A Life So Sweet

Our family's journey through the daily nonstop ups and downs of living with type 1 (juvenile) diabetes. And, no, don't hold the sugar!

The standardized test blues

I hate standardized tests. I hated them as a student, I hated them as a teacher, and I hate them now as a parent. They are nothing but high-pressure snapshots of students on a particular day that reveal little about a student’s ability or potential, and are virtually useless in determining the skill of either teacher or child.

Can you tell it’s MCAS time again?  

This month, students at my children’s school will tackle the English/Language Arts section; later this spring they’ll take on math. I try not to make it a big deal. The teachers have been working with students to prepare (because, honestly, when approaching these things, much of the battle is actually practicing the unique format of the test rather than beefing up on the knowledge). Cooper, with a boatload of his friends and peers, participated in an after-school prep class to improve their test-taking skill set. I wasn’t worried, and hoped to pass on my ease to Mitzi and Cooper as test day loomed.

In fact, we were so relaxed about the whole thing, I almost forgot about it yesterday morning. It wasn’t until I received the email from the school nurse that I slapped my forehead. It was MCAS! Her email shared Mitzi’s pretest blood sugar number.

Ah, yes. See, before she takes a test of any length (like, beyond a spelling test), Mitzi has to test her blood. If her numbers are off, she has to wait until they regulate before she can take the test. Usually, this is not a problem — either her numbers are fine, or they come down quickly enough that she can make up the work later in the day (if not sooner).

But we ran into an issue when she took her first MCAS as a third-grader last year. The anxiety, stress, fear of it contributed to her sky-high numbers that morning, and she wound up taking the test after lunch in a private room (ultimately, no worse for it — she only got one answer wrong.)

So we weren’t to fussed about it this year. Both Mitzi and Cooper are very smart, and we are all confident in their abilities. We knew if they were relaxed, they’d do well. End of story.

Before breakfast, I changed Mitzi’s infusion set and refilled her insulin reservoir, as it was almost empty. A good breakfast, a happy goodbye. Things were fine.

When I got the email, I wasn’t worried to see Mitzi’s blood sugar a little high, in the low 200’s. After all, an hour earlier she’d eaten a big bowl of Cinnamon Toast Crunch, and the insulin was probably still working madly to process all that sugar. But, because it was not normal, she couldn’t start that day’s assessment, the long composition portion.

The reason for this is simple. A high blood sugar can cause a foggy brain, body shakes, nausea, and increased anxiety. Certainly not a test-taking state of mind! So, we wait.

As the morning went on, her numbers went up and up and up, despite being relaxed, reading a book in the nurse’s office, waiting for the insulin to work. A little after 11:30 a.m., the phone rang. Mitzi’s numbers were almost 400, and she had ketones — which had gone from 0.3 to 0.4 in just an hour. Something was amiss.

I had the nurse give Mitzi a shot of insulin and grabbed my supplies. I needed to go to school and figure out why the pump was not working. When Mitzi removed the infusion set, it was clear — the tiny cannula was bent like a paper clip, and examining the spot on her belly where it’d had been placed, it was clear the tube never made it into her skin, just pressed against it, held fast by the adhesive.

By that point, there was no way she could take the test. It was almost noon, and while kids have as long as they need to do this portion of the exam, her blood sugar wouldn’t be normal for hours. Since everyone was testing, all we could do was pack up her stuff and go home (where, of course, her blood sugar not only normalized, but was on the low end for the rest of the day). She’ll have to do the makeup day, missing out on classwork that day. What happens if things go much the same way? We don’t know.

I’ll say it again — I hate standardized tests. These days, it’s for the reasons I said before, but also because of this added stress for my child.

I can tell you this, though — on makeup day, I will make darned sure to NOT change her infusion set in the morning. Lesson learned.

Huh. I guess we now have our own standardized test, just for parents of diabetics. No child left behind, indeed.

 

 

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An update on the artificial pancreas project

I know I haven’t posted in a while, but I just wanted to share this article which reports on progress being made in the development of the artificial pancreas. How awesome will it be when such a device is finally approved for everyday use by type 1 diabetics?

Mitzi is very excited that some day she might have a life that doesn’t require blood sugar checks around the clock, that she might be able to go to a friend’s house without her mother obsessing over her every move, that she might be able to play sports without constantly monitoring herself to prevent deep drops in her blood sugar.

A day that she could be just like all the other kids.

I’m pretty excited about that day, too.

 

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Medicine is not always an exact science

One of the hardest lessons I’ve learned as a parent is that doctors don’t always know what to do.

I’m quite sure that they do know what course of action to follow much of the time — and it’s clear that they know a lot more than I do about medicine — but over the past 10 years of visits to the pediatrician’s office, as well as a number of hospitals, I’ve come to understand that sometimes treating a child is a good amount of guesswork.

The first time this happened was when Mitzi was just a few months’ shy of her third birthday. We were living in Connecticut at the time, though Ray had already started a position in Boston and was there during the week as we prepared for the move north.  Mitzi had developed a sudden, high fever, but had no other symptoms. By this time I knew that she’d inherited my tendency for high fevers (there’s no in between with us!), and agreed with the doctor that she probably just had a virus. Without symptoms, there was nothing to do but treat with ibuprofen and Tylenol, and wait.

After a few days, nothing had changed. Another trip to the pediatrician earned us a prescription for antibiotics. They didn’t help. This went on for a week, until one of the doctors in the practice suggested a chest x-ray was in order. The x-ray revealed pneumonia so severe she was hospitalized in order to receive IV antibiotics. After a few days, this didn’t help, and she was transferred to a hospital in New York City, where she had surgery to drain the fluid that had been building up in her chest cavity all that time. She was there for 10 days.

All along, we wondered why it had gotten so extreme, when she had been sick for so long. But the doctors did what they had to do — start with the evidence and proceed from there. They had no idea why she had a fever, and experience taught them that more often than not, tests, such as x-rays, are not called for, when the most likely cause was a virus.

The same thing happened with Cooper over the years, as he struggled with winter colds and coughs that left him struggling to breathe. But no one really officially said why — symptoms were just treated, relieved, colds came and went. Despite a weekend in the hospital when he was a toddler, no one gave us an exact diagnosis for what was going on. Until this fall, that is, when he was diagnosed with allergies (seasonal, dust) as well as asthma.

So when Mitzi became diabetic, we were not entirely unprepared for the world of medicine and its try-and-see approach to treatment. However, this being a pretty well-researched and defined disease, we were a bit surprised that it too was not an exact science.

Managing diabetes really means regulating one’s blood sugar, all the time, every minute of every day. Because 1+1=2, you’d think this would be easy, make sense. Give the right amount of insulin, eat the appropriate amount and types of food, throw in a bit of exercise, water and a good night’s sleep, and you’d think that all would be regulated. Easy peasy.

But it’s not like that. With diabetes, 1+1=3 or 10 or four-fifths. Blood sugar can be influenced by any number of factors. A virus, for instance, a common cold, can make you insulin-resistant. So can the human growth hormone and puberty. Stress, adrenaline, exercise can also raise blood sugar inexplicably and unpredictably. But exercise can also lower blood sugar.

The balancing act is a hard one. It’s a mystery. Mitzi has had consistently high blood sugar over the last week — not excessively so, but higher than normal and higher where she out to be. We don’t know why. Could it be another growth spurt? Is she starting to go through puberty? Is she sneaking a snack here and there and not ‘fessing up? All we can do is give her insulin after the fact and hope it works. At some point we’ll probably have to increase her basal rates too, and hope that helps a bit.

This might be the hardest part of it all for me, the parent. I’m not afraid of a challenge, a problem, so long as I know the solution. The guesswork and the uncertainty are what undo me on so many days.

All I can do is have faith in the mystery of medicine and the doctors who seem to be guides rather than all-knowing wizards (which might be an unfair description but what we often think of doctors as, carbon copies of the Great and Powerful Oz).

That, and, when deciding on the right thing to do, hope like hell my heart and gut know what that right thing is.

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An overdue vacation with unexpected roads

from A Mom’s World, November 26

 

 

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.

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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 to 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.

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Something to celebrate

A post from A Mom’s World, June 2011:

 

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.

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The Journey Begins…

Although this blog is new, I thought I would pilfer from my original blog to share some posts I’ve written about Mitzi and diabetes. A sort of Estes family primer, if you will. Forgive the repeats, if you are a follower of A Mom’s World, and don’t worry — I’ll be posting new things here very soon!

original post: July 6, 2010

THE NEW NORMAL IN A MOM’S WORLD

Things have been crazy around here the past couple of  months.  The whirlwind of the end of school.  Personal stuff  I didn’t feel like talking about.   Then A Mom’s World turned upside down.

See, the thing about being a Mom to four kids is your attitude shifts a little with every new child.  You get a bit casual, laid back.  If I freaked out over every sniffle, sneeze, fever or fall, I’d be in a padded room right now.  Someone around here is always getting a cold or strep throat or a cough or a stomach bug.  Ellie falls down 93 times a day — and has the scrapes to prove it.  Everyone whines and complains and takes drama to levels Arthur Miller would envy.  I’ve grown to be somewhat easygoing these past eight years.  Wait, watch, see.  Treat, comfort, move on.

So when Mitzi complained about a tummy ache, I let her stay home from school.  By the afternoon she perked up.  Two days later, the same thing.  A week later, when she was tired and short of appetite, I didn’t think much of it.  The end of the school year blues.  Ellie had strep throat the week before — maybe Mitzi had picked it up.  Nothing to worry about.  Wait, watch, comfort, move on.

The day IT happened, Mitzi, normally a very early riser, slept till 9 a.m.  Then she dozed on the couch for a few hours.  Again, she perked up for a trip to the grocery store and our final Girl Scout meeting/party, even swimming a bit.  But by the end of the meeting she was exhausted.  At home she returned to the couch.  Ray took the other kids to Ellie’s tee ball game.  Mitzi and I watched Iron Chef America.   Then, the vomiting.  Clean up, bath, bed.  By then I was a little more concerned, but assumed she’d gotten a stomach bug, maybe.

In the hours after midnight, she went downhill fast.  She drank cup after cup of water, used the bathroom repeatedly.  Time went on and she got very weak.  Her skin seemed to stretch around her bones, as if she’d somehow lost 10 pounds (that she didn’t need to lose).  Then her speech began to slur.  Had she swallowed some pills?  Gotten a concussion?  Had a stroke?

Dawn neared.  Should we take her to the emergency room and sit in the waiting area for a couple of hours?  Or stay here until we could call the doctor?  We opted for the latter.   Ray brought her to the first appointment of the morning in the doctor’s satellite office, 30 minutes away.  Meanwhile, I put Cooper on the school bus, and let the little girls watch TV.  I sat at my desk, stared at the computer, waiting for the phone to ring.  Meanwhile, the doctor took one look at Mitzi — by now unable to walk on her own or say anything coherent — tested her blood glucose (over 600), then called an ambulance to take her to the local hospital.  She was far too sick to make it to a Boston hospital.

Medicine was given in an effort to lower her blood sugar — which, it turned out, actually caused swelling in her brain.  But eventually she was stable enough to be transferred to Children’s Hospital in Boston, where she was admitted to the ICU.  It wasn’t until the next day that I learned just how scarily sick she was.

An aside here — Ray was with Mitzi the whole time.  We have one car, and he’d taken it.  In what just might be the single most beyond-the-call-of-duty acts I’ve ever seen, two angelic nurses from the pediatrician’s office drove the car to me.  They gave me information, comfort, counsel while standing on my front porch.   They are amazing people.

Of course, the story ends a happy one.  Mitzi stabilized overnight, and by morning was speaking in full sentences.  She bemoaned missing Field Day for the second year in a row (last year she came home early with strep throat).  She complained about the gazillion IVs and other gadgets hooked up to her body, and watched Harry Potter and The Spiderwick Chronicles on my cousin’s iPad.

The diagnosis of juvenile diabetes was a shock to us, with no family history or clue that it was brewing, but far less devastating than the news other families at Children’s Hospital received during the week we were there.  It could have been much, much worse.

Ray and I have quickly become adept at managing her condition.  Mitzi, in her usual first-born manner, is already the Boss, counting carbs and planning meals and testing her glucose levels throughout the day.  And true to form, she’s stubborn and demanding and tantrum-throwing when I put my foot down about having ice cream for her morning snack (“But Mom it’s got protein and fat and carbs!”  “But you can’t eat ice cream all the time.”  “You are the meanest Mom ever!”)

So things are back to normal.  Well, the new normal.

I have a great deal to say about the new normal — how it’s changed us all, how it continues to change us, how we are redefining the world around us daily.  How amazing Ray was and continues to be.  The forty-seven ways my family stepped up and helped us through the crisis.  The support of our friends and neighbors in our wonderful town.

And I’ll have a lot to say about me, the mom.   I have all the regrets and self-blame that parents experience when things like this happen.  How I should have seen the signs that are so clear when I look back on them.  How I should have taken her to the doctor far earlier rather than being so casual about the symptoms.  How I want to keep all of my children locked in a room now, to keep them safe and protected — but how I know I can’t.  How painful it is now to watch and wait and hope for the best, when before it was so easy.

Because even when you’re prepared, the worst can happen.  And sometimes there is nothing you can do to stop it.

And that is what I need to accept.  Right now, though, it’s a hard lesson that I’m not willing to learn.

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