Left Behind

(with Unfinished Business)

It’s been 15 days (and counting) since I last saw my therapist.  The last time I saw her I was still functioning under the illusion that she and her doctors were working, slowly, methodically, through a long diagnostic process.  Initial signs, along with a family history, pointed to MS, but in order to diagnose, they had to work down the MS rule out list.  There was a long list of possibilities to test for and that would take time to get through.  I did not sense any urgency.  It seemed sensible to remain calm and carry on with these rule-out tests.  Cancer was in the mix, and mentioned, along with the caveat that it seemed unlikely.  At one point, less than a month ago, there was even talk of just needing back surgery, with a mere 10 days to recuperate.

So I wasn’t worried.  And I wasn’t prepared when the very next day, the cancer diagnosis was made.  I had no time to prepare.  I didn’t know we’d be heading into a long, traumatic break.  When she took a 3-week break last spring, we had time to prepare and plan and find ways to explicitly stay connected.  This time, the bottom just fell out.

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Fill It Up Again

(or You Can’t Always Get What You Want Need)

One of the ideas rattling around in my head before the election madness took over had to do with routines and the impact of disruption to these orienting, centering, reliable constructs that make up most of our lives.  As a parent, I know I bemoan any disruption in my children’s routine, be it a snow day, a holiday break, summer vacation, even the weekend.  We all know that children usually thrive on routine, when they are fully aware of plans and timings and expectations and what comes next.

I suspect many adults also function better on routines, but for some reason we aren’t allowed to openly admit that.  As adults we are somehow expected to better withstand the changes in routine, to be able to adjust the sails and keep the boat from capsizing.  Even if it’s a tricky maneuver, we must try to make it look easy and effortless, even in the face of gale-force winds.

I’m likewise certain that the recent election results are unsettling to so many precisely because we are entering unchartered waters, and have no idea of where we are going, or how we will get there or what the ultimate outcome will be.  The routine of life as we know it has been completely disrupted and we may never settle into a new, predictable routine again.  Responding to rapid changes may become the new norm.

For me, the theme of therapy this year has been disruption in routine.  It started back in April when my therapist took a much-needed sabbatical abroad.  I didn’t begrudge her (too much) this time away, but I did anxiously count down the 25 days she was gone.  Then we ran into a 21 day stretch at the end of June when I was away and another 20 day stretch at the end of the summer when our vacations misaligned.

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The Missing Piece

(or Simple Questions, Complicated Answers)

People can ask the darnedest questions.  I can’t tell you the number of times we’ve been asked “Are you going to have a third?” or “Do you want to try for a daughter?”  Usually this comes in the form of idle small-talk and meaningless banter.  I have to hope that the questioners are just naive, and that they haven’t given much thought to the myriad of ways one could answer these seemingly innocent questions.

No matter how often it happens, it always takes my breath away, even for just a minute.  My heart wrenches, a sadness overwhelms me.  I might pause for a minute to think about how to respond – or how I would like to respond.  I usually defer to simple answers: “oh, I think we’re done” or maybe even “you never know.”

Truth is we already have a third child, a daughter.  She was our first and had to leave this human realm before we even had a chance to hold her.  She wouldn’t have survived here on earth, but I have to think she is somewhere, without pain, in the great beyond.

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Free Fall

(or A Day to Forget)

I wrote this out last year, long before I started even thinking about a blog.  It was too much for Facebook, and seems more appropriate to post here anyways, this marking the 15th anniversary of that horrible day.

Last night (9/11/2014) as we looked over the river to the beams of light, what I noticed most was the sound of the airplanes.  Lots of airplanes.

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And it made me remember the silence of the city that September night.  It was eerily silent and still, except of course for the steady stream of the sound of sirens.  But even those seemed to fade into the background, leaving the world all too quiet.

I remember the smell.  It’s a smell I would much rather forget, but don’t think I ever will.   It was an unavoidable smell that hung over the city for months – a combination of burning jet fuel and melting iron, dust and ash, flesh and death.

I really dislike the mantra “never forget.”  Many need to forget, in order to be able to move on, to be able to keep on living.

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Home Base

(or The Art of Saying Thank You)

Being a parent is hard.  It is so much harder than I realized before becoming a mom.  And I’m not just talking about the disrupted sleep and poopy diapers and projectile vomit and being on-call 24/7.

The first three months are particularly brutal because you don’t get anything back.  You have this beautiful, precious creature who is completely dependent on your for everything, every day.  And then suddenly, one day, after months of feeding, changing, bathing, comforting, loving, you get a smile – a sign that the baby sees you.  Maybe he doesn’t appreciate you (do they ever?) but he sees you and gives you a smile or a coo or even a laugh.  And usually that’s enough to keep you going.  With that little acknowledgement, your energy reserves are topped up and you can keep going.

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In the Pursuit of Perfection

(or So What Did You Eat Today?)

We just got home from a weekend conference where we had hoped that our older son would realize that he is really not so alone in this world.  I’m not sure that this objective was met – it’s hard to get much in-depth emotional processing out of a 6-year-old.  I, however, came away with a whole host of revelations of my own.

But to get to those, I need to start at the beginning.  You see, my son was born with a very rare, very serious metabolic disorder that, if left untreated, causes irreversible damage to the central nervous system.  Or to be exact: brain damage.

It is hard to fathom that the very foods that so many of us eat, and take for granted, are toxic to the hundreds of thousands of people with inherited metabolic disorders.

To protect both his and my anonymity, I’m not going to name the specific metabolic disorder that he has.  His specific diagnosis isn’t all that pertinent, and I hope my own thoughts on this topic apply to anyone raising a special-needs child, far beyond the reaches of our very small metabolic community.

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There’s No Place Like Home

(or Do Turtles Ever Get Homesick?)

I’ve just spent two weeks away from home.   Some would call this a “vacation.”  I don’t mean to sound flippant or ungrateful.  Yes, we’ve been in England these last two weeks… but mostly visiting my in-laws and in the non-stop company of two young, jet-lagged children who don’t really understand where they are or why their bodies are so out of sync.  It’s hardly been restful or restorative, as the word “vacation” usually implies.

What I’ve noticed most about this trip is my longing for home, a home-sickness of sorts, that I’ve never experienced before when we’ve traveled.

Perhaps it’s because it’s been more than two years since we’ve made the journey over the pond.  Or maybe it has to do with being here, during the Brexit vote and subsequent fallout.  I long for the perception and illusion of stability and safety back home, as opposed to the stark reality of instability and unknown that can’t be avoided on this island.  England, or more generally the EU, was always our backup plan.  If things get too politically unstable in the U.S., we always can head to Europe, or so we thought.  Now I’m not so sure.  I want my children to thrive in a global world, not be restricted to small-minded island thinking.

Maybe it comes from so many years of living in a country where I felt so many of the states were “off-limits.”  Sure there are gay people living in all 50 states (shock! horror!), and many did so under repressive local governments, but that’s never what I wanted for myself or my family.  I refused to live in such places and was lucky that I didn’t have to.

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Through The Eyes of a Child

(or The Things My Kids Say)

One of the things I have most enjoyed about motherhood is the chance to experience life through the eyes of a child.

To them, the world is a mystery, one great big never-ending science experiment.  Every day brings something new and exciting.  Discoveries lurk at every corner.

(Although, I think we’ve proven more times that necessary that, yes, dog food does in fact float.)

I’ve loved watching the development of language, as gurgles and coos give way to words.  It’s enlightening to witness them navigate the English language, especially as they encounter and react to all of the “exceptions to the rule” in our language.  You can hear them apply the rule, and then watch their little face scrunch up as they realize it doesn’t sound right, and then try to figure out what went wrong with their logic.  I reluctantly correct them because their mistakes are often so adorable:

T(wo): What did we do on my 2th birthday?  What about on my 3th birthday?

It is particularly interesting to watch them find their own voices in this Digital Age.  For them, there has always been the internet, iPhones, iPads, Amazon Prime, On Demand TV, Google, YouTube, Facebook (I’ve stopped trying to get baby books made – it’s all documented on Facebook anyways!).

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