Diabetes Jeopardy!

Sometimes I wonder if anyone in my house can remember a time when diabetes wasn’t always on our minds.

I can’t, not really.

It’s become part of our normal, the routine, something like washing your hands before you eat dinner or  the fact that there’s homework on school days. You don’t think too much about it — it’s just there. Most days, anyway.

Some days, it’s all we talk about or think about. Maybe because Mitzi’s very high or very low or is sick or has a lot of sports or she’s rebelling in her preteen way about all the stuff in her life and diabetes management is just another boundary to push.

Yesterday, we all had diabetes on the mind because of MCAS, the state-wide mandated standardized tests given twice a year. Mitzi had her first round yesterday, so, starting the night before, we prepared. Not for the academics, though — we prepared for the blood sugars.

MCAS is a unique annoyance for Mitzi (even more than it usually is for every other child or adult who has to suffer the ridiculous things). If her blood sugar is too high, she can’t start the test when the other kids do — and can’t even start until it’s normal. And if it doesn’t normalize in enough time that she can take the test on that particular day, she has to make it up, missing class. If it happens on test day number two — well, more makeups, more missed class. Avoiding that scenario was in all of our best interests.

Blood sugar was on my mind when I woke up. What would it be? How early should I wake her up to test and find out? A low-carb breakfast was on the menu (scrambled eggs, while the other kids got pancakes). Would it be okay?

Luckily, it was. Normal at breakfast, even lower throughout the day. We discussed it at dinner, praising Mitzi for managing herself so well all day, and slipped into a general discussion about diabetes. Mitzi tossed questions at her siblings: If I pass out, what do you do? (Call 911, tell them you’re diabetic! Cooper even chimed in, “Get that diabetic epi-pen thingie with the glucawhatever!”) Is 150 a good blood sugar? (Yes!)

Joanna knows her diabetes stuff!

Joanna knows her diabetes stuff!

This led to the idea of Diabetes Jeopardy! After we finished eating, the younger three headed for their showers and Mitzi grabbed a bunch of index cards. She made categories and questions and assigned monetary values. When everyone was ready, they played. I watched from the dining room, struggling with something on the computer I was doing for Ray.

It was adorable. And impressive. A $400 question: What do I need if my number is high? All the kids were quick, but Joanna’s “BUZZ!!!!” was the fastest. “MORE INSULIN!!!!!” she shouted, jumping up and down.

Three years ago it made me sad that my small children had to know all of this. That a three and four year old had to recognize their big sister’s physical symptoms of highs and lows and know how to tell Mommy and Daddy about it.

Now it just makes me proud.

Mitzi finds it terribly annoying, the way one of her siblings will ask her if she’s bolused for the apple she’s eating, or the way that they might find me to see if it’s okay that she’s having a snack. The way everyone at various times asks her where her kit is, if she tested yet, and what the number was. Mitzi is eleven, and everything about her parents and siblings is annoying. But especially when they butt into her diabetes business.

But last night. Ah, last night, it was okay, and for the first time ever, diabetes was kind of fun.

Happy Birthday to my oldest baby!

It’s about 10 degrees outside, the perfect day to hunker down under a blanket with a cup of tea and a good book. But I am not doing that. Because it’s a big day around here. (drum roll, please…)

birthday banner

Happy 11th Birthday, Mitzi!!!!

So, today, in between the work I’m doing, I’ve been baking a cake, wrapping presents, and crafting a special card for the birthday girl to let her know what her biggest gift of all will be (a bedroom makeover!).

It’s been a fast 11 years, and so much has happened. She’s survived hospital stays and chest surgery and a diabetes diagnosis. She’s grown enormously — both in size (she’s almost 5′ 3″) and in creativity and intelligence. And even though she’s entering that gnarly pre-teen years and can be downright moody and edgy sometimes, mostly she’s just my baby. Even her little-girl curls are coming back, though now her hair is more brown than blonde.

candles

So, back to it. Lots to do to prep for the afternoon celebration. I have a purse cake to make, gourmet chicken fingers to wrangle, and nineteen other things to do. All the while I’ll probably be reflecting on her baby time, the little girl time, maybe even squeeze in a few minutes to peruse a few old photos. It’s entirely possible that I’ll find time to shower.

It’s a cold day outside, but inside — well, the party is just getting started!

Cheers!

 

A crossover post! What a tease!

Today I posted on my other blog about what happened yesterday when Mitzi tried to take the long composition portion of the state standardized test. I’ve always hated standardized tests, but since Mitzi’s been diabetic, I hate them even more. If you are interested, hop over to A Life So Sweet and see how our day unfolded. I’ll give you a hint — I learned a valuable lesson, in the end.

 

Happy Birthday, Baby!

Come on. You know I couldn’t let the day end without posting a happy birthday shout-out to my oldest child, who turned 10 today!

*thud*

How is it possible that I have a ten year old?

Come to think of it, how is it possible that I have four kids? Sometimes when I think hard about this, I laugh uproariously, because oftentimes I consider myself too clueless to bear the weight of responsibly raising another human being.  See? You’re laughing too.

The fact that I have wonderful kids seems more to do with them, rather than me, no matter what anyone says. Because in true parent form, like so many others, I tend to dwell on my failures, rather than on my successes. My kids are thriving in spite of, not because of me, much like the way my generation survived our childhood without the benefits of outlet covers and stairway gating.

Today, though, I will enjoy the success, because look at my kid! Beautiful, smart, resilient, creative, on and on….not unflawed, not by any stretch, but overall pretty darned amazing.

Sometimes I look at her in awe. (But because she is preteen I do NOT let her see me looking at her like this. Well, maybe only a little.)

I think it was a fun day for her, and I hope she felt special. Even though it was a ton of work in a very short period of time (yes, another Mom would’ve done this all days ago), Mitzi and her siblings had a great half hour on her present treasure hunt after school. In short: she got an initial scroll with a rhymed clue that lead her to present number one, and another clue scroll, which lead her to present number two, and so on). The first time I did this she was five, and the “clues” were things like “look in the room where the big couch is, then look under it.”  This year I used very tricky language, metaphor, and vague references. Next year, algebra.

Gotta keep them on their toes.

But the best was dessert. Last year was her first as a diabetic. Then, she was on a strict regimen of carbs throughout the day — because of the way we administered insulin, she could only have so many per meal or snack. Therefore, her birthday treat had to be at bedtime, her final snack of the day. But it could only be so many carbs. Instead of frosting on cupcakes, we used Cool Whip. It was delicious and no one cared. Well, I was still grieving, and cared a little.

But this year was almost decadent. Because she is using the insulin pump, she can eat whatever she wants, whenever she wants (well, as long as her parents say it’s okay. I mean, we’re not talking about a revolving door kitchen here!). So we had cupcakes with full-out sugared Betty Crocker frosting, diabetes be damned! I have no idea if she even remembered last year or noted the difference, but it was just meant everything to me.

And now, the day is over, my baby is gone to bed to read for as long as she can get away with. Ten years old. Holy cow.

Happy birthday, baby.

An overdue vacation with many winding roads

Ray and I were married in October 2000 — 11 years ago. Because I was a teacher, we took our honeymoon the following spring when I was on break, a wonderful week-long cruise through the Caribbean. We had no idea it would be years before we’d have another vacation, just the two of us.

Life happened. Kids came, 4 bundles in a 5-year span. Jobs came and went and came again. Houses were bought and sold. We moved 4 times in 5 years. Every October we celebrated our anniversary — next year we’ll get away, we promised each other, clinking our wine glasses before one of us had to go upstairs to see which child was awake and crying or needed a cup of water. When our 40th birthdays neared — first his one year, mine the next — we promised again. But life being the way life is, our long-awaited vacation never came. But it was okay. Challenges notwithstanding, life was very, very good. We were happy.  I mean, we still talked about getting away and were a little jealous of those who seemed to do it regularly, with ease, but it wasn’t devastating. It was just a vacation, not life or death.

But we agreed that, with our 10th anniversary approaching, we’d really try to make it happen. We could leave the kids with my parents and scoot off to the Cape for a weekend — offseason, prices are reasonable, and, frankly, Cape Cod is just as beautiful in the fall as in the summer. Why not?

Then, June 2010, Mitzi was diagnosed with diabetes. Our world was turned upside down. While we adjusted to our new normal, October came and went, with hardly a whisper, and with it, our anniversary. Leaving Mitzi, with the complicated system of insulin dosing and food monitoring, was out of the question. And I was still too scared to let her out of my sight for more than the few hours she went to school — where she was monitored constantly by the wonderful, extremely able nurse.

And that’s the way life was. In the scheme of things, taking a vacation is not a big deal — fun, yes, necessary for stress-release, yes, rejuvenating, yes, but not a priority.

A few weeks ago, my friend called me up to ask a favor. She and her husband had the rare chance for an overnight away — she was getting someone to stay with the kids, but would we take their son (one of Cooper’s best friends) to basketball tryouts? I suggested that he just stay over, since it would be fun for the boys and no trouble, and her older daughters (middle and high school students) could easily have sleepovers of their own. She took a little convincing, but accepted my offer. When she picked him up, she was relaxed, gushing thanks, and said it was my turn. Just say when, and we’ll take them all.

I wondered, was I ready to leave Mitzi? Could I ask someone to take the responsibility for her, for Cooper with his new asthma medication regimen, plus the two little girls? It seemed like a lot. But, when we got together on Thanksgiving night, they pressed us, insisted — they even gave us a gift certificate they’d never used for a bed and breakfast, one that had been sitting in a file for 4 years, and probably would never see the light of day. Go away, they said. You can do it.

I thought, we can. This couple is amazing — wonderful, generous, warm, easy-going, responsible, fun — and the kids would have as much fun on their vacation as we would on ours. Mitzi has been using an insulin pump for seven months, and 99 out of 100 days it works the way it’s supposed to. We could get away for less than 24 hours. On Friday we made the quick decision. Called the b&b and confirmed availability. Finished the dishes from the holiday. Showered the kids. Secretly packed one bag for them, one bag for us. The weather — bright sunshine, sixty degrees — spurred us on. And as we predicted, the kids reacted as if they were going to Disney. Not one looked remotely sad to say goodbye to us, not even Joanna

we almost slept here!

who sometimes gets clingy before the bus to kindergarten.

It was good. We drove north for an hour and half, arriving around 4 o’clock in the small town of Rockport in Cape Ann. The inn was adorable, and being off season, quiet. Still. Peaceful. We got a brief tour of the house, settled our bags, and drove into Gloucester to find a place for dinner. (Off season, Rockport eateries are all but shut down until the spring, and we wanted a few more choices than the town offered).

We found a lovely place and because we were so early, enjoyed the attention of Joe, the young waiter who was happy to chat with us, to pace our meal well, letting us take our time as other patrons gradually filled the room. We lingered over appetizers, rested before our entrees, listened to the live music when the band showed up. We contemplated coffee and dessert, but thought maybe buying pastries elsewhere would be fun. Our waiter directed us to an Italian bakery (owned by a member of his family). We were decadent in our choices — cannolli, pignoli cookies, a not-that-small pastry of peanut butter and chocolate. We stopped for a bottle of wine and headed back to the inn.

It was like dating all over again.

Until the phone call. It was Mitzi. Her blood sugar numbers was off-the-chart high. The level of ketones in her blood was also scary high. Something had gone wrong with the pump — the insulin wasn’t getting into her body, causing the ketones to build up, which, if left unchecked, could lead to a life-threatening situation of diabetic ketoacidosis, which is what put her in the intensive care unit when she was first diagnosed.

Normally, if we were at home, I’d give her insulin using a syringe, and figure out how the pump had failed. This far away, all I could do was have her — for the first time ever — change the infusion set (the part that attaches to her body) and give a dose of insulin that way. She put me on speaker phone so I could talk while she and my friend went through all the steps — successfully. I told her to wait 45 minutes and retest her blood, praying the number would come down.

After I hung up, Ray and I just looked at each other. Vacation was over. We’d never even had a chance to unpack our bag.

Even if her number started to come down, the situation would require constant overnight monitoring, something I just couldn’t ask my friend to do. More than that, though, I needed to be with my child. I needed her close. I needed to watch her breathe and make sure she was okay.

It was around 10:15 p.m. when we got back on the road, this time heading south, to home.

I checked in with Mitzi during the trip. The numbers were coming down, the ketones dissipating. The insulin was working. By the time we got there, things were looking good. The numbers were all still high, but not scary. We’d managed to avoid the emergency room or a 911 visit. Being nine years old, Mitzi wanted to stay over, distraught that she’d miss out on the fun of waking up at a friend’s house and breakfast and play time. We insisted, and she cried desperately, all the way home, all the way to her room. I let her get it out of her system. Part of me felt the same way — because part of what we were both railing against was the absolute injustice of it all, of having diabetes, and all the ways it complicates her young life. So much is not carefree for her, and we both know it. Sometimes a good, cleansing tantrum is necessary.

So I sat with her, and held her, and explained that she could feel free to call me the worst mother in the world, tell me that she’d hate me forever, declare that she’d never forgive me. She could say all those things, I explained, but it would never change this — keeping my child was the absolute priority in my life, and I would do anything to keep her safe and healthy. Anything. Even if it made her hate me. Being her parent was not a popularity contest.

It turns out that my precocious child, knowing that if her blood sugar normalized she’d be allowed to stay over, had given herself three times the amount of insulin I’d told her to. Now that we were at home, we had the opposite problem we’d had before — her number was going too low, and there was no telling how fast it would drop. We stayed up to treat with fast-acting sugar, balanced by snacks, and eventually everything was regulated. Ray got up around 3 a.m. to check that she was still in a safe range. By 8 a.m. she was low again. It was a roller coaster.

By 9 a.m., Mitzi wanted to join the other kids for their morning of fun. The dad came to pick her up — they both felt terrible that things had gone so wrong for all of us, and hoped to give us at least a few more kid-free hours today. Like I said, they are pretty amazing people.

So here I sit. The house is quiet — not as quiet as the inn, and not so charmingly decorated, but peaceful. The kids are safe, and Ray and I had a night out. Okay, it was a little more exciting and complicated than we’d envisioned, but a night out nonetheless.

And there were moments of serendipity too. Just before our entrees were served, the first member of the band showed up with a guitar, and, thinking he was alone, I wondered if he would perform singer-songwriter numbers. Then a bass player arrived. After setting up, the guitar player began, alone. I turned to Ray. “Doesn’t he sound like Grandpa?” We listened, thinking our separate thoughts. After the number, Ray spoke to the musician — did he know any Tony Mottola tunes? Turns out, he did. Ray explained the Tony’s granddaughter was here. That’s funny, the musician said, I played at his granddaughter’s wedding, in fact, I played for two of his granddaughter’s weddings. He and Ray talked some more about the coincidence, and the next number was one of my grandfather’s songs.

Our wedding band was Bombay Jim and the Swinging Sapphires. They played at my cousin Maria’s wedding in 2009, and we loved them so much we paid them extra to travel to Connecticut and play for ours. I danced with my grandpa to the song he wrote for me when I was born, just as Maria had at her wedding. At both, Grandpa was thrilled to hear his music emerge under the skilled fingers of another artist, smiling widely to be not only witness to his granddaughters’ happiness, but to experience again the level of joy he’d felt when composing the notes that now played for them on their glorious days.

I sat in that restaurant and listened to the song and remembered.

It had to be more than coincidence.

Our first getaway in 11 years brought us to a small, offseason seaside town north of Boston. A half-hour walk up and down the street, reading menus and making choices led us to a certain restaurant, one of a dozen we could have picked. The performer at our restaurant of choice happened to have played at our wedding — just months before our last vacation.

It could have just been a surprising series of events that brought us there. But I don’t know.

That our night away was cut short by the rare malfunction of the insulin pump — the tiny tube that rests under Mitzi’s skin had bent, probably while she was playing, probably because her stomach muscles tightened and the tube was bumped, probably this because it had been otherwise working all day to that point — doesn’t really matter now.

See, my grandfather was a family man. Over the many years of his career he had opportunities to move, to explore options that were perhaps more glamorous and financially rewarding. But he stayed where he was — building a stellar career and establishing himself as one of the best guitar players in his field — all without sacrificing the stability of his family. La famiglia.

My grandfather was Tony, and his wife was Mitzi.

Ray and I had a wonderful night out — twists and turn and surprises, but also time alone to laugh and talk and for a few hours, feel totally unencumbered. And perhaps throughout it all, my grandparents watched over us, undoubtedly delighted that we were having so much fun. But in the end, la famiglia is what matters.

And the pastries and wine? They’re in the kitchen now, waiting. Everyone is safe and well today.  Perhaps tonight after the kids go to bed, Ray and I will bring out our treats and toast our family and friends.

A vacation isn’t a location, after all. It can be simply a state of mind, if only you know where to look.

A Stanley Cup for the Bruins — but we’re celebrating another victory.

Today, thousands of hockey fans are celebrating the victory of the Boston Bruins over the Vancouver Canucks to win their first Stanley Cup in nearly forty years. There will be parties and parades and champagne and beer and music and applause and speeches and smiles.  Today, Boston hockey fans celebrate a huge victory.

Here, in my world, we are also celebrating a victory.  We won’t have parades or beer or speeches, and while there is always music and a whole lot of smiling, we aren’t doing anythingspecial.  In fact, it might be that no one in my family but me is thinking about this milestone — surviving the first year of life with diabetes.

Last June, Mitzi was recovering from her week-long hospital stay,  and we were all adjusting to the news that our world had changed forever.

It’s funny.  It occurs to me that I haven’t really written anything about what it’s been like the past year.  I thought it, writing about our new normal, from time to time, but never did.  Perhaps it was because I didn’t want to be a writer who could only write about her child’s illness.  Perhaps it was because my child and her illness was pretty much all I thought about every day — whether in the front or back of my mind, it was always there.  And because of that, when I sat down at the computer, perhaps writing was my escape.

Perhaps I was just grieving.

All parents have hopes and expectations for their children — I don’t mean the dreams-of-Harvard-or-sports-star variety, necessarily.  We hope that they will be happy and healthy, and survive adolescence relatively unscathed, and become happy, healthy, honorable adults.  Stuff like that.  And when you are suddenly informed that your child has an illness or a disability, your world shifts.  Your future shifts.  And you must shift with it.  For parents — unlike kids, who adjust far more quickly — that means grieving and letting go of whatever expectations you had.

We make new ones, of course, and certainly a diagnosis of diabetes is not as severe or shocking as another diagnosis would have been.  But life has changed.  My child will face challenges every day that before simply did not exist.  And as the parent, I have to not only deal with the challenges with my child, I have to help her learn to deal with them on her own, too.

So, the first the shock, then the grief over the loss of a future you expected.  And all of Kubler-Ross’s stages of grief likely follow:  the anger, denial, depression.  I think that this is where my mind has been, even though you wouldn’t have seen it, to look at me and talk with me and watch me do my motherly thing to keep my kid healthy and be an equally good mom to the other kids as well.

But, yes, I have been angry — at God, the universe, the injustice, no one in particular.  Angry because there’s actually no one to blame, and for crying out loud, if I could find someone to blame, I could find a solution (or at least something to punch).  Angry with that feeling of helplessness, my inability to change anything, which is just about the darkest pit a parent can visit.  Angry that I had to visit that dark pit of helplessness and still find a way to smile and love and be a good mom and wife.

Angry?  Yup.  Not always, but sure, sometimes it spurted out of me at odd moments, for no obvious reason.  Denial?  Well, it’s kind of hard to deny the obvious, especially when you have to constantly watch what your kid eats and give her a bunch of shots every day.  But maybe denial in the form of not really talking about much, and by not talking about it much, maybe denying that it was basically the focus of our family.

Depression?  Sure.  Living with the diagnosis is exhausting.  Thinking about it all the time is exhausting.  Riding the roller coaster of blood sugar levels — the way they change swiftly, unpredictably, shockingly — is exhausting.  Some days I was just.  So.  Tired.  Sleep was good.  Awake was bad.  Depression?  Yes, some.  Not every day, not all the time, but it was there.

And here we are today, a year later.  Acceptance?  I suppose.  I’m not angry any more — okay, I have my moments of frustration, particularly over the last month since Mitzi started her insulin pump, which was a new learning curve, almost like starting over.  But I’ve accepted life as it is.  I’m still exhausted.  I still get sad that Mitzi has to call me from school to see if she can have a cookie for a friend’s birthday, sad that the school nurse emails me throughout the day with blood sugar numbers, sad that the diabetes adds an annoying complication to my daughter’s childhood, just as she is starting to knock on the door of puberty (behind which is a whole host of new and foreign complications, also known as The Teen Years).

Sometimes I just wish that she could be like every other kid, footloose and fancy free.

And in a way, she is.  Over the past year, Mitzi has at times been annoyed, frustrated, angry, sad, and just moody about having diabetes — but mostly she is just the same smiling, ultra-creative, independent, first-born-bossy, mega-Harry Potter-fan self.  Having diabetes is just another part of her, like her freckles and big feet and great blue eyes.

She recently told me that it was hard for her to remember what it was like Before.

That’s really what matters, of course.  The time of Before has pretty much ceased to exist for Mitzi, who is young enough, resilient enough, to only know how to live in the Now.  Her aspirations and dreams remain what they are — there is nothing she cannot do! — and will continue to grow with her.  For her, there is no grief, only hope.  And that helps me leave the grief behind and find acceptance.

So today I celebrate this milestone, quietly, to myself, because it’s a good one.  We survived.  We got to the other side where our future is spread before us.

It’s not a bad view, at all.

First day of school

I hardly slept at all last night.  First day of school today.  Nerves, excitement, and adrenaline kept me up, as it always does.

Was I ready?  Clean clothes, check.  Organized backpacks, check.  Lunches planned, ready to pack, check.  Alarm set, check.  Double-check.

At 2 a.m. I wondered idly if I should test Mitzi’s blood glucose level.  I was up, why not?  But I decided not to bother her.  The levels have been good.  No reason to think she was so low she could have a seizure or slip into a coma.  Instead, I used the bathroom and had some orange juice.

My first alarm rang at 5:45 a.m.   I ignored it.  The second rang 10 minutes later.  I got up, turned on the coffee pot, watched the news.  Surely I had forgotten something?

A shower, then roused the kids.  Even Ray got up earlier today to help with the bustle of Day One.

Everyone was ready a half an hour early.  That will never happen again, but it’s nice to start the year off on the right on-time foot.

So they went, my third and second graders.  I reminded Cooper to smile more and scowl less.  I silently worried over his ticky finger twiddling that he does when he gets nervous, grateful that second graders don’t notice that sort of thing, grateful that it’s a finger tic and no longer the jaw popping thing he was doing last year.

I reminded Mitzi not to forget her diabetes kit at the end of the day.  I silently worried that she wouldn’t eat what she was supposed to, when she was supposed to, grateful that the school nurse has tremendous experience with diabetic children, grateful that the school is small enough that nearly everyone knows who she is, what her condition is, and dozens of adult eyes will be watching out for her.

I am thrilled to be getting my quiet mornings back.  Ellie starts kindergarten on Thursday; Joanna is back to 3-day-a-week preschool next Monday.  I’ll have those occasional couple of hours to myself, and have very grand plans.

Still, I’m sad to see the summer go — not the heat or humidity, but the time.  As always, I’m sorry we didn’t do more — we didn’t camp or finish all the science projects or hike or bike the Cape Cod Rail Trail.  We didn’t swim nearly enough, and hardly had any s’mores.  But I’m glad that my kids are able to amuse themselves during the unstructured, free summer days.  They spent their days outside, without me, building forts and riding bikes and climbing trees and splashing in the blowup pool, fighting and falling down and helping each other up, just as me and my siblings did when we were young.  I have no idea what my mother did when we were not with her — to a child, a parent out of sight is a parent out of mind.  I’m sure my kids feel the same way.

A year older, a few more dozen steps away from me and Ray.  Mitzi will turn nine in a few months.  Conversations about sex and menstruation and peer pressure and more loom on our horizon.  Soon after it will be Cooper’s turn for the talks, for surely she will tell him everything she knows.

Today, though, the morning clouds are swiftly burning away under the sun’s sharp heat.  The air is soft with an early morning chill that will also fade by lunchtime.  By now the kids are settled into their new classrooms among friends old and new. 

A clean slate.  Anything — everything — is possible.  The first day of school.