Not a Day Goes By

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.

Onigiri!

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!

Labels

I told Daniel that he had an appointment on Monday to get a flu shot. "Why?" "Because you are in a high-risk group." "What's that?" "You have diabetes. It's a chronic disease. People with chronic diseases need to make sure they are protected from things like flu."

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.

An itch is an itch is an itch

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.

And so it goes...

Teach Sunday school, rehearsal, night off, yoga, back to school night, pick up Nora from dance, rehearsal, teach Sunday school. And so it goes. I count off the activities rather than the days of the week. Look for trends in Daniel's blood sugars, count minutes of exercise. No wonder the days stream by, leaving a blurry impression. It's like staring at one of those flip books. Can you see the picture jigging through the pages? It's a mom juggling meals, needles, a cell phone and a calendar.

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.

Plugged In

It's Friday afternoon and we're all plugged in. I'm in blog mode, Dominic & Nora are watching the Simpsons, and Daniel is playing his hour's worth of video games. Apples are boiling their way into sauce on the stove (trying it with Honeycrisp apples; we'll see how it goes because my favorite Staymens are not available yet). The pork loin is marinating. And all the humans in the house are quiet.

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.

Routine

Sometimes it is hard to come to the computer to write because I don't have anything to say that is IMPORTANT. After all, I'm committing words to paper (screen) for all time and for many eyes, so shouldn't it be IMPORTANT?

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.

Festival, Milady?

We went to the Renaissance Festival yesterday. Oh, but t'was a glorious hot day for a faire. And what a crowd there was to be seen! I felt for the poor little children whose parents dressed them up in fancy faire clothes -- long velvet dresses and pretty head-dresses -- for the heat caused everything to droop and drag. I'm sure the soaked-in sweat added pounds to those garments. Still, the sight of a 2-year old child in full regalia sitting on a stump and chomping on a turkey leg is quite charming.

And yes, Daniel was able to eat at the faire; meat on a stick is quite free from gluten. The potatoes were fine, and there was plenty of diet soda around. He did go low, probably from walking around in the heat, but was able to care for it and enjoy the surroundings. He got a double-sided pendant, custom forged in brass.

Nora came home with a dragon on her shoulder and Dominic got a nice, wooden sword. Nora also had her fortune told -- a future fraught with tension and change. That was an easy reading -- tension and change is the very definition of middle school! In the second reading (more about her grown-up future) there was much talk of romance. I wasn't ready for that.

Although we always, ALWAYS have to take diabetes & celiac into consideration, it still felt like a day where we were able to focus on the event, not the disease. We always walk around prepared for disaster, so it is hard to let go of that, to not see everything through the diabetes/celiac lens. But we got away with it. For a little while.

See you on the morrow.

My favorite thing of the day

So Dominic comes home from school (first grade) and I go through his backpack & find his work for the day. There's a sheet of paper that has a picture of a slide and a picture of a swing set. Dominic had to glue little square pictures of boys and girls onto the slide and the swings. Then he does the math on the next page.

__12__ kids are on the slide (he wrote in the number he pasted on)

__8__ kids are on the swing set (again, he wrote the number)

How many kids are on the playground all together?
(he wrote 20)

How do you know?
He wrote: "I cowented it."

As I was adding up the carbs for dinner tonight I was thinking, "Hmmm. I'm cowenting."

Moo!

Brain Freezes & Thaws

Things I didn't do:

Mail the phone bill.
Call my mom.
Read the "Castle" book from Dominic's trip to the school library.
Talk to my husband about his interview.
Finish everything on my desk at work.
Clean 1 room today.
Water my garden.

Things I remembered:

Daniel's earlier shot on a school day.
How many carbs Daniel had for dinner (so he wouldn't miss the last 20).
What time Nora had her medicine and what her temperature was.
Daniel's class schedule (about a minute before the bus came).
Asking Dominic what happened at school & the names of his new friends.
To call Kathryn to see if she is okay.
To look at a few headlines to know what happened in the world.
To write, if just for a few minutes.

So now it is September

I just had to get out of the house & do some shopping for my daughter whose sneakers fell apart. She also got a coupon from Limited Too for her birthday, so we spent 45 minutes in there agonizing over clothes, stuffed animals, toys & candy.

Then on the way to the shoe store my husband calls to say that they totally lost track of time at home and are just having lunch now (an hour late). This is the day after the wicked low.

And I think to myself, should I ever leave the house? I didn't call at 1 because Matt was home. But he was working and Daniel had a friend over and time just slipped away.

And it wasn't so bad. Daniel was at 73. We do the best we can do.

But later Daniel was sad. Here we are, almost 4 months after dx, and it is the first time I've seen him hang his head since his days at the hospital. His shoulders were hunched over and I could see the weight of diabetes & celiac diagnoses like a physical presence on his spine. Usually he smiles, shrugs, and says, "I'm going to do what I have to do!" Takes it in stride. But last night he was down.

We talked it out, and I reminded him that there is a therapist at Children's Hospital that works with diabetes patients if he feels that talking to me or to his dad or friends isn't enough.
Which he didn't want to do, but he knows it is there if he changes his mind. And by the time he went to bed, he was smiling again. But maybe just for my benefit.

I fell into a deep funk last night. I haven't cried like that for a while about the unfairness of it all, how random and strange it is that this has taken over my son's life, how it has changed our family.

But today I read a blog post by Brett Griswold entitled "Why me? WHY NOT ME?" which really lifted me up. He has an amazing attitude & perspective on life with diabetes.

I'm so thankful for blogs, this incredible medium, the ability for us to find others who can encourage us with their stories. I carry Daniel's diabetes in my heart every day; his schedule of shots & meals sets an order to the family's day. But there is life to be lived above and beyond this condition. I just need to be reminded every once in a while.

Good news though -- we will be switching to basal/bolus in October. Something new to learn.