Pulling No Punches

Those of you who have stuck around for a while know that I thrive on a sense of control over my life.  Or at least the control I think I have.  So not surprisingly, I am struggling with this newest curve ball.  My healthy, spunky, sassafrass daughter has been diagnosed with a life-long condition.  We are now a part of a huge community of families for whom Type 1 Diabetes T1D) is their new normal.

Our day of diagnosis started as many school days do.  Someone had a stomachache and a sore throat.  I called out of work with the sinking sense that one of these days I will be told not to bother coming back.  I shuttled the remaining students to childcare and then returned home to a child that seemed to be rebounding.  Was I just made a fool of?  Was she really sick.  Still the contrary "I'm so hungry!" followed by "I feel like I'm gonna be sick!" continued.  Being flu season, the pediatrician's office was not able to see her for several days.  And so, off to the walk-in clinic we went.

I ran through her symptoms and the fact that it mirrored her diagnosis of strep throat in the fall.  I explained that she was constantly thirsty lately and that no car trip was complete without a panicked search for a bathroom.  Dry mouth? Yes.  Dry skin?  Yes.  Two labs later, we were in the car on our way to the nearest medical center at top speed.  We were admitted to the children's floor and several hours later moved to ICU.  She was monitored on the hour for neurological symptoms, finger sticks for blood glucose, and shots of insulin, in between runs of insulin by drip.  I, who am deathly afraid of needles, had to learn to give my sweet girl injections four times a day minimally.   Trained by a doctor who reminded me of Mick Jagger and wore purple cat-eye glasses bedazzled with rhinestones and swore not to pull any punches.

And then, not unlike when you have a newborn and the nurse takes you to the curb and waves you off, we were released.  Us.  Ordinary, non-medical oriented people, were now going to take on this highly prescriptive and detailed medical program.  Surely there must be someone more qualified to do this?  And the 2 a.m. finger sticks.  Which really means lying awake from one on in fear of sleeping through the alarm, and then lying awake from two to four pondering the what-ifs and all the ways I could possibly screw this up.  When the alarm goes off at five, it's barely possible to stand upright, but the next shift of meal prep, carb counting, insulin calculation, medication dosing, and vigil-keeping must begin.  And the record keeping and documentation at this early stage is staggering.

Just when we started to feel we had two feet tiredly underneath us, the game changed.  Sister Middle was set to return to school.  While we are in the same building, this is a blessing and a curse.  Now, for hours on end, her care is entrusted to others who are diligently doing everything right, but my mind is constantly half-tuned to the possible ringtone that she needs my care.  That things are not status quo and that she needs to be picked up right away.  When we  have a safety drill, my thoughts go to how long will it last and will she be able to get her life-sustaining medication?

And then, as life will have it, days pass and we are lulled into a sense of security.  I start to feel that, though tired, we know what we are doing and we've got a groove going that is keeping everything managed.  And then, that naughty pancreas which took a previously unauthorized vacation, shows up for work and wants his job back.    Suddenly we are injecting insulin and her pancreas is sporadically doing his job too.  Now, her numbers on a chart look alpine steep in both directions.  And out first uncontrolled low happens.  At the dinner table.  During her sister's birthday.

911 is called.  Brilliantly talented personnel arrive.  They are calm while I am internally screaming "For the love of God, FIX it.  Make her well.  Do it now!"  They assess gently and without panic while my heart skips and my breathing hurts.  My baby girl is grey and sweaty.  She doesn't know her name for a minute.  She doesn't remember the last ten.  One of our rescue personnel, with first-hand knowledge of T1D arrives, off shift, knowing we need him.  Knowing that we will trust his every word because he has walked this walk and knows the cost of a misstep.  He is able to restore our sense that life is manageable, and along with his colleagues, leave us feeling that our world, while fragile, is not broken.

Friends have reached out to connect me with friends of theirs who have first hand experience with this  lifestyle and the hurdles it presents.  These families have in turn offered a listening ear, copies of their child's 504 plans for reference in crafting our own, a list of foods that got them through this initial culture shock.  Most of all they have offered their hearts openly, to strangers, bound only by a shared diagnosis.

What I am not able to quite process is that this is not something we do for now and life will normalize again.  Our once a year date night is indefinitely on hold.  Sleeping through the night, gone for the foreseeable future.  A mindless snack?  Never again.  Throwing something together at the end of the long day?  Nope.  Converting grams to ounces to cups to serving sizes to number of elephants in the enclosure has become the math word problem of my worst nightmares, but also the daily regime.  Stashing emergency glucose rations at the houses of our neighborhood family, along our typical walks or neighborhood bike rides, for that one day she heads out without the kit along for the ride.

And then the anger.  I was wholly unprepared for how many times I have had to walk away from someone who made a thoughtlessly insensitive comment or unknowingly confused Type 2 with Type 1; "..But she's so skinny?!")   The ones who have offered the story of how their cousin's dog-walker's nephew cured it by eating a vegan diet.  The ones who ask how I am coping with having to learn how to cook.  (Excuse me?  I have cooked for scratch for these babies since conception.)  Have they eaten junk food?  Sure.  Every day?  Nope.  What has changed is simply knowing to the number how many grams of carbs are in every tablespoon of ingredient consumed and swapping out ingredients where I can to give her meals that are nutrient dense while below a certain target.

There are those who tell me they knew she was sick before I did because of X, Y or Z.   Or those that confuse my body-state with how I care for my children.  (For the record, my shape, in part, comes from constantly prioritizing them and never taking care of me.)  To the ones who want me to know that they hope she can still one day have children, I want to remind you, she is eight.  This is lightyears from where we are right now.  To those who want me to know about foreshortened lifespans, it is not information I can take in right now.  For the person who pointed out in a forum that my child developed T1D as a result of my sins, I can only say, you are not a Christian.  God does not work this way.   Blessings to the admin who removed you and your hateful, bilious, spewing.  (And just in case He changes his mind and starts casting out conditions based on lifestyle, I hope that your combination of debilitating bed-wetting, neuropathy, and flux are worth every moment of the harm you have so freely handed out.)

And then...another school shooting.  Not one more.  No parent sends their child out the door thinking that they won't return, and I am not even going to pretend to know where the answer lies.  Do we have to do something more than think and pray?  Absolutely, unequivocally, yes.  Do we need more guns in the equation?  I'm not convinced.  Is it an all or nothing solution, unlikely.  Is it bigger than just gun rights, educational systems, building security?  For sure.  Do we need more mental health resources?  Yes.  My child was referred as a result of her diagnosis, which is now a month old, and will have her first appointment in three weeks.  That's a long wait.

At the end of all of this,  I am watching friends battle one another over gun control.  I am seeing the ugly side of our country on display and meanwhile our children will go to school tomorrow with little more than a prayer that it won't happen to us.  Not here.  Not mine.

At the end of the day, I am staggering around in my shell, trying to still be a functional adult, trying to care for these children who have not become angelic Stepford children in the face of a lifelong diagnosis and all that it brings.  I am trying to let my child still have a childhood and not be encased in bubble-wrap, because as a wise and much-loved friend noted; "She was made for more than that."  I am trying to be gentle with those I meet, for we are all battling a demon and not all are visible.

In the meantime, please don't ask me to make decisions of consequence.  Please don't expect me to be able to remember to breathe in and out all day every day.   Please know that I will tell you I'm fine, because what other choice is there?  And I'm a Vermonter, with Depression Era grandparent roots, and English stiff-upper lip in my blood.  We don't do help unless you force it on us.

But right now I feel powerless and terribly afraid.

For The Record

Every job has its share of quirks. And every profession out there is going to get its share of grief in the public media. And I get it, back to school season is kind of like shark week. It's here for a limited time and the media has to capitalize on a short window of interest.

But NBC News....$600-$1000 in back to school supplies? Where is this reality? Does it include school clothing? Is this inclusive of college textbooks? I have been sending a child, and then two, to public school for six years. I have never spent, or been asked to spend, this amount of money.

Have teachers asked for donations of supplies for their classroom? Sure. Have I donated every year? Typically. Because you know what? One box of Kleenex in my grocery cart doesn't change my household budget enough to be noticeable. But if I had to buy all of the tissues for a classroom of 20+ all year long? And the sanitizer? And the surface wipes? And the paper plates for every snack. And the snack for the child(ren) who showed up without one once (or every day)....THAT would make it impossible to feed my family. And yet teachers do fill the gaps in funding.  If everyone donates one thing to the common good of their child and his/her peers, we're all okay.  If you can't or don't wish to, that's your business, but please stop degrading schools and teachers.

Here's my bottom line. We complain about how much the pencils and tissues and binders cost. We don't complain about the cost of the fast food we order mindlessly, or the iced pumpkin latte, or the lottery ticket, the latest video game.     Where are we placing our value?  What do our children see as being important to us as parents?  What is the message?  "Go to school and learn.  Your job is important?"  Not when we are publicly quibbling over whether parents should have to buy their children pencils.  Or paper.  Or binders.

I agree.  Times have changed.  It used to be that a child went to school and everything they needed for the job was there.  Kids came with pencil boxes and pencils for the sheer excitement of new school supplies.  Unfortunately, like the Cabbage Patch Dolls of the same era, those days are gone.  And they are hard for everyone.  Including the teachers.  

What Is The Sound of One Mama Snapping?

When I get home from a long week at work, nothing makes me feel more at home than squabbling with three able-bodied children about whom will let the dogs out.  Mind you, these dogs did not sneak in during the day to surprise us.  They were here all along and typically want to go out soon after our arrival. 

Each day there is a contest to determine who can get through the door first and run off on some errand that would preclude dog detail.  One tactic is to stall outside looking at patterns in the dust and debris on the panel of the car exterior.  Some might find this mind-numbing, but to my children, the secrets of the cosmos are written there and must be studied with intense scrutiny. 

Another popular tactic is to declare that they are on an urgent bathroom mission.  Nothing and no one will get in between a child and a toilet.  However I am suspicious of the school meal plan as my children seem to both be extremely regular and need a prolonged period of time to get the business done.  Every.  Day. 

And finally, another tactic one might choose is to walk into the house, leaving car doors agape and a trail of outerwear along the way, and then look askance at any adult who might suggest that the dogs need to go out again today.  "What?" one might ask.  "What could be the matter mother dear?"  "Dogs?  Out? Didn't we do this just yesterday?  Surely there is someone else who could do this.  Maybe yourself?  I see that you have one eyelash still uninvolved in this process."

For you see, my children get into the car in the morning with the requisite coat, hat, mittens, boots and backpacks, yet return each night unaware that they must return these items to the house.  Daily, they flee the car, leaving all but their epidermis in the driveway. 
"Coat? 
"Not cold. 
"Shoes? 
"Don't need 'em...already in the house.
"Door? 
"I'm busy with the one on the fridge right now."

Which is how I came to enter the house this evening face first, and with most of my integrity on the front porch; with the contents of my work bag covering something akin to eight feet of real estate, and tripped over a beagle with uncanny timing.  It is why you might notice a boot shaped bruise on my cheek.  Because I don't always enter a room with an unnerving amount of grace, but when I do, I will definitely land on the least yielding object around. 

And, it is why, if you happen to be in a three block area of my home on any given work evening, you will hear the sound of one Mama slowly coming unhinged.

The Shape Of Things

I am one eye blink away from fighting with my daughter (again) about clothes.   With no prior notice, she went from loving cute and fluffy kitty shirts to the notion that she is a “tween” in a few short weeks and needs to have a personal style.  And she’s right-ish, but does it have to be during this particular fashion era?  I am a moment away from losing my cool over one more pair of skinny jeans with glitter and “awesome” emblazoned tee-shirt. 

 I know this is the time developmentally to fit in and camouflage oneself as just one of the gang, wearing what everyone else does, speaking their words, spouting their ideas, and watching their shows.  I just so desperately want to skip over this and get to the place where she knows who she is and marches to her drum.   And I also want to firmly place both feet on the brakes and resist with everything I have.

I know this is just the beginning.  There will love interests that irk and frighten me.  There will be social adventures and misadventures that will make me feel a wide range of emotion.  I know I will not always like her friends.  There will be life decisions that I will wish she hadn’t made.  And those of which  I am so proud it could slay me.  And it is such a mismatch between her anticipation and excitement, and my sense of loss and awe.

I want to both shelter her and prepare her.  I want to hold her and let her fly.  I want…a path.  And what I have is some hazy, water-stained, fragmented document that simply says, “This is the way it is from here.”  Splotched with the growing pain tears of mothers past who whisper “Do you understand now?”

I want her to be herself; this amazing girl that has stretched my body and my heart and my brain.  I want her to love who she is and stop trying to hide her imaginary flaws and to stop trying to create curves where biologically they are not yet meant to be.  I want to slow things down.  I want to go back to that moment when she last asked me to tuck her in.  If I had only known it was the last time, I might have stayed a minute longer, rolled my eyes a little less, and ignored the chores.  Because now it’s a thing.  If I ask to tuck her in, she’s “all good”.   She no longer needs that hug or kiss goodnight.  

But I do.

There's NOOO business, like Snooooww business....

It all began with a return to sledding.  I mean, doesn’t it always?  How many times have major life decisions been influenced by the desire to throw yourself onto a thin piece of plastic, race at a breakneck pace down a hill while adjusting your vertebrae without benefit of chiropractic school, and the desire to do so while not getting wet.  Just me?  Huh…I thought there’d be more of you.

Regardless, this year my children are all old enough to sled with little-to-no assistance.  What that doesn’t mean is that they WILL do it alone.  Just that they could.  Hence the need for bum-covering, warmth-providing, water-repelling pants.

As always, I go to Amazon.  If you cannot get it in two days from Amazon while not having to leave your house with three terrorists under the age of ten, I don’t need it.  What continues to amaze me, in no small part due to my total ignorance of how the internet “really” works, is that I can go online looking for one thing and somehow the search function will read my subconscious mind and retrieve the thing I didn’t know I needed. 

For example, in the search box I typed in “snow pants” and to my surprise what I got was certainly bum-covering, but not what I was anticipating, nor something I would have guessed existed.  Apple-bottomed derriere enhancing undergarments.  Falsies for your tush.    While this might make the downward hurtling over ice and snow less hurtful, it will not, I guarantee not, keep you warm or dry.  (Unless you simply stay inside as pants are no longer your friend.)  perhaps “snow pants” was interpreted as “no pants”?

Then comes the fun part.  Finding what you were actually looking for in the first place.  I tried board pants, which led me to something like late 80’s Jams.  And then snow bibs, which brought me to a festive array of infant covering.  And then finally snowpants.  Which brought me leggings with snowflakes. 

So here is the final search trajectory that brought me to pants worn outdoors in the snow.  Apparel ->women’s -> outerwear->snow-> athletic -> pants.  Well, that’s efficient isn’t it?  And thorough.  There was absolutely no way I was gonna stumble onto those pants unawares now was there.  If only the same could be said for the apple-tush harness of death.

Finally, there are, believe it or not, women out there that are over 5’9 and have an inseam of longer than 29”.  I know.  I know.  We should all stay inside unless we have the grace to be born at a perfect size 2 and able to wear sample sizes, however I didn’t get that memo until way too late.  I am tall in a lot of directions.

So here I am, about to don my snow pants for the first time.  They are genderless.  They are basic black.  They are ugly as sin.  But they are warm, tall, and dry.  My arse is covered and as protected as one can be just short of watching the fun from the sidelines.

And Amazon.  I’m onto you now.  The next time I need something basic, like printer cartridges, I’ll know to steer clear of anything too direct.  I’ll amble and mosey my way through all of the related search terms I can think of in the hopes of landing where I want to be on the first try. 

It's nothing. It's just....this.

Today I need a hug from my grandma. 

I woke up thinking about her and I just need to sit at her table, drink a cup of tea, and hear that this too will pass. 

Right now, there are so many "this" moments to count. My "this" is not purely political. 

 It's fatigue.

 It's overwhelm. 

 It's feeling too small to make a difference and too big not to.  

It's parenting in a world that made no sense to me a year ago, and even less now.

My "this" is seasonal.  As the light wanes in October and November so does my resilience.  My ability to be "on".  My ability to keep smiling so that all of the feelings that are too big to let out stay tightly confined under the surface.

My "this" is financial.  From fueling the car, to groceries, to keeping my children in shoes....What the What?  How did milk change price THAT much in one week?  How did bread become something to budget for?

My "this" is despair.  How can so many bad things happen to little people?  When you work in a human service field, you are bombarded with all of the good and bad that humanity has to offer.   I feel joy that there are still elements of love and respect and care.   I feel horrified and numb that in some places none of these are evident, and horrified that I feel numb.

My "this" is regret.  Regret for choices made and unmade.  Regret that I thought there would be time for that later, or that close enough was good enough.  Regret that I didn't do some things more and some things a lot less.

My "this" is loneliness.   In a busy world of people, surrounded daily by other humans, there are times that I feel truly alone.  And the depression that hits this time of year tells me this is because I am wrong somehow.  Broken.  If I were just, a bit  better I would need less, or feel less.  And it's hard to reach out because when I am in this place, I am hyper-aware of the disorganization of my house, the behavior of my children, the goldfish on the floor of my car, the extra pounds; the trappings that sum up my external life.

My "this" is variable.  For that I am grateful.  It isn't every day.  It isn't all year.  But it is real.  

I have supports.  I am lucky.  

But I also have grown to know that I am not alone.  My "this" is not your "this".  But we all carry a "this" in an invisible satchel.  Some days it's small and tucked away, and others it is being dragged along behind us, weighing us down.  Some of us are carrying many, many satchels all at once and much of the time.    I recognize your tight smile and fatigue.

So I ask of you, reach out and be kind to everyone you meet right now.  

Some of us need to hear that "this" will pass.  

Some of us need you to treat us with a little more kindness for just a little while.  

Some of us will promise to call, but cannot pick up a phone because we are afraid "this" will fall out.  

Some of us need you to smile at us, provide a kind port in a wild storm.

Some of us are temporarily stuck in the "this" abyss.