A gift from the messengers

Special needs fill nearly every thought and moment of my life lately. My mind has become a radio station that plays all advocacy with no commercial interruptions. Health care reform and medical home are in heavy rotation, along with the usual med refills and parent-teacher conference stuff. It’s not universally popular music like the Beatles; it’s complex, dissonant sound that requires effort and courage to listen to. Philip Glass, Rachmaninov and creepy crime drama soundscape rolled into one.

So when I found myself heading to Washington DC (yes, for a health care conference, PCORI), I decided to arrive a few hours early to unplug and reconnect with a passion from my life before special needs—art.

The visual arts have always played a sacred function in my life. Although I love words, I experience an entirely different connection with life when I react to image, line and color. Even when it’s challenging, it feels good.

It was a smart move. Strolling through the National Gallery of Art, I was transported through time and space. All thoughts of accountable care organizations and conference abstracts were arrested for a few moments. But the escape didn’t last long.

The museum’s collection includes a number of fantastic paintings depicting the Annunciation—the moment in the history of Christianity when a messenger angel arrives to tell Mary that she will give birth to Jesus. It’s such a pivotal, rich moment in Christian iconography that there are many versions of the scene in the Gallery’s collection.

The Annunciation is special to me, though not for reasons of conviction. I don’t have a particularly strong faith, more a comfort from stories told and retold throughout my childhood.

The reason the subject is special to me is because this angel, this messenger of peace, is named Gabriel. And so is my son, the one I write about in this blog.

Years ago, when I told my deeply religious aunt that we were going to call our son Gabriel, she replied matter-of-factly, “Gabriel. He will be your peace baby.” She was right. He is one of the most patient, loving, accepting, generous and forgiving people I have ever met.

National Gallery of Art, Washington DC

Even though Gabriel (the angel) is associated with peace, his arrival must have been quite terrifying. No one expects an angel to show up, do they? He’s got to calm people down so that they’ll listen to him. In most of the stories about him, the first words out of his mouth are

Do not be afraid.

So whenever I see any painting of the Annunciation, I first think about Gabriel (my son), his namesake. Then I think: Do not be afraid. And the juxtaposition of those two thoughts always stop me in my tracks.

Much of the emotion I have around parenting Gabriel is fear. Not all, but much. Fear of the future. Fear of not doing or being enough. Fear of doing it wrong. Fear of not feeling the right thing. Fear of being judged for all of it. Fear of never being able to work through the fear.

So there I am, on my little escapist jaunt, riveted by the image of this magnificent angel, appearing before a young woman going about her day. He extends to her a flower of purity, a lily, and reassures her: Do not be afraid.

Looking at one of the paintings, for one moment I am able get my arms around the fullness of my own parenting experience. The terror and the peace. The peace and the terror. It’s there, in oil on board, just right there in four square feet, inviting me to react, to feel it, to stay with it. So I do.

And then it’s gone. I move on, strolling once again. Through the Dutch masters, through the Impressionists, through the gift shop, back out on to the street, back to the conference, back to life. Both the escaping and the embracing of the fear have worked their magic, and even though the music of disability gets cranked back up again, this time it feels like it’s got a beat I might even be able to dance to. At least, I’m not afraid to try. Thank you Gabriel (both of you) for the message.

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No Pity, part 1

I bring along my son, who attends a special education school many miles away, when I pick up my daughter at her neighborhood school’s after-school program.

Since he started attending the far-far-away school a year ago, the ties that bind him to our neighborhood are snapping, one by one. Granted, they were never strong, as he’s always been in a self-contained special ed classroom. But hanging out in the after-school room while his sister wraps up an activity and gets her stuff together is often the only five minutes he gets on any given weekday to hang out with a typically developing child besides his younger sister or her friends, who are not his friends.

Yesterday, he and I were approached by a young boy, probably just his age, who looked at my son, turned to me, and asked, “Can he talk?” Assuring him that he could, I facilitated a little introduction. Stimulated by the bustle of the activity in the room, my son had a hard time making eye contact and speaking in a voice loud and clear enough to be understood by the boy. “Why does he talk like that?” the boy asked. Slowly and gently I replied “Well, because his brain works a little differently than yours or mine.” Piggybacking on my egregious error of talking about my son as if he wasn’t there, the boy replied, “I feel sorry for him.”

“You shouldn’t,” I told him. I corrected myself. “You don’t have to. He’s happy.”

A teacher overheard us, told the boy to go back to what he was doing. My daughter appeared, ready to go home. There was just too much commotion in the room and too much chaos in my head to know the right thing to say, so I let it drop.

Pity is just an indicator of not being aware of someone’s strengths, which in turn is an indicator that there isn’t much opportunity to get to know someone in the first place. Inclusion, inclusion…how long do I have to wait?

My six word memoir(s)

My airwaves have been silent lately. Some new professional opportunities have offered me the chance to share my perspective as a special needs parent to such a remarkable degree that I seem to have little time and few words left for blogging.

But an opportunity came up last week to create and share my six-word memoir. Have you seen these? Six words to capture the essence of my truth. Even I have time to find six words. Granted, my truth has changed a lot in the last 10 years. Becoming a parent of a child with complex medical, cognitive and behavioral needs has gotten me access to deeper truths I wasn’t aware of before. Or maybe the truth hasn’t changed, but the vantage point has shifted.

I’ll give you a for instance. On the eve of my son’s birth, after years of struggling to get pregnant, I was convinced that all of our challenges were behind us. My memoir then:

And they lived happily ever after.

Fast forward a few years, after the two cardiac interventions, the MRIs, the g-tube surgery, the hundreds of Early Intervention sessions, the memoir would have looked something like this:

Not quite what I was planning.

Or, if I’m being totally honest, I can say that I didn’t really need all six words. Two would have sufficed:

Why me?

But something has shifted again. Diving into the deep end of the disability world, finding companionship and empowerment, spending time in silence to reflect on what my son, my family and I really need and want, going from having a broken heart to one that was broken open wide to let life in—it deserves a new headline. So here it is:

How did I get so lucky?

It’ll change, I’m sure. What’s yours?

Push it good

If you’re interested in media portrayals of disability, here’s a new one to add to the DVR list: Push Girls, a new reality show about four gorgeous, celebrity women who all use wheelchairs. Seems hot and sexy and real, which could be good. Or maybe hot and sexy and exploitative? We won’t know until we see it.

No big whoop?

The special needs blogosphere and social media outlets are abuzz about this recent Target ad featuring a boy with Down Syndrome. This kid is cute. Really cute. It’s great to see him there.

The big news isn’t the fact that he’s in the shot; what people seem to be focusing on is the fact that Target didn’t make a big deal about it.

I wonder, though, how they could have “made a big deal” if they wanted to. Send out press releases? Add a little arrow pointing to him with a label, “Check it out, we’re really cool”? I don’t think so. They didn’t make a big deal about it because simply including him is a big deal. Enough said.

I don’t mean to sound cynical. I am glad to see all kinds of people portrayed in media, there not because they’re a token representing a particular slice of the market, but because they’re just there. And if it gets folks talking about and encouraging true inclusion (like this great post by Shannon Dingle about the ad and creating inclusive religious communities), then I’m definitely satisfied.

We can celebrate this milestone. But let’s not say that we’re done, OK?

Here’s how we’ll know when we’re done: when all children are included, not only in photo shoots but in schools and communities and in real lives all around the world, when no one makes a big deal about it, and no one needs to point out that we didn’t make a big deal about it.

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.

 

A new perspective on sinking and swimming

Other people’s dreams can be so tedious, I know, but it can’t be helped.

I’m at a support group with other parents of special needs kids; I can’t see the other participants (am invisible to them, too) because the room is all obstructed views. I ask if we can re-arrange the seats, but am told that I don’t need to be there, this meeting isn’t about me, I seem to be doing fine and this is a support group for people with urgent issues, but why do I ask, they wonder, do I need to talk? I burst out crying, “I ALWAYS need to talk,” and I’m whisked away to another part of the room before I infect the others with my hysteria.

I am led to a table surrounded by a Greek chorus of special needs parents who in real life know my heart the best, and I plead “When will I need to stop talking about this?”, embarrassed, ashamed that I’m not cool about all this, that my struggle means that I don’t love my son, that I’m not a good mother. “I mean, he’s healthy, he’s not in pain, he’s not sick, he’s loving, he’s great. So why do I still feel like I need to talk about this?” They absorb my words impassively. Without pause my words continue to flood out, “Sometimes I think about what it would be like if I could take all of his challenges away,” and they shake their heads vigorously, moaning, “No, no, we must never do that, it can’t be done,” but I can’t help it, the words are already out, Pandora’s box has been opened, and the only way to describe what that would be like is to show them, and I raise my face upward and gasp for breath, arms floating as if I am breaking the surface after being underwater much too long, and they all raise their faces too, and they all inhale deeply with me.

“But that’s not the right metaphor,” I said, “because that would mean that now, I am drowning.”

And I wake up gasping for breath.

———–

Last weekend I went on a retreat called “Living Beautifully with Complexity and Change.” Our theme, we were told, would be this prophesy, taken from Perseverance by one of our teachers, Margaret Wheatley.

From the Elders of the Hopi Nation
Oraibi, Arizona  June 8, 2000
 
To my fellow swimmers:
 
Here is a river flowing now very fast.
It is so great and swift that there are those
who will be afraid, who will try
to hold on to the shore.
They are being torn apart and
will suffer greatly.
 
Know that the river has its destination.
The elders say we must let go of the shore.
Push off into the middle of the river,
and keep our heads above water.
 
And I say see who is there with you
and celebrate.
At this time in history,
we are to take nothing personally,
least of all ourselves,
for the moment we do,
our spiritual growth and journey come to a halt.
 
The time of the lone wolf is over.
Gather yourselves.
Banish the word struggle from your attitude
and vocabulary.
 
All that we do now must be done
in a sacred manner and in celebration.
For we are the ones we have been waiting for.
 
————

In my dream, I was right. Drowning wasn’t exactly the right metaphor. I wasn’t drowning, but being torn apart from clinging to the shore. And the clinging, I see now, doesn’t come from me wanting him to be anyone other than exactly who he is, but from wanting the rest of the world to be a place where he — where all of us — is safe, welcome, valued. I know that to help the world become this place, I must let go, surrender to the river and its destination, and sometimes I can. There are no guarantees that the middle of the river is any safer, any less treacherous, but it feels like the right thing to do. Every moment becomes the chance to do it again, to re-commit to letting go and being in the middle, where all the important work gets done.

Here I float, in the middle of the river, in sacredness and celebration, banishing the word struggle from my attitude and vocabulary. Will you join me here? When I forget, will you remind me to let go?