Greetings from the other side

Posted on May 20, 2013 by

“I sing the body electric, I celebrate the me yet to come, a toast to my own reunion…”                      –Michael Gore and Dean Pitchford

Oh, to be a stranger in a strange land. My family and I sold our house, said good-bye to our jobs, our friends and family, and about 90% of our stuff and crossed the Atlantic by ship in a sort of 21st century reverse emigration from the US to Stockholm, Sweden, where my husband is from. We landed a little more than a week ago.

In earlier posts I shared how this experience has been both an adventure and a rite of passage, divided by the anthropologists into three distinct phases—a preliminal phase of ending some aspects of my old identity, a liminal phase spent in a metamorphic trans-continental boat ride, and now, this final post-liminal phase of coming out the other side a new and different person.

And new and different it has been.

We arrived in Sweden to festive pomp and circumstance after disembarking our ship in England and hopping a short flight to Stockholm. Flags, streamers, champagne, hugs, dinner in the garden, even the cherry tree blooming on cue for our arrival…it was a reception in the truest sense of the word.

Reality hit the next morning like a hammer. I was startled awake in a disorienting free fall while my mind attempted to locate my body in its mental GPS. Yes, dear, down there in that long skinny country on the top of Europe, that’s where you are. Thud.

The disorientation lingered like a hangover. Insert confusion woman montage sequence here: confused woman working the coffee maker (weak coffee being grounds for deportation in my new homeland), confused woman figuring out the dishwasher, the washing machine, the shower. Each moment left me stymied.

The pinnacle of ridiculousness–at one point I stood for several minutes, swearing under my breath, trying to open the front door by turning the deadbolt lock to a variety of positions. Finally I realized that unlike my American front door, which opens in, Swedish front doors open out. Duh.

Given that I spend several weeks here each summer and even lived here many years ago, I’m surprised to be this disoriented. I see now that on those vacations I somehow skirted around many of these domestic chores. Determined to be a thoughtful house guest, last weekend I pragmatically attacked each task head on.

The remainder of the week continued to offer a real sense of seeing life with fresh eyes and beginner’s mind–not necessarily bad, just curiously different. Can I take my daughter from the schoolyard at the end of the day or do I need to tell someone? What do I need to ride the bus? What radio station should I listen to? What brand of hot dogs should I buy? (And these are just the little things.)

The confusion fog will certainly hang around while I continue to find some sense of self, or as the rite of passage model suggests, a new embodiment. There is a definite feeling of rematerialization as I go about my new life, like vapor turning into liquid, liquid turning into solid. With each day, I feel a little less like a cloud with feet.

This afternoon someone asked how I was doing. They asked if I was overwhelmed, using a phrase in Swedish which uncannily translates into “being in a state of disintegration.” I smiled and was able to reply honestly. “No, quite the opposite.”

Posted in special needs parenting | Tagged , , , , , , , , | 4 Comments

Spending some time at the Threshold

Posted on May 11, 2013 by

When my husband and I moved our family from Boston to Stockholm last week, we decided to kick the whole she-bang up a notch by getting ourselves to Europe by boat on the Queen Mary 2. A week-long break between the stress of saying good-bye and hello appealed to us both. As the granddaughter of immigrants who had made their way to Ellis Island decades ago by sea, there was the romantic symmetry of returning to Europe on a boat for me as well.

oceanMostly though, I looked forward to experiencing the passage of seven days of trans-Atlantic travel, allowing my body to really feel the geographic scope of the experience, allowing it to catch up to the emotional and spiritual journey that my heart and head already knew I was making.

During the decluttering and packing frenzy leading up to “Crossing 2013,” a friend and family member pointed out that the boat ride was the missing element to make our move a true rite of passage.

According to the Encyclopedia Brittanica in the ship’s library (satellite wi-fi being thankfully out of our budget here on the North Atlantic) rites of passage are “ceremonial events, existing in all historically known societies, that mark the passage from one social or religious status to another.”

Weddings, funerals, coming of age ceremonies, graduations – all are rites of passage designed to provide a productive outlet for the stress caused by major life changes. EB went on to say that folklorists and anthropologists break down rites of passage into three phases:

  1. the preliminal or separation phase,
  2. the liminal or transition phase, and
  3. the postliminal or reincorporation phase.

In other words, during this event one is before the threshold, at the threshold, and past the threshold. Anyone who has been on an odyssey knows how significant a threshold is, an invitation and a call to change.  Once crossed, there’s no turning back.

Apparently, all that decluttering I was doing back in Boston was the preliminal phase. In this stage, anthropologists note that we cut ties, we give things away, we fast, we mutilate our bodies with a good tattoo, piercing or even a good head shaving, as Britney Spears and the Army know full well. Getting rid of about 90% of my worldly possessions seemed to do the trick just fine, inducing a mental state probably  similar to an intense fast or mind-altering substance.

Then comes the limbo, the phase I have been in for the last 2000 or so nautical miles, literally and figuratively. This is the solitary walk in the woods, the 40 days in the desert, the vision quest. It’s the confinement before the birth, the hours during which the bride must remain hidden from her soon-to-be groom. It’s invisibility, it’s in between, it’s the period when the caterpillar becomes cellular goop  inside the chrysalis before reorganizing itself into a butterfly. In my case, that means being in between continents, in between jobs, in between communities, in between daily grinds and languages. There is no way to find solid footing here, no Facebook updates, texts or tweets in which to create a narrative to this truly plotless period of floating.

So here I am, in the doorway at the threshold. By the time you read this I’ll have taken the leap into the reincorporation stage, becoming reimbodied in my new role as just-off-the-boat immigrant, ignorant outsider, new hire, new neighbor, novice, beginner, a veritable tabula rasa.

But until then, there are waves to look at and miles to cross. Time to reflect and take in the physical and metaphysical significance of my adventure, to be freaked out by it and then to toast it with a glass of champagne. To all my fellow and future sojourners, seekers and pilgrims at the threshold, I raise my glass—cheers!

 “Come, come, whoever you are, wanderers, worshipers, lovers of leaving, ours is no caravan of despair, come, yet again, come!”

– Rumi

Posted in special needs parenting | Tagged , , , , , , , , , , , , , | 8 Comments

Durga’s Tool #2.1: Empty space

Posted on April 23, 2013 by

Even at the dawn of the Durga’s Toolbox series, I so appreciated the value of decluttering that I made it a seminal tool, giving it the #2 spot.

When I wrote about it then, it was at the culmination of a pivotal year-long stint as a full-time caregiver—for my son and his complex needs, for my father who was ill and passed, and even for myself, as I worked to finally accept the mantle of “special needs mom,” which I had been pushing away for years.

The year had been one of intense change and spending time decluttering was helpful. I wrote then about “the delicious rush of the feeling of spaciousness – physical, mental, psychological and spiritual – that comes from picking an area of my home and then giving a ruthless “buh-bye” to anything I don’t love, need or want contained within it. After decluttering a drawer, a shelf or a closet, I can return for days to gaze at the generous capaciousness, not just the controlled order of the things, but the blank space between the things that reside there.”

The spaciousness brought order and hope to a little corner of chaos. Unexpectedly, it was also an invitation to the creative powers that be to send me a new calling, new professional and personal opportunities. Anyone who’s ever done a good solid clearing before knows that when you make space, the Universe will fill it. (Maybe I shouldn’t have cleared quite so much.) Within months, there was less time to keep up with our “stuff” and the piles crept back, as they are wont to do.

As we prepared to sell our house and pack for  our huge adventure and head out to Sweden next week, we’ve had to take decluttering to the proverbial “whole nother level” to say the least. A trifecta of motivators—a cheer-leading realtor, the understandably high cost of trans-Atlantic shipping and an earnest desire for a fresh start—has lit a fire under our bums and experience has been nothing short of catharsis.

Every manner of item unused, unwanted and unloved was tossed, given away, sold, donated. Old resumes, a prom dress, craft projects, broken toys. Books from old jobs, clothes that don’t fit or flatter, things with plugs that won’t work for us anymore, gone. Taking inspiration from the minimalist movement, I asked myself only two questions:

  • Do I love it? (save it)
  • Do I need it? (save it)

What I didn’t allow myself to ask were these questions:

  • Was it a gift?
  • Did I pay a lot of money for it?
  • Will someone think I’m silly for getting rid of this?

The questions make the decluttering easier and faster. They really do.  And the results are astounding. It’s easier to move around, to clean up, to see what’s beautiful. Why wasn’t it like this all along?

It’s not just among my physical possessions that I’m decluttering. Email newsletters, newspaper subscriptions, catalogs, memberships, they’re going too. Those gift cards I’ve been carrying around in my wallet—time to spend them down. It’s luscious.

The final frontier to declutter, and of course the most difficult one to tackle, is the clutter of the mind.  The sabotaging habits, the outdated tapes and scripts, the unwanted labels—I’d love to leave some of those behind as well. There’s no way to toss them into a recycling bin or trash bag. I’ve been struggling with this a bit.

While writing this, I started wondering what the equivalent “questions for mental decluttering” might look like. A neuron fired and I recalled the Byron Katie‘s powerful The 4 Questions and realized that they might just be what I need. Check them out if they resonate with you, but here’s a teaser:

  1. Is it true?
  2. Can you absolutely know that it’s true?
  3. How do you react, what happens, when you believe that thought?
  4. Who would you be without the thought?

I can feel the space opening. Who would I be without the thought? Who would I be without the thought that I am not enough? Who would I be without the thought that this is too hard? Who would I be without the thought that there isn’t enough time? Who would I be without the thought that it doesn’t matter?

Stay tuned.

Posted in special needs parenting | Tagged , , , , , , , , , , | 3 Comments

A few minutes in the hospital lobby

Posted on April 19, 2013 by

Reblogged from Durga's Toolbox:

I arrived a little earlier than expected at our local pediatric hospital last Friday. I have spent plenty of hours there with my son, both inpatient and outpatient, or visiting friends whose children are also patients, providing plenty of opportunities for a lot of suffering.

On this day though, I'm here in a more neutral role, as a student participating in a fellowship on developmental disability.

Read more… 439 more words

Today of all days here in Boston, while we stay confined to our homes and try to explain to our children what is happening in this world, tonglen meditation feels more necessary than ever. Peace be with you today and every day.
Posted in special needs parenting | Leave a comment

Durga’s Tool #421: Prostration

Posted on April 4, 2013 by

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  – my nominee for patron saint of special needs parents.

Several years ago I heard a radio interview with a devout Jewish woman who had a practice of laying prostrate—face down on the ground, arms outstretched. She said she did it to remind herself that she was not in control of every little thing. She was in God’s hands.

In other faiths too, the act of laying oneself down is one of humility or surrender. While I might not share the beliefs from which this tradition springs, I do appreciate the value of acknowledging that I am not always in control.

In the Western world, we like to be in control. Just take the temperature of the air around us for example. Few people can bear the sensation of being too hot or too cold without commenting on it. We have heat and air conditioning so that things can be “Goldilocks just right” at every moment. Tell us we can’t change the thermostat at work or in our hotel room and you’re likely to have a revolt on your hands.

This past week has been a test of my willingness to admit I cannot control everything. At the same time that I was blogging about the excitement of our upcoming adventure, things were unraveling behind the scenes: the very specialized school which we deem absolutely necessary for our son’s development contacted us to let us know that there will probably not be a space for him when we arrive. Maybe not in the fall either. The gatekeeper even suggested that we keep him home until school starts in the fall.

I flew into a panic. How could this be happening? How could they do this? Didn’t they tell us everything was all set? Didn’t they know that I had just sold my house, that I quit my job, that our very future was in their hands? Did they know how much he would regress? It was so painful that I couldn’t even let my mind think about it.

That’s when I remembered the woman who lays in prostration, and I mentally allowed myself to lay down beside her.

I cannot control everything. I cannot change the order of the waiting list. (Maybe in other countries you can, but not here, and I’m grateful for that.) I cannot make different words come out of the mouth of the gatekeeper. I just cannot. And if I cannot accept that, the next few months and years, indeed the rest of my life is going to be filled with suffering.

Interestingly—and perhaps here’s the point—when I let myself do that, my body and my emotions could relax enough to let my brain turn itself back on. It could mobilize. I was able to come up with a few unconventional alternatives and email them to the gatekeeper. Suddenly my “things will work out” mantra didn’t seem so desperate and hollow.

This morning I heard back. There is a school in another town with the program that we need. They have a space. He can start right away. I am breathing deeply again.

Prostration. With this one posture, one throws oneself at the feet of God or the Universe or circumstance or life itself and hopes that in the acquiescing, the surrender, there may be mercy. This time, there was. Will there always be? Hard to tell. Maybe not mercy, but maybe less terror and more creative problem solving.

And that is something I have faith in.

Posted in special needs parenting | Tagged , , , , , , , | 4 Comments

Leaving the safe harbor

Posted on April 2, 2013 by

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” -Mark Twain

It’s time for an adventure. Maybe not an Everest climb or paddle down the Amazon, but for someone like me whose idea of a great Friday night is Indian takeout and a Midsomer Murder on the DVR, it’s kind of a big deal.

In a few weeks, my husband, the kids and I will be moving to Europe. Sweden to be precise. My husband was born and raised there. It’s where we met, a long, long time ago. It’s where we got married and started our life together. After 18 years of living in the US, we’ve decided it’s time for Sweden again.

I’ve made this trans-Atlantic move twice before. Before kids. Before a career. Before owning a home. Before turning 40. Before turning 30 even. It was an adventure those times, too. But this one seems so much more adventure-y, in that terrifying-and-ludicrous way adventures do.

There’s so much more to lose and miss. That’s a good sign; it means that I have much to be grateful for: a wide, rich network of extended family, a few deeply rooted friendships, a blessings of rewarding work and sheltering home, and schools in which my children grow and thrive.

“No, no! The adventures first, explanations take such a dreadful time.” -Lewis Carroll

It’s no surprise, given how much I am leaving behind, that people are curious about why we’re going. Frankly, I spent a lot of time being ambivalent about it myself, and that confusion likely telegraphs itself from my heart to the outside world.

I wasn’t even going to try to explain, assuming no one would understand since I didn’t. (And honestly, how do you tell your family that you’re moving to be closer to family? Try it.) But a family member encouraged me to make the effort. So here goes.

No single explanation will really suffice. Instead, there are many. We are leaving family and friends here, yes, to be close to family and friends who we have missed for a long time. There’s the opportunity for the kids to have a day-to-day life spent with cousins and aunts and uncles—and for me to see four of the world’s most perfect sisters- and brothers-in-law more than once a year. My heart smiles when I think of that.

Less certain but also appealing is the possibility that if we play our cards right, we have a chance for a somewhat less crazybusy life. Sweden’s work policies tend to be a bit more compatible with raising a family, and I do look forward to that. I say “less certain” because I’ve long suspected that crazybusy is my default setting. Here’s hoping for a re-boot!

The explanation I’m less comfortable giving to my friends who don’t have kids with special needs (but which my special needs friends seem to get before I get the whole sentence out of my mouth): I’m thinking about the future. It’s hard to explain. Whether it was a brilliant move or a foolish one…I’ll let you know in 20 or 30 years.

“A ship in harbor is safe, but that is not what ships are built for.” -John A. Shedd

A woman at a special needs conference two weeks ago overheard me telling a friend that we were moving to Europe. “OMG, you have a special needs kid and you’re moving to a different country?!?” The challenges of figuring out the ins-and-outs of new education, health care, and disability systems, finding new schools, new jobs, new doctors, new insurance, establishing all those new relationships with the school bus dispatcher and the pharmacy assistant, not to mention selling a home and packing—it’s exhausting and overwhelming to think about.

But I am grateful in knowing that I’m ready to try. Two years ago, it would have been out of the question. Today, I’m game for anything. I always dreamed I’d have adventures. Why shouldn’t we now? The wonderful thing about learning new skills like advocacy, collaboration and creative problem solving is that they are global. I’m bringing them with me. Thank you to all my wonderful teachers.

“Travel is not really about leaving our homes, but leaving our habits.” -Pico Iyer

We leave in one month. We’ve decided to take a boat. It’s the Queen Mary 2, and apparently you’re not allowed to call it a cruise, or some butler will come out and dump you in the ocean. It will be a wonderful chance to decompress between a busy period of leaving and a busy period of arriving. Or it will be a disaster, a family of four including one little boy who can’t sit still or drink tea without spilling among 1,700 very English English people. May God protect their shuffle board games. Either way, it’s a mode of transportation in keeping with our keen sense of adventure and desire for the romantic gesture.

In the mean time, there’s the leaving. The packing and the decluttering is so luscious that it deserves its own post. The tossing of the years of stuff. The unsubscribing from catalogs and email newsletters. The decluttering of the beliefs about who I am, what I am capable of, and what life will be life.

“Definition of ‘adventure’: extreme circumstances recalled in tranquility.” -Jules the Kiwi

More news to come on these extreme circumstances, or this adventure, for sure. Until then, it’s time to go pack a few more boxes.

Posted in special needs parenting | Tagged , , , , , , , | 16 Comments

Special needs eclipse

Posted on March 18, 2013 by

eclipseI had a special needs eclipse this morning. One of those moments when the challenges of raising a kiddo who needs a lot of help blocks out all of the light. The details aren’t important, but I can say that the morning involved toileting accidents, cold tea, lots of grabbing (on his part) and redirection that escalated into yelling (on my part).

I can’t even capture the intensity of the dark feeling now, but it was there, even though the circumstances seem trivial now. In one flash I saw myself forty years from now tying his shoe laces, wiping his mouth and his bottom, and my mind did a high-speed rewind through all of the thousands of tying and wiping moments I’d have between then and now. Zero to despair and rage in sixty seconds. It was hot and black and tight.

In those moments, there is a resentment, if I’m honest, both toward my son and toward the Universe. I cannot recall the last time I finished a breakfast without getting up. That’s where the heat comes from. The tightness comes from the seeming eternity of it. I have done this for so much longer than I thought I’d have to, and it’s not ending any time soon. Somewhere, someone is leisurely drinking tea and reading the paper, and it ain’t me. And it won’t be any time soon. A searing current of jealousy is there. I’m back at the very “why me?” beginning. It’s not pretty.

Something shifts ever-so-slightly and a friend pops into my mind. She has a child with special needs too, and it strikes me that she is probably having, or has had, or will have a very similar morning to mine. Then another friend. The another. A comment on this blog comes to mind; a mom who pointed out that it used to feel like we were having “one of those days,” but with time, you realize it’s just “one of those moments.”

At that moment, the eclipse passes. My beautiful boy is sitting in front of me again, and I am tying his shoes. He pulls to get up before I’m finished, but things feet looser. I don’t need to push against it, to control it or for it to end. It just is.

Posted in special needs parenting | Tagged , , , , , , , | 12 Comments