Telling classmates

M said a lot of wise things after being diagnosed.

One of them followed my statement about "message control". I asked her to refrain from telling her classmates about her diabetes so that we could tell them together, all at once, and answer their questions. I pointed at her classmates' propensity for gossip.

To which M said, "Yeah, because we need support, not drama."

We first spoke with directors of M's little Montessori school, to discuss with them her schedule, her responsibilities and emergency procedures. We then scheduled to meet with the class just before lunch on M's first day back.

It is fortunate that I am a teacher. I talk to kids all day, and enjoy helping them understand new things. I also feel that I have the advantage of knowing and understanding the broad capabilities they possess. I credit them with being better able to handle things than many adults believe.

They did not disappoint. M's peers were very interested in what I had to say, and asked very intelligent questions.

We started off the talk by having kids recall some of the changes they had seen in M over the past several weeks: weight loss, vague illness, pallid complexion, and (their favorite to recount) crankiness. We ended that portion of the discussion with our subsequent trip to the doctor and the diagnosis (we skipped the helicopter bit).

We defined diabetes. Explained why M would need shots, and what symptoms of bg highs and lows might look like. We enlisted the kids' help in supporting M if she seemed a little "off"

We talked about nuts and bolts. "This is a meter. This is how it is used (demonstration)."
"These are the needles M will have to use. See how small they are?"
"This is how often M needs to inject herself."
"M has a very restricted diet (remember reader, she started on the rigid program). She can eat whatever she likes, but it must fit into the number of carbohydrates needed at certain times of day. She can take home special treats to eat later."
"M can make these determinations herself. If you have questions, she will be happy to answer them, but please assume that she knows whether she can eat something or not."

The students in M's class understand empowerment. They had no problem allowing M to make her own food choices. In the coming weeks, however, they did ask M a lot of questions based on things they had heard at home. M had no problem setting them straight.

The final result: I think that the kids in M's class are better educated about diabetes than nearly every kid that is not a diabetic himself.

Sometimes, when I pick up M after school, kids will report to me if she had a high or low bg count. Even better, they might tell me, "Wow, M's had great bg at lunch all week! It been around 107 just about every day!"

Because we had tailored the message to her friends, M was able to share her needs with and demonstrate her capabilities to her peers. No one in her class thought they were going to catch diabetes, nor did they perceive that M was in eminent danger. They DID understand that diabetes is both serious and manageable, and embraced their partnership in helping M maintain her good health.

Within a week, M was back to climbing trees and scraping her knees on the playground, and no one was treating her like an invalid.

In short, we had achieved our goal: support without drama.

Food is medicine

It was very fortunate for us that school vacation (Up here, in the Great White North, the land of snow and ice, we actually have a one week vacation in February, and another in April.) had started the evening we returned to our house. The dog was safely at the sitters, and we unloaded our new life gear onto the dining room table. We all flopped into bed, exhausted.

Packing light is now a thing of the past.

There was no rest for the weary. Not even the weary who had spent a restless two nights at a hospital. There was blood sugar to be checked at 2:00 am.

We were reassured at the hospital that the need for such checks would not last forever. I was pleased to hear this, because neither of my kids slept through the night until they were five years old. And they were five years apart. That's right: I had suffered ten straight years of no more than four consecutive hours of sleep. Even though I had been allowed to sleep through the night for the past six years, I had not yet stopped appreciating it. I was reassured that unless it was over 250, I need not worry too much. It would take a while for her body to adapt.

Of course, these days, if her bg is over 250, we are on it like white on rice.

Perhaps, considering the number of carbs in rice, this was not the best choice of a metaphor.

Her middle of the night bg was acceptable,  and we had the pleasure of waking M in the morning for her 25-30 carbs of breakfast. We didn't know how many carbs were in the food we had in the house, so we consulted The Calorie King. 

The Calorie King is a fabulous manual that families dealing with diabetes can use to calculate carbs of typical foods, as well as grams of fat and calories. We opened this book more often than the phone book, the Bible, or the newspaper. We were pretty well told that we needed to buy it. Best. Investment. Ever.

The first few weeks were spent looking up food and remarking on the number of carbs in each. This is especially fun when you choose fast food or brand names that you suspect are bad for you. As in, "Holy crap, did you realize that a chocolate chip muffin has 87 carbs?"

"Let me see that a minute.... Look here; a cheese omelet only has has 2.5 carbs!"

"No way. Let me see that. Whoa! A medium caramel malt from Dairy Queen has 163 carbs! What do you think is the most carb filled thing in here?"

"I think it's the whole bloomin' onion: 185 carbs."

"Wow!'

And so on.

Right now we were trying to figure out how to get M the amount of food she needed to fill herself up, but still keep her meal under 30 carbs. The bread we regularly bought was 28 carbs per slice. That didn't leave a lot of wiggle room. Eggs were 1 carb. We cooked 2 eggs, bacon (0 carbs) and one slice of toast. We realized we would have to invest in sugar free jello, and fast. Jello was "free". M could eat as much sugar free Jello as she wished. Seeing as she needed to gain back 20 pounds, we needed to keep her fed. We would need to buy lower carb bread.

I gave M her morning shot. In this rigid program we selected, there were two kinds of insulin: Humalog and NPH. NPH was the medium-acting insulin. It is what they call "cloudy" insulin. We needed to gently roll it between our palms to mix it. Then we needed to draw air into the syringe that was equal to the amount of the insulin we needed to withdraw from the vial. This was to pressurize the vial. Then we drew the insulin into the syringe and injected it into the subject: aka M.

In the morning, we actually mixed insulins to minimize the number of injections to which M would have to be subjected. The process went like this: roll NPH, swab both vials with alcohol, pressurize both vials. Now draw in Humalog, then draw in NPH. Inject.

Humalog is a fast-acting insulin. We gave it to M three times per day. The NPH was given twice. Because we mixed it with the humalog once each morning, M was given a grand total of 4 injections per day. Somehow, that seemed bearable. Since she was eating 6 times per day, the flexible plan would create a situation in which M would get at least 6 injections per day. That sounded like a lot.

We continued to look through the Calorie King. We tried to put together a grocery list based on foods that were lower in carbs. M likes fruit. What kind of fruit is low in carbs? Blueberries, cantaloupe, strawberries. Not exactly in season here in New England.

In the spirit of charting new territories, M and I hit the grocery store in search of high protein, high fat, low carb foods.

After 2 full hours of thoroughly searching grocery isles, checking labels, and finding new products that M wanted to try, we spent just over $300. For comparison, you should know that our family normally spent in the neighborhood of $120 a week. I took a deep breath and paid at the register. I told myself that it didn't matter what it took, that we were going to keep M healthy. I tried not to think about the long-term consequences of doubling our food bill over time.

I feel like I must tell you that, now - since we have figured things out- we spend about $140 per week on groceries. Nearly all of those "diabetic" products on the grocery shelves and the foods she ate in the hospital were expensive and unnecessary to M's health.

We'll talk more about that later.

Ironically, we ended up buying candy and soda. We never kept candy in the house before, but sometimes we were just a carb or two off from M's desired range. Hershey Kissess had about 2 carbs each. The soda was in case M had a low bg reading. Those mini cans of Coke would be just the thing to bring her back up again. We rarely had soda in the house either. Now we always have tiny cans of Coke, even though her "quick acting carb" of choice is currently Smarties.

Time to feed M her snack. She would have to eat every three hours. What could she eat for 20-25 carbs? 2 Tablespoons peanut butter on celery (8 carbs) , two cheese sticks, (6 carbs), a hard-boiled egg (0 carbs) and 2 Hershey Kissess (5 carbs).

The schedule of 4 shots and six eating times was exhausting. It seemed like we were always in the process of doing something to manage M's diabetes. All day. Night offered only a four hour reprieve.

We all agreed that we were looking forward to the time when all of the work, scheduling, calculating and planning would be like second nature. We had been promised by nearly everyone at the hospital that it would. Fortunately, we had a week before M had to go to school. We would have time to at least better orient ourselves before attempting to get back to "normal."

Needles, needles, needles

There is a special way to give an insulin shot. Who knew? First, you pick a meaty chunk of the body: back of the arm, butt, thigh, or belly. Then you pinch about an inch or so of the chunk you picked. Insert syringe, plunge insulin into body, then stop pinching. Only after all that can you remove the needle.

It seems that insulin, unlike many other medicines, absorbs best in the fatty layer of tissue, not in the muscles, as is the case with most immunizations. We practiced on an orange. Then we were ready to try it out on M.

B went first. I would have to wait for my turn in a couple of hours. I was glad to see him do it first. I am pretty sure that this was his way of dealing with a situation that was beyond his control: control the things you can. Like giving your daughter a shot in the belly.

He administered the injection perfectly. Never was I so proud of my mate-selection skills. He was brave, practical, intelligent and competent. Not once did he lose his temper or his sense of purpose. I glowed with admiration for the father of my children.

After the first parental injection was given, we needed to make follow-up appointments for M. One with her new diabetes doctor, one with a diabetes nurse educator, one with the social worker, and one with a dietician.

Appointments made. CHECK.

We were asked if we would like to have a visiting nurse come to our house during the first week we would be home. We decided that it might be a good idea to have a professional make sure that we were doing things correctly before we made a habit of doing them incorrectly. An appointment was made for the following Tuesday. Considering that it was Friday afternoon, this gave me hope.

"Do you think we will be home by then?" I asked the next doctor who came in.

"We won't discharge you until you feel ready," she replied, "but you guys are doing great. If things keep going the way they are, we could get you out of here as soon as tonight."

I looked at our check list. The only thing left was for another person to correctly administer injections, so that at least two people in the household could be responsible for M's diabetes management. That would be me. I wasn't afraid, I just didn't want to do it.

"Mom, it barely hurts at all!" M told me, "The needle is so tiny, I practically can't even feel it!"

Thank you, God.

M was very excited at the prospect of going home sooner rather than later. I knew this because she said, "I'm ready to go home."

I gave her the shot. I forgot to pinch, but the nurse was encouraged by my willingness to do it, and the fact that I noticed my mistake without any reminders. "You guys are awesome!" she declared.

It made me wonder who wasn't awesome. B and I decided that Children's Hospital must see all kinds of train wrecks come through here. B listed the reasons we were awesome:

1) We were still married and still liked each other.
2) We were focused on our kids.
3) We understood directions and followed them.
4) We did not curl up on the floor and cry for three days.
5) We had health insurance.
6) We expressed a willingness to do whatever it takes for M to get well.

"What do not awesome families do in situations like this?" I asked B.

"They get divorced."

"Oh. I guess you're right. That sucks."

The nurse asked if we wanted to go home after M ate her 65-70 carbs worth of dinner.

"Don't we have to wait until morning?" I asked.

"Oh, no. If you want, we can probably have you out of here by 8:00 pm."

This sounded crazy to me, to be allowed to go home at night. On "House" they always discharged patients in the daylight hours. There was always dappled sunshine on patients and their loved ones as they exited through the main door.

B said, "Well, I don't know about the rest of you, but I'd like to go home."

We all agreed. Phone calls were made, papers were signed, clothes were put on, and we walked out into the cold night to the pick-up truck that drove me to the hospital less than 48 hours ago.

We were going home to test out our new life.

Education

One way to show diabetes who's boss is to act like everything is normal. At least that's my tactic. In the spirit of carrying on with life, I sent B and C#1 to look at the college they were scheduled to see that day, while M and I hung out at the hospital. M, B, and I had already had a few lessons with the doctors and nurses there, and there were more to come. Some of them would have to wait until "the boys" returned from their adventure in suburban Boston, but there were still things on our If-you-want-to-go-home-you-need-to-do-this checklist that I could take care of on my own.

Here are some of the things we learned.

Blood Glucose would have to be tested several times a day. The Blood Glucose (bg) levels are measured in milligrams per deciliter or mg/dl. The bg levels are tested by taking a little pricky thing (a lancet), and poking a hole in the side of a finger tip. Then you put a little wick thing (test strip) to the drop of blood that comes out of the hole in your finger. The wick is attached to a meter (as seen on TV), the number you see on the screen of the meter is in mg/dl. A normal person has bg levels somewhere around 90.

Ketones are bad, unless you are following the Atkins' diet. Please bear in mind that Dr. Atkins died of a heart attack. Ketones show up in your urine and indicate that your body is basically eating itself. Your liver and kidneys are especially subject to damage if there are a lot of ketones in your system. To find out if you have ketones, you pee on a stick that looks like one of those sticks you dip in a swimming pool to check to see if the ph is right. Different colors mean different amounts of ketones. Lighter is usually better.

See? It really does look like the pool ph thingy.

Insulin is what your pancreas makes to break down sugars so that your body can use them. If your pancreas fails, then no insulin is made and your body basically pees out all of this unusable effluent. This explains the constant hunger (not getting any nutrients or sugars into the body because they can't be processed), the excessive peeing (purging unusable sugars) and lethargy (no energy is converted to keep you going). M would have to inject herself with human insulin (don't worry folks, people are not "milked" for insulin. It's biosynthetic.) several times per day.

Carbs (grams of carbohydrate) would have to be counted. I would later learn that as we got better at this, other stuff would have to be taken into account as well, but for now we just counted carbs. The amount of carbs M eats at any given time would partially determine how much insulin she would need to inject. Bg is also accounted for in determining how much insulin M would need.

Guilt is something that a lot of parents and siblings feel. Guilt that they did not figure it out sooner. Guilt that they ignored their child's complaints. Guilt that they were not paying attention to the child. Guilt about doing something wrong during the pregnancy, not breastfeeding long enough, or saying "needles, needles, needles all the time," just before the child was diagnosed.

Feet. We now had to be spazzy about M's feet. Apparently, feet are very sensitive and prone to infection when you have diabetes. M would have to wear footwear all the time from now on. Even while in a pool.

Skin is very dry when you have diabetes. M would have to get over her hatred of moisturizers and have to use them more often. Especially on her feet.

Two programs were recommended to type 1 newbies. The more rigid plan and the flexible plan. The rigid plan had a better name than that, but I can't remember it or find it in our paperwork. The more rigid plan is made up with the patient and the dietician, and requires that the child eat a proscribed number of carbs at certain hours of the day. The child takes fewer shots than with the flexible plan, but needs to take the shots at the same time every day. The flexible plan allows the child to eat the number of carbs s/he wants, but s/he must take a shot every time a food or caloric beverage is consumed. Considering M's fear of needles, we decided that rigid plan would be best for us. Plus, we were clueless. The plan would tell us what to do and when to do it.

M and I met with the dietician, (another hottie). She was very nice, like everyone at Children's, and she asked M questions about her diet.

As a mother, it is very hard not to bristle when someone asks your child about her food choices. Intellectually, I understood that it was important for M to be truthful, but part of me was hopeful that she wouldn't reveal that she ate 3 to 4 donuts every Sunday during fellowship after church.

Church didn't come up, but typical foods that M ate for breakfast, lunch, dinner, and snacks, did. M pointed out that during the past three weeks, she had been VERY hungry, and wondered if the dietician wanted to know what her eating habits were like prior to that time. The dietician told her that both pieces of information would be helpful, and before you knew it, she had put together a plan for M. The plan allowed M 25-30 carbs at breakfast, 15-20 at snack, 40-45 at lunch, 15-20 for an afternoon snack, 65-70 at dinner, and 10-15 for an after dinner snack. M got to apply her new plan in time for lunch, and chose her menu of 40-45 carbs.

Coming up with a meal plan. CHECK.

Time to fill prescriptions. I was given a list by the social worker concerned about my guilt levels and whether or not we could pay for M's medical care. She sat with me as I went over the list and asked what each item was for. This list was huge. A large stack of prescriptions were handed to me, and I took the elevator down to the pharmacy. The nice young man behind the counter told me it would be about two hours. After lunch with M, and a visit to the well-equipped recreation room on her wing, I was armed with $485.00 (AFTER insurance) of diabetes gear.

The social worker showed up. "How did it go? Did your insurance cover everything?" I looked at the receipts. "Ummm, no. They didn't cover the ketone strips."

She looked closely. "Wow, no they didn't. Give me a minute, let me see if we can get you some samples."

While she was gone, I looked at the box of ketone strips. They fit into the bg monitor. There were 20 strips in the box, and they cost $183.

Well, that seemed just a little unreasonable.

The social worker returned with a box in her hand, "Here you go," she said. See if you can get your money back from the pharmacy." She waited with me while I called.

The nice young man at the pharmacy was still nice, but advised me that most things are not permitted to be returned to a pharmacy. He took back the ketone strips, and explained that most insurance did not cover these fancy non-urine ones because people on the Atkins' diet were using them to monitor their ketones. (Damn, you Atkins!) He also let me know that when we needed the urine ones, the pharmacy or the doctor might have to call the insurance company to assure them that they are for a patient with diabetes, "even though you are buying all of this other stuff that is clearly for a diabetic." I thanked the young man, and took back my $183.

Prescriptions filled. CHECK.

The next few items on the list involved needles, needles, needles all the time. I would wait for B to come back for that. Stabbing my daughter was not something to which I was looking forward.

M and I played cards, chatted with the nice nurse about topics ranging from diabetes to  "Family Guy", and waited for Daddy to arrive.

War buddies

We all rejoiced when the nurse came in at 6:45 am and told us that M could finally eat. M was especially excited. She had been eating constantly for three weeks, so this imposed fast was a bit much for her.

M was given a menu, and  was told that she could select whatever she wanted from it. She chose bacon, for sure, but I don't remember what other foods she chose. She also got to drink water.

Her color was better. I hadn't noticed how pale she had been until she wasn't anymore. The nurse told us that M would be moved to another room before the end of the day. One that required less monitoring. This, I perceived, was good news.

While M ate breakfast, B went to call his office to tell them he would not be in. His very sensitive manager said, "So, this is two vacation days, then?" What a tool.

The head of pediatric diabetes came into the room: an attractive woman of 55 or so. After talking to M, she revealed that, like M, she is a horsey girl. She was impressed by M's attitude. I was too. Her whole response to the disease was "Oh, crap!" which pretty much sums it up. It's deadly, but manageable. I knew a couple of people with diabetes when I was a kid. They both seemed normal. Even though I was sad, I knew we could handle this.

A short time later, the doctors came for their rounds. We were invited to listen in. "Okay," I thought. "This might be interesting." The head of the department discussed M, her attitude, her bg (blood glucose) levels, and our family history, which included no Type 1 diabetes, and no Type 2 in our immediate families. She did, however, say "Mom presents strongly with Graves' disease." Which I figured I would have to ask her about later.

I had Graves' disease about a year after my son was born. It is a form of hyperthyroidism. I was hot all the time, I had no energy, and I ate like I had a tape worm, but lost weight ( hmmm... just like M had). The symptoms were similar, but what did that have to do with anything? Did I give her diabetes?

When I did ask the doctor about her statement, she explained to me that clinical trials are making links between thyroid disorders and diabetes. They are both auto-immune diseases, and families with a history of one, tend to crop up with the other on occasion. My family has a history of thyroid problems, but M is the only one in our giant Catholic family with Type 1 besides one of my father's cousin's grandkids.

M was taken off the insulin dispenser, and was told that she would have injections from here on out. Her port had done its duty, but she either needed a new one, or would have to have regular blood draws and injections. Her IV was still in place.

I looked at her. Then I did a double-take: she was plumping up. Her fingers didn't look like they belonged to ET anymore. When I pointed this out to her, M giggled. She was smiling easily again. I am sure it was more to do with the bacon than anything else, but it was a most welcome sight. I hadn't seen her smile in days. If you knew M, you would know just how tragic that was.

The move to the room was uneventful. She had to stay in a bed with IVs and stuff attached to her. Once settled in her new room, however, the quiet of the ICU was over. All kinds of people began to visit us. Counselors, Dieticians, Endocrinologists, Diabetes Nurse Educators, Regular Nurses. It was a miracle that M could get any sleep, but she did. There was a pull-out chair, that could serve as a bed for napping parents. It would have to do. I dozed while B watched some brain candy on TV. When I woke, M and B were watching cartoons.

I wandered into the hallway to get a sugar free pudding from the parent kitchen.

If you have ever been in a hospital ward with children in it, you realize that all of the adults there are walking around with the same glazed look. They are troubled. Burdened. Weary. I talked to a few in the hall, at the nurses station, and in the lounge area. I don't remember their names. There was one woman whose teen daughter had knee surgery and would be ready to go home soon. Another had a 7-year-old who was having a bone marrow transplant. A man with a very young son told me that his child had crohnes disease. I knew personally that was a nasty one. He asked me what I was in for.

"My daughter has diabetes."

"Ooh. Type 3, I hope."

Type THREE? Was there a type I didn't know about?

It turns out that there is, but I am sure the man with whom I was speaking wouldn't wish it on anyone's child.

I looked down at my name tag. It was the photo ID that allowed me access to the patient wings of the hospital. I signaled that I belonged there. In the photo, I wasn't smiling. I looked weary. Burdened. Troubled. I wondered if my face would ever look the same again. I hoped that someday my smiles would not just be the brave ones I mustered up to cheer my daughter.

"We can do this," I had told her just a few moments ago. "We are all in this together; and together we can make this work." In my heart I believed it, but the woman in the ID picture didn't seem to think so. I wasn't even sure if she could see beyond the next day.

We were all in this together. M, my family, the doctors, nutritionists, counselors, and the parents wandering the hallways. We all had to keep fighting so that life might one day be normal again.

 Back: B, C#1, dietician, counselor, grandparent Front: M, grandparent, Nurse, doctor

I worked to shake off this train of thought. "Remember what M said? 'Oh, crap!' She just has diabetes! It's manageable! It could be so much worse!" I rattled off lists in my head of what I thought of as 'worse than diabetes' as I drank from a paper cup filled with ice water. I looked at the parent/zombies in the hallway, and decided I didn't want to one of them anymore. I took action.

I went to run M's brush through my hair and prepared for the arrival of my parents and our son. As was normal for the parents I had seen in this ward, I hadn't showered since yesterday morning. I would have to fit that in later.

By 5:30 pm, M's room was filled with love. Grandparents and C#1 had arrived. As I had predicted, just seeing M and her plumped, enthusiastic, colorized face was enough to make everyone feel better. She felt great! To me, it was a miracle that she could look so much more healthy than she did less than twenty-four hours before. There was hugging, smiling, and gift-giving. There was also a delivery of fresh clothes for me and B. In my haste to make it to the hospital, it never occurred to me to pack supplies for the adults who would, necessarily, be staying over 75 miles from home.

A pleasant visit was had, and we said our good-byes promising to keep the grandparents informed of any changes. With two fewer people in the room, and fresh clothes into which he could change, B took a shower in the large bathroom accompanying our semi-private room. M and her brother just sat on the bed grinning at each other. I know I was tired, but the sight of them  expressing such relief and loving each other so openly brought the prick of tears to my eyes.

Tomorrow would prove to be busy. B and C#1 would go look at a college in the morning, and B and I would have diabetes classes in the afternoon. We were given a checklist of skills and knowledge that we would need in order to bring our patient home. It was time to start chipping away at it.

Look out diabetes. You have met your match.

Planning

After I saw my daughter, M, and my husband, B, board the ambulance, I drove home. It was 12:40 am. I was trying to be logical. Pragmatic. Calm.

I knew that M would need clothes. The staff at the hospital had made mention of a couple of days at the hospital in Boston. My older son, Child #1, would need to be apprised of the situation. I guessed that meant I would have to wake him. I would need to make plans for the dog, work, transportation for C#1 to and from school, etc.

I arrived at home, woke C#1, and told him that I would expect him to drive to school, and that I would call during the day to let him know what was going on. I told him to handle the dog situation as if it were a normal day. Then I packed M some clothes and a toothbrush and began my drive to Children's Hospital, in Boston.

I am not sure how driving 75 miles per hour can feel so slow, but let it suffice to say that this was probably the longest trip of my life (including the 27 hour trip to Florida in rainstorms with a yowling cat in the back seat). There was virtually no other car on the road. It felt like it was me, alone in the dark, with a few bright lights to keep me company. I couldn't bring myself to turn on the radio.

When I arrived, I parked the car in Children's secure parking garage, pleased to discover that the hospital was close to one of the two places to which I knew how to drive in Boston.

No minotaur is pictured. Nor is the local string store.

You see, Boston, with all its one way streets, angled roads,  and alleyways, is like a labyrinth. A labyrinth that only the sage can navigate. It lacks only a minotaur.  Unless equipped with a long string, I can only find my way to two places in Boston with ease, and those two only out of sheer repetition: Fenway Park and the Boston Museum of Science. Children's is near Fenway. I was grateful to learn that I could find my way there if I had to.

The main entrance to the hospital was closed. I had to wend my way to the one open door and a security guard. I don't remember what I said  to the man (I'm sure it was very mumbly, and something guards at Children's Hospital are trained to understand.), but I somehow made it to the Emergency Room where my daughter was sleeping. The ER there was really spectacular. The space in which M was being monitored was a closed room. Not cozy, but private. B had a cup of coffee and began to tell me how every good-looking doctor on the planet must work here. He further stated that we should encourage C#1 to go to medical school so he could meet all these hotties.

As if by command, one such hottie entered the room to tell us that we would be moving M to the Intensive Care Unit (ICU), not because she necessarily needed intensive care, but because there were no beds at the level of care she needed. Hottie explained that they would rather bump her up to a higher level of care than bump her down to a lower level of care. Hottie, looking composed and graceful at 2:45 in the morning, gave off an aura of confidence that made me think that her reasoning made absolute sense.

Before being moved, M woke up and said she was hungry. Hottie said no, she couldn't eat. M whined, but otherwise seemed in good spirits.

Shortly, we were shipped to the ICU. M was put in a cavernous room with lots of screens, wires, and IV bags. She was hooked up to some sort of insulin dispenser. The port that the nice nurse had installed at our local hospital was holding up nicely. In the ICU, there is a nurse for every two or three children. The nurse sits in a glass room monitoring each child's vitals and pokes her head in the room frequently. It was at this point that I realized we were blessed. Every person on the staff knew just how to treat children and their neurotic families. Communication was flawless. Sensitivity was demonstrated. Phlebotomists understood the fear of needles.

M, who had dozed on the way to the room, woke up to ask for food again. The nurse explained that she could not be permitted to eat until her blood sugar was better under control. She said it much nicer than this. I, however, was too dazed to take note of the exact wording.

I recommended that B take a snooze on the bench provided in the back of the room. There was a curtain and everything. It was explained to us that parents are not normally permitted to sleep in the room with the child in ICU, but since M was not contagious or susceptible to infection, they were willing to bend the rules for us. Thank God, because nothing was going separate me from my baby.

I sat next to M and thought. I thought about C#1 and the fact that he was supposed to visit a college on Friday (now tomorrow). I thought about how we would take care of the dog. I thought about how we would turn in our property assessment form, which was due (now yesterday). I thought about how to get a sub at both of my part-time teaching jobs. I thought about where we would sleep while May was getting the care she needed.

I planned and planned. In the meantime, I watched the numbers on the screens attached to my daughter change. I listened to my daughter breathe. I breathed with her, and prayed. I watched her intently. Every sound she made, every twitch of her face seemed like it should be a clue to how she was feeling. Her heart rate slowed. It seemed like it slowed too much. I tried to remain calm.

At 6:00 am, with a 'take charge' attitude, I started making phone calls. I called one school, explaining that I would likely need a sub for the remainder of the week. I cried.

I left a message at the other school saying the same thing, in a wavering voice.

I called the dog sitter and asked if she could take Levy this afternoon and indefinitely. A little less wavery.

I called our neighbor and asked if she could deliver the dog to the dog sitter and deliver our property assessment to the town. Calm, quiet, voice.

I called our friend in Stoneham and asked if C#1 and B could sleep at his house tonight, and possibly for a couple of nights. Calm, stiff-upper-lip voice.

I called C#1's school and told them what was happening and to keep an eye out for him that day. Calm, stiff-upper-lip voice.

I called mom and asked her if she and dad would drive C#1 to the hospital that night so that he could see his sister and prepare for his college visit. Calm, "things-are-looking better" voice.

Finally, I called C#1 and told him that his sister was improving, and that we were going to get him down to Boston. "We-are-going-to-be fine, really" voice.

Plans in place, I went back to the room. B and M were still sleeping. I smiled at the nurse through the glass.

I thought, "It takes a village."

In the beginning

If you are the parent of a Type 1 diabetic, this story will seem familiar to you. My daughter, M, was 11 years old. It was spring, as much as March can be spring in New England. She started feeling crummy, as kids in New England often do in the spring. She had a sore throat, was sluggish, and slept a lot. She was also cranky. Very cranky.

 My son, five years her senior, had gone through just this sort of thing in the past. It normally signaled some kind of stress for him. He merely needed rest, and he was up in a day or two. With that in mind, I gave M a couple of mental health days.

After her days of rest, she seemed better. She was eating. A lot.

We joked that she was eating like she had a tapeworm. All of her friends were starting to get thinner and taller, and she seemed to be doing the same thing. "It must be hormones," I thought. I certainly wasn't worried about it. We watched her eat and eat and eat. She never seemed to gain weight.

The Sunday after her mental health days, M went up to the front of the church to sing in the "choir." I put choir in quotes, because it is more like a rock group at the mass that we attend. It's very loud. About halfway through the mass, I saw her sit down in the chair normally reserved for a girl who had intermittent leg pain. She looked like she was going to throw up. Then M swiftly got up from the chair and passed through the door to the sacristy. For those of you who are not Catholic, the sacristy is the back of the church, behind the "stage" where the priest gets ready before mass.

At this point I was anxious. I decided to count to 100 before charging up in front of everybody and running into the sacristy to see why my daughter went in there. At 87 she emerged, with a water bottle in her hand, not looking much better, and stood for the remainder of the mass to sing.

"What was that all about?" I asked her on the way home.

"I don't know," she said. "I just felt dizzy. I feel okay, now.  It was weird."

We decided that she probably was thirsty and that she had better stay hydrated.

Don't judge me. M had always been a normal kid, health wise. I had no reason to suspect a major diagnosis was coming.

The Wednesday and Thursday after mass, she felt crummy again. I let her stay home. She was eating and staying hydrated. There was no vomiting. Just malaise, I thought.

The following weekend was Easter weekend. If you are hardcore like me, you attend the Triduum: Holy Thursday, Good Friday, Easter Vigil, and Easter Sunday. Our particular church has a large group of hard core "high holiday" Catholics in it. Both of my kids are altar servers. They both volunteered to serve during the Easter Vigil mass.

The Easter Vigil mass, for those of you who don't know, is a big, stinky deal. It usually lasts about three hours. People are baptized and confirmed into the faith that night, on top of several readings and the regular mass stuff. Also, there is a ton of music. M's job was to hold and carry around a big-ass candle, weighing about 10 pounds. Carrying a candle of ten pounds for three hours would normally not be a big deal for her - M is the strongest and most athletic member of our family - but tonight, it gave her some grief. At one point, she stumbled and nearly fell off the stage. But, you know "No harm, no foul." It just looked like a stumble until I put the pieces together later.

The Tuesday after Easter, she did not feel well again. Being a high school teacher, I asked her all the typical health and eating disorder questions.

Me: "Have you been peeing a lot?"
She: "No."
Me: "How about in the middle of the night?"
She: "Only once in a while."
(I later found out that I was asking the wrong person. Her brother's room is right next to the bathroom. After she was diagnosed, he told me that she was going three or four times a night, waking him up in the process.)

Me: "Have you been throwing up?" (I'm thinking eating disorder. She eats so much and she's so thin!)
She: "No, but I've been nauseous." (Phew! She has no idea what I am talking about!)

Mono had been going around my son's school, and my daughter had been exposed to a number of carriers. After all, we had spent time with the FIRST robotics team every weekend for 9 weeks. I decided to call her doctor and make an appointment to see if she was okay. He was available the next day after school.

When she woke up the next morning, she fell down the last four steps on the staircase. Now this was weird. She is the most graceful person we've had in our family for three generations! I was worried. She looked pale. I was glad we were going to see the doctor.

We brought her after school. My son installed himself in the waiting room while my daughter and I went in to see Doctor G. Doctor G. is a younger guy, and I love him because he never claims to have all the answers. He describes options, risks and opinions as if we are reasonable adults. He speaks to my children with respect. Before we see Doctor G, my daughter got her height and weight measured. This is the point at which I start becoming a shaky, irrational mother.

M weighed 83 pounds.

"So?" you might be thinking, "That sounds like a normal weight for an 11-year-old."

Well, maybe it is if that 11-year-old didn't weigh 103 pounds seven months ago at her last check up.

20 pounds. She had lost 20 pounds.

"Maybe we read it wrong at the last weigh-in," the nurse suggested.

"No," I said, tight-lipped, "I am pretty sure you didn't."

I wait in concerned silence for Doctor G. to arrive.

After weighing her again, and confirming that she does, indeed, weigh 83 pounds, Doctor G asked questions of M and myself. We answered the questions as best we could. Doctor G decided that we needed to run some blood tests. He wanted to test for diabetes, thyroid, and mono. We were sent to the lab immediately.

Here is where the fun begins. M is absolutely TERRIFIED of needles. This is not funny. She was fine with them when she was little, but around the age of six, she suddenly developed a fear of needles and dentists. This is not normal for me. I am a 'suck-it-up-and-deal-with-it' person. I have to work very hard to muster up any sympathy for my child in these situations. I actually brought her to therapy to help her come up with coping strategies because I am so inept at providing with the tools necessary to calm a panicked child down. They're just needles! It's temporary! Deal with it!

What a phlebotomist looks like to M.

I will spare you the details about how M kept moving her arm away from the poor woman trying to draw her blood, crying, and periodically shrieking. Let's just say it took nearly two hours to get the blood out of her. I was physically and emotionally drained, and so was M. I have no idea how the phlebotomist fared. I assume she went home to a stiff drink and regaled her seven cats with stories of my screwed up child and her inept mother.

On the ride home, M asks about each of the diseases for which she had been tested. I explain to her about hyperthyrodism, which I had after the birth of her older brother; and mono. When I began to describe diabetes, her older brother said, "Diabetes would be your hell, because it's needles, needles, needles, all the time."

M's response: "Go mono!"

After a draining afternoon (It was nearly 7:00 pm by the time we got home), we all ate a meager dinner, and M went to bed at 8:00 pm. I was exhausted. I took one look at my pile of papers to correct, and realized that I was in no fit state to properly evaluate the writing assignments my students had turned in that day. I always hand back my assignments the next day, but I just couldn't summon the energy to lift the stack out of my satchel. I decided to have a beer.

At 8:45 the phone rang. It was one of the Nurse Practitioners at the clinic. She dropped the bomb. M had diabetes. Could I please bring her in to see Dr. G first thing in the morning?

Of course I could.

I hung up the phone and told my husband, B. I cried. We sat on the couch holding each other. We began to mourn the loss of a potentially easy and wonderful life for our daughter. We agreed that it sucked, but we would deal with it.

At 9:05 the phone rang again. It was Dr. G. "I have looked more closely at M's numbers, and I need you to take her to the Emergency Room right away."

The Mama Bear in me came out.

"No! Absolutely not! She has had a rough day. She's sleeping. She needs her rest. Let her be normal for one more night. She can come in tomorrow morning as we planned."

Silence on the other end. Then, "Ursula, I know how you feel. I am a parent, too. But knowing what I know, it would be irresponsible of me to say that you can keep her at home even one more night."

His words frightened me, not just because of their content, but because he had used the same quiet, calm, voice that I use when I am very worried. I knew we had to go.

I hung up the phone and told B what was happening. I called work to arrange for a sub for the next day while he woke M and got her ready to go. I could hear him telling her, "You'd better bring a book. They usually take a long time getting you in to see the doctor..."

I woke our son and told him that we were taking M to the hospital. His face went ashen at the diagnosis. I told him we would keep him posted and see him in the morning. Then we left.

Our hospital is about 25 minutes from our home. When we arrived the waiting room at the ER was packed with people. There were roughly 40 people there. Some were in wheel chairs, some were vomiting, some were holding their heads. Some looked fine. It was Wednesday, April 15th. Were these people looking for a good excuse for not filing their taxes on time?

B dealt with the paperwork and check-in for M, while she and I found an empty seat. She placed her book on the seat next to mine and went to the bathroom. Before she had even returned, they called her name. I knew this was not a good sign. I know what triage is, and I know that M was just escorted in before 40 some-odd people.

She was brought to a bed and asked to lie down. They tested her blood glucose. 635 mg/dl. She also had these things called ketones, which I had never heard of.

I only knew enough to know that was bad. It would take a few days before I realized how bad it was. I have since heard about people bringing in their kids to find bg levels of 900 or more. I am astounded at how resilient the human body can be.

I have to say that the ER doctor and the nurses were absolutely excellent with M. One nurse, completely sympathetic to M's fear of needles inserted a port so that blood could be drawn from it, and all shots could be administered into the same place without her feeling it. The doctor called me "Mom."

"Mom?" she said, gesturing me out into the hallway.

"Yes?"

"We have her blood glucose down to 450, which puts us in a position to be able to transport her."

"Why do we need to transport her?"

"Our facility is not well-equipped to handle children with diabetes. We would like to send her to DHMC."

(Using my quiet, calm voice) "Will this be by car? Or by ambulance?"

"By ambulance"

"Okay."

This is the point at which I realize I must call my mother. She needs to know so that she can be prepared to assist me with whatever plans I need to make for my son. Plus she would be extraordinarily pissed off if I didn't call her.

As I picked up the phone, the doctor showed up again. "Mom?"

I entered the hallway, saying, "Doc, I think we are beyond the possibility of you surprising me. Just tell me what it is."

"There are no beds at DHMC. We are going to have to send her Children's in Boston."

(Calm, quiet voice)"By ambulance?"

"Well, we are having trouble locating an ambulance at this time. If we can't find one within 20 minutes, we are going to send her by helicopter."

"Oh. Okay. Keep me posted."

I called my mom. She could tell, not just because I was using my quiet, calm voice, but also because I was calling close to midnight, that I had something important to tell her. I vaguely remember her saying "How did this happen?"I told her I would keep her posted and call her in the morning.

In a few minutes, the ambulance was arranged. Two men I had never seen before arrived to take my daughter away, and my husband called 'shotgun' on the ambulance. That left me to go home, pack clothes, and tell my son that we were going to be gone for the next few days.

Our lives would be changed forever.