Slow Down, Santa!!

Christmas eve morning. I was out the door at 6 a.m. to pick up Daniel's prescriptions before we go on our merry ride up north. Also to pick up a couple of last minute groceries. The CVS & the grocery store were quite empty. Don't know how the malls look this time of the morning.

There was one guy at CVS who was saying hi to his friends who worked there. Must have been in his early 20's. His friends said, "You're up early!" And he said, "Man, I've got loads of shopping to do..." Ugh.

I have one batch of cookies to make (yes Kathryn, the Christmas Crack for late night Scrabble game munchies!!) and a couple of things to wrap. I hope this year I don't forget where I hid the gifts. Like last year. Quite embarrassing. My kids will never let me live it down.

Merry Holidays to all, and Happy New Year.

Poetry in Our House

My child can be so poetic. The original verse started, "I call my girlfriend 'grapefruit'..."

I have no idea why he is using such a silly voice! Oh the things we do for fun in our house! :-)

Don't Worry, Be Happy!

I got a cute little Mickey Mouse cell phone holder, and it came with instructions. You just gotta wonder who gets the job of writing these instructions! Anyway, my favorite part is the last line. It's like some cool granola-crunchy-good-vibrations person was working in the Phonepocke factory, writing instructions in various languages, and decided to add his or her own take on how to live life... with the cell phone holder.

Serenity now!

Focus

Last night I participated in a focus group discussion for parents of children with diabetes. I met three other moms of diabetic kids there. One had 3 kids, two of whom, both girls (14 and 10 yrs. old), had diabetes. She had been dealing with the disease for almost 10 years. Another mom had a preteen son that was diagnosed 2 years ago, and she started a nonprofit organization to raise money for the ADA. The third mom’s son was just diagnosed a couple of months ago; however, her son is not taking insulin at this point. He is on a very strict diet. That didn’t sound like type 1 to me, but the term pre-diabetic was tossed around, so it could be that he will be starting on insulin soon.

We were all from different areas around town, had different backgrounds, and had differing stories of our intro to diabetes. And you know what? We could have talked all night. Diabetes is an instant ice breaker. I’ve always been the type of person who, when going into a room full of people I didn’t know, would not be very comfortable. But put me in a room with other moms of diabetics, and it’s hard to shut me up.

We all signed a form saying that we wouldn’t discuss what we talked about in the focus group. I did tell Daniel this morning, however, that afterwards the moms talked about how hard it can be to get their teenage kids to focus in on their diabetes care. Daniel surprised me by saying that his celiac bugs him more than the diabetes. He wishes he could just eat the things that he likes. But the diabetes is just, well, there. He manages it. It doesn’t really affect him. (This after he had the nasty grumpies because he was low this morning).

I said, “It doesn’t affect you? What about the high & low swings & your mood? What about the fact that there’s no cure for this disease (yet). What about dealing with the long term effects of diabetes?”

Daniel says that he’s doing everything he has to do to keep his blood sugar under control, which will allow him to stay healthy. Diabetes is really more annoying than anything else.

So I’m feeling a little crazy mixed up inside today. On the one hand, I want Daniel to be deadly serious about diabetes. Yes, he is doing everything he remembers to do so he can maintain good blood sugar levels, but honestly, if I didn’t remind him to test two hours after meals, or regularly on weekends, he would forget. He would miss his highs, which he doesn’t feel, and eventually they would affect him. I want him to consider D to be more than just an annoyance.

Yet I want Daniel to just be a kid. Not to be defined by diabetes. Not to have this constant timer & carb counter clicking in his head.

In the meantime, I guess he will be a little bit serious and a little bit annoyed. He is mostly in charge of his care, but I do all the meal planning & medicine ordering. I talk to the insurance company and discuss Daniel’s future with the endocrinologist. At some point Daniel will take over more and more from me, and as an adult will be fully in charge of his care.

Adult shoulders are built to carry more cares than teen shoulders. For now and the next however many years I will help Daniel as best I can with reminders, meals, carb counting, etc. etc. etc. When his shoulders are large enough and his spirit is willing, I’ll transfer what needs to be transferred. But not everything. Moms have the right to carry cares for their children no matter how old they get.

Shhhh....

The house is completely quiet. The children are asleep, or at least 3/4 of the way there. The husband is working on the basement computer with his headphones on. The dryer stopped a little while ago. There is a faint hum from my laptop's fan.

Just an hour ago noises were ricocheting through the house like a ping pong ball in a tile bathroom. Nora doing scales during her guitar lesson. Dominic splashing karate chops in the tub. Kachink kachunk kachink kachunk of buttons knocking against the side of the dryer. Daniel galumphing up the stairs, down the stairs. I clanged pots and pans as I worked to clean the kitchen's clutter.

As I stood & stretched my back, Nora's teacher asked her to play a new song: Amazing Grace. In addition to going over the notes, he explained the song's connection with human rights. I loved that, and knew that it would give Nora a way to feel the song on a different level than just playing the notes on the page in front of her.

She picked her way through the music, and the house seemed to respond to its simple call. It was a gentle piece of sweet magic in an otherwise busy, raucous day.

Then Dominic was ready to get out of the tub, Daniel asked for computer time, and the cogs of all the household gears started to once again grind against each other. Until now. A laptop fan. Quietly clicking keys. The closing of the day.

Holidaze

I think my body is trying to tell me something. Sneezes, aches, scratchy throat -- I held them all at bay for about 3 days with echinacea and zicam and airborne. Plenty of chai and grapefruit halves, and most of all -- washing hands. Yet, the bug got to me, knocked me out, and sent me this message: REST.

Rest? This weekend had the most plans yet, with a neighborhood cookie exchange on Saturday morning, a Womens' Group luncheon, and then time to finish up toffee/cookie making. Sunday morning church (with my youngest bringing his Christmas snakes to the tree as part of the processional... that's a story for another time) followed by a party in his classroom for which I needed to make something, followed by an afternoon party given by friends and an evening party at the yoga studio.

I made it to the cookie exchange and the luncheon, after which I had to go to bed. Nyquil, Dayquil. I made it to church, camera in one hand, tissues in the other, only for Dominic's class activity & party. Note to self -- get antibacterial wipes for the camera.

Does December have to be so stressful?

When I was in high school, I hung out at my friend Jeanne's house. Jeanne's mom made the most delicious toffee at Christmas time. She had it in little bowls around the house, and filled small tins of the rich, special treat for her relatives. She was the designated toffee maker, and everyone in her family looked forward to their special package.

When I was a young adult, Jeanne's mom gave me the recipe. That's when I bought my first candy thermometer. I started giving toffee as gifts to teachers & friends. I made some for every member of the family. I experimented with the recipe, making it with macadamias & white chocolate, or cashews & dark chocolate.

One year we moved to a new house, where I had a gas stove instead of electric. Disastrous things happened with the toffee; the butter split apart into oil & solids, the toffee just didn't turn out right. I called Jeanne's mom to ask if she had any experience with cooking the toffee on a gas stove. She said, "No!" and went on to tell me that she was no longer the official toffee maker. She passed that torch to a younger family member and was glad to be rid of it, thank you very much. It's a lot of work.

Well, after much experimentation and a number of ruined batches, I figured out how to make the toffee over a flame. But I am having trouble getting into toffee making this year. Daniel's diagnosis got me thinking about how many times I might have given out toffee to people who, for whatever reason, just shouldn't have it. I'm not just talking about diabetes here, because it is possible to guestimate the amount of carbs & bolus for it. But for whatever reason, diet, allergies, pulled fillings... perhaps it is not such a wonderful gift of love.

I have only made one batch so far this year. I was too sick & tired to even contemplate toffee making in the time I had scheduled for it yesterday. Still under the weather today. So here's my decision: I will make some more toffee -- enough for the people I know will and can enjoy it, but not so much that they will say, "Ugh, what will I do with all this candy?" I'm not passing the torch, just turning down the flame a bit.

One thing that really made me feel happy yesterday when I was in such a physical funk was this wonderful sussy from Beth. Thank you Beth, for the excellent magnets that now adorn my refrigerator, and for the other thing which will be shown later, after it gets opened on the 25th!

A Quick Note

I wonder sometimes how a week can go by and I don't have 15 minutes to sit at my computer and think about the day, or to check in on OC friends & dip into their lives for a moment. These quiet times, brief though they may be, sustain me.

And yet how can I write? In the time it took to type the above paragraph, I was interrupted twice (once by daughter, once by oven beep). In the time it took to send an email to an old friend a little while ago, I was interrupted 10 times. I counted.

There has been so much to write about this week! And I will get to it all soon. A friend had breast cancer surgery. Daniel had his endocrinologist appointment. Dominic got his yellow belt. I have had middle of the night thoughts about baking for the holidays & how to juggle that with diabetes/celiac. All this and more is simmering under the surface.

Yoga class this week was a fabulous, holiday-season-stress-busting restoratives class. Writing this blog is another stress-busting exercise. I think that whether you are dealing with diabetes, celiac, cancer, MS, autism, ANYTHING, you come to the blank page, the empty screen, and fill it with words because it is a form of healing. It may be the only thing you can do. In this first year of dealing with Daniel's diagnoses, I still grieve the loss of my healthy child, while celebrating the courage, grace, and maturity that he displays every day. I have to deconstruct some of the plans and dreams and schemes that I had in my head for him -- the same magical bubble that every parent builds around their child -- and reshape it to include all the new concepts & situations and what-ifs that we carry around in our somewhat heavier mental backpack.

All this is going on during the intensely scheduled and party-rich season between Thanksgiving weekend & winter break. I know it is busy for my OC friends, too. So -- if you are out there-- I apologize for not dropping a comment on your blog. I will soon. Just as I hope to hear from you, when you have time.

Meanwhile, I have to pack up the biscotti & clean the kitchen.

First Real Snow

The first real snow of the season makes me feel like a kid again. There's something magical about the whirls of white, the frosted outline of bare branches.

I scraped up as much as I could of the 1 inch layer that was on the ground this morning for Dominic to make snowballs. We had about 20 minutes to play before the school bus came. More magic: the speed at which your child can eat breakfast when he wants to go out in the snow vs. the speed at which he eats breakfast on a normal school day.

I drove to work carefully.
The magic of the morning faded as I worked my way into traffic.

I think the change in weather came by a bit earlier than expected, and many of the streets were not clear yet. On the way I saw this truck flipped over; we all had to slow down as the police helped the tow truck driver maneuver into place.

The focus on diabetes365 this week is "maintenance." All I could think of this morning was maintaining a safe speed. In traffic, and in dealing with a chronic disease, this message is apropos. With diabetes there are unexpected turns in the road. There are days of smooth sailing, and days when you crash. No matter what, you can't take your eyes off the road or your hands off the wheel when steering through life with this disease, because it never lets up, it never takes a break, it never allows you to pull to the side of the road and sleep.

Roll, baby, roll.

More than 20 Questions

I can't believe how long it takes to do this! I finally got around to answering the questions that have been bouncing around. My kids keep interrupting me. What are you doing? What are you writing? Why are you answering those?

Why indeed!!

1. What is your idea of perfect happiness?
I have two answers to this question. One moment of perfect happiness is when I am able to let go of desire and be simply happy with who I am and what I have.

There is also a moment of perfect happiness every day, in the moments before sleep, when I am cocooned with my husband under the comforter.

2. What is your greatest fear?
Loss of, or something bad happening to those that I love.

3. Which living person do you most admire?
All living people, like Daniel, like so many of you out in the DOC, who live with and fight against chronic illness every day.

4. What is the trait you most deplore in yourself?
I could use some more discipline. But deplore is a hard word. I don’t deplore my lack of discipline, I just picture it as a work in progress.

5. What is the trait you most deplore in others?
Again with the deplore! Dishonesty.

6. What do you consider the most overrated virtue?
Virtues are usually pretty good because they are, after all, virtues. I would be happy with a two-week break from industriousness, though.

7. On what occasion do you lie?
I am nice to people who call me and ask if I can do a survey. I say I’m helping my child with homework.

8. What do you dislike most about your appearance?
I’ve always wanted long, wavy hair. Life just doesn’t work that way.

9. What is your greatest regret?
I don’t regret too much. I think everything we have done that could cause us regret can be used as a “teachable moment” (gag, gag). I regret I didn’t have the resources available to visit my grandparents more often towards the end of their lives.

10. What or who is the greatest love of your life?
My husband and children.

11. Which talent would you most like to have?
I can plonk out songs on the piano. But I’d love to have that innate connection between fingers & keys that true pianists have.

12. What is your current state of mind?
Tired. Also amused because going on in the background right now is my daughter’s guitar lesson. It’s fun to listen to. I’m humming “When the Saints Go Marching In.”

13. If you could change one thing about yourself, what would it be?
I would be a little more aggressive.

14. What do you consider your greatest achievement?
Other than producing 3 lovely & interesting children, surviving day to day since Daniel’s diagnosis on May 8 has been quite an achievement.

15. If you were to die and come back as a person or thing, what do you think it would be?
A person. Not a thing.

16. What is your most treasured possession?
Oh, this is not fair! I’m trying so hard not to be attached to material possessions! However… I am quite attached to letters from my grandparents & old pictures & books.

17. What do you regard as the lowest depth of misery?
Loss of hope.

18. Where would you like to live?
This changes day to day. Hawaii. Umbria. Interlachen.

19. What is your most marked characteristic?
My grad school friends used to call me “she who speaks her mind.”

20. Who are your favorite writers?
Oh gawwwd… too many to count. Are we talking poetry? Novels? Non fiction? Plays?

21. Who is your favorite hero of fiction?
Again… there are so many. The answer changes with how my life changes.

22. Who are your heroes in real life?
People who follow their heart. People who do the right thing. People who live with diabetes.

23. What is it that you most dislike?
Brussels sprouts. Okay, okay… I really hate making mistakes.

24. What is your motto?
(The guitar lesson has moved to “Red River Valley. Feel free to sing along).

Lord, let me be an instrument of your peace. Where there is hatred, let me sow love. It goes on from there. That’s more of a prayer than a motto.

25. Favorite Journey?
There’s this journey called life that’s my favorite journey. But the trip we took to Hawaii for my brother & sister in law’s wedding in 2000 was phenomenal. I also went on a girl’s weekend away to Cape May one April. Amazing what a few days with good friends can do to renew your soul.

26. What do you value most in your friends?
The unconditional nature of their friendship. There’s also something to be said for doing the hard work of staying in touch. We are all busy. We move all over the world. It takes effort to stay in contact with people who are important to you. I am saddened when some former friends become former friends simply by choosing not to make an effort.

27. Which words or phrases do you most overuse?

Are you ready for tomorrow? Did you brush your teeth? Is your room clean? Finish your dinner.

28. Which historical figure do you most identify with?
I don’t know that I identify specifically with one or another. There’s lots that I’d love to invite over for dinner, though.

29. What is your greatest extravagance?
Books.

30. If you could change one thing about your family, what would it be?
I would rid it of disease.

31. What is your favorite occupation?
Writer. Artist. Mom.

32. What is the quality you most like in a woman?
Being open minded & friendly. No hidden agendas.

33. What is the quality you most like in a man?

Being open minded & friendly. No hidden agendas.

34. How would you like to die?
Of old age in my sleep at the same time as my husband.

35. If you could chose what to come back as, what would it be?

A more evolved human.

Turkey Pot Pie

Today we went to a Holiday Craft Day at our UU church. The kids made candles, hammered tin tubes to put around the candles, bags of dried bean soup, pine cones rolled in crisco & bird seed, and chocolates. They decorated the gingerbread church (see picture). We sang carols & Hanukkah songs, we had a picnic lunch, and a great time. When we got home, we got the holiday decorations out of the attic.

Later, I used the last of the Thanksgiving turkey in a pot pie. I didn't put a bottom crust in because I was trying to cut down on the carbs. I used a gluten free recipe, and counted all the carbs. I had more turkey than the recipe called for and wanted to use it up, so I added more veggies & broth.

I counted up the carbs for the flour, the cream, and the topping. It was a little soupy, so I ended up scooping out some of the sauce before putting the topping on. What the heck does that do to the carbs I counted out?

There wasn't enough topping to cover two dishes, so I made a little more. The dishes were not of equal size. I had to estimate what percentage went into which dish.

Have I mentioned that I was an English major, not a math major?

I thought I had it all figured out correctly. But looking at Daniel's evening number, I don't think that is the case.

It's so frustrating, trying to make this all work. Trying to get the numbers right, trying not to hurt my child. Did I do it wrong? Is it the fact that he is growing? Is the insulin getting old? WTF??? I try to keep everything under control and I JUST CAN'T.

We are not even a year into this disease, and I know we're still on a learning curve. Our holiday traditions have to change, to fit to our new situation. Yes, I'm going to figure out how to make gluten free cookies so Daniel won't be left out of the decorating and the nibbling. No, he won't have a lot of cookies because of the diabetes. Yes, I'll write down every carb in the recipe so I know exactly what is going into his mouth.

I want to think about presents and traveling for the holiday and our blessings, but tonight all I can think about are NUMBERS. Every day our we have a conversation about numbers. How can something that is so invisible to the majority of people take up 99 percent of our house?