Just this! Just this!

In an unusual moment of stillness between the last bite of dinner and the itchiness to get up from the table, I wished my family a Happy Solstice and asked if anyone had a poem, song or blessing to add. (I’ve been thinking about how to add more spirit to the everyday, though usually don’t remember it at the actual moment in the chaos. For some reason, this time I did.)

My seven-year-old daughter, who is an old soul and so easily slips between the sacred and the material world, sprang to the bookcase, pulled down Myla and Jon Kabat-Zinn‘s “Everyday Blessings,” flipped to the following page and read aloud:

“First we braid grasses and play tug of war,
then we take turns singing and keeping a kick-ball in the air.
I kick the ball and they sing, they kick and I sing.
Time is forgotten, the hours fly.
People passing by point at me and laugh:
“Why are you acting like such a fool?”
I nod my head and don’t answer.
I could say something, but why?
Do you want to know what’s in my heart?
From the beginning of time: just this! just this!
— Ryokan, 18th century Japanese Zen master

Whatever your traditions or your calendar, whether the tilt of the world’s axis where you are is bringing you closer to light or darkness, may the next few days bring you a peaceful moment to linger and savor. Just this, just this, indeed.

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Oreos for my village

My friend, who is also the mother of my daughter’s classmate, asked me a couple of weeks ago if I wanted to join in on a group holiday gift card for their teacher, thus setting off my annual tailspin of panic on how to appropriately gift the many folks who care for and about my kids.

While I absolutely can’t begrudge my daughter’s regular ed teacher the $15 worth of Target goodies she would have gotten if I participated, I had to decline. Or more precisely, my wallet and my sense of fairness did. If I can’t do it for everyone, I shouldn’t do it for anyone.

I’m not going to whine about how expensive it is to give gifts to all the people who work directly with my son: the six behavior therapists, the special ed teacher, special ed director, BCBA, two clinical directors, school nurse, physical therapist, occupational therapist, and his beloved bus driver. Having a lot of people to thank is a good problem. Most kids receive too few services. That’s not the case for us. But it does make me feel like a cheapskate.

It’s not just the awkward feeling of inadequacy around my limited gifting capabilities that is uncomfortable at this time of year. This deep revealing of obligation is unsettling. I am starkly reminded of my son’s vulnerabilities and how dependent he is on so many other people to get through life.

I too am dependent: on our education consultant, the special education administration, the lawyer, the financial planner, the school committee members, the other special ed parents in our district, the special needs parents who advocate and change policy we couldn’t live without, the agency professionals, the doctors, the nurses, the front desk folks who make sure we have referrals and prescriptions, the pharmacists, the diaper delivery man, the transportation coordinator, the newsletter writers, the conference planners, the breakout session presenters, the support group coordinators, the bloggers, the friends, the family members, the neighbors. Even you, dear reader, on whose community I have come to rely to get through this unexpected life. I am dependent. I cannot do this alone, because he cannot do this alone.

To be honest, part of me resents that dependence. We live in a culture in which independence is strength, independence is freedom. The ideal American life is free of obligation, of reciprocity, of dependence. As I have come to learn, that freedom is an illusion. A delusion even.

So this year, the kids and I have been whipping up batches of chocolate-covered Oreos as token gifts for the school personnel. (Luckily we are able to make them slightly faster than we can eat them.) Three a piece, decorated with sprinkles, in a cellophane bag with a candy cane. Even my daughter’s teacher will get some.

It’s not enough. But it will have to do. I am getting comfortable with being indebted.

To the rest of you, I say simply thank you. I hope I get to say it in person, maybe even with a hug. But if not, please know that I know that I couldn’t do it without you.

Stopping the story at exactly the right moment

“And who among us would deny Jane Austen her happy endings or insist that Cary Grant and Irene Dunne should not get back together at the end of The Awful Truth? There are tragedies and there are comedies, aren’t there? And they are often more the same than different, rather like men and women, if you ask me. A comedy depends on stopping the story at exactly the right moment.” Siri Hustvedt, from A Summer Without Men

Yesterday afternoon I had one of those rare, energetic flashes of motherhood craft project coordination, inspired by Jean Van’t Hul at The Artful Parent. Because of scheduling glitches my house was full of kids and I decided that the best response was to embrace it by whipping up a batch of salt dough and letting the kids get dirty and crafty.

My attention was pulled in a million directions — helping kids get scissors, rolling pins, beads, cookie cutters, paint, carving tools, pens. It was loads of fun. In a moment of pause I turned to look at my son, who normally has great difficulty engaging in craft projects of this complexity without hand-over-hand help because of his developmental disability. And what to my wonderous eyes should appear but the perfect little ornament — sculpted, painted, deckled, layered, by his own two hands from start to finish. He declared it was for his PCA, who he insisted would be “so happy, so happy” to receive it. And his PCA will be. And right now, I am happy too.

Today I chose to stop the story exactly at that moment.

The siren call of the sofa

My sofa calls. “Come on over and sit a while,” it says seductively, with its plump cushions and close proximity to the ultimate mind-and-heart-numbing box.

I don’t think I’m alone in celebrating the arrival of a long sought-after goal on this arduous journey we call special needs parenting — reaching a developmental milestone, getting a special school placement, securing extra services, making it through a difficult surgery or health scare — by opening up a cold one and plopping right down on that couch. Sometimes simply making it through the day is an accomplishment.

At those moments, the call of the mindless activity is extra strong. And rightly so. The body had its rhythms. It needs recovery and restoration after these feats of determination and strength.

But after a time, a small voice distracts us from our distractions. Not a siren call, but a mosquito’s buzz. It reminds us that while we may have much to celebrate, there are so many others who don’t. We wonder about those who can’t afford to hire an advocate, who can’t navigate the system, who are too busy simply surviving to make the phone calls, who don’t know they can speak up. This, I think, is the gift and the burden of parenting through so much challenge: that our heart breaks open so wide that it becomes difficult to close it again.

At that moment what can one do but get off the sofa, get back on the path, turn toward the place from which one just arrived, and reach out a hand to those who need it? We join committees, we call our representatives, we volunteer. We accept the mantle passed to us from generations of civil rights advocates whose work made so much possible for our children. We go out to meetings, we prepare presentations, we make phone calls, we sign petitions, we send money.

But the sofa beckons. Loudly. Why do we make life so hard for ourselves, we wonder.

Last night, when the sofa’s call had reached a fever pitch, I was serendipitously reminded of these inspiring words of Robert Frost:

Stopping by Woods on a Snowy Evening
 
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.
 
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year. 
 
He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.
 
The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
 

So many of the folks I’ve met in recent years who have made advocacy and justice their life’s work inspire me. Even Bobby Kennedy, a great example of someone who could easily have whiled away the years on the sofa, on the lawn in Hyannis, at the club, but through the gift of his sister’s own challenges decided to head back out onto the trail to make the world more just for all. In fact, the last lines of Frost’s poem were found on Robert Kennedy’s desk the day he died.

In re-reading this, I am aware of how smug this post reads. Let me be honest. The woods are lovely. The sofa calls. And often I succumb. I am not trying to make anyone feel guilty, even myself, because I don’t think guilt is particularly motivating. I guess I’m just trying to say thanks to the folks who inspire me to get up off the couch every now and then.

Why do we make life so hard for ourselves? You know the answer. See you on the trail.

A few minutes in the hospital lobby

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. Relishing the few extra minutes and the chance to get centered before a day of lectures, I grab a private seat in the lobby to slip in a few minutes of meditation.

I’m a pretty straightforward vipassana meditation gal, usually just “gentling myself” (thank you, Jon Kabat-Zinn, for this tender phrase) myself toward awareness, moment-by-moment, on purpose, using sounds as my anchor. But on this day, with a delightful kinetic lobby sculpture clanging away, along with the murmurs of pacing parents on cell phones updating friends and family on about another long and probably sleepless night, sound is too challenging a focal point.

Leaning into the palpable emotions that surround me, I make a quick adjustment to instead try out a few minutes of tonglen meditation. Tibetan for “sending and receiving,” tonglen meditation is one in which one breathes in the pain of others and breathes out the means of their relief. Setting my handy iPhone timer, I close my eyes, put my feet on the floor, and welcome whatever pain shows up. In this place, there is plenty to be found.

On each inhalation, I draw on my own experience of my past suffering in this very space, and breathe in hot and sharp pain — not just my own but what I imagine the children, healers, the administrators and the other parents, might be feeling right at this moment. On each exhalation, I breathe out a cool relief.

I don’t know if this really helps anyone but myself. I hope that on some level this intention manifests itself as some peace in the world, some real and specific release from pain, but I can’t be sure. I do know that in being willing to open myself up to the suffering of others, I open myself up to all emotions, even good ones, peeling away the layers that create a barrier between me and the rest of humanity.

Breathing in pain, I breathe out comfort.

Breathing in fear, I breathe out ease.

Breathing in anger, I breathe out openness.

Breathing in impatience, I breathe out patience.

Breathing in impulsivity, I breathe out steadiness.

Breathing in pride, I breathe out humility.

Breathing in resignation, I breathe out perseverance.

Breathing in isolation, I breathe out connection.

Breathing in confusion, I breathe out clarity.

Breathing in despair, I breathe out strength.

Breathing in pain, I breathe out love.

May all children be free from suffering and harm.

May all families be free from suffering and harm.

May all staff be free from suffering and harm.

May all beings, including you and I, be free from suffering and harm.

Embracing Special Needs Parenthood…same great taste, but juicier

There’s a change I’ve been putting off for a long time because I didn’t want to confuse anyone, but I just can’t hold back any longer. Not being able to stop one’s self is either a sign of an incredible lack of impulse control or a wonderful burst of creativity that simply won’t be checked. Hopefully this is a case of the latter.

Depending on how you’re viewing these words (in an email, on-line, on your iPad or e-reader) you may notice that the blog formerly known as Embracing Special Needs Parenthood  looks completely different and has a new name and address, Durga’s Toolbox.

I’ve been writing about Durga for a while, why she inspires me, how I enjoy looking at this crazybeautiful life as a blessed opportunity to grow my capacity, to acquire tools and most of all, to live life fully awake. Durga reminds me that I can invite life to “bring it” and that it’ll take more than the usual skills to stay present, to stay open, to stay in the middle.

Not all entries will be about Durga’s toolbox. I just wanted to refresh the look and find an easier domain name to share. I’m also hoping to add a page about some academic research that might interest folks and I’m contemplating whether pseudonymity suits me.

P.S. To all the generous folks out there who’ve taken the time to click a “follow” or “subscribe” button: I have no idea how this address change will impact you and whether you’ll continue to get content in the way you’ve chosen. I hope it’s still coming. If not, I’ll try to find you. Your companionship means a lot.