Before Ben can go back to school we have to meet with the school nurse about Ben’s care plan. Our nurse educator at Children’s Hospital gave us stacks of papers with instructions on how to take care of a child with Type 1. The nurse educator told us we had to meet with the school nurse and make sure she understood Ben’s condition and how we needed her to care for him. I prayed that we would not really have to teach the school nurse anything. Because if that was the case, surely we were in trouble!
The day we returned home, Jeff called the school and we made our appointment with the nurse, Mrs. L. We arrived with stacks of papers and a bag of supplies that we would have to leave with her. We sat down at yet another long table, Jeff by my side and the Mrs. L across from us, but this time Ben was sitting quietly next to us. Fortunately, for us, there were already two students, at our very small elementary school, with Type 1, and Mrs. L knew exactly what to do. (I always feel terribly guilty about that sense of relief I felt once I heard about the other two students.)
Quickly, Mrs. L took charge of the meeting and walked us through the process. We worked through an official care plan with specific instructions on when Ben would be checked, what to do if his numbers were out of range, and when to call us for more specific instructions. To this day, I still frequently receive calls from Mrs. L while I am at the office. My fellow cubes mates have become accustomed to our frequent chats about glucose levels and meal plans.
After we had covered everything I thought we needed, then Mrs. L says we need to discuss what will happen if the school were to have a lockdown. Oh God! We had not even considered that! My first response was, “I will immediately drive to the school, bust down the doors, and find Ben.” Since both Mrs. L and Jeff thought this did not sound like the best plan, we agreed to come up with another. Mrs. L explained that she would need to make at least four lockdown bags to be stored around the school. In them we need to provide snacks with the appropriate carb counts and include instructions on how to take care of Ben if he were to have a low during a lockdown. This is just the plan that Jodie Foster needed in the movie “Panic Room.” If you have not seen this movie, Jodie Foster along with her daughter, the young Kristen Stewart, who has Type 1, lock themselves up in a panic room because someone has broken into their home. Unfortunately for them, they did not know Mrs. L and did not prepare a lockdown bag for their panic room. As Jodie Foster learned and we were learning, there is an endless amount of planning involved in taking care of a T1 child. I am so thankful for all the professionals, including Mrs. L, who were guiding us through what seemed to be the world’s largest learning curve.
But we are not done yet. Mrs. L asks, “What will we do about the bus?” Good Lord, will this ever end? Because Ben’s brothers were at a private school out of town, we had already worked out a carpool with another family in town who had sons at the same school. Because of this carpool, Ben was a “permanent parent pickup” in the afternoon. Either my friend or myself picked up Ben along with their daughter, Sophia. For the next few weeks we decided that I would pick up Ben at school. But what about the morning bus ride? We decided that Ben would continue to take the bus to school in the morning because it is a short ride, and he will just have eaten his breakfast. So we decided it was likely safe to take the 20 minute ride to school.
After we were done meeting with Mrs. L we needed to meet with Ben’s 1st grade teacher, Mrs. M. Mrs. M is full of energy and love. She was eager to learn what she needed to know so Ben could rejoin her class. We explained what Type 1 diabetes is and what she needed to do if Ben showed any signs of a high or low blood sugar. We explained that he needed to eat at precise times during the day. Mrs. M worked these additional snack times into her school day without complaint. We let Ben decide if we wanted her to explain his condition to the class. But he decided No. However, within a few days Ben felt comfortable enough to have me come into his class and read a book explaining Type 1 to his classmates. Ben made the transition back to school seamlessly. And I credit both the ever-loving Mrs. M and Mrs. L for that.
Ben returned to school on Monday, November 2, 2009, only one week after his DX date. That morning we woke up to our new normal. Ben first pricks himself and tests his blood sugar. I plan out a very precise 30 carb breakfast. I break out my Weight Watchers scale and measure out 32 grams of cereal. Then I measure out the milk. At first we found it difficult to plan a meal that would reach our specific carb target. We always found ourselves just shy of the total. Jeff figured out that a green grape was exactly 1 carb, so almost every meal, those first weeks, ended with some random number of grapes to make up the carb difference. I do not remember exactly what Ben had for breakfast for that day, but it is likely to have been a bowl of cereal, ½ cup of milk, and three green grapes. Once the meal is set, we give him two shots. First he gets Humalog, a short-acting insulin to cover his breakfast carbs. Then he gets a longer-acting insulin, NPH, that will cover his afternoon lunch. I then pack his lunch, again measuring and weighing everything. I write down his daily meal plan in a log that Ben will give to Mrs. L along with his test kit. Once Ben has finished his breakfast, and we finish our still daily argument about whether he has drunk all his milk, we pack up his backpack and get ready to walk to the bus stop.
Before Jeff left for school with Garren and Cole he laid out an instruction sheet he wanted me to give to the bus driver. It explained what needed to be done if Ben needed help on the bus. With our sheet in hand Ben and I walked out to the bus stop. We greeted our neighbors and quickly explained where we had been the last week. I did not have enough energy and focus to go into too much detail, so we just left it with, Ben has Type 1 diabetes.
When the bus pulled around the corner, I looked at Ben, who was all smiles, and then my heart sank. I was no longer sure I was going to be strong enough to let him go. But the bus pulled up anyway. I handed the bus driver our instruction sheet, and explained that Ben now had Type 1 and I needed her to read through this paper so she would know what to do in an emergency. The bus driver quickly said “OK” and she shut the doors and drove away. At that very moment I honestly thought I might throw up. If my two neighbors had not been standing right there I am certain there would at least have been tears. But instead, I attempted my bravest face, I wished them a good day, and I walked home.
Now begins one of my longest days. At the time I was working from home. I logged on to my computer, read some emails, made some phone calls, but mostly watched the clock. Once the clock hit 2:45 I jumped in the car so I could be the first in the pickup line. As Ben walked up to the car, I saw that he was smiling, and I smiled too.
Earlier in the day I had sent Mrs. M an email asking her how Ben seemed to be doing in class. Here is her response:
I laughed out loud. I may be the very first mother to be so pleased that her son was behaving badly in class. Poor Aidan H. got his toes stepped on, but I just laughed and laughed. (Dear Mrs. H, if you ever read this blog, please know I am sorry my son stepped on your son’s toes.) Our Ben was back. I knew he was feeling better. I felt better. And I thought, maybe, just maybe, we were going to be OK.