possessions, were turned upside down. He did get packed. I took note of the unusual things I found in his room, most of which had to do with his art classes (paint cans, turpentine, lighter fluid from a project that involved burning some cloth) but decided that I would discreetly remove these after he left, rather than argue with him about the fact that it was not safe, much less civilized, to keep such things in one’s bedroom.
On Wednesday, my son and I made the drive to JFK so he could get on his flight to Germany. I let him drive and choose the music. After all, it was our last time together for a long time, and these were his requests. These were mistakes. I never take back promises. Instead, I gripped my seat (he drives like his father- with an assured aggressiveness- but without all the years of experience) and wished I had earplugs (his music of choice is Dubstep (you look that up, as I find it hard t explain- in my very un-hip, old lady mind, it is disco with way too much bass) and a strange mix of Reggae and Rap (I like Reggae and hate Rap- this just didn’t make sense to me). When we got to JFK, we paid hundreds of dollars extra for his overweight bags to go, and then stood saying goodbye. He suddenly looked like my little boy, a way he hasn’t looked in years, sweet and vulnerable and, well, scared. “It’s a long time, Mom.” he said. “I know. But you always adapt. You are so good at adapting. I know you’ll be fine.” I replied. “I know.” And then he was gone.
He started his own blog yesterday. And in his usual way, he is glib, and funny and smart. But reading between the lines, I’m not sure he’s fine yet. He will be. But not yet. He’s living in a dorm unit with 4 people who don’t speak English. One doesn’t speak… at all. They call her ‘The Phantom”. I suggested to him in an email that perhaps she’s a mime. It’s freezing in Reggensburg- much colder than here. And he describes the culture in the area as sort of like the ‘deep South’- his way of saying bigoted and insular, I believe… Everything about the situation would make me want to run away- but he’s there for the long haul, barring any disaster. He should be speaking very good German pretty quickly, at least. The only phrase he taught me before he left was ‘Achtung, Hauptman, dein floog brent’- which means ‘Attention, Captain, your plane is on fire.’ This will be very useful for me in my future life, I’m sure.
Meanwhile, we got my daughter’s biopsy results back, and she does, indeed, have celiac disease. So the gluten-free diet has begun. She has been a bit down about it, mourning croissants and muffins and soft pretzels… Though we are educating ourselves on the very large variety of gluten-free options- recipes, baked goods, pasta, restaurants, even pizza. It’s a tough adjustment for a 17-year-old, particularly one who is a pasta and pizza lover. Her incredibly supportive and loving friends have rallied around her, baking her gluten-free cookies, showing her apps on the i-phone that tell you where the closest gluten-free pizza can be obtained, and connecting her with other friends with celiac. And today, I had a real silver-lining-in-the-cloud experience. I was in Trader Joe’s and had just asked for a list of gluten-free foods, which they happily provided. I was standing in an aisle, reading the list and trying to understand the labeling on some of the packages, feeling a little overwhelmed and teary-eyed, when a Trader Joe’s employee, a young woman named Clare, walked over, looked in my basket, and said, “You’ll want to buy the Udi’s gluten-free bread with the green label. It’s much better than this one you have.” She asked me if she could help, and told me she had celiac and knew a lot of products and ‘tricks’ for shopping gluten-free. I told her about my daughter, and in five minutes, I knew all about labeling, which baked goods and pastas and cereals tasted best, how to make my own gluten-free bread crumbs trouble-free instead of paying the outrageous prices for the pre-made ones, and much, much more. She and another, older woman named Karen, also a gluten-free foods expert, invited me to bring my daughter in for a tutorial, and I left feeling much, much lighter, even though my basket was much, much heavier.
The good news is this. My plane is NOT on fire. Yes I’m hoping for this to be a less eventful week. Still, I am grateful that my children are, overall, healthy and resilient. They will roll with the punches, perhaps better than I. I ran into a patient this morning, an older woman who has grandchildren and great grandchildren. She said this to me: “When I was younger,an older woman who worked for me told me this, and I will pass it to you. It’s hard for us as our children get older. When they are little, we can hold them in our arms. But when they are older, we can only hold them in our hearts.”