How much does an insulin pump cost?

This is one of the great mysteries of life.

It's up there with "How much does a Craftmatic Adjustable Bed cost?" For those of you not of a certain age, the Craftmatic Adjustable Bed would be advertised on television, with "discounts of up to $500" without letting you know what the original price was. Listeners were encouraged to call a phone number on the screen to arrange for a representative to come visit your home to discuss your options, with no obligation to you. Ummm... sounds like predators working over the elderly, doesn't it?

Well, I can't help but feel that way about insulin pumps.

When I check websites for pump information, I am greeted with helpful tidbits like , "trade in your old pump and earn a $300 discount."

Hmmm. If they can offer $300 for an old pump, these things must be pretty pricey, right?

Right.

I asked one of my students, who has been on the pump for years, and recommends it. He told me that WITH insurance, his pump cost about $7,000.

$7,000?!

I have just finished paying off M's braces, to the tune of $7,500. I have a child in college, which is costing me $1,600 per month. We can barley afford to drive to work at this rate!

I figured, this kid, he's really nice, but not necessarily the most on top of it. He must be mistaken. So I keep looking. Yahoo answers gives me a range of zero dollars to $8,000. Diabetes blood sugar solutions tells me that in 2008, it probably cost about $6,500. Everyone points out that in addition to the pump, one must pay for supplies. These supplies cost as much as the supplies for using needles, so all things being equal, your only additional cost is the pump, which costs about the same as a decent motorcycle.

With the economy as a convenient excuse, my husband's company is offering less and less coverage in their insurance packages. Even as we pay for the most thorough coverage they offer, I can only assume that Durable Medical Devices will fall under the category of items no longer covered or 20% covered, still leaving me with about $5,600 to come up with.

Long story short, I will need to talk to the social worker at the hospital to see if having a pump is a viable choice for my daughter, which is what all of these online resources tell me to do, anyway.

I had hoped to have a better idea of what I could be in for; I didn't want to talk to anyone official unless I was pretty sure that I could tell my daughter that she had a choice. At this point, I can't say for sure that she has one.

I loved one comment that was made about the insulin pump: "It cost $8,000, but it is worth it!" I am sure that's true.

If you have $8,000.

Snow Storm

Have you ever been in a supermarket the day before a snowstorm? I mean one that's been predicted and broadcast all over town, of course.  Well, if you have, then you know that the supermarket just before a predicted blizzard is naturally crowded. People want their egg, milk, bread, and Cheetos to be available to them, even if they can't leave the house.

Managing diabetes (or any chronic illness, I imagine) adds a new dimension to these preparations. One must not only be aware of how much butter is in the refrigerator, but also how much insulin.

In fact, it's best to plan out your trips to the pharmacy at least a week before you need any of your supplies, because if it snows, and you only have two days worth of insulin, you might have a problem.

Being that we live in New England, where snowplows are common, well-oiled machines, we almost never are trapped at home for more that one day. When we lived in Maryland, however, a legitimate snow storm would paralyze transportation for days. Sometimes over a week. Walking to the store to pick up eggs would yield nothing, as the shelves would have been cleaned out.

I imagine the same might be true of insulin.

So, this winter, with all of the whacky storms in all of their whacky locations, do your due diligence and plan ahead! Keep that insulin stocked! Keep those test strips nearby! And always always have a back up plan.

Then afterward, you can enjoy the snow!

Reading, learning, sharing

I have been reading up on Type 1 and other forms of diabetes since I became the parent of a diabetic child. Reading various types of advice and information keeps my eyes open to possibilities (and impossibilities) while our family manages this disease.

It has been much like reading those parenting magazines that tell you about how to get your child to sleep through the night, or how to stop them from whining on a long car ride. As I gather opinions and information, I can choose to follow my instincts (like ignoring advice about getting my child to sleep through the night), or take creative ideas and make them own (giving little activities to the kids every 100 miles does make the ride go faster).

When my children were young, I was often chided for allowing my daughter to go without a sweater on days that were below 75 degrees, or for not bothering to put socks on her feet. People did not know that I made these decisions because she would cry and sweat if she was overdressed, or because socks were a moot point because she would only pull them off, chew them, and throw them on the floor to be lost forever. As a result, I have learned not to assume much about the choices other parents were making when I noticed how their children were dressed, buckled or entertained while in the supermarket.

Being the parent of a diabetic has made me notice and recognize a whole new category of children: those with diabetes. I tend to observe the actions of parents of diabetic children as part of my information gathering. As with parents of non-diabetic children, I have likewise learned to keep my mouth shut. After all, I have been the recipient of some pretty weird comments - my favorite being from a coworker that told me that a shot of raw milk every day would cure my daughter's diabetes.

Here is a video that I swiped from one of my favorite diabetes-related blogs, SixUntilMe, by an excellent writer named Kerri Marrone Sparling. She had, in turn, swiped the video from somewhere else (Death of a Pancreas) . Rarely does Kerri write about parenting a diabetic, as she is a diabetic who shares her own personal experiences, so this video was a special gem for me.

I love Kerri's writing. It gives me an opportunity to peek into M's future. I don't like everything I see, but it gives me hope that M can overcome this "unfortunate obstacle", and enjoy her life as Kerri seems to.

I shared this video with M's classmates of sixth through eighth graders, her principal, and her teacher today. As they are all part of M's daily experience as a diabetic, they truly appreciated the misconceptions presented in this video. Roaring laughter from everyone in the room brought people from other parts of the building to see what was going on.

The fact that we were all able to share this experience only brought to light how happy I am that M has such a supportive and well-educated group in her daily life. Hopefully, she will have minimal experiences like the one presented here.

If you know people who have had to face the kinds of questions and statements posed in this video, please share it.

Enjoy.

Good Grades

I am learning more about diabetic culture as I grow accustomed to parenting a child with Type 1 diabetes.

I personally know many kids with Type 1, not because I am part of some fabulous parent network, but because I teach high school. I have read that the typical child has a 1 in 500 ( 0.2%) chance of getting diabetes before he is an adult.

I  personally know 3 out of the 935 students (0.3%) in my high school that have Type 1. I am sure that I don't know every child with diabetes that attends my school. I only know the ones who have been in my class or the clubs that I advise. Even by my limited knowledge, I can tell that the four towns that send children to our school are "above average."

Regardless, just like kids with Type 1 might feel all alone in the world, so can parents of a child with Type 1 - especially if there is no history of Type 1 in the family. No history of Type 1 means that we are the appointed family pioneers of understanding this disease, and that when your aunt says, "Well, surely one little slice of fudge won't do much to her sugars. It's tiny." No one is there who understands what you are talking about when you tell them that "tiny" still needs a bolus  of insulin.

Before M was diagnosed, I knew of two people that had Type 1. They were two kids I knew growing up. I haven't seen them since high school. Now I wonder how they are doing. I wonder how it was back in the day, before all of the options that are available today.

Because of my sense of being somewhat alone in the daily battles with this disease, I will periodically chat with the aforementioned students and their parents about their experiences for comparison.

And then it rears its ugly head: the insecure mother. I mean me. I am sure others partake as well, but they are not obvious about it.

I can't say that I am overt. The parent of a healthy child might ask, "How is Sandra doing in Latin class?" so that she can gauge her own child's success level in Latin. I ask about diabetic numbers. M manages her diabetes well, so like the mother of a good student, I want to gauge exactly how well she is doing.

To my credit, the other parent usually asks me about M's A1Cs before I get around to asking about their child's.

The conversation usually starts with me saying something like, "I heard 'Frank' talking on the phone with someone saying that his bg was over 300. Does that happen a lot?"

Usually the other parent tells me that it is atypical, and that 'Frank' is excellent at managing his diabetes, whereupon I am asked about M's A1C count.

I contentedly boast that her A1Cs have been 6.4 or 6.5 for the last three quarters. Then I hear about the other child, whose numbers are around 7.0. Then I can contentedly sigh, thinking that M's numbers are better than someone's, and therefore she is okay.

Well, maybe a B+...

It's like being reassured that your child will likely be in the top 20% of her graduating class, and will likely get into a good college, except that this "good college" is a healthy adulthood.

This interaction is not nearly as gratifying with people who are unfamiliar with diabetes. My friends and family often ask me how M is managing her diabetes. These people love her, and they care about our family, but they don't understand the numbers I throw out at them.

I know where they are coming from. When May was in the hospital upon her diagnosis, I was told her bg level was 635 mg/dl. I knew that this number was bad, because of the way it was said to me. I knew that normal bg levels were in the neighborhood of 100, but still, how bad did it get? Was 600 REALLY AWFUL, or just merely "not good"? It took experience with the disease to really find out.

It's kind of like telling people in the US that it's 30 degrees centigrade. In the US, 30 degrees (Fahrenheit) is pretty chilly. People know that 30 in centigrade means something different, so they might ask, "That's hot, right?" It would take experiencing a 30 degree day for them to better understand what it meant.

So yeah, while I expect my daughter to get good grades, I rarely discuss them with other people. Instead I brag about her diabetes management; and in the process, I try to educate my loved ones about what all of these numbers mean. In the meantime, I can always grab parents of diabetic strangers off the street to compare notes, and hopefully to learn M's odds of getting into the good college of healthy adulthood.

One step at a time!

Heretofore known as "the incident"

M is a responsible young woman. Never is this better demonstrated than when she maintains her own health independently. We determined after a suitable time, that unless she was vomiting, she could stay home under her own care when she felt unwell.

I was working half days during this moment in time. Things were financially strained, so I had pieced together a number of part time teaching and tutoring gigs to get us hovering near the black. When M was home sick, it was my habit to call her a few times throughout the day to make sure that she was drinking liquids, hadn't been kidnapped by ninjas, and was generally not in a diabetic coma.

On the day of what we refer to as "the incident", I made my usual morning call.

No answer.

No need to panic. Her bg levels have always been in the acceptable range. She's probably asleep and didn't hear the phone.

Job #1 complete. Try to call again.

No answer. Hm. I will try again a few times in a row to see if that will wake her up.

No answer. Maybe there's a need to panic after all.

I called Job # 2. I can't make it. I have a personal emergency.

I walk out to my car with my cell phone glued to my ear. I vow that I will not be one of those dangerous drivers who is on it during the entire drive home.

I start the car. Shall I call the neighbors?

I call one set. No answer.

I pull onto the main road. I call the neighbors with a key to the house. No answer.

At a stop light I call my third trustworthy set. No answer.

I am now in the car driving northward to home. Do I call an ambulance? She is probably fine. She has never gone into any kind of diabetic shock, coma, or any serious reaction. Her bg was 141 when I left this morning. It's very unlikley that she suddenly had such a dramatic low that she would pass out.

Calling the EMS  if she is fine might only draw attention to the fact that I am a horrible mother, leaving my poor diabetic child home alone to fend for herself. On the other hand, not calling them might be too much of a gamble. I call home again twice. I force myself to wait five minutes and call again.

I know she's upstairs with her door closed. The phone is downstairs. Would she hear it even if she were awake?

I call again. Knots in my stomach, I begin to formulate a plan.

Glucagon is in her basket on top of the fridge. Cell phone is in hand.

After a 25 minute drive, I am putting my key in the lock of the house. I see the dog's tail wagging through the window. I open the door and leap for the basket where the glucagon is stored, simultaneously shouting M's name. As I start running toward the stairs, I hear her bedroom door open.

"What?"

I freeze at the bottom of the stairs and gaze at my upright daughter. I have the red, plastic container of glucagon in one hand, and my flipped open cell phone in the other. She knows that something is wrong.

I walk up the stairs to her, trembling and trying to control my voice, which is thick with tears.

"I was so worried. I called and called, and you didn't answer the phone."

M grasps what this means to me. Even though she is not yet a mother herself, she is empathetic enough to understand the panic that I felt.

As she hugs me, we both begin to cry. "I am so sorry, Mom. I am so sorry. I didn't hear the phone."

"I know," I say, "I was just so worried. I am just so glad you're okay."

We repeat this exchange a few times as we both begin to calm down. I eventually ask her how she's feeling. In light of the fact that she has been sleeping soundly all morning, I am not surprised to hear her say that she is feeling a lot better than she did when I left.

Was I overreacting?

I tested this story out on a friend of mine whose children are so healthy that she doesn't even bring them to the doctor for check-ups. I wanted to test to see if I was being an overprotective crazy mother. Before I could even ask her about it, she said, "That would have freaked me out." I didn't know whether to feel better or worse for the knowledge.

It's a balance. Obviously I have felt fine about leaving M home as long as she monitors herself responsibly and we have neighbors who work out of the home. Maybe I shouldn't feel good about that. Maybe I am not a careful enough mother. Maybe I don't overreact enough.

It was a fluke that all of my stay-at-home neighbors were out at the same time. But it served as a wake-up call for my back up system.

M is amazingly responsible about her health, and is decidedly able to stay home for a few hours by herself, but we decided that if she stays home in the future, the cordless phone will stay next to her at all times.

Compromise between overreacting and underreacting. The world's longest apron string.

Prayers of thanks

I love my life. I feel very blessed and I appreciate everything that I have. When I pray, I always make sure to thank God for everything he has given me and my family. I have always thanked him for our home, our jobs, the means to pay our numerous bills and our good health.

This last one, however,  has had me stumped for the last year or so.

My daughter is technically in "good" health. She routinely has an A1C of 6.5 or lower. She is active, beautiful, energetic and creative.

Now I am not trying to gyp God out of his due. M is alive and enjoying her life. But is she actually in "good" health? She has to test her blood glucose 6 times per day. She has to give herself an injection every time she eats. And most notably, she can DIE from this disease and its complications, even if she does everything that she is supposed to.

So when I pray my thanks, I include good health, but I wince internally at even mentioning it. I know that the Almighty knows all about my doubts, so I feel somewhat hypocritical every time I include it.

If only I could add an asterisk, much like the one earned by Barry Bonds when his home run record is mentioned. Yes, he actually HIT the home runs. And M FEELS healthy. The record registers the appearance and the achievement, but with the caveat that the circumstances were not, should we say, normal.

So I guess my prayers would look something like this:

Lord,
Thank you for everything that you have given me and my family. Thank you for blessing us with a place to live, a job that I love, a wonderful husband and children, and the means to pay for all of our needs. Thank you for our continued good health*, and the continued good health of those we love. Thank you for blessing us with supportive friends and family, and please continue to bless us with their presence. I appreciate all of these gifts God, and offer you my sincerest thanks.
 Amen.

Thank you for our good health*

Alivabetes

A student is selling silicone bracelets in the hallway at the school where I teach. You know, the kinds like the yellow "Livestrong" bracelets for cancer. I distinctly heard him say "diabetes camp". I asked the young man who was going to diabetes camp. He said that his sister and his cousin were both trying to raise money to go.

Which camp? Camp Carefree. This is where M went to camp last year. It was a great experience for her to spend two weeks being "normal" with other kids with diabetes.

I examined the bracelet. It was white and green and had the word "Alivabetes".  I bought one. I read the card that came with it. "When 8 year old Jocelyn was diagnosed with diabetes, she asked if she was going to die. The doctor told her no, so she decided that they should call it alivabetes"

Cool.

To order one or more of these bracelets to support Jocelyn and other kids going to Camp Carefree, you can go to http://funsantamail.com/Alivabetes.html

First big shot

While it has been over a year since we left the hospital armed with new information and knowledge regarding diabetes and how to manage it, I still remember preparing M to give herself a shot.

I remember thinking that when she went off to college, she had better have a roommate with diabetes, too. Who else could give her a shot in the butt?

When a person is diagnosed with insulin-dependent diabetes, there are factors to consider that may not have come up before.

1) You cannot give your insulin shots in the same place all of the time, no matter how inconvenient all other locations might be for you. It is necessary to "rotate" where you give insulin shots. If you give yourself shots in the same place repeatedly, you are likely to develop callouses, which in turn make the absorption of insulin more difficult.

2) The best places to give shots are in locations with fat on them: the back of the arm, the belly, the butt, the thigh, the back of the leg.... Of course, if you have recently been diagnosed with type one diabetes, there is no fat on your body anywhere.

Inject yourself where it's yellow. Good luck!

3) It is hard to give yourself a shot in the butt, the back of the arm, or the back of the leg. There are tricks, but you have to learn them at diabetes camp. At least it seems that way.

4) Giving yourself a shot for the first time is scary.

5) The needles for insulin are thin and short. You want the insulin to get into your fat layer for better absorption. To make sure that you get into the fat layer, you pinch a nice meaty part of your body, inject the insulin, release the pinch, then remove the needle.

6) Other shots do not require the pinch.

So we leave the hospital with the parental skills necessary for M to survive in our home. But M has not yet injected herself. Just as we were, she was nervous about possibly hurting herself while injecting the insulin.

Our goal is for her to inject herself at least once per day so that she may do it herself at school.

I encourage her. Cajole her. Point out that she keeps telling me that it doesn't hurt. Intellectually, we are on the same page. She KNOWS it doesn't hurt. It just freaks her out to think about doing it to herself.

This is understandable considering that she was unable to look at needles until she had to. Now she was fully invested in her new life of "needles, needles, needles, all the time". Life had changed, and it had only been a week. On the other hand, M would be returning to school very shortly. Time was running out.

Several meals in a row, M sat at the dinner table, with her needle poised, readying herself to inject insulin into her belly. She would pull the needle away to brace herself for jabbing it in there quickly. She would begin to "shoot" the needle, and stop mere centimeters away from the quivering flesh. She repeated this action, growing more frustrated each time.

Sometimes she would dissolve into tears. M knew she could do it, but she was scared. Every time she cried, a piece of me would cry with her. The part of me she could see, however,  would say, "Don't worry. When you're ready, you'll do it. It will be fine."

But I don't think she believed it.

Meals passed. Days passed.

I needed to go to the dump. I left the house for a few hours. When I returned, M gave me the big news: she had injected herself! She was so proud. So happy. So relieved.

"How did you do it?" I asked.

And the answer was, as it has been many times before, "Daddy made me do it."

I always wonder how Daddy does these things. What a miracle worker my beloved life partner is.

Relieved that I might no longer have to suffer watching my daughter bear the anxiety of self injection, I again said a prayer of thanks to the mating gods. Thank you, mating gods. Thank you.

Holidays

When M was diagnosed, it was shortly after Easter. She was eleven years old. She had had a rough few weeks. Easter came along, and she could wear a skinny little dress like she never could before. She looked waifish. She hunted for treasures that the Easter Bunny left at her grandparents' house, and had a great time.

The day after Easter, she felt terrible. She had been feeling terrible off and on for many days, but this time I assumed that it was because she had eaten too much candy. She hadn't. That ear-less chocolate bunny stayed on her nightstand for days.

Well, it turned out that she felt lousy because she had type one diabetes.

Our first diabetic Halloween was last year. When we went to the Diabetes Nurse Educator, she gave us an orange sheet with a list of "fun sized" candy bars and their carb values. She advised M not to have too many pieces at a time, but pretty much gave us free reign over when and where she could eat these.

Before diabetes, I never really thought about why the FDA made companies write "Not labeled for individual retail sale" on their wrappers. Now it makes perfect sense. How can anyone choose what to eat if they don't know what is in it? Now I know that each piece of Halloween candy has about 7-10 carbs in it.

That's a lot. I mean, M sometimes has a whole meal that totals 30 carbs. That's just three of those candy bars. Yuck.

Carbs seem to be pretty central to American holiday celebrations. I never really thought about that before. Mashed potatoes. Candy. Nuts. Stuffing. Cookies. Pie. Candies yams. All carbs.

All of us think of the holidays as the time when we gain weight, drink too much, and generally make unhealthy choices. For a normal person it means indigestion, gas, and bathroom discomforts. For a diabetic it can mean another step toward blindness, foot problems, or renal failure. Fun.

As a mother of a young diabetic, it is interesting to balance the two realities:

1) She must have fun

2) She must balance her food desires with her food needs.

I can only hope that the lessons that she learns from her parents and diabetes team will help her make better choices during her holidays for years to come.

Or maybe I will just need to eat all of her Halloween candy for the rest of my life. I would be willing to take the indigestion bullet for her. What mother wouldn't do that for her child?

Urp.

Cake

Cake makes me mad.

Why? Because it frustrates M. She always loved cake. But when her new lifetime pal diabetes came along we discovered, practically right away, that cake gave her problems.

I have other diabetic friends and acquaintances who have shared with me their own freaky food sensitivities. I know people who can eat cake with no problem; no significant change to their blood glucose levels. But they can't eat carrots. Or maybe potatoes. Cherries. Bread. Peanut butter. For some weird reason, not all diabetics react to the same foods the same way.

I have tried to rationalize the cake problem. I have thought about the glycemic index, the inability of the FDA to properly estimate the amount of carbs in bakery items and various other random thoughts. But I think that it's "just one of those things".

I found myself in a conversation with a parent of a non-diabetic sufferer of celiac disease. She was talking about how challenging it is for her child to attend social functions filled with gluten. I could sympathize. I explained M's cake problem. Despite her knowledge about gluten and foods in general, this piece of information flummoxed my new friend.

New Friend: How could carbs from cake be any different than carbs from anything else?

Me: I don't know.

New Friend: Did you try lots of different kinds of cakes?

Me: Oh, yes. She can eat ice cream cake.

New Friend: But why can't she eat cake? That's weird.

Me: I don't know. Yes it is.

Sure, technically M could eat cake. She did. Several times. Each time, we gave her an irrationally large dose of insulin to cover the intake of carbohydrates. Each time, her blood glucose readings were through the roof.

M decided that giving up cake was easier than feeling the swoon of high blood sugar afterwards.

We have adapted. Ice cream cake it is.

I am sorry it is weird. Too bad.

Stupid cake.

Sometimes the cake makers are stupid, too!

Dinner... Impossible?

After M was diagnosed with type 1 diabetes, a lot of myths about the disease were put to rest. One of the things I had remembered from having type one classmates in grade school was that they were not allowed to eat sweets, unless they were going into shock, in which case we were to shove a sugar cube into their mouths. As a non-diabetic, none of this made sense to me. But that's a story for a different day.

One of the first things I was told in the hospital was that M need not change her diet, but must adjust her insulin intake accordingly. At first, she was on the rigid plan, so I learned right away that this was a lie. She normally ate whenever she wanted and whatever she wanted, now she had to eat a certain number of carbs at certain times of day so that her insulin would do its job properly.

About a month after diagnosis, we came upon our first real culinary challenge: a Greek dinner at school. Each year the upper grades in M's school hosts a family dinner in the style of a nation that they have studied during the year. It's a lovely affair in which the students prepare the menu, the food, set up dinner tables with flowers from the campus, act as hosts, and provide entertainment. We look forward to it every year.

M was diagnosed on April 15th. The culminating events for school (arts night, family night, talent show) were right on the heels of this diagnosis. Things were a little hectic. In education May is a nutty month. I taught at one school, and my children each attended different schools. That added up to about nine evenings of May which were dedicated to school events. As an exhausted mother of a Type 1 daughter, I wasn't sure I would survive the month. This didn't matter to M. She was so looking forward to this night. She and her class had been preparing for it for weeks.

Of course, being a kid, M wanted to eat what everyone else was going to eat that night. I being her mother, thought that there needn't be a fuss. Of course she should be able to participate as normally as possible, even if we were still new at this diabetes management thing. Then I saw the menu. The meal included various breads, a Greek salad, a soup, and the killer. Baklava. Do you know how many carbs are in a sliver of baklava? Scads. Tons. Bushels.

Our mission, as we chose to accept it, deal with it, and endure it, was to keep her meal under 75 carbs. I nearly cried with frustration as we tried to come up with portion sizes that would allow M to taste everything on the menu. Of course, being a mom, I had to keep the "we can do it!" face on. Not just because M, Bill and I all needed to maintain a positive attitude, but also because the other parents were watching.

Don't get me wrong. They were only watching because they were concerned for us, and curious, too. The school has a grand total of 80 kids from ages 3 to 14. M was the first diabetic student they had had in a long time. Possibly ever. And everyone knew it.

Nearly everyone had finished their meals when our family finally completed all of the necessary math. Before the festivities could resume, we needed to feed our daughter very carefully measured portions. Everyone pretended not to notice that they were all waiting for the Hubers to eat.
            
Tick. Tick. Tick.
            
The good news is that M did get to eat everything, and we proved again that we could endure. This soul-sucking disease was not going to keep this family from living a normal life. The better news was that I would likely not have a reason to calculate for baklava for years to come.

It will be too soon before I have to calculate for you again, sir.

The even better news was that I had a chance to reconnect with the parents from M's school, many of whom I had not seen since before M's diagnosis. They expressed concern for us, joy that we were maintaining, and hope that M would continue to lead a positive and fruitful life. In a morbid way it was great to tell and retell M's diagnosis story. Each time I did, it hurt a little less. And in a way, I felt like I was making inroads for these families to better understand diabetes when they encounter it again.
           
And they will.

Sleepy

No matter how old your child is, once they are diagnosed with Type 1, it is like going back in time. At first, it is vitally important that you check your child's blood glucose in the middle of the night to see if she needs a bolus. Part of the reason this action is recommended is that it will give you and your medical professional more information about your child's high and low cycles. Another reason is that your child, coming off of very high blood sugars for weeks, may not immediately recognize the symptoms of a high or a low. I think that part of it, however, is also that we need to get up and see our child in the middle of the night.

Remember when your child first slept through the night? I mean the very first time. Most parents I know woke up in the middle of the night that night, waiting for their child to awaken. After an hour or two, most crept into the child's room and tested to see if she was breathing.

Visiting your child in the middle of the night for a few weeks is a lot like that. Really I felt as if I were just checking to see if she was breathing.

It got the point where I would stumble into the room, flip on the light, and ask her for a finger. She would prop herself up on her elbow and inspect her fingers: Which one hadn't been used recently? Then she would lazily proffer the chosen digit. I would then swab it, jab it with the lancet, and squeeze a drop of blood onto the test strip. The beep would let me know that we had procured an adequate amount of my daughters blood, and then we would wait.

Those five seconds seemed to last a long time. We would record the number in her tracking book, and make a decision about whether any action needed to be taken. Does she need raisins, or humalog? Or can she merely go back to sleep?

Needless to say, these nightly excursions were never things I could pull of in a half-sleeping state. I had to be fully conscious and fully awake. M, however, did sleep through a couple, and more than once after I had finally fallen asleep after testing her, she entered my room to reawaken me and say, "Mom, we forgot to test me tonight!"

These days we only test her in the middle of the night if something pretty wacky is going on during the day. But those six weeks or so, although exhausting, acquainted me with my daughters new rhythms and needs. I hated diabetes for making me wake my daughter and myself out of a sound sleep, but I learned something, too.

I learned that I was going to be sleepy for a good long while. But at least I knew that my daughter was breathing.

Diabetic awareness

I teach high school.

As such, I have an opportunity to observe young people with diabetes. I watch how they manage it. Or not.

I am very aware of snippets on conversation that allow me to know if a student has diabetes, even before I receive their 504 plans.

These kids are patient with me. I ask them nosy questions about their doctors, where they get treatment, pump or no pump, what kinds of insulin they use, how long they've had the disease, etc.

I usually open the conversation with, "I am going to ask you some nosy questions. You don't have to answer any of them. I won't be offended if you don't want to talk with me about it, but my daughter had type 1 diabetes."

Answers vary, but no student has ever refused my request to talk.

Kids are awesome.

Yes, I really love high school kids. Some people explain to me that I love them because I am insane. I am okay with this kind of insanity. This kind of insanity and I made our peace long ago. Besides, it's pretty pleasant to be insane as long as you enjoy your job.

All of my students know that M is diabetic. Since I am almost never sick myself, I always know when I will be out of school: for doctor appointments, special school trips, etc. So I tell my kids that I will be out ahead of time and threaten them with bodily harm if they give the substitute a hard time.

Because all of my students know about M, kids are willing to talk to me about how diabetes has affected their lives, whether they have it themselves or not. Because my daughter has diabetes, I hear things that other teachers don't. Because my daughter has diabetes, I notice things that other teachers don't.

And in this way, I am blessed. I feel like I can be part of several diabetes success stories.

If you are not familiar with diabetes, what would these things mean to you?

An overheard phone call: "Well, it was over 300."

An overheard conversation with the nurse: "Do you fell better now?" as she watches a student consume a bag of carrots.

"It's okay, I was low this morning"

An ipod-looking thing with a wire leading to the waist instead of the ears.

Before my daughter had diabetes, I didn't really know why diabetics should be allowed to eat in class, or what it could mean if they didn't feel well. As a parent of a diabetic, I have a heightened awareness of any sign of diabetes: in restaurants, playgrounds, and, of course, classrooms.

Will I ever be able to live life the same way again? Will I ever NOT notice fanny packs, pumps, or people counting carbs?

I doubt it.

But if my daughter can't have an ordinary life, then I guess I can stick it out with her.

Lather, rinse, repeat

5:45 am - M wakes up
6:00 am - She comes downstairs and decides what to eat.
6:05 am - She calculates how many carbs are in the food she eats.
6:08 am- She checks her bg levels with her monitor
6:10 am - She records the results of her bg levels and her carb amounts onto a sheet of paper
6:11 am - She calculates the amount of insulin she needs to cover the carbs ( carbs divided by 10) and the amount of insulin she needs to correct her bg levels (bg minus target level divided by 21)
6:14 am - She adds the two amounts of insulin - to cover carbs and to correct bg levels -  together. The result is how much insulin she will need to take this time before she eats.
6:15 am - She screws a needle onto her humalog pen and dials the amount needed to the nearest 0.5 units
6:16 am - She gives herself an injection, either in the belly, the back of the arm, or the leg.
6:17 am - She eats. Then, if I am lucky, she cleans up the debris from the procedure (bloody test strip and wrapper, needle cover, needle wrapper, needle...)
6:25 She brushes her teeth.
6:30 We leave for school.

Repeat at 9:30 am, 12:00 pm, 6:00 pm, and any other time she eats.

At 8:00 pm she gets a syringe full of Lantus.

9:30 pm - She goes to bed. Usually.

                            M's best friend. Well, her best electronic friend anyhow.

The pump versus the pancreas

M has returned from diabetes camp this year to tell me that she would like to wear a pump. An insulin pump is one of those somewhat misunderstood inventions that people ask me about.

"Can't she just get a pump?"

Sure, she can. But it doesn't do what you think it does. It is NOT and artificial pancreas.

In a normal human being, this thing called the pancreas does this really important job. It's hard for most of the American public to know this, because nobody outside of the medical world seems to know what it does. On a recent TV show, I heard the line, "So what does a pancreas do besides get cancer?"

Good question. In very simple terms, it breaks down sugar into small enough bits that your body can actually use them. When your pancreas dies (yes, dies, not "stops functioning properly", because that's just sugar coating it - pardon the pun), it can no longer do the very important job of making a large portion of your food useful. That is why diabetics pee so much. They are peeing out their food. Then they are thirsty because they are peeing so much. It is also why they get skinny really fast. They are peeing out all of their food.

In other words they are starving to death, even though they are eating. Without the necessary nutrients, the body starts to eat itself, starting with very important organs, like the kidneys.

                     The pancreas: The ugly little thing you didn't even know was there.

So, anyhow, the pancreas is very smart. It senses how much sugar you have ingested, and releases the appropriate amount of insulin to break the food into usable bits. Not too much, not too little. It monitors the blood glucose level, and releases the appropriate amount of insulin. See how I wrote that twice? It's important.

A pump releases insulin. That's what it does. It does not monitor blood glucose. It needs to be told what a person's bg levels are, and mechanically dispenses what it is told to dispense. My concern: in theory, a person's blood sugar could be low, and the pump will continue to pump insulin into the body. Now the low bg become even lower and possibly life threatening.

Now, don't get me wrong. I am grateful that my daughter was born in a time where:

1) She won't automatically die from diabetes.

2) Insulin is easily measured and dispensed.

3) Bg levels can be tested pretty accurately by blood sticks rather than by using urine, which tells you what your bg WAS a few hours ago.

4) I don't have to boil syringes.

5) Needles are pretty darn tiny.

6) She has options to treat her diabetes. Including the pump.

I just have a lot of questions. And I don't think that's wrong.

Lying to the nurse

When I first told our Diabetes Nurse Educator that my daughter did not have a nurse at her school, she was quite concerned.

"What will you do in case of an emergency? Who will be trained to monitor your daughter? Who will check her math before she administers her doses of insulin?"

Just to keep things simple I lied. Well, not really. I told her the truth, but I knew I would not be using the solutions I proposed.

There was a public school within walking distance of M's school. There they had a nurse. Our state requires that children in private schools, who have special needs, have access to the services they require. The services are provided by the school district in which the private school resides.

In other words, if Sally's school is in Concord, and Sally has a reading disability, she may obtain services through the Concord school district.

We can discuss whether this law is fair later.

As such, M had legal access to the services provided by the public school that was within walking distance of the private school she attends.

This seemed to satisfy the nurse.

But I was lying. I was never going to have the nurse from the school across the field come serve my daughter, check her math, or anything else. She is too busy, and the whole idea was just complicated.

Here is the truth. The school where I work is exactly one mile from my daughter's school. It is on the same side of the same street! I could RUN there faster than it would take a nurse from another school to disentangle herself from her normal caseload to attend to my daughter.

Another truth is that the people who run my daughter's school are NOT useless idiots. They are quite reasonable and intelligent. In fact, they have been some of the strongest partners in allowing my daughter to manage her diabetes at school.  M's current endocrinologist wonders if going to a school with a nurse might change just how well M manages her care, and not for the better.

M's teacher, a man in his late 50s, had already developed an interest in diabetes. He is what some medical professionals call a "borderline" diabetic. He began researching diabetes, and to monitor his own bg levels. For the first two months of M's diagnosis, her teacher would sit with M, and the two of them would test their blood sugar together. Then together, they would calculate how much insulin she would need to cover her meal.

After those two months, summer came. But by the time summer was over and M entered her first full school year as a diabetic, she was a pro. In addition, she knew she could ask her teacher for help, and he knew what he was talking about.

As far as training, I trained the staff myself. They were attentive, and truly part of the plan to keep M healthy. I never had the hospital fill out the special forms needed to make sure that M's needs were accommodated. No 504 plan, no written instructions directly from the doctor.  I did, however, have to face the slight paling of the group as I described how to administer glucagon.

It took me a year to tell the truth to the nurse. After M had a couple of A1Cs of 6.4 to 7.0, I thought it might be safe to share our secret with her.

She took it well, but she said that she wanted me to continue to hold the nurse up the street in reserve.

I lied to her and said I would.

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."