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.