How We Got Here – Part 1

On Monday, June 18, 2007 – the day after Father’s Day – our lives changed forever. (The week before, my two-year-old daughter had been guzzling water and saturating diapers at night, waking up during the night for water and falling back to sleep clutching her sippy cup.)  She slept til 10 and refused breakfast, settling into my lap only to fall asleep again until about noon.  When she woke again she was drowsy and limp, her breathing quick and  shallow.

An hour, a short exam and finger stick later – the pediatrician dropped the bomb on me.   My sweet, beautiful little girl had Type 1 (or Juvenile) diabetes and would need to go to a hospital immediately.  I felt all the color drain out of me and my knees went weak, right before she vomited all over me.

Over the next several hours spent in the emergency department at Reading Hospital, I cried intermittently, trying to be strong and not scare the hell out of Owen – who once again had a front row seat to another family drama.  Thank God my mom was there; I had a premonition that this could take a while (little did I know).  She kept Owen occupied and fed until she finally took him home around 7.  He hugged me goodbye as my eyes filled with fresh tears, and asked me if his sister was going to die.

Ava was hooked up to every imaginable machine, a vision of a parent’s worst nightmare, with various IVs attached to her arms – she clung to me, my tiny daughter, sweaty and limp and crying.   Nurses were coming and going, checking her vitals and drawing blood and putting up more bags of IV fluids to hydrate her.  At some point they told me they were starting an insulin infusion and I wanted to scream “no!” – “no! no! no!”  For I knew this meant there was no turning back, and I just couldn’t wrap my brain around it.  And I had the enormous responsibility of calling my husband on his long way home from work – the only time I could reach him – to tell him where we were.

The Children’s Hospital of Philadelphia has their own transport team, who were amazing, who swept in there and took immediate control – I felt a profound relief wash over me as they wheeled her  into their waiting ambulance.  And, nine hours after our ordeal had begun, we arrived at the Pediatric ICU to a room oddly bustling with people and activity at 11:30pm: paperwork, hooking Ava up to the machines next the bed where I would lie with her for the next 36 hours, settling her dad into the parents’ couch/bed.  With a mascara-smeared face and empty stomach, I was in for my first sleepless night in our diabetes journey. 

There were hourly nurse visits – checking blood sugar, running blood tests, taking away saturated diapers and, my personal favorite, rousing her and checking her pupils for signs of unconsciousness or coma.  It seems brain swelling is a very real complication of diabetic ketoacidosis (DKA) which can lead to coma or worse; my daughter, whose first blood sugar reading was over 400 (normal is around 80), had DKA (a condition caused by continuously high blood sugars and the resulting acid buildup in the body- ketones) and was a very sick little girl.

She improved remarkably fast over the next twelve hours and was soon awake and smiling, talking to us and loudly protesting the poking and prodding of strangers, then slipping into that mind-numbing screaming hysteria that made her hoarse.  It was amazing, though, how that insulin transformed her.  I’ve heard this from many other parents too, “it’s like, I’ve got my child back.”

We were soon moved out of the PICU and onto the Endocrine floor where we spent the next three days in a diabetes crash course, learning how to test her blood sugar, how to count carbs, how to draw up insulin into a syringe and give her a shot.   And not just one shot – she would have to have between 3 and 5 shots every day.  I felt faint as I held the first shot I ever gave her – my hands trembling – and she, defeated as she was, didn’t fight it.  But that was to change after we got home, where every day three times a day I’d have to chase her around the house and hold her down (kicking and screaming) to give her insulin shots.  

My journal entry just four weeks later:  We live in our own private hell.  And I’m so angry – resentful of all the parents who take their easy lives for granted.  Like we used to.  We can’t go anywhere without planning ahead: pack the glucometer, test strips, lancets, juice boxes and snacks, CakeMate and Gluco-Gel, and Glucagon for the worst case scenario.   I feel so isolated – while people ask how we’re doing I feel like they have no idea how serious this  all is, or how devastated we are – what kind of unique hell it is to have a 2-year-old insulin dependent AND stubborn child who fights every injection that she needs to preserve her life.  How many can understand one of the hardest things any parent will ever have to do – to literally be responsible for keeping your child alive every day?  Forever.  Never again will I have the freedom from worry over my daughter’s health and safety.



 

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Priorities and Doubts

Ava wants to make sure I put everything on the list – “if I don’t make a list, Santa won’t know what to get me.”  “Will you give it to him?  I don’t want to see him because I don’t want him to hug me…. so I’ll just wait in the car.”

And, while we’re at it, Ava would really like a baby sister.  (She’s asking us, not Santa, btw.)
“And she can sleep with me so she won’t be scared.”  I tried to explain to her that I really don’t think there will be any more babies in this house, but she asks “why?”  She asks because she hears the hesistation in my voice – she hears what I never say out loud, that I really did want another child, what feels like the missing piece of a puzzle I’d made up in my mind 25 years ago.

As I sorted out all the baby clothes two years ago from a collection of seven Rubbermaid totes in the attic, deciding it was high time I drove it over to the consignment shop, I felt nauseous and slightly dizzy.  How could I part with my first born’s newborn sleepers?  The outfit he wore in his first Sears portrait?  Everything in those boxes contained a physical memory of the baby he was:  the early, before-sunrise feedings by the Christmas tree, the lazy days spent on the couch cradling him in my arms, his first real foray in the snow outside our apartment in his $80 Gap snowsuit, the swimming trunks he wore while he clung to me in my dad’s pool, the clothes he wore at a Christmas Eve dinner where he charmed everyone around us and me – the joyful recipient of his newest skill – kissing.

The clothes had not only the sentimental value, I argued with myself, but economical as well – what IF we had another child?  And we also had tons of girl clothes too – as my mother-in-law, the mother of only two boys, thought she’d died and gone to heaven and rushed right out to the Bon Ton.  In the beginning of my purging exercise, though, it seemed easier to part with Ava’s clothes, so sure was I that if there was a baby #3, it would be a boy.

The eeriest part of all this came when I was sorting a box of Owen’s baby clothes with Ava – she was pulling out things and announced that “this is Mason’s.”  I felt the hair stand up on the back of my neck.  For those who don’t know, Mason was the first name we had picked for Owen, before we decided on the name he was given.  We had figured then that “Mason” would come later.  Ava never knew this.

Today, though, Ava is convinced that she will be getting a baby sister.  The first time she brought it up, I just listened to her rattle on about how she would hold her and feed her, but not change her diaper because “I don’t really know how to clean up poop.”  After two days I felt it was important to explain that while it would be nice, it is not likely.  My cling-on daughter seemed undaunted by the idea of being separated from me for a few days, that “daddy can take care of me, ” if it meant she’d get me back with a bonus.  I felt compelled to explain all the “cons” of a new baby in the house – including the incessant demands of a newborn (but hey, I’m already up all night, right?)  a rather large and inquisitive dog who hasn’t yet mastered  “down” (who, by the way, was insanely jealous of the baby kitten I once held), not to mention the very real possibility that she could end up a he. 

What I do not say is what she cannot yet understand.  That I worry about my “advanced maternal age.”  I was 35 when I was pregnant with her and that seemed to be a big deal in the medical community.  That the joy of discovering she was a girl was overshadowed with worry over the choroid plexis cysts she had on her brain (apparently not uncommon and resolve themselves) and her right renal dilated ureter (more worrisome) – all markers for outcomes we never hoped to ever think about.  That I was knocked out by round-the-clock morning sickness for 16 weeks, seven longer than with my first child.  That while I enjoyed the overall pregnancy experience, I still cringe with memories of her lightning-fast delivery.  That I can never forget us standing over her bassinet just two hours after her birth, anxiously searching her face for reassurance that she was normal.  That I can’t forget the 45 minute car ride home, the worry and the tears we shed over the news we’d need to see a CHOP specialist for her dilated ureter, now named hydronephrosis.

More than that, more than losing my body again or squeezing a third child into our loud and chaotic little family, is the fear of having another child with diabetes.  Owen has a 5% chance of developing Type 1 himself and, while that percentage seems small, I’ve seen and met too many families online with multiple diabetic children.  It took me way too long to let go of the fear of whether he too would get it.  And, the risk remains, for life.

Time has a way of healing wounds, they say, like the loss of a loved one (jury’s still out on this one for me), the memory of childbirth or even a week of watching your 2 year-old scream her lungs out at Children’s Hospital.  Life goes on.  They may not be gaping wounds anymore, but they do linger.

Worry never robs tomorrow of its sorrow, it only saps today of its joy. ~ Leo Buscaglia

Salt for the Wound

This was intended to be published Sunday, September 19th, 2010.
I was all prepared to expound on my woes in home schooling – as I am still adrift in the cyber ocean without the proverbial oar… last week a typical “Monday:” my daughter’s annual fasting blood tests in the morning, followed by McDonald’s smoothies for breakfast and an extra late start to lessons.  Ava was the easy part of the day; it was the “invalid username” I kept getting while attempting to log her in to mandatory assessments, the unavailable I/S (instructional support person) and the still uncooperative scanner I needed to use YESTERDAY.

I was going to mention how urgent I am to get started in the morning, as lessons are still running into the late afternoon.  How she bottoms out after lunch.  After 3:30 the house’s energy shifts dramatically; my friend Joyce likens it to floating along a lazy river and then all of a sudden you hit “the rapids.”  That’s my house after the big yellow bus delivers my other precious cargo.

I was going to talk about ripping wallpaper down in of our downstairs rooms, or about Ava’s art project.  How I am certainly NOT an art teacher – that any aspirations I may have had for artistic expression were squashed in the first grade by a teacher who sent me to the office (a fearsome place back then, when corporal punishment still existed) for not finishing my painting when she told me to – but that I can still identify and mix the three primary colors  to create secondary colors.

I was going to explain how solutions to our issues take time – like everything else around here – an email sent to our I/S came back with an out-of-office auto-reply.  All week?  How can an I/S be out of the office all week, just 3 weeks into school??  And currently calls to tech support require 24 hours to return.  It’s worse than being a slave to your friendly neighborhood plumber/cable man/exterminator, who at least gives you a 3 hour window.  It turns out one can’t always trust instructions when it comes to the magical world of ever-evolving technology.  Long story short – the scanner was working, is working and together “Ian” and I scanned one of Ava’s assignments (from 2 weeks ago).  End of call.  And then later, when I attempted to actually submit all the assignments, I couldn’t find the documents!  That did it – the dam broke and I just had a good cry.  Poor Ava – she just wanted to know if this meant she’d have to go to Owie’s school now.

I was going to complain about the dog – about the new discoveries he’s made with his teeth, including one of Owen’s  new Skechers and a now loose seam of wall-to-wall carpet in our upstairs hallway.  How last Monday night he managed to slip away from us all to produce the biggest, smelliest, messiest pile of poop ever in the room currently under renovation.  I’ve never been so mad at him; however, Owen’s refusal to finish dinner at that point as he stood by the back door trying to breathe fresh air quickly diminished my impending rage to something resembling hysteria.

I was going to say that last week I felt like a mental patient, volleying back and forth between rage, tears and hysterical laughter.  Perhaps I’m on the wrong medication.  I’ve noticed how so much less important someone else’s meltdown seems after just two sips of my old Stoli martini.  How hilarious my husband’s indignant intolerance for dog farts seems.  Seriously though, what will all this mean a year from now?  Most likely it will be all forgotten.  Except for, maybe, the dog farts.  There appears to be no end to those, at the moment.

All this I wanted to say until this afternoon – when Ava got almost two units of insulin and then refused to eat lunch – exhibiting the irrational and unnerving behavior of a hypoglycemic child (which, of course, she wasn’t).  That’s when all your good-mom-healthy-eating habits fly clean out the window, when you are forced to choose between marshmallows and crackers for lunch or a call to 911.  And then she was hot.  Real hot.  100 degree fever.  A sick child is never fun, but a sick child with diabetes quickly becomes a nightmare.   In the 3 years since her diagnosis, we’ve been blessed with nothing more than a head cold – until this past May, when she got a wicked 24hr exorcist-like stomach virus that caused her blood sugars to plummet dangerously low for hours.   We were up all night, catching vomit and testing her glucose levels, praying we wouldn’t end up in the hospital before daybreak.

This beautiful morning we four were outside throwing the baseball around, both kids exhibiting the athletic prowess a proud father adores (and me failing miserably with a left shoulder injury caused by a certain 4-legged animal who shall remain nameless).  Just like that – in a space of a few hours – your child’s health takes a sudden nosedive.  (The irony of these sudden-onset fevers always coming on Sundays is not lost on me.)  So, all I thought I wanted to say – none of it matters now.

What I Learned in Kindergarten…..

 

As week 2 slows cautiously to a halt, I am ecstatic to have finished school day 9 before lunch.  I am still in awe (and more than a little suspicious) of those half-day kindergarten teachers’ ability to cover a multitude of critical material in under three hours.  With recess.  Most days for us run at least 5 hours.  (To be fair, there are many interruptions.)
            “This week in kindergarten I learned:” short ten minute breaks, conveniently coinciding with the dog’s bathroom needs,  allow for not only fresh air and vitamin D but a necessary energy boost after squirming in a chair for an hour.  I learned that I am NOT a kindergarten teacher.  I lack the patience required, though this detail is not a news flash.  I learned that my fiercely independent daughter is determined to write it all by herself – to hell with her less than proficient identification of lowercase letters.  This, I have to admire.  However, being her teacher, I have to also reel her back in to the State of Pennsylvania’s reality that she learn to identify them all.  This year.
            In her I have discovered an eagerness to write (just like her mama!), her frustration over what she doesn’t know (just like her mama!) and a very loud voice when things don’t suit her (hmmm… just like….???)  I’ve always said she is a fair blend of her father and me – many characteristics unfortunately the unsavory ones.  My own impatience melts away though, when I see her beautiful blue eyes meet mine for approval as she attempts the letters she’s still struggling with.
            My fourth grade son has finally decided he will give me a break, “at least until 5th grade,” and will remain in school, and I – after meeting his teacher at last week’s open house – couldn’t agree more.  I think she will be good for him, in her jovial dedication to these children after 37 years.  I admit I am not only excited for the curriculum this year but also grateful for such a large group of terrific teachers in our district.  Ava would be well-served here too.  The math wiz is just happy to have passed his second attempt at a timed facts test, so his self esteem is back up.  As parents I think we all struggle with that mysterious six hour block of the day our children are absent from us; this year I actually know where he is/what he’s doing throughout each day, thanks to a thoughtful copy of Ms. Snyder’s master class schedule.
            As for the dog, he has learned to lie down and behave during lessons but, like any intelligent living thing, he too likes to break loose on the weekends.  And that he did, from sunrise until sunset today.  He is, to his credit, “an awesome dog” as my friend says – he is so amazingly smart and so calm-submissive it’s difficult to stay mad at him for long.  He is still only a puppy, and prone to all those puppy-isms that get him in trouble, like gnawing on the wood trim halfway up the staircase (still don’t quite understand this) and wedging bones and balls in impossibly tight spaces and clawing the hell out of them to retrieve it.  The latter is a favorite game he is determined to engage me in, no matter what the cost.
            And so – I am so happy for Saturday, for my own neglected reading and writing, beautiful weather and…football.  Husband is over-the-top ecstatic over a whole former-football-player’s dream weekend of Penn State, the Eagles and a bucket of peel-and-eat shrimp.  I’ll be the one on the other end of the couch, one eye on the game and one in my new book, and a  bottle of Stella Artois in my free hand.

September 5, 2010 – New Adventures

     With the first week of school behind us, I’m looking forward to one last blast of summer as the kids return to their favorite brainless activities, like playing video games around the clock and running wild with the dog.  I’ve already cleaned the entire house – a wonderful and mindless activity – and with Sunday looming large  with its beautiful sun and a welcome chilly breeze, I’m enjoying my first cup of coffee and thanking the Lord for another day.  As Mom would say, “today is a new day.”
     The return to school is always a period of adjustment for everyone and , in true *family* fashion, we took it over the top.  There were tears, there was fighting, there was begging and pleading,….. but I promise to behave better this week.
     Owen has asked to attend PA Cyber like his sister.  Well, okay, it was more like hysterical pleading after a bad first day – the kind that, as a mom, breaks your heart and makes you want to abandon all reason and go yell at the mean kids on the bus while speed-dialing PA Cyber for another enrollment form.  Little things add up for him, like the dead librarian and a new bus driver after 4 years,  until they snowball into a full-blown meltdown over mean kids, a more demanding curriculum in 4th grade and his sister’s shiny new school-issued laptop.  Four days later, he was still – though without the tears – requesting cyber school and I told him we will discuss this choice over the weekend (to be continued…..)
     Meanwhile, back at the ranch – home-schooling after one week is no picnic – it’s your worst family holiday dinner multiplied by ten.  I’d rather give birth to her all over again (the EXACT same way) than repeat the first week of school with her.  She was distracted, ornery, uncooperative and just downright rude.  It all started with breakfast, which she refused to eat and it just careened downhill from there.  She kept leaving the table, rolling around on the floor on her back and complaining of how tired she was.  I soon learned the fine art of threats – I mean, warnings – and how effective the threat of a call to daddy or sending her to “Owie’s” school can be.  Magical.
     The dog, meanwhile, was making his own adjustments during our lessons… to his squeaky toys, a forgotten plastic bottle and every electrical cord in the house.  You could say he was the most focused  member of the house.  Focused on interrupting me every five minutes (no exaggeration here) so that I could extract his ball from under whatever piece of furniture he’d stuffed it under (and don’t think he doesn’t do this on purpose).  After an hour “time out” for him to nap in his crate two days in a row – I think we’ve come to an “understanding.”  Or at least a ceasefire, until the next bathroom break.
     Navigating the first week  of home-schooling,  I feel like the captain of some strange aircraft  I have no idea how to fly.  And all week long I wanted to run screaming from the cockpit.  There is so much information to go over and I, perfectionist that I am, just have to get it right – right away.  The knot in my stomach relaxes a little more each day, as we crawl toward a groove.  We will still hit the occasional turbulence, which is par for the course with a five-year-old (with or without diabetes),  but I am at least now confident that we won’t crash.  Or, if we do, I’m taking everyone with me.  As I face week two, and in the words of Nancy Thayer, “it is never too late to revise – in fiction or in life.”