The Edgpark Order that Won't Die

We placed our initial Edgepark order in March. The details of that ordeal are here, if you'd like to read the beginning of this story.

I returned two of the three items in that shipment on April 11th, using the return label sent to me by Edgepark, because they were not items my daughter uses, nor were they the items prescribed.

I subsequently received a bill for the Verio Test strips I'd returned. When I called, the representative said to disregard the bill. Edgepark was in the process of 'billing the return' with our insurance.

Ignore it I did, along with a couple of subsequent, identical bills I received in quick succession.

Mid-summer, after another bill, I called and was told again to disregard it.

Fast forward to the beginning of this month. I placed an order for a new Dexcom G6 system.

I then received an email telling me I had an outstanding bill. I called and was told once again to disregard it.

Two weeks later, I followed up, since there'd been no word on the G6. They'd just processed the order with the doctor's prescription, I was told, and it would be shipping from the Ohio warehouse within 24 hours. It would be at my house by Friday via FedEx. It was very specific information.

I then received another bill, for a higher amount than the previous ones, and a subsequent email warning me that no further orders would ship until I had resolved my delinquent account with the Edgepark billing department.

So I called. Yes, I was told, they had 'billed the return' and refunded my account $63.60 for the test strips. I acknowledged that as a good start, but then noted that I had paid them $288, and that they were now sending me bills for over $400. It was an unproductive conversation which ended in the representative telling me she was sending March's whole order and subsequent billing back for a 'full review.'

So, did that mean my upcoming order would be cleared to ship? "Oh- yes - that wouldn't have been on hold anyway."

Today, still no word on the Dexcom, so I went onto the patient portal to check the status. There were 'urgent alerts' posted warning me that no further orders could be processed until I paid my outstanding bill of what was now two hundred-something dollars.

An hour phone call, piles of explanation-of-benefits and bills reviewed, and lots of math later I agreed with the billing representative that the current number was correct. In (very) short, the original billing on the one item I did keep (Dexcom G4 sensors) was also incorrect, not in my favor, and that error was reflected on a subsequent explanation of benefits in July. After the whole day's bills were sent back for review, my account was credited with the rest of the Verio money Edgepark owed me, in order to pay for part of the cost of the Dexcom sensors. I still owed the balance for those supplies.

I paid the bill then and there on the phone.

My daughter's Dexcom G6, the third person in so many weeks told me, is on its way. She's, once again, really looking forward to getting it. It seems highly unlikely to me that there isn't at least one more phone call involved in this. And then, of course, the next set of bills...

Stay tuned.

And if you have a choice to get supplies from someone other than Edgepark, do.

After Midnight

"Mom?"

"Mom?"  My eyes must have opened slightly, or I mumbled something.

"Something's wrong with my pump."

And then I was awake.

"It was beeping when it woke me up … booEEp, booEEp … but now it's dead. Nothing happens when I push the buttons. And it's hot."

It was the wee hours of the morning. We were on vacation in a cottage near the beach.

"Ok- let's see."

I got up and followed her back to her little room where we turned on a light and set to work.

Hoping the simplest explanation was the right one, I took out the battery, using a coin from the pile on her bedside table set aside for an expedition to the penny candy store. The battery was hot.

I inserted a new battery and screwed the cap back on. I prayed, thought good thoughts, and implored the diabetes gods for mercy. The pump would spring back to life. We would not, in the middle of the night, on vacation, have to go back to injecting insulin for the first time in 13 years.

Time stood still for an infinite moment and then, there it was, the familiar alien-like startup beep of the Animas pump. I confirmed, when prompted, the battery type, and the date and time, which were reassuringly still correct. Then, as the pump requires with every battery replacement, I set in motion a full rewind of the cartridge area. Knowing that the full rewind also signals the pump to perform a full system check I once again sent out pleas to the universe that a pump failure would not, please, be among our vacation memories.

The motor whirred. And whirred. And whirred. And then...

"beep!" Just the usual, friendly little 'I'm ready,' beep. I finished the process and my daughter reconnected.

Still more than a little freaked out, and now wide awake, I photographed every pump setting, not sure if my most recent records were recent enough. I tucked my daughter in and returned to bed where I lay; not at all optimistic that the crisis had actually been averted. I considered all of the options for obtaining a replacement pump if need be. I sorted out what I could remember about multiple daily injections. I tried to figure out what had happened in the first place. I got up twice to make sure her blood sugar was staying steady- that the pump was still working correctly.

In the light of day, with the pump working properly again, the explanation seemed fairly logical. The hot battery was familiar from times we've changed it after the 'I'm going to die in half an hour or less' warning. The initial low battery warning, indicating a couple of days' power remaining, had been visible on the pump for at least most of that day, my daughter said, and she'd planned to change it during the next day's site change.  But it's possible it had been there longer, since we were in vacation mode and, as is our custom, paying less attention to diabetes than usual while enjoying vacation things. Or maybe the battery died a little faster than usual with all the extra use for vacation food. Maybe the pump alarmed for the full half an hour foretelling its imminent demise, and simply didn't wake my daughter from her vacation-induced deep slumber - we'd been out late and came home tired.

All that really matters is that the new battery continues to work just fine, a couple of weeks later, and we were able to enjoy the rest of our vacation.

A Long Night

It's 10 p.m. The teenager has been home for an hour from band practice. She has showered and is thinking about going to bed. She checks her blood sugar in order to calibrate the Dexcom.

"WHAT?!?!"

The parents watch warily from the couch while the teenager gets another test strip and rechecks her bg.

"WHAT IS GOING ON??? HOW IS THAT POSSIBLE??? HOW DID THAT HAPPEN???"

The teenager is distraught.

"Mom...can you help me do a site change so it goes faster? APPARENTLY I'M 485."

The mother rises wearily from the sofa, her plans for quiet time with her book followed by a good night's sleep dashed. She fetches a large glass of water for the daughter, in hopes of keeping ketones at bay.

"Yup. Drink this first. What happened do you think?"

"I DON'T KNOW!!!"

The teenager is grumpy, irrational and teary. Probably because of the blood sugar of 485. She gathers herself for a moment.

"I don't know... I was fine at dinner - 130 something. I don't remember Dexi alarming at band but it must have. It alarmed again a little while ago. But not that high. It's been iffy all day- it's like 10 days old - but I didn't know it was that far off and now I'm really high and I don't know WHY!"

The mother and teenager go off to the teenager's room to change the site. The chain of events leading up to the current situation is reviewed.

"I bolused dinner - I'm sure..." opens the pump's memory and double-checks "yup- and it wasn't a lot of carbs and you used the measuring cup. And then I just went UP! And I didn't eat anything at band- I just drank my water and I never had anything when I got home and now I'm SO HIGH FOR NO REASON."

When the site is removed the cannula is gunky, clearly clogged up. The mother thinks out loud.

"I don't think, in 13 years of pumping, you've had a pump site conk out that quickly. Usually they take a gradual turn for the worse, but this one seems to have suddenly and completely stopped working. That's the only logical explanation to go from 130 to almost 500 in 4 hours."

The teenager curls up on her bed, nursing her second pint of water. She is clearly miserable. She complains of a headache.

"... not just in one spot but like...my whole head...it just hurts...it's awful."

The mother initiates calming conversation … a friend's new puppy, a funny story someone posted on Facebook. Eventually, it's been 30 minutes since a correction dose of insulin was given. The teenager rechecks and is now just barely over 400. She gets up to brush her teeth and finish preparing for bed. The Dexcom alarms... FALLING! … and hope increases that the correction dose will work.

The teenager goes to bed. The mother gets to read her book, but for much longer than she'd intended, staying up until 12:30 a.m., when the blood sugar has dropped to 230-something.

The mother is awakened at 2 a.m. by the Dexcom alarm (which is now, incidentally, spot-on again) and gives the teenager some juice for a bg of 76.

The father gets up at 3:45 to give more juice for a bg of 68.

The family gets up in the morning. The teenager has a bg of 77. They are all tired. They are all grateful for the discovery of insulin. But moreso now for the discovery of caffeine. .

Dear Diabetes

Dear Diabetes,

Please stop.

You have had your fun.  Now please leave us alone. 

The blood sugar of 400 after dinner was sarcastic, no?  Yes, we forgot to bolus for the little baked potato until after it had been eaten, but a bg that high for maybe 15 missed carbs?  Get a grip.

Then you showed up at gym the next morning.  You and gym had finally started to get along I thought.  But you threw in a random 40 to start the day. Why? 

Oh- yes.  I remember.  So that my kid could have a moment to ask the nurse about the next day's standardized testing plans.  Where would she be taking it?  What were the accommodations for you, diabetes? This question ended in a lunchtime meeting with the guidance counselor, a series of emails and still no firm answer.  We'll have to go with the flow for this one it seems, partly my fault for not taking note this test was coming and asking earlier. But we would've gone with the flow anyway, without having the opportunity to ask the question and waste an hour of the day with stressful communication about the answer.

As if the testing question fiasco weren't enough, the low also resulted in missing most of Spanish class, where the assignment to do a project on a famous Hispanic person was handed out.  By the time she got back to the classroom Big Papi and Freda Kahlo, her first choices, had been taken.  She chose Pedro Martinez, but while the choices on the original list included links to articles in Spanish to work from, that wasn't the case for off-the-list options.  So while the class had the opportunity to complete most of the initial portion of the project in class, my daughter spent an hour at home finding an article in Spanish about Pedro and answering questions.  On a night she was supposed to have no homework due to the aforementioned tests.

Diabetes, we've had enough.  We see you.  We hear you.  We feel you.  We get it.  You've got power to derail any day you want to.  And you did.  You won the day.  Please go somewhere else to celebrate.

Respectfully,

Us

Teenage Thoughts Interrupted

This is only a sample of what I imagine is circling through my daughter's mind, on repeat, every day:

when am I eating next
4x+y=47...where do I start
what's my blood sugar
when is that English essay due
we're running in gym today so I might be low
I wonder if Molly can come over after school
I'm sitting for an hour and a half in the assembly- I'll probably be high at lunch
I love the new Nick Jonas song
the school schedule changed for the day so lunch is really early- that'll mess up my blood sugar
should I get a new mirror in my room
should I have dinner before or after tennis so I don't go low
my piano recital is on Saturday
is it site change day
which dress should I wear for 8th grade graduation
why am I high
I need to get something for grandpa's birthday
should I ask all my friends to stop and wait for me while I check my blood sugar
why are my friends arguing over where to go for lunch on Friday
how many carbs are in this dish of Italian ice
are the Red Sox on tv tonight
should I correct again or will I crash because I might only be high from being nervous about the quiz
when are auditions for the summer musical
did I silence the dexcom or is it going to alarm during the concert
maybe I'll call my cousins tonight
why are there no clean measuring cups so I can measure my rice for dinner
that panda video is adorable
should I go to the nurse for this 69 blood sugar or just eat a couple of glucose tabs at my desk
should I ask for a new phone case
I need more dexcom tape
maybe we could shop for shoes for the 8th grade dance this afternoon
I have to bring more juice boxes into school tomorrow for the nurse's office
does the library have the book I'm waiting for yet
where did I leave the meter
is it my turn in words with friends with grandma
I have to remind mom that we need to reorder the pump supplies
should I post a selfie on Instagram today or is it too soon since the last one
maybe I'll just have cucumbers and hummus for snack so I don't have to count carbs
I'm so excited about this ancient Egypt history project
I can hear the alarm but where did I leave the dexcom
this box of tic tacs is almost gone

Two-fer

Over the past month or so, my daughter's pump screen has been getting progressively dimmer.  At first, I thought I was experiencing yet another symptom of being 40-something.  But soon my daughter was complaining about it too.  Procrastinator that I am, I figured I'd find the time to call eventually.  The final straw was when the screen got to the point where we barely see it outdoors.  I called Animas on a Friday afternoon.

"We'll overnight you a new pump," the technical support person told me after a couple of her suggested quick-fix tricks were unsuccessful.

The pump arrived by 9:30 on Saturday morning.  I carefully transferred all of the settings from the old pump to the new one, double and triple checking my work like my third grade math teacher always insisted.  The last step was to pair our current meter remote with the new pump. I successfully paired the two up, with their screens showing each other's serial numbers, seemingly as a mark of true love.

Fast forward to lunch.  "What's going on?  Why won't this work???" my daughter grumbled as I washed the grapes.  "When I put the strip in, I get the timer thing-y and then the screen turns black and then the thing just turns off."

We took the batteries out and put them back in again, and tried a different vial of test strips.  We could power it on to check the history but once a test strip was put in, it shut down.

After lunch (don't fret- we have an extra meter or two kicking around- she was perfectly safe), I called and explained the situation to a person at Animas with the title, "meter specialist."  The meter remote would have to be replaced too. "Will not accept the test strip," was the specialist's official diagnosis.  I think it was broken-hearted at the disappearance of it's old pump partner myself, but the guy at Animas is the expert of course.  Meters being apparently less important than pumps, I was told the replacement meter was to come on Tuesday, signature required.  I tried to negotiate this detail since the (significantly more important and expensive) pump did not require my signature, but it seemed there was no choice.

"Put a black x on the back of the meter before you return it," the meter specialist requested.
Should we have held some sort of service of remembrance while we did so?

Tuesday came and we were more excited than we expected to be.  We missed the remote features, particularly at night if a correction was needed.  Rolling a sleeping 14 year old over in bed to find her insulin pump was no easy task.  Noon came and went- no meter.  My daughter came home from school at 3:15.  "Did the meter come?"  Nope.  At 5:30, I called Animas.

"It shipped and my tracking number shows it's out for delivery.  Let me give you the number too.  It should come tonight."

My husband came home, we ate dinner, and soon it was 8:15.  No meter. He called UPS with the tracking number.

"I'm showing it's on a truck and the truck is still out. Our days are already running long because of holiday shopping."

"I understand that," my husband said, "but this is a medical device for a child who is eventually going to bed...I'd like it to be here before that happens."  The UPS customer service person could offer nothing more than sympathy.

My daughter climbed into bed around 9:30 with her book.  At 9:45 (AT NIGHT.  PM.) the doorbell rang and my husband signed for the meter I'd been at home waiting for since 8 a.m. and which, according to the UPS tracking system had been on the truck since 4:30 a.m.  We set up the meter and paired it with the pump. They've gotten along splendidly ever since.

I hope, at least, that the previous pump and meter were reunited and that they will be laid to rest together.

Awareness of the Need for Support

When my neighbor's husband died suddenly a couple of weeks ago her driveway filled with cars.  The florist truck was on autopilot to her address.  People arrived carrying trays of food.  Her mailbox was full of cards.

As I pulled in my driveway this morning after school drop-off, she was leaving her house alone, headed for a day of work.

When my daughter was diagnosed with diabetes during Christmas week 2002, we were surrounded by support.  By the time we'd returned home from the hospital,  Santa and his helpers had filled our living room with toys.  There were cards and phone calls from afar.  Relatives and local friends brought us food and kept us company as we adjusted to this new and challenging way of life.

When my daughter called from the nurses office because she was low, again, last Friday, nobody was around to offer a hug.

My neighbor's grief has not gone away because three weeks have passed.  Similarly, our family's need for support has not gone away because nearly thirteen years have passed.  Both have become less visible, and less urgent.  But we'd be much better off not traveling this road alone.

November is Diabetes Awareness Month. Grateful that raising awareness is not up to me alone, I intend to narrow my focus down to just a few avenues of awareness-raising.  One area I've struggled with over the years is being open with even our closest friends about what living with this disease is really, really like.

Therefore, my personal goal for this November is to be just a little bit more candid about the frustrating, scary, and painful parts of having a child with diabetes.  Maybe just once when I meet up with a friend and she asks how I am, I'll go ahead and share that I was up half the night treating low blood sugars.  Or maybe I'll one-up a story of a cantankerous teenager with a description of what happened when I attempted to engage my child with a 300+ blood sugar in conversation yesterday afternoon.  Maybe, given the opportunity, I'll even share that there are aspects of having a kid with diabetes which terrify me.

Friends and family are no longer at our door offering hugs and asking how they can help.  The major crisis has long passed.  We appear to be doing just fine: good grades, extracurricular activities, nice friends, weekend adventures.  But it's my goal this month to raise awareness among those who care most about us that it's not all rainbows and unicorns.  That we still need their support.

Where My Rope Ends

The phone rang at 10:30 in the morning again.  I spoke with my daughter, trying to calm and reassure her as she finished her juice box.  When I hung up, there were tears in my eyes.

This kind of reaction doesn't happen often for me.  I'm ordinarily even-keeled and able to roll with the punches diabetes doles out on a daily basis. 

It's not the dramatic, emergency-type  moments that send me over the edge.  I'll treat a 30-something with great calm, and move past a night of high post-birthday cake blood sugars with a deep breath.

It's when I can start to see it in my daughter's eyes, or in this case hear it in her voice, that I lose it.

This was the fifth or sixth time she'd had to leave music class or gym (back-to-back favorite classes) to treat a low blood sugar.  It was the third day in a row.  She was mad. 

I'd been making what I thought would be helpful insulin adjustments. I'd even downloaded the Dexcom, which is a rare event around here.  But there she was.  With the nurse, while her two friends worked on the guitar trio as a sad duet.

And I sat less than a mile away, helpless, wishing things could be different.

A Break

The circumstances were not great. My daughter and husband ended up traveling without me over Christmas. A local relative needed me close by. They were gone for 3 days and nights during which I spent good quality time including playing many games of Scrabble with the aforementioned relative, caught up on my reading and binge watched HGTV.  It wasn't the worst Christmas I've ever had, nor was it the best.

What was unique about it was going 3 days and nights without diabetes.  This is a luxury my daughter and millions like her may never have.  As a  parent, I've never had it either until now.

The sleep was the highlight.  I can't remember the last time I slept through the night more than 1 night in a row.  Except maybe when I was so sick I couldn't haul myself out of bed anyway.  It's truly amazing what 3 nights of uninterrupted sleep can do for a person.  I felt rested when I opened my eyes.  I felt less scattered. I didn't yawn throughout the day.  I didn't even finish my usual allotment of coffee in the morning.

Perhaps it was a combination of the sleep and the lack of diabetes questions (o.k.- and maybe being home alone), but my concentration improved.  I read for hours without moving from the sofa.  I started and finished a few small projects without jumping between them or leaving them for another day.  I got up, made coffee, ate breakfast, checked the news and left the house without doing a single math problem.

I ate 10 meals without counting a single carbohydrate. I had lunch out without menu negotiations or french fry approximations. I ate a bagel without anyone looking at me with sad puppy dog eyes because she knows they're horrific for her blood sugar and she only indulges about twice a year.  I snacked without making two equal bowls of 12 carbs of crackers to go with the hummus.  I ate at 4 in the afternoon once, and 7:30 at night the next day.

I often wonder where I'd be if diabetes hadn't entered the picture.  This was just a small glimpse of the possibilities.  Evidence shows I'd be well rested.  I'd get more accomplished in a more orderly fashion.  I'd have time to read.  I wouldn't count my food.

I sure missed the kid who has the diabetes though.  I'd give up bagels forever for her.

Enough Already

Here's an abbreviated list of things I wish I never had to do again:

-Hear my alarm clock at 2 a.m.

-Receive a text that has only a blood sugar number in it.

-Answer a call from the nurse's office.

-Hear "I feel low."

-Do math before my first cup of coffee or in the midst of a party.

-Lug pounds of diabetes supplies through a museum or up a mountain.

-Worry whether my child is passed out somewhere.

-Explain type 1 diabetes.

-Argue with a pharmacist, insurance company representative or medical provider.

-Support my child through a disappointment or frustration diabetes has caused her. 

This parenting a child with diabetes job is intense and unrelenting. Being responsible for keeping another person alive,safe and healthy is a stressful job. It involves countless physical, mental and emotional tasks every day. I must also help with the math homework, do some laundry, make dinner and provide sufficient regular-people parenting support to a 13 year old.  In my spare time I should surely contribute to society in some productive way.  Then I need to get out to see the latest movies, read the big novels, exercise, and make time for the rest of my loved ones.

I've heard diabetes described as a juggling act among carbs, insulin, activity and multiple other factors, and it's a good  metaphor.  There are occasional days when this juggling act seems possible.

But then diabetes throws in a knife or a flaming torch and all those other balls must instantly lose my attention.

One Of Us Is Happy To Be Home

To celebrate my daughter's 13th (ack!) birthday, we spent a long weekend in Washington D.C.

We stayed in a lovely downtown hotel.  We walked everywhere and once we got to our destinations, walked some more.  We toured the Capitol and visited countless monuments and statues including a trip to the top of the Washington Monument. We enjoyed a few Smithsonian museums and got pictures of the White House from every allowable angle.  Our only Metro train trip was to the National Zoo where Bau Bau, the baby panda was adorable.   We ate in a couple of incredible restaurants, and on the actual birthday we ordered room service breakfast as a very special treat. We had an amazing time.

Except...

She was low at the Library of Congress, the Jefferson Memorial, the National Archives, the panda exhibit, and on many street corners.  She was high, and drinking contraband water, in the Capitol building and at the top of the Washington Monument.  And here's a hint: don't eat a room service continental breakfast complete with a yummy cinnamon roll and then get in the car for several hours.  Your birthday morning will be spent in a haze of dexcom alarms, people handing you bottles of water, and highway rest stops.

I can't remember a vacation Diabetes hated more than this one.  The Dexcom graph looked like a never-ending roller coaster.  High right after breakfast.  Low by 10.  Creeping up by lunch, then high-ish by 2. Crashing by 4.  High after an incalculable restaurant dinner (with dessert!!!) but coming down alarmingly quickly during the walk back to the hotel.  Or the complete opposite, depending on the day.

Most frustrating was that we were actively trying to prevent these swings.  She checked often.  Dexi was a constant companion.  There were temp basals and calorie king app checks and taste tests of foods to judge their contents.  Yet we were left wondering if the end result would have been just the same if we'd put in much less work.

We kept going, with our usual 'diabetes isn't going to stop us' attitude and enjoyed the capitol to its fullest. My daughter was a trooper and despite feeling the effects of those highs and lows, kept enjoying everything she was seeing. The only thing I wish we hadn't seen so much of were the city's benches and stone walls.

Um...Yuck?

"The granola is 10, the blueberries are about 5.  That was the new brand of soy yogurt.  How many carbs were in the container?"

As I turned around from giving the smoothie one last whirl, I found my daughter elbow deep in the kitchen trash.  Holding the yogurt cup delicately with 2 fingers, she said, "27" before dropping it back in and turning to wash her hands.

It wasn't the first time this scene has played out here.  Generally, though, I'm the dedicated trash picker. What particularly struck me about yesterday's episode was my child's nonchalance about diving in herself.

Add it to the long list of peculiarly unpleasant things we do for diabetes' sake.

We pick the trash.

Time Suck

A sampling of annoying events from the past few summer days:

I received a lunchtime phone call from the beloved nurse-free music program.  "I'm 72.  How should I bolus?"  The question took several minutes to sort out.

While at the pool, she had to stop to disconnect or reconnect her pump while her friends were already running for the diving boards/ping-pong table/snack bar.  This scene repeats several times daily.

She had to leave her friends in the pool to treat a low blood sugar.

We delayed leaving for the pool to replace the tape on the Dexcom.

We delayed leaving for music to add tape to the Dexcom.

I spent half an hour online searching for tips to keep the Dexcom stuck when frequently submerged in a swimming pool, lake or ocean.  (Suggestions are still welcome...).

We expected to do a quick site change, only to find that the pump battery needed to be replaced and the supply of wipes needed to be replenished from the downstairs closet.

A desire for a summer peach turned into an ordeal involving the food scale and the calorie king app since it was the first peach of the season and we couldn't remember the carbs.

A group of friends descended on the kitchen for a snack break.  She was the last to eat, as usual, since she had to stop to check her blood sugar, read the nutrition label, and bolus for her food.

A cure and/or a bionic pancreas will some day dramatically improve my daughter's health.  That, in the big picture, is the reason we want these things.

The other benefits are indisputable though.  When the day comes, we'll go through every day without any of these kinds of stops and detours.  She'll stop being the one lagging behind at the pool.  She'll dive into her friend's pantry right along with everyone else.  Diabetes won't delay the fun.  We can't wait.

What Brings Me Down

Today's topic: May is Mental Health Month, so now seems like a great time to explore the emotional side of living with, or caring for, someone with diabetes.  What things can make dealing with diabetes an emotional issue for you and/or your loved one, and how do you cope?  More  posts on this topic can be found here!

What brings me down as a parent of a child with diabetes is when the disease impacts what my child can and cannot do.  With her cell phone, insulin pump, Dexcom and growing self-awareness, my daughter is now able to do most things other kids her age do.  But not always.

A couple of weeks ago, I wrote about having to say 'no' to an overnight birthday celebration at a friend's vacation home two hours away.  If you'd like to read the whole story, it's here.

Looking back on the post, it tells the story from start to finish.  It explains the logic of our decision and touches on the difficulty of making it.  Yet the emotions are not adequately conveyed.  I mentioned tears, but the whole thing was a real downer.

Reading the invitation?  Deflating.  Anxiety-producing.  Disappointing.  Saddening.

My daughter's reaction?  Like the stages of grief.  They were all there, though not necessarily in order:   denial, anger, bargaining, depression and acceptance.   Fortunately she moved through the whole thing in under an hour, but she was and still is deeply disappointed she can't be there.

How do we deal with it?  With this situation and others like it, we tend to combine two tactics to face the curve balls diabetes sends us.

One, I suppose, comes from our stoic New England and Pennsylvania Dutch roots. With this party invitation, as with other situations in the past, we didn't dwell on it. We had a little cry over the whole thing and unleashed a healthy tirade over diabetes' awfulness.  Then we had lunch.  What else was there to do?

The second is the fun part.  It's the 'when life gives you lemons, make lemonade' idea.  No, she can't go to the party, but we did arrange a fun sleepover at our house for the same night, and there's likely some mini-golf on tap for the weekend as well.  Is it as good as the original opportunity?  No.  But fun will be had, gosh-darnit.

Diabetes can be awful, painful, isolating and depressing.  It takes conscious effort every day to keep it from taking over our household.  Some days it takes everything we've got.

We Had To Say No

"You can do anything other kids can.  Diabetes can't stop you."  For the past 11 years, there have been very few exceptions to that rule.  This time, though, we had to say no.

My daughter was invited to a birthday celebration, overnight, at a friend's vacation home two hours from here.  This (very brave) family invited eight or nine girls to come celebrate.

Let me begin by saying how happy I am that she was invited.  I'm always incredibly grateful when no assumptions are made by other people about when and where diabetes becomes an obstacle. No matter how difficult the ensuing conversation was, I love that my daughter was included.

I thought carefully about this invitation before telling my daughter about it, weighing how to approach the conversation.  In the end, I let her read the invite, and respond however she chose to.

"That sounds so fun.  I don't think I can do it, though.  I wish you could come too. But that might be weird."

"I wish I could too, but even if it wasn't weird, Daddy and I set aside that Saturday for {insert awful activity daughter would love to have an excuse to get out of here}. I'm really sorry."

As I said, I considered the possibility carefully. Maybe she could do it.  She could text me pictures of the food.  She'd be wearing the Dexcom.  She's responsible.  She's 12!  Then came the what-ifs, and they were plentiful.   What if the pump site failed?  What if the Dexcom conked out?  What if she forgot to check often or missed the Dexcom alarms since she was having so much fun?  What if she needed glucagon?  What if she ate more or less or differently than what we agreed on?  What if she forgot to plan ahead for activities involving exercise? What if her low blood sugar symptoms got lost in the chaos of a crowd of partying tween girls? I would be 2 hours away, a 4 hour round trip.  For over 24 hours. She's only 12!

The birthday girl and her family are great people. But while our families have spent time together, my daughter hasn't spent time alone with them. There would be a big learning curve, diabetes-wise.  A party at their house a few blocks away?  Absolutely.  Two hours away?  As much as she wanted to go, even my daughter knew this was impossible.

We talked at length about all of this.  It precipitated a conversation about when something like this might be possible.  We came up with a list of things to work on.  They include being able to do her own site change, knowing how to give a shot if she needs to, becoming more proficient at and confident in counting her own carbs, actively planning for periods of exercise, and consistently responding to alerts on her Dexcom.

My daughter finds this list overwhelming.  Understandably.  But then we looked back.

"Three years ago, did you ever think you could go to a sleepover party?"

"No."

"And now you've been to a few.  Did you think you'd be able to go to things like the school social or a movie and pizza birthday party without me there to help you with your diabetes stuff?"

"No."

"Six years ago, I came and stayed with you at almost every playdate.  Look at all you've learned to do. You'll figure it out, when you're ready.  Soon enough, something like this will be no problem.  And until then we're here to help you as much as you need."

The conversation continued with a tirade about the awfulness of diabetes, a few tears, and the promise of finding a few minutes of fun amidst the aforementioned boringness of the weekend in question.

In the end, I think we made the only decision we could.  We had to say no. I wish it were otherwise.