Monday, December 24, 2007
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.
Friday, December 21, 2007
Thursday, December 20, 2007
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.
Wednesday, December 19, 2007
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
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.
Monday, December 17, 2007
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.
Sunday, December 16, 2007
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!
Thursday, December 13, 2007
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.
Wednesday, December 5, 2007
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.
Monday, December 3, 2007
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.
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?
24. What is your motto?
(The guitar lesson has moved to “
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
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?
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.
Saturday, December 1, 2007
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?
Friday, November 30, 2007
I have one of Beth's buttons on my purse. Turns out, it's a great conversation starter.
"You have diabetes?"
"No, my son."
"Oh. Me too."
This was in my youngest child's karate class. I talked with another mom. Previously, our conversations had been brief. Where our children go to school. Look at how their kicks are improving. Wow, it's cold today.
Diabetes brings conversations to a new level. They are instantly personal. You have diabetes in your life? I know you. I get you. I understand.
So far, this button has only started conversations with others who have diabetes. But I see other people looking.
Come. Ask me about my button. I'm happy to talk.
Thursday, November 29, 2007
Children are the most precious gifts we get in life, and they are also the creatures that test us to our most extreme limits. This unique dichotomy, the stretch between extreme love and intense frustration helps us grow in intelligence and spirituality in ways we never believed possible. One of the milestones of this journey of learning, the pain and joy, happens during the teenage years as these little individuals, so attached and dependent, morph into hairy, voice-altered, oddly-styled humans who stand on their own two legs, which may be clothed in hiking boots or sequined shoes depending on the model you happen to have.
There are moments of maturity that catch me by surprise. There was the time I came home from the grocery store and Daniel got up from the table to help bring in the bags from the car. Unprompted.
There was the time that Nora knew I was exhausted from getting up in the middle of the night to check Daniel's blood sugar, and she cleaned the kitchen while I snoozed.
There was that moment that Daniel held a syringe to his abdomen for the first time, and his dad and I said, "just do it quickly, don't think about it" and he said, "wait... I'm almost ready." A few minutes later, he was ready. And he never looked back.
Nora is 85% tomboy; she wears t-shirts and sweat pants and plays football as well as the guys, but the t-shirts may have rainbows on them and they will probably match the pants. She cuts her hair short, but keeps sparkly studs in her pierced ears. She prefers comfortable shoes to the pointy toed ones that her friends wear, but it takes her HOURS to shop for something perfect. And all this leads up to...
I bought her an outfit to wear to the theater because her class was going on a field trip and they had to dress appropriately. At first Nora railed against the fact that she couldn't wear jeans because they were, in her opinion, NOT casual. They looked nice. But I found a swirly-patterned red/black/white top with some black velveteen pants. Colors bright and bold, just like her personality. She tried them on and my tomboy disappeared. A young woman, the person she is changing into, stepped in front of me and took my breath away.
I experienced this weird, magical moment where I could see her crawling on the floor, banging on tupperware, and at the same time, waving goodbye in a new suit on her way to work. My eyes teared up and my heart hiccuped. Two of my three children are accelerating their process of becoming.
I really do try to let go, to let it happen. To let time flow over me easily. Sometimes I get in the car and turn on the radio, and the Talking Heads are followed by the Go Gos and I feel like I'm that person I was in the 80's on my way to a party, even though the vehicle carrying me is a minivan. Then I come back to myself, and laugh as I realize that my kids are in the back and singing with me. They know all the words, just as I did, just as I taught them.
I do everything I can, as a parent, to give my children the tools they need to live their own lives. At the same time I can hardly bear to let them go.
Monday, November 26, 2007
I do try, so very much, to walk the middle path. It is a yoga thing for me. Not too high, not too low. Just like Daniel's blood sugar numbers. I try to stay in an emotional range. It keeps me healthy.
Today my boss found out she has breast cancer. Today my youngest son's teacher told me she is pregnant with her first child. Today Daniel's blood sugar numbers were running way high. Today my daughter played beautiful music in her guitar lesson. Today I got a "sussy" (thank you Beth for the sussy and thank you Amylia for teaching me about sussies! Sussys?) in the mail -- buttons from Beth (which will proudly be displayed in tomorrow's Diabetes365 pictures).
I take the middle path. I try to avoid the land mines.
Sunday, November 25, 2007
I took Daniel to a new friend's house today for a play date. Can you really call them play dates when the boys are 14? Okay, a get together. A video game fest. Anyway, this was a new friend that Daniel met at school this year. I came in to say hi and let them know that Daniel was diabetic, so if they saw him doing a blood sugar test not to be alarmed.
The dad said, "Oh, we know, (wife) is diabetic, too." I said, "Okay, then you know all about it." He said, "Yes. So he should have no sugar."
I paused. Then said, "Well, he's type 1, so that doesn't matter as much, but no, he can't have sugar because he didn't bring any insulin to bolus." And we discussed the fact that he could snack, if he wanted, on carb-free things like salad veggies, and that he could have a diet soda.
I guess the mom must be type 2 if they immediately thought that Daniel shouldn't have sugar. I wonder if people who are diagnosed with type 2 get the same intense diabetes education you get when diagnosed with type 1 about the differences between the two.
There is such misunderstanding about type 1 diabetes. This person was not the first to assume that Daniel could not have sugar. Daniel has had more sugar since diagnosis to treat his bg lows than he ever used to have!
Sometimes I think that type 1 and type 2 diabetes should have completely different names.
Friday, November 23, 2007
Then the wind blew.
We have a couple of large willow oak trees in the back yard. They are beautiful, and they are a pain. The leaves are about four inches long, about the width of your finger, and pointy on each end. Not your typical oak leaf! The acorns are tiny, perhaps the size of the tip of your thumb. The leaves and acorns defy raking. They cling to the lawn with their sharp tips when you try to blow them away. It's better to let them sit on the lawn until spring... which is one of the reasons the grass doesn't grow so well in my back yard.
In mid afternoon a weather front whistled through, bringing a scattering of rain and a mighty explosion of wind. The leaves sailed off the oak tree and headed for my neighbors yard (GO! GO! FLY!!!). The sky was awesome, with dark purple gray clouds as a backdrop for the bright colors of autumn trees, which were lit up by the long rays of sun reaching out from the far side of the weather front.
Nora and Dominic saw the leaves flying. Suddenly there was nothing more wonderful, no game more delicious, no video more interesting than the great wide world. They ran around the front yard trying to catch leaves, stuff them in their pockets, and compare treasures. They opened their arms to embrace the wind, as if they had wings and were ready to soar into the sky.
A change in weather can affect your mental and physical body. Some feel rain coming in their bones, or the onset of winter in the way their skin changes. A warm, sunny day seems to make everyone happy. And the burst of energy brought forth by the wind and leaves invited my children to shriek, run, and leap with joy.
The wind rolled up the street in gusts that eventually settled into a gentle sigh. The neighborhood trees, which up until yesterday had been holding tight to their leaves, as if they were waiting for our last warm day, decided to release them and send them softly on the breeze. What better way to spend the afternoon than to relax in the still-warm grass, watching the swirling patterns above, mingling your energy with the earth.
Wednesday, November 21, 2007
I rushed home from work (got out early) and started straight away on cooking. Got the cranberry-orange-red wine sauce done, along with the gravy base first thing. Then started in on the pies. I couldn't find gluten free graham crackers, so I searched around the internet until I found a recipe for a pie crust that is made with almond meal, cocoa powder, a little sugar & butter. Yum! That's the base for the chocolate cream pie.
Next, I crushed up GF ginger snaps for the pumpkin pie crust. Baked the pumpkin pie, and the edges got a little crispy so I just picked them off & made the evidence disappear into the garbage disposal. Bye!
Melted the two kinds of chocolate for the cream pie, made the custard base, mixed it all together & put it in the refrigerator. That will get dumped into the crust tomorrow.
Had to stop to eat dinner. Eat? Ugh! But the kids were hungry. I usually order a pizza the night before Thanksgiving, and then give thanks that there's someone out there willing to bring food to my door. There was a nice Amy's GF pizza in the freezer for Daniel as well, so he was happy.
Now the stuffing is cooking. It's a new recipe. I've made my hubby's family's bread stuffing for so many years. When I was growing up I never liked bread stuffing, but I've kind of gotten used to it. Now because of Daniel's celiac, we can't make that recipe.
I don't trust the GF breads to be good enough to hold up to stuffing. They crumble like crazy when you try to make a sandwich out of them, and would probably just turn to mush in stuffing. When I was younger I always made a wild rice stuffing, and my parents let me go wild, experimenting with ingredients. They NEVER stuffed the turkey. They swore it would poison us all. I went back to my childhood experimentations (along with a little recipe research) and made a brown basmati/wild rice stuffing. It has onions, celery, chestnuts, garlic, sage, apricots, slivered almonds, and fresh parsley. I'm cooking it in a combo of chicken stock w/a bit of orange juice mixed in. It smells heavenly. And because my husband LOVES the stuffing inside the turkey, that's where it will go. You know what? My parents will eat it anyway!
It's so hard to figure out all the carbs in all the foods that will be on the Thanksgiving table. With a little help from Calorie King, Daniel will figure out an amount to bolus, and hopefully it will keep him in range. He said he's really going to miss the soft dinner rolls that we always serve fresh from the oven. I told him I could prepare some from the GF "Chebe" mix that he likes, but he'd have to think about it. How many carbs does he want to bolus for? Bread AND potatoes AND sweet potatoes AND stuffing AND pie? Daniel thought about it for a half second and said, "NO ROLLS."
We have a day-after Thanksgiving tradition in our house. I host a get together with friends and neighbors and we combine leftovers and have a second night feast. It's very low key, with just one rule: NO STRESS. Children run madly through the house, wine and conversation flow cheerfully in the grown-up dining room. Since everything has already been prepared and is all up for grabs, there's no set time to eat. We hang out, have fun, and clear out a few of the tupperware containers.
I hope everyone in the d OC has a great Thanksgiving. I'll check in with you guys this weekend!
Tuesday, November 20, 2007
Here are the rules:
2. Post these rules on your blog.
5. Let each person know they've been tagged by leaving a comment on their blog.
Seven deadly sins about me, eh? Well...
1. I have a tendency to sing show tunes at random moments. Along with this, I have raised my kids to be musical theater geeks like me.
"Dress up a monkey in Armani,
He may seem precocious and cute.
Despite all that primpin',
You still got a chimp in a suit." Oops, there I go again. (Dirty Rotten Scoundrels)
2. I can stand on my head for 3 minutes. It took 20 years of yoga to get that far. Yoga is a lifetime of work for me, and an eternity of bliss. It keeps me going when the rest of the world is a whirlwind. I use the "ohm" symbol on my blog to remind me to be in THIS moment. NOW.
3. I married my husband about 4 1/2 months after our first date. Probably would have married him the day after that date. We both knew. When he reached over and held my hand in the movie theater, I felt a jolt, and that was it, he was the one. Never mind that I had just broken off a 3 year relationship with someone else and declared that I wasn't ready for anything "serious." We talked about it months later... he felt the same jolt. Weird, huh? But then again... my mom & dad met at a dinner party in Turkey. They got married only months later in Israel. My dad's mom & dad met at the beginning of summer in Paris, and married at the end of summer in Paris (but they had to bribe an official to shorten the time for the banns because grandpa had to get back to the States to college). So I guess it runs in the family.
4. I was a poetry major in grad school. One of my first & best poetry teachers told me that if you want to be a poet, you have to figure out what you are going to do in your life to support being a poet (like brain surgery, engineering, office managing...). She was a lawyer. Oh, and when I was in elementary school someone read one of my poems over the intercom during morning announcements. I almost fainted.
S T R E T C H this is hard
5. Some people lose socks. Some lose umbrellas. I keep losing spoons. They disappear from my house. Where the hell do all the spoons go? Why? The dishwasher doesn't eat them, I checked.
6. I'm an optimist. I always have been. My optimism has been sorely tested this year with Daniel's diagnoses. I tend to get out all my emotions when I write, so I may not seem optimistic in my words. But I am in person. Not just about Daniel, but for the whole world. Really.
7. My knees bend backwards. Much more than normal. I do not condone hyperextension by any means, and I try to avoid it myself. But it does look pretty freaky!!
Wow! I did it! Now I have to tag people. Hmmm. Can I tag total strangers? Places I've lurked?
I'm want to tag Jillian, but found out that she's been tagged. So has Shannon. So has Penny. And Beth. And Bernard. And so many of the other D365ers! But...
I'm tagging Sara, DeathByBokeh, M, whom I don't know, but found her on the OC, Jules, and since I have to go make the cranberry sauce now, I can't do any more!!!!
Sunday, November 18, 2007
Hubby raced off to church & I stayed at home with the sleeping siblings, waiting for periodic updates & scanning the diabetes sites online. They went to the hospital because Daniel's bg kept dropping. At the ER it was down to 55, even after Daniel kept sipping apple juice, so they gave him a glucose drip to bring him back up. At 2:30 a.m. when he finally got home, he was 165, but this morning at 10:30 woke up at 53.
He's better now. Able to eat & keep things down. The ER doc thought the combination of pickles & twizzlers could easily induce vomiting... but it was probably just a 24 hour bug.
Little illnesses are magnified with diabetes. I'm glad Daniel's home and feeling better.
Saturday, November 17, 2007
Hubby called me from the lock in. Daniel had been at 70 fifteen minutes before, and tested again and was at 61. He was trying to sip some apple juice, but was nauseous. Hubby decided to take him to the ER so someone could take a look at him.
I'm waiting for the phone to ring.
Friday, November 16, 2007
Daniel started high school this year, and entered a school where he knew practically no one. He has made some friends over the past couple of months, and went to hang out with one of them after school. He called to let me know he got there with no problems and said that it would have been fine for him to stay over for dinner but he doesn't have his bolus pen with him.
When he's home, he uses the home pen. When he goes to school, he uses the school pen. We hadn't planned for an in between time.
As a teenager I would go to friends' houses after school, have a snack, do some homework, watch some TV. A phone call to mom to say I'd be home after dinner. Great times, great memories. I'd like a cure for diabetes to be found quickly, so my kid can enjoy just being a kid.
Thursday, November 15, 2007
Daniel has been high today. He corrected at lunch, and came down in the afternoon, but popped right back up after dinner. He is fighting a cold.
I look at his logbook, and see how the numbers ebb and flow. We've been through a few low days, and now he is peaking again. I stand aside, watch the patterns, and try not to take his peaks and valleys personally. If anyone has figured out how to use mind control to manage your child's bg numbers, please let me know. Perhaps hypnotism. "Your blood sugar is stabilizing...
S T A B I L I Z E...
S T A B I L I Z E..."
Wednesday, November 14, 2007
Sunday at church a couple of my co-teachers asked me if I wanted to train with them to do the
Sometimes I feel that, as a human being, I have an unending wellspring of love that will support me through whatever life throws my way. And some days I feel that I can’t give away even one more sliver of myself. It all depends on how much sleep I’ve gotten that week! But I remain torn. I’d love to support my friends with breast cancer. I’d like to train for a two-day walk through the winter months with that goal in mind. But I’m also less than a year into this battle with diabetes, and I don’t know what the next few months will bring. What would you do?
It is world diabetes day. Is that answer enough?
Sunday, November 11, 2007
Last year and the year before Daniel belonged to a youth group at our church. The kids took lots of excellent field trips, including outdoor education retreats, movie nights, packing food for shelters, whitewater rafting, and caving. Daniel's first time caving was with this group. Whereas I have a fear of climbing down under millions of pounds of earth into the dark, he found that he just loved wiggling through small muddy underground passages. He came home smelling like the bowels of the earth (there's a good reason for that term) and striped with mud, sweat, and joy. The team leader (an experienced caver) used Daniel's smaller frame to their advantage, sending him ahead into various passages. If Daniel couldn't fit through, nobody could.
His high school youth group has not taken the caving field trip. But today we saw the Jr. High group leader, who invited Daniel to come along on next year's Jr. High trip in an camp counselor type role. It's a two-day trip, and the overnight is spent in very rustic conditions. You're in shelter, and off the ground, but that's about as good as it gets. Daniel said that as dirty as they were, no one wanted to use the shower facilities. Ugh.
I explained to the group leader that we would have to do a lot of planning to make it possible for Daniel to go next year. He'd have to go into the caves carrying a small extra pack with bg monitor, quick sugar, insulin, etc. He'd have to have some way to clean off a finger in order to test his blood sugar. Because of his celiac, he couldn't rely on fast food stops along the way; we'd have to carry all his food with him.
I'd have to go with him.
Truly, the thought of crawling through caves pushes a severe claustrophobia button in me. However, the thought of Daniel going through caves without someone qualified to help him if he should have a diabetic catastrophe trumps that fear. I hope I have it in me. As always, he is my champion. He faces his disease everyday with equanimity and grace. I want to go underground for him with the same bearing.
Saturday, November 10, 2007
DH and Daniel had success with desk and wall shelving. Across the store from their location, I repeated, quite urgently, to Nora & Dominic, "Watch out for the baby! Don't sit on the toddler!" while in the children's area. I also believe that when an 11 year old child has to contort herself like a circus performer to fit into one of covered, rotating egg chairs, that she is too large for the chair. That particular child had an argument with this belief of mine.
We were able to find gluten free food for Daniel (steak & potato) in the cafeteria, and although he woke up low this morning, he's been okay the rest of today. Yay! I don't have diabetes, but shopping in large stores wreaks havoc on my blood sugar. Daniel seems to have no such problem. Maybe because we were shopping for him!
We finally made it down to the "marketplace" area. I wandered the aisles (pulling little fingers off of the knives, scissors, cheese graters, tall stacks of china that were all reachable by my curious 6-year-old) and there were plenty of bowls to be seen... but no sugar bowl.
As I type, DH is hammering above. The desk is put together and the shelves will be up soon. Yay!
Monday, November 5, 2007
Diabetes is not usually what you think about when your kid can't see the blackboard. I am nearsighted, my daughter is nearsighted, so Daniel could easily end up the same way. He had an eye appointment, got some glasses, and the problem seemed to be solved.
Diabetes was not on my radar when Daniel kept telling me he was thirsty. He's an active kid! The weather was warm and we were walking through the neighborhood, shooting hoops, riding bikes! The week before he was diagnosed I took the kids out for pizza, and Daniel asked for a soda. I don't keep soda at home, but I sometimes let the kids get them when we go out for a special occasion. He claimed he was starving, guzzled an enormous soda, and then barely finished one piece of pizza. I figured he had too much soda in his belly to eat.
The week before Daniel was diagnosed, I called my sister in law and told her that he must be going through a growth spurt because he looked so skinny.
The week before Daniel was diagnosed he said he had to get up four times every night to go to the bathroom. I told him, "that's because you keep drinking so much! Don't drink so much before bedtime!"
I learned a lot during 3 days at Children's National Medical Center. I've learned more in the six months since. Every time Daniel tests his bg in public and someone stares, I use it as a teachable moment.
Insulin is not a cure for diabetes. There is no cure for diabetes. However, with all of us working together to raise awareness, raise funds, protect & renew legislation providing money for diabetes research, educating teachers, caregivers, family members, and the rest of the world, we can make things better.
Diabetes must be cared for 24 hours a day. In each of those 24 hours we must fight for a cure, using all scientific avenues available.
Thanks to Penny for the Unite for Diabetes logo, and for her wonderful post today.
Sunday, November 4, 2007
I work part time. I volunteer at my kids' schools. I cook, and sometimes double, because some members of my family balk at the gluten free stuff that Daniel has to eat (usually baked stuff like muffins, or GF pasta, which is pretty dense). Whine whine whine, but what it comes down to is that even with help from DH and the kids cleaning their rooms & doing their chores, there's still an awful lot to do before head hits pillow and usually it doesn't all get done.
Plus, I need time to blog. And upload diabetes 365 pictures.
So, I need a wife to take this one to karate and pick up the guitar method book for the other one and research gluten free recipes for the other one and maybe even take the time to call my mom & say hi. With one more person rotating into that 3 a.m. bg check, we'd all be a little more sparkly-eyed during the day time.
Payment is room & board plus chocolate & coffee. Call 1-800-crap-job.
Wednesday, October 31, 2007
For tonight, at least, we go the go ahead to skip the 12 a.m. bg check and just do 3 a.m. Whew! We'll see what happens tomorrow.
Daniel is not going trick or treating tonight. A combination of conditions -- diabetes, celiac, and just being 14 year old -- come into play. I'm happy and sad at the same time. Funny, last Halloween we were telling Daniel that we thought he was getting a little old to be trick or treating because once your voice starts changing people look at you funny when you say "trick or treat" in bass tones. Daniel said, as I recall, "NO WAY! I'm going to keep on getting candy!!"
Of course, everything has changed. The funny thing is, he's eating more candy than he ever ate before (a little at a time to correct minor lows). So maybe getting a sack-full isn't that important. He always has candy in his pocket.
One of his teachers, who was handing out candy to other students, gave Daniel a package of peanuts instead. Of course, handing out peanuts in school might not be exactly safe these days, but he knew that Daniel did not have a peanut allergy. And they are gluten free. It was a nice gesture.
I have been thinking about how diabetes & celiac touches everything we do now. We have to be obsessive-compulsive to test at the right times, to plan for the day, to figure out meals, to check the ratios & calculations twice before injecting. It's like we are looking at every minute of every day through a new lens, and, perhaps since I'm the mom & deal with these issues one on one more often, I tend to forget that there's a world out there that doesn't even think about carbs, snacks, gluten, and life & death every day. I was in that world just a few months ago, and I guess my head is still spinning. Not as fast as it used to, but enough to make me dizzy some days.
Okay. Time to get the ghosties and goblins ready for Halloween. Daniel's brother & sister are out to get a major haul!!
Monday, October 29, 2007
Sunday, October 28, 2007
Saturday, October 27, 2007
Our wonderful pen nurse Celia increased the Lantus to 28 last night, and we're adjusting the bolus ratios for every meal every day, depending on what Daniel's bg does. For the first time in FOREVER (what, a week and a half?) he was below 200 all night. Whew! Have we hit the magic number? Of course, today after breakfast he spiked up over 200, which is weird because he has been dropping low during the day. And honestly, if he's going to drop, I'd rather deal with it in the light of day than the fog of night when at least two more brain cells are switched to the ON position.
I've tried to steal a drop of Daniel's blood at night without waking him, but that has happened only twice. For some reason his fingers easily release enough blood at midnight, but are quite stingy at 3 a.m. It's taken 4 or 5 attempts to get one drop. Daniel shares a room with his younger brother, so we swear in whispers and I cringe at the click of the lancet. Dominic talks in his sleep, and I wonder if we are influencing his dreams.
We are certainly influencing mine.
Wednesday, October 24, 2007
And then this morning at 3:45, Dominic came in our room saying he had a bad dream. WAAAHHH!!
When the sugars & ratios & overnights are back under control, I'll be back online...
Thursday, October 18, 2007
Daniel came home from school yesterday and said that he had an up and down day. “Not my blood sugars!” he was quick to explain.
First they had the PSAT test at school. Four hours of testing, he said. Long and boring. Boo! Plus, when he tested his blood sugar it read 350 (!!!) but he thinks that was a mistake because he forgot to change the code on the glucometer. But he was in the middle of the PSAT so he didn’t retest. And his lunch number was in range. Yay!
Then, for all the kids that were on time & completed the test, they had a party in the afternoon. Yay! Excellent! No classes! At the party they served cookies and soda. No diet soda. No other drinks. (Did I mention that at the homecoming dance last weekend there were only regular sodas?) Boo! So Daniel traded in his food tickets for raffle tickets, because there were also raffles being given out. Yay! And then, get this – he won a raffle! Yay! He goes to pick up his prize – and it is a $10.00 certificate to McDonalds. Boo! Not good for the diabetic celiac. So he gave it to a friend.Later, he realized that this guy in one of his afternoon classes is the student government president. So Daniel pulled him aside & told him about the lack of diet sodas and the fact that he can’t have any. So the prez said yeah, that’s a really good idea (side note: I can’t believe that the constantly dieting teenage girls didn’t complain before this!!!) and he will make change and get diet sodas for the next event. Yay!
And the best yay is that we upped the lantus again last night and the 12 a.m. and the 3 a.m. numbers were finally in range. Hopefully we’ll be able to cut out one of those night time checks soon!
Tuesday, October 16, 2007
Usually he sleeps right through Daniel's middle of the night blood sugar tests, but I noticed a couple nights ago that he was tossing and turning. Should have been my first clue.
I'm staring at the screen, my brain vacant and echoing over lack of sleep. We increased the lantus yesterday but the midnight & 3 a.m. numbers still rise over 200. *sigh*
Monday, October 15, 2007
The first day his numbers were beautiful. After that, the 3:00 a.m. number ran high. So as of last night we need to do a midnight check in addition to the 3:00 a.m. check. YAWN!!
Of my 3 kids, Daniel is the one who slept through the night the soonest and always took good naps (okay, we're talking 14 years ago, but whatever). Who knew that we'd have a second chance at night time visits? :-) Luckily Dominic, in the bunk above, sleeps through the whispers and beeps.
When I first had my kids & I'd nurse them at night, I'd have these dreams of nursing -- and it would get to the point where I didn't know if I was actually in the rocking chair with the baby, or in bed dreaming about it. Sometimes I'd jump out of bed & look for the baby, because I could swear I was just holding him/her... but it was only a dream.
Last night I dreamed I was checking blood sugars. Slept through the first alarm & woke up 45 minutes late. Oy!
Friday, October 12, 2007
I said, "Let me pour it please, it's heavy."
"Can I help you pour it, mom?"
So he puts his hand on mine as I pour the milk. I finished, put the cap back on the milk, and walking over the the fridge to put it back I instruct Dominic to "go ahead and put the top on your cup."
"Mom, can I drink it topless?"
Thursday, October 11, 2007
I called to get an appointment for Nora with Daniel's gastroeneterologist. There are no openings through the end of the year. THE END OF THE YEAR!!! *sigh*
Tuesday, October 9, 2007
Daniel was diagnosed on May 8 this year with diabetes, and in July the celiac diagnosis was confirmed by endoscopy. The gastroenterologist said that celiac runs in families, so we should all be tested. Not that we have to run out and do it RIGHT NOW, but at the next physical, just ask for the test.
I had my physical in August. No celiac. And I'm the one with all the gut issues. I guess I continue to be Ms. IBS with a dose of exhaustion on the side. DH has not been tested, but he can, and always has been able to eat ANYTHING. Spicy food. Eels. All kinds of gluten-filled substances. No gut issues.
Nora had her physical in September. Yesterday morning I hear the phone ringing as I walk in the door after taking Dominic to the bus stop. When I heard that it was the pediatrician, I just, well, constricted a little. A whole body constriction. It was about the celiac blood test. Her endomysial IgA is positive, and her t-TG is a weak positive, at 9. Normal is below 4. Weak positive is between 4 and 10, and above 10 is positive. When Daniel was tested, he was at 70.
I was so sad all day for her. Worried about telling her. She is my "selective eater" (pickypicky)
and she sure loves her bagels pizza french toast sandwiches etc. etc. When I called her up to my room and hugged her and told her what our next steps were, I didn't know that I caught her on a mega homework day, and she was overwhelmed & teary the rest of the night.
I've called for an appointment for Nora with the gastroenterologist. Soon we'll know our next steps. Cooking gluten free for two is easier than cooking gluten free for just one. And we still don't know about Dominic yet. It could be three...
But what runs through my head is, what, if anything, does this mean about diabetes? At this point, she doesn't show the antibodies for diabetes (we had her tested in summer). Does one autoimmune disease automatically lead to another?
Celiac has been all over the news lately. Some people believe that as many as 1 in 100 people have it, and that it is the most underdiagnosed disease. More and more restaurants have gluten-free menus, and there are now a glut of GF cookbooks available. In January I'll have Dominic tested (it will take a skilled phlebotomist to coax blood from that whirlwind), and we'll go on from there. As I tell my kids, there's much more to life than the stuff you put in your stomach.
Sunday, October 7, 2007
I really hate it. I like to have my list, have my route mapped out, zip through the stores, and badda bing, badda boom, I'm OUTTA THERE with all items on the list crossed off.
Nora and I had rehearsal on Saturday (did I mention yet that I've been cast as a muskrat?). So Matt had to take the boys out shopping to get Daniel something sufficiently dressy so he can officially accept his nomination for Homecoming Duke. I have no idea how many others are nominated. Agh! Matt's idea of shopping seems to be on a par with mine. Zoom in on your target, purchase, LEAVE. I figured he'd have the suit bagged within an hour.
While Matt chased down regal togs, Nora and I sang about the Chesapeake Bay. After rehearsal, we stopped off at Target to pick up a couple of nephew birthday presents. On the way home, my cell phone rings. I figured Matt was wondering where we were! So I said, by way of hello, "I'm on my way home NOW!"
Matt explains to me that he has driven from one end of the county to the other to get this suit. It's being hemmed now. He didn't get the belt yet, or the underwear. But he's done. He will be home after the damn thing is hemmed.
I said, well, since you are still in the store, why not just pick up the underwear?
Matt: I AM DONE.
Oh yeah. Shopping with a teenager and a six year old. And I wasn't there.
HEE HEE HEE HEE!!!
Saturday, October 6, 2007
Back in May when he was diagnosed, I felt like my heart just cracked into pieces. In June the nurses wanted to do a second set of labs on his thyroid and celiac tests, because both of those labs showed elevated levels from when he was first brought into the hospital. When the nurses explained all the "what-ifs" to me (elevated thryoid levels would require a pill every day... elevated celiac would require an endoscopy and, ultimately, a complete change in diet) I prayed, "NO CELIAC! PLEASE!"
That prayer was not answered. Or, as some people note, it was answered with a "no." Hmph.
But you know what? We're making it through every day. Daniel, as I have said before, is an incredible inspiration to me. He is so nonchalant about his routine, and the only time I've seen him truly frustrated is when he pricks his finger two or three times and it's just NOT bleeding that day, even one drop, to get his bg tested. When I think of the things he used to eat and love -- pumpkin muffins, fettucini alfredo, kudos bars, cinnamon buns, and then the fun things like going to a fall festival and stopping by the bake sale booth -- that's the kind of thing that still makes me ache inside for him. However, if he's feeling upset about missing out on these things, he's not showing it. He asks if foods are gluten free, and if they are not, he shrugs his shoulders and says, "oh well, not for me." And he finds what he can have.
I tend to fixate on the gluten-free thing, because it affects so much of what we do. No school lunches, packing food for play dates & other functions, carrying our own treats to birthday parties. It's tough. But I think a lesson to be learned, or at least one that I'm trying to pound into my own brain, is that it is important to focus on the pleasures in life that have nothing to do with food. Time spent talking to friends, exploring new places, disappearing into a wonderful book. Delicious phone calls with best friends, venting and laughing. Moments at the beach in winter, staring at the wild and windy landscape, feeling both incredibly tiny, yet organically attached to the enormous, beautiful world around you. Living in the moment is its own kind of meditation!
And now, back in the real world, I'm going to plan for this weekend and the week ahead. Daniel, a freshman, has been nominated (by whom? we don't know) for Homecoming Duke. You have to be a senior to be King. Ahem. We all know are kids are special. But hey folks... mine could soon be royalty! So we have to go see if his suit fits. And get a tie. And get tickets to the game.
Isn't that exciting?
Wednesday, October 3, 2007
Monday, October 1, 2007
Today was not a day I could go to work. Sore throats are one thing, stomach bugs are something else entirely. Sicknesses involving bathroom emergencies require parental attendance.
For now, she's ingested immodium, she's cocooned in blankets and zoning out to The Simpsons, and I'm here with her. With my snuggle bunny. And my laptop. With the piles of laundry that didn't get done this weekend (hey, it was a gorgeous weekend). With a small pile of bills and an unread book and a new recipe for gluten-free bread. All the boys have left the house, to work and to school.
It's quiet. I'll make us some tea and, sickness aside, enjoy our hours together.
Saturday, September 29, 2007
It's been quite a week. Hard to write this week. Sad things have happened to good friends and while I'm taking it all in, it's hard to write it all out.
I saw "Merrily We Roll Along" the other week at Signature Theater. A wonderful production, and I was happy to see it for a number of reasons. First, it's a Sondheim show I've always wanted to see, know all the music, and had never had the chance to see. It's a show that never does well with reviewers because it goes backwards in time and has some basic flaws, but since I only knew the music and never saw it, I never could really understand why it continues to fail. The music is precious to me. The song "Old Friends" brings me back to my late teens, and to my old (oldest & bestest) friend Brad who introduced me to the show.
Jump to the present and there I am at the show with my husband and Brad and his partner and the joy & sadness, the successes and losses in the show rang true for me in a different, much deeper way now than they ever did when I was a teenager. So happy to be there with Brad, my old friend. How well I comprehend the grief that comes with changes, growth, and loss that life can bring you. It meant a lot to me to see the show with this particular group of people.
I have friends in such turmoil right now and my heart goes out to them. As a parent of a diabetic/celiac child, I understand the depths of anguish that any parent goes through when their child is somehow damaged. And while I have friends who look at what I'm going through and say to me "I don't know how you do it," I can turn around to another friend whose child has a different condition and also not know how she does it.
We all have crap to deal with. Somehow we have to get through every minute, every hour, every day. Some crap is much worse than others. I don't know how all of you out there do it, how you get through your five hundred twenty five thousand six hundred minutes that make up each year. As for me, I rely on the strong shoulders of my husband, the joy of my kids, and the support of many wonderful friends. I disappear for a couple of hours into a story on a stage, and the truths revealed in that story resonate with me for days.
Monday, September 24, 2007
Daniel asked that I don't make sandwiches anymore for lunch... that gluten free bread just isn't working for him. And I agree -- although it is just fine the first day, after a week in the refrigerator it just tastes dry. Ugh.
In my many online searches (I could do this all day) I found onigiri -- sticky rice balls stuffed with, well, whatever you want, really. Traditional Japanese onigiri might have fish or some kind of plum inside, but you can really add anything you want that is finely chopped so it holds together in the onigiri.
I found on ebay some onigiri molds, and they arrived today. The onigiris that I had been making were palm-sized things, which I made as sandwich replacements for Daniel's lunches. But these molds make itsy bitsy onigiri, and so cute!
These are stuffed with minced chicken mixed with a salsa verde, cheese, and spinach. Yum!
Saturday, September 22, 2007
He blinked at me, and with a tinge of teenage angst said, "Geez, I have to get a shot?"
"You're already getting three shots on Monday. What's one more?"
But we all know it's not the shot. It's the label. Diabetes, high risk, chronic.
How did I think of myself as a teenager? Daniel is 14, and I remember thinking when I was 10 or so that 14 was just one step away from adulthood. Of course when I got to 14 and saw how many years I had to go, I was a little grumpy. But now, looking back with mom-perspective, I see that 14 really is one step away from adulthood. Anyone with kids knows how time speeds up as soon as they are born. You blink, and they are in puberty. One blink away from college, moving out, marriage. Yikes!
But 14 -- that's an age that should be fearless. A year of changes, taking on high school ambitions, reshaping your thoughts of the world and your own special place in it. It's an age where suddenly dozens of roads of opportunity appear in your life, and the hardest part is picking a future to explore.
I don't want diabetes or celiac to limit Daniel's roads. I don't want it to cage his thoughts, restrict what he believes his opportunities to be. It is a burden to bear, to be sure. Just an extra backpack to carry on whatever path it is he chooses to take. As we move through this journey and gain knowledge and experience with diabetes & celiac, I work constantly to carry these labels in their proper pockets, rather than building them up as barriers to cross.
I know that someday Daniel will choose a path apart from mine. When that happens, I will send him off with the sturdiest hiking shoes, words of wisdom, care packages, and buckets of love. I will trust that he can take care of himself, while at the same time pray that he finds a life partner to walk with him. I spend a lot of time visiting the diabetes & celiac OCs, gathering knowledge that I pass along, and sharing the burden that our family carries with so many of you, who understand what I'm feeling.
How does that old blessing go?
May the roads rise to meet you.
May the wind be at your back.
May the sun shine warm upon your face;
The rain fall soft upon your fields
And, until we meet again,
May God hold you in the palm of His hand.
Friday, September 21, 2007
Why I love and hate the Internet...
This week Daniel had some strange sensations on his back and midriff. It was tingly and sensitive; almost felt like a sunburn, he said. So I go onto Google and type in all kinds of combinations of diabetes/skin sensitivity/tingling/pain. Google is a wonderful tool. I found all kinds of scary information about neuropathy. As my heart sped up and I began to sweat, I noticed that most of the neuropathy-related information had to do with the extremities. There were rarer cases of neuropathy around the trunk. Hmmm…
So I asked a lady in my office (who has T2) if she knew of any diabetes-related tingling/burning sensations around the midriff. She said that she went to a diabetes education class once where the lecturers said that every once in a while diabetics can experience “bizarre sensations.” These sensations can be hard to pin down—they can come and go, lasting a few hours or a few days. There’s a large variety of sensations. But they all fall under the “bizarre sensations” umbrella.Okay, that made sense. It also was easier to swallow than neuropathy. But I had one more source to check. American Diabetes Association has a wonderful message board for parents of diabetics, and I occasionally go there to read about other peoples’ experiences, or to ask questions. So I posted a question about skin sensitivity. Almost immediately, concern & caring & educated guesses came flowing into my email. And the moms on line reminded me that just because Daniel is experiencing strange sensations, I don’t always have to jump to the conclusion that it is diabetes-related. A couple of them thought it might be shingles, which can start as tingling sensations around the trunk of the body for a few days before the painful rash shows up.
Meanwhile, I’m chewing on the inside of my cheeks with worry, and making Daniel lift up his shirt every half hour or so to check for the slightest blush of a rash.
Finally, Daniel says that it’s not so bad anymore—as a matter of fact, if he doesn’t think about it, it just doesn’t bug him. And my husband said that he gets really sensitive skin in that area when the seasons change and the air gets drier.
Today, Daniel’s skin is back to normal, and the inside of my cheeks are healing. Sometimes an itch is just an itch.
But there’s still something to be said for an ounce of prevention. He’s getting his flu shot on Monday.
Tuesday, September 18, 2007
Not much time to write this week, yet it has been a week full of coincidences and waddaya knows. Cosmic winds are blowing and I'm trying to read patterns in the leaves that scatter at my feet.
I'll let you know if I come up with anything.
Friday, September 14, 2007
A nice end to the week. Daniel had some serious lows in the past couple of days. Of course, one day he didn't finish lunch because he "had no time." I told him that as a diabetic student, there is always time for lunch. He can eat in the nurse's office or in his class. That's what the 504 plan is for! I hope we've got that straightened out. I know it is hard to be the only kid eating in the class room, but I don't want him to be the only kid passing out on the bus on the way home!
I ran to Target on the way to work this morning and bought a broiler pan. I've been without one for years, just using a cookie rack stuck inside a cookie sheet. But I thought it would be nice to have an actual broiler pan. I was thinking of Mr. Piggy marinating in the fridge. I'm also lacking a grill, so a quick broil is the next best thing. And this time I was smart -- I didn't unwrap the thing right away. I put it in my oven just to test... and NO -- it doesn't fit. The door doesn't close. It IS nice to have double wall ovens, but they are the teensiest ovens in the world! AGH!!
The broiler pan will be returned. I'll go back to the cookie sheet method. If it ain't broke...
I'm just glad it is Friday.
Wednesday, September 12, 2007
But the last few days have been routine. And ROUTINE is not so bad. We had a birthday in the house, yes, and that was and was not out of the ordinary. A full house, a large family -- birthdays are comfortable & familiar, if not routine. I think there's something good to be said for the morning alarm, the balletic timing of school-morning breakfasts, the snippets of NPR on the way to work. Something wonderful and rejuvenating about autumn with its class schedules and coffee breaks.
Maybe ROUTINE has been good because Daniel's sugars have been mostly in range this week (except for the "save-all-my-carbs-for-birthday-ice cream" mistake). ROUTINE has Dominic learning new teachers, new subjects, new routines in grade 1 that exhaust him in ways that a day at the pool can't. ROUTINE even makes middle school bearable for Nora (but there are always jerks in middle school so I'm keeping my fingers crossed).
The routine turning of the year seems to have clicked over one notch away from summer and towards fall, and even the sky was celebrating the sudden change in the air with a riotous, colorful party for sunset. I went outside to pick a few late-summer peppers and tomatoes, and stopped to breathe it all in; the quiet moment in the neighborhood, the changing angles of light. Then the geese were overhead, announcing their southward flight path, calling for attention.
Mary Oliver is probably my favorite poet, she has a way of turning the ordinary into the magical. I have been thinking tonight about her poem, Wild Geese. It goes:
"You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting —
over and over announcing your place
in the family of things."
That's from her book Dream Work. And tonight, in a routine moment, I fell into a brief state of grace & beauty. Thanks in great part to Mary Oliver, to the raw poetry in the sound of geese, and to a much needed change of season.