Sunday, May 27, 2012

Learning to Fall

“This is what I have found: to let ourselves be seen, deeply seen, vulnerably seen; to love with our whole hearts, even though there's no guarantee -- and that's really hard, and I can tell you as a parent, that's excruciatingly difficult -- to practice gratitude and joy in those moments of terror, when we're wondering, "Can I love you this much? Can I believe in this this passionately? Can I be this fierce about this?" just to be able to stop and, instead of catastrophizing what might happen, to say, "I'm just so grateful, because to feel this vulnerable means I'm alive."
-- Brene Brown, from her 2010 TED Talk (embedded below)

My niece did something incredibly brave this week, and by chance I was there to witness it. My lovely, fourteen-year-old niece did something incredibly brave, and it did not go as she’d hoped. She put herself out there in a highly visible way, knowing she might face criticism and rejection. And when the worst happened, when the big, ugly world lashed out at her, there was nothing any of us could do to take the sting away.

Although we have lived hundreds of miles apart for most of her life, only seeing each other maybe once a year, for the first year of my niece’s life, we lived under the same roof. She was the first grandchild in our family, and for seven years the only grandchild. I had held and changed and fed many babies in my years of babysitting, but my niece was the first person I ever held just moments after birth. And when I held her for the first time, I was overwhelmed with emotion I had not imagined I could feel for someone else’s child. Our family had grown, and we were all suddenly cast in new roles: my brother was a father, I was an aunt, my parents grandparents.

My niece and I circa the late 90's floral dress craze.  The ivy in the hair thing was never a craze, and even my niece was scared to look at me. 

Now, fourteen years later, my little brother has almost a decade more parenting experience than I have. He and his wife have raised this gutsy, poised, talented girl. Meanwhile, I am still running around pulling toddlers down off furniture and cutting everyone else’s meat up for them at dinner time, half crazed and unable to hold a conversation without having to bolt away mid-sentence to intercede on some urgent physical violence type situation in the next room. We are on different stages of this parenting journey to be sure.

And yet, I recognized the look of terror on their faces as my niece stepped up to the plate. I recognized the look of awe they had watching her shine. And sadly, I recognized the mix of fear, anger and helplessness when they realized that in putting herself out there, she took the risk of unleashing a flood of hurt and disappointment that they could not control or soothe or kiss away. On some level, that is the same fear I have felt at every milestone my children have faced, that terror and then awe and then the sickeningly vulnerable realization that at any moment they could stumble and fall, and I can’t save them from any of it.

At the same time, I remember what it was like to be fourteen and want something, to prepare for it carefully and show up bravely, believing that if you did your best it would be enough. And then to be steamrolled by the truth that life is not fair and sometimes, for any one of a thousand reasons, the best man (or woman or girl or boy) simply does not win. Sometimes the boss’s son gets the promotion, or the person who happens to fit into last year’s leading lady costume gets the part. Sometimes you sprain your ankle on the morning of the track meet.

Not getting the part or making the team feels like taking a cannonball in the gut at any age, but as a child or as a teenager, the disappointment can be crippling. In fact, when I was a teenager, I was so discouraged by a couple of bad auditions that I decided I might as well give up singing all together. I had two brothers who could do no wrong on stage, who could sing anything you put in front of them, and I decided that since I would never be as good as they were, I would just give up this thing that I loved to do more than anything.  I was so rigid that instead of bending into the force of rejection and being able to spring back from it, I let it break me.

When I went off to college and had the chance to start over with people who didn’t know me or my family history, I told everyone that I couldn’t sing, that I was terrible at it. Even when people sang happy birthday around me, I faked singing it off key. When I was alone, driving in the car or when my roommate was gone, I would sing my little heart out but always nervously, with my windows up or looking over my shoulder with the fear that I would be found out. When I finally had the nerve to sing in front of anyone other than my family again, it had been so long and I had built up my failure so much in my head that I felt like I had been stripped naked in front of ten thousand people, all ready to jeer at my glaring inadequacy.

 I’ve been watching and re-watching this TED Talk by Brene Brown on shame and vulnerability. I found this talk at a time in my life when I was clinging so hard to my perfectionist tendencies that I had basically shut down. I was feeling inadequate in pretty much every area of my life, and as a result I had fallen into a trance of numbness and apathy. I got up everyday and went through the motions, but I felt as if I was living behind a three-inch sheet of glass. When I heard Brene in this video describe the tendency to want to numb uncomfortable emotions, to eat, drink, spend, gamble, religion or sex them away, I nodded in agreement. It’s just easier to do that sometimes, I thought, to protect yourself from disappointment. But, she explains, “you cannot selectively numb. So when we numb those [negative emotions], we numb joy, we numb gratitude, we numb happiness.”

After years of researching what makes some people able to live open-hearted lives full of meaningful connection with others, full of compassion and joy, she found that the key to a full life is the willingness to be vulnerable. Putting yourself out there even though you may fail. And then getting up and doing it again and again. It is the definition of courage, which is like bravery’s older, wiser, soft-spoken brother.

We have to fail in some ways – not make the shot, get turned down for the date, fall off the horse, not get the part – to succeed in the big ways. People who have mastered the art of connection, joy and resilience, who have shed the crippling insecurities that breed shame, are people who are willing to stand up and fall on their face. A bad audition doesn’t just make you better prepared for the next audition; it makes you better prepared to be fully engaged in your life.

I have been thinking of my niece today and hoping that she is settling into her vulnerability softly, that she is even now witnessing the birth of a courage that was not possible before her disappointment. And I am reminded to look to my own kids, to ask myself if I am letting them stretch themselves enough, if I am giving them room to fail or if I am trying, rigidly, to protect them from themselves.
My beautiful niece with my baby brother (yes, I can still call him that) and my sister-in-law.  Grainy photo courtesy of my iPhone.

I am learning that when you become a parent, one of the reasons that it feels like your heart has instantly grown three sizes like the Grinch on Christmas morning is because your opportunities to be vulnerable and to display courage have just doubled. You will hurt when they hurt, see the jeopardy when they only see the adventure, and will be tempted to keep them locked away from the dangers of life, fearing how keenly you will experience whatever befalls them out there. But, on the other hand, you will be plunged into the fullness of a life rife with this raw, inescapable vulnerability, and when they shine, you’ll be lit up like the 4th of July inside. It is, truly, like there is more of your heart to break, more to mend, more to share.

So how do we pass this gift of vulnerability on to our children? How do we have the courage to give them the chance to learn courage of their own? I would not urge my son to plunge his hand into a flame just to learn that fire is hot, but it seems that I have to learn to let him do the emotional equivalent of that. I may have to let Nico try out for basketball knowing he doesn’t have the body type for it. I may have to register him for a spelling bee we all believe he can win knowing that because he is confident in his ability, losing would be doubly painful. Time and again, I will have to put Lincoln in situations with typical children and give him the chance to succeed right along with the opportunity to be mocked or shunned by people who don’t understand what it is like to be different.

And through it all, somehow, I have to show that it’s not the winning that teaches us. It’s not getting the trophy that enriches our lives, but watching someone else walk away with the trophy and knowing that no one can ever walk away with our self worth. Somehow I have to help them learn, when they step up to be judged or graded or chosen for whatever thing their heart desires, that the real prize is not something anyone else can give them. The real prize is to be able to stop in that moment and say, win or lose, “I'm just so grateful, because to feel this vulnerable means I'm alive."

Tuesday, May 22, 2012

The Waiting Room

We've spent a lot of time at the doctor's office lately, and the waiting room always makes me think of a poem I wrote right after Lincoln was born.  Back then, we were inundated with doctors and tests.  EKG's, blood tests, hearing tests, Down syndrome clinics: we were sent to a slew of experts who were supposed to tell us just how broken each part of our baby's body was.  Sitting in all those waiting rooms and looking around at the other mothers, I felt I had been initiated into a terrible club for parents whose blissful expectations had been smashed up against the reality of a fragile and ailing child.

The Children’s Hospital

That thing I built in my head,
That sandcastle where we would live, you in your
Smoking jacket and me in my glass slipper,
Has crumbled in the bottom of my purse
Beside the old chapstick and crumpled bills.
It sticks to the pen I always carry, gumming up the tip
So I can barely sign my name on one more form.
It deposits itself in inky clumps on my third medical history
This week, as if my handwriting stutters.
But it’s just the residue of my gutted expectations that I insist on
Bringing with me everywhere.  Monday afternoon and
The doctor must be busy.  Mothers in ponytails
Pretend to read last season’s magazines while
Their broken little birds hop around the waiting room,
Those precious things in tiny sneakers and back braces,
In pink jumpers with radiated scalps too bald for
The matching barrettes.  June’s Good Housekeeping
Lays open on my lap.  Page 128 is “Fall Fashion Made Easy”
But we all wear the same uniform here: jogging pants,
Some bottom of the drawer t-shirt, that look of summoned bravado,
An old purse filled with worn insurance cards, keys
To a used car, peppermint saved for a coughing fit in church,
Pens choking on the debris of our misfortune.

That was four years ago, and today, though I remember that sense of gutted expectations, I also laugh at the tone of despair I took back then.  It's true that Linc's diagnosis smashed my expectations to pieces and at first I was painfully tiptoeing around, always expecting to get a shard of glass slipper lodged in my heel. But what I didn't know at the time was that getting to face life without being burdened by some preconceived notion of how it's supposed to go is incredibly freeing.

I still hate those waiting rooms.  Lately it's been a cruel string of them, prenatal visits that gave way to ER rooms and hollow, grating follow-ups.  Just the thought of filling out one of those "what are your symptoms" charts seems overwhelming at this point.  But this week, I had to take Lincoln in for a presumed infection.  I knew it probably meant another long round of antibiotics, knew it meant the whole family could soon be infected and we would be back in the doctor's office one by one waiting for our very own prescription.  I was so angry that morning, angry that I had to go back to the doctor, angry that something else was going wrong and that life just wasn't cooperating with my plans.

But by the time we were parked in the familiar waiting room chairs, the anger evaporated, was swept right away by the sweet, soft hands of that baby we used to think would be a broken thing.  Linc climbed into my lap and grabbed my cheeks with both hands.  Look at me, he said without saying a word.  I need your attention now. 

He pointed to his nose and said "nose," asking to play our pass-the-time game. "That's right," I said, "That's your nose.  Now, where are your ears?"

"Ears," he said, touching both ears.  As we worked our way through his beautiful little body parts, his beautiful, functional, not at all broken body parts, Nico sat beside us reading about mythical creatures, interrupting us every few minutes to tell us about hydras and minotaurs.

Sometimes I forget how far we've come. I forget what we thought this journey was going to look like, that we were expecting a lifetime of choking on our misfortunes.  But no, instead we are exploring healthy eyes and ears with healthy fingers.  We are journeying into the world of mythical creatures on a weekday afternoon.  We are laughing so loud in the waiting room that other patients look over at us and smile, too, overcome by our joy and love and hope. We are sick sometimes, yes, but we are not broken, not a single one of us.  And on those days when we are stuck in the waiting room, we always know who to lean on, who to read to, and who to laugh with to pass the time.

Friday, May 18, 2012

The Great Big Birthday Hug

This weekend we were invited to a lovely birthday party for one of the boys' friends.  As soon as Nico saw that the invitation promised a train ride, he was adamant that we just had to go.  "It's a real train ride, mom! Can we go? Can we go?  Please?"

And so, come Saturday afternoon, we were off to the big train party.  It was a gorgeous May afternoon in the park, and there were streamers to wave and trees to climb.  


I must admit that getting an invitation to a kid's birthday party is a bit of a stressful experience for me.  I over-think it, read over the invitation several times, and look at the calendar, praying there is something else already scheduled in that time slot.  When I see a big yawning hole in the calendar at the time of the party, I start with the questions.  Are siblings invited?  The invitation doesn't say anything about siblings.  Does that mean I should skip it if I don't have anyone to watch the uninvited brother?  Or should I ask if I can do a drop off?  Are these kids even old enough for drop off parties?  

Most of these parties are on Saturdays, and since Sam works on Saturdays, the divide and conquer option isn't available for us.  We are kind of an all-or-nothing birthday package, which is fine for our close friends and family, but what about invites from school friends?

And then there is the whole issue of what to get for a gift.  I hate walking down the toy aisle searching for a toy to jump out at me and look a) affordable, b) exciting, and c) just off-beat enough to not already be gathering dust at the bottom of the birthday boy or girl's toy box.  Incidentally, this toy buying stress is the primary reason we ask people not to bring gifts to our kids' birthday parties.  Of course, we are also trying to teach our kids to equate celebrations with loved ones, not stuff.  But in all honesty, the real reason we typically put the "no gifts please" statement on the invitation is to spare poor parents that deranged walk through the toy aisle where you find yourself asking your children, "What about this? Does Billy like this kind of thing?  Or this, what about this one?  Which one do you think he would like?"

I can make myself crazy with these things, which is why when I am handed a birthday invitation, I often just freeze for several long seconds, like it has sent an electric shock right up my arm and temporarily incapacitated my brain.  And then I drop the thing and walk away, telling myself I am probably busy that day anyway.  

The whole thing would be hard enough for a worry monster like myself if I had two typical children, but I find myself getting stuck on the Down syndrome thing when it comes to parties.  I worry that Linc will misbehave, or Nico's friends will ask him why his brother is different.  Many times Linc is not quite able to understand the games or participate in the crafts.  Usually, I just let him try and do his best, but if he starts to make a mess or be disruptive, I am stuck holding him off in a corner somewhere, trying to keep him from screaming bloody murder that I have taken him away from the fun.

Linc can do so much now, he can join in and play along so well these days, that I can almost foresee a day when we can attend birthday parties without incident.  In fact, this weekend, Linc was thrilled to be included in the party.  He waved his streamer with the best of them and followed the gaggle of party goers as they bounced back and forth between the craft table and the oh-so-tempting the cake table.  When it was time to board the train, Nico chose a seat up front with the birthday boy, and Linc and I slid in a few rows back.  As we rode, I thought about how much like the other kids Linc looked at that moment, waving his streamer and laughing and chattering.

As we climbed off the train and headed over for cake, I started to relax a little.  Things were going well, I told myself.  Perhaps I've just been underestimating what my boys are capable of, I thought.  After cake, the big kids went back to tree climbing, and the birthday boy's dad pulled out a beach ball to throw around with the kids on the ground.  No matter how hard he tried to throw his little leg up and pull himself onto the tree, Linc finally had to admit he was too short to join in with the climbing, so he happily threw himself into the beach ball toss.

And that's when it happened.  You see, I was busy trying to get this dang child to give me a normal smile, not one of those six year old plastic-face jobs he usually throws out.


Ah, but I relaxed a little too early and my attention was divided at a crucial moment. I was checking out my photographic gold when a very young little boy out in the park with his family tried to join in the beach ball game.  This poor little guy, who was not part of the birthday party, was just learning to walk, and I made the silly assumption that his parents would jump in and pull the little guy away from the game.  Instead, they smiled when he toddled over and tried to take the beach ball out of Lincoln's hands.

Well, by the time I saw what was about to unfold I was running, but wouldn't you know it, I was too late.  The boy pulled on the ball, and Linc pulled back hard enough to knock them both to the ground.  Again, it all would have been okay, it would have been just a little fall, but at that moment Linc noticed that he had the little guy pinned down on the ground in prime position to receive one of Linc's patented Hugs O' Death.  The parents were still smiling (the fools!) as I ran over and tried to dislodge Linc's fingers from their baby's neck.  See, what Linc does is hug and hug and hug.  He grabs people around the neck and hugs till it hurts.  Quite literally, till it hurts.

Now, our friends and his teachers know to expect the move, know how to help steer him away from smaller Hug O' Death targets who, understandably, are terrified by the move as it often knocks them over and turns into a wrestling style squeeze slash pin down.  But these poor parents had no idea it was coming and were, again understandably, shaken and angry about the attack on their little one.  

Those who know and love Linc always say that he just has too much love, that he's just hugging as hard as he can because he's so full of love.  And let me just say, I love you dear friends for seeing that because, generally speaking, that is the case.  Linc does not seem to be trying to hurt kids when he does the Hug O' Death; he genuinely seems to be trying to give them a hug.  He wraps his arms around their little necks with such joy, but he just does not know his own strength; and when the force of his hug knocks them both over, he just seems to panic and squeeze on for dear life.

I know eventually he will grow out of the Hug O' Death.  We've been working with him on this for years now, and for a long while he seemed to have gotten better.  The last few months, though, we've seen a resurgence of the Hug O' Death, and it is the one thing I would fix if I had a magical mamma wand that I could wave over him.  It worries me that people will see this as a violent act done by an untrainable child, an indication that the slurs and stereotyping about people with Down syndrome are true.  How can we show people that raising a child with Down syndrome isn't all that scary when our child is bowling their children over with terrifying hug attacks?

In the car, as we left the party, I was upset.  I was brooding on these questions that have no real answer and wondering if it would just be easier if we never left the house. I was still brooding when we got home and I sat down to look at the pictures I had taken, but Linc would have none of my pity party.  He curled up in my lap and looked at the pictures with me, oohing and aahing over his favorites.  He laughed out loud at the action shots, pointed and said "ball" when we got to the beach ball pictures.  When we'd seen them all, he rubbed my cheek gently and said "ma ma" and gave me kisses over and over again.  In that moment, I saw anew that he is, truly, so full of love, so full of sweet, undiluted love for people that comes out in a million little ways.  Sometimes that comes out as a great big birthday Hug O' Death, but far more often it comes out as following his brother around to play, as curling up in laps, as showering us with kisses, as rushing to comfort someone when they cry, or as an exuberant yelp of joy when someone he loves enters his line of sight.  It's not all great big birthday hugs, I reminded myself.  There are train rides and streamers and cake, too. 

Tuesday, May 15, 2012

Morning Reflections: Insight from Getting Out of Bed This Week


This morning I took my dog for a run wearing my husband’s Rosie the Riveter shirt. (Now, really, that is just a satisfying sentence to be able to say.) There was a blessed familiarity about the ritual, a long awaited return to normalcy. It’s been a while since I had a good run. I took a bit of a break from running after my half marathon in the fall, and then I gave it up entirely shortly after finding out I was pregnant. But this morning I was back at it, carrying the spirit of Rosie right along with me, her bicep bared, proclaiming “We can do it!”

The enthusiasm of spring was on the wind, though summer’s bite was just behind it. Every part of it felt so familiar, so predictable. My skin remembered the faint sting of the season’s first real exposure to the sun; my muscles remembered the rhythm and the ache of running with surprising forgiveness. My brain remembered so quickly the feeling of being strong, of pushing myself past what I think I can achieve, of pumping my feet even when I feel like stopping.

There was great comfort in conquering my weakness out on the pavement, in agreeing with Rosie that I could do it, that I could still be strong and determined and just keep going, no matter how much it hurt. Running has been a little act of bravery for me, an act of defiance against my overactive fear of failure.Coming home red-faced and huffing, I crossed the threshold a champion and rewarded myself with a cold shower while my cheeks were still pounding with the rhythm of my pulse.



I woke to kisses and handmade presents, to poems written in the loping, zealous handwriting of a six year old. I woke to a sleepy husband with unruly hair who sat up in bed and wished me a Happy Mother’s Day. It was a morning of family breakfast, of biscuits with honey, of little ones eating in their pajamas, standing up in their chairs and being reminded to sit down and eat.

It was a morning of rushing to get out the door and make it to church on time. A morning of looking for little shoes under the living room furniture and buttoning tiny buttons over round, full, tiny tummies. The smell of coffee and eggs promised to wait for us in the kitchen, along with an unwashed skillet on the stove and a handful of dog food scattered across the tile.

Into the car went bags and insulated cups of caffeine-on-the-go and toys stowed away in stealthy little hands, and the feeling of home trailed along with us, too. The boys were chattering in the back seat, and I was checking my makeup in the mirror while Sam was fiddling with the garage door opener and the radio dials.

It was a morning of movement, a flurry of events, one thing after another that quickly became one thing on top of another.  And then also it was a morning of stopping, for one brief second as we climbed out of the car together, and taking in the sight of boys in their Sunday button-down shirts.  A morning of taking Sam's hand and sighing with contentment, rolling my eyes that I would surely be handed a carnation that I wouldn't know what to do with, and yet being proud, so very proud to be a mother and watch my little family scramble in to church on Mother's Day.




This morning, as I walked in to work, the sky was grey and full of threatened rain, heavy and swollen with the moisture it was not yet ready to release. I read once that smells are more potent right before and after a rain, heightened somehow by the moisture and barometric pressure. Today I remembered that stray factoid and then thought about how smells trigger the most intense memories, and I felt as I was walking that I was, like the rain in the clouds overhead, tamped down by heavy air, hemmed in by the weight of memories.

The sidewalks were slick with sweat and dirt; water clinging to their gritty surface had liquefied the old surface grime, the dirt from yesterday’s shoes. The trees hulked all around me, too still, leaves poised as if breathless and waiting for the wind to return, listening for the telltale sigh of its approach. The air seemed to swallow all sound, though, even the dampened thump of my shoes on the sweaty pavement. A frozen moment, it seemed, like stepping outside of time itself. For several long minutes, I saw no one and heard nothing but the muted sounds of my advance, the occasional rustle of plastic in my purse and my own dew-cushioned footfalls.

The morning reminded me of myself these past few weeks: swollen, frozen, waiting for release. The past few weeks have seemed to exist outside of my life’s normal timeline. I feel like some science fiction character waiting to phase back into my life.

But this morning as I walked, tamped down and hemmed in by memories, I realized that in just a few minutes I would step out of the heavy morning air and into my office. There, the artificial glow of fluorescents and the current of crisp, manufactured air would be humming right along. The clocks would be ticking faithfully away. Time would be steady and constant and would sweep me right back up into it. By lunch, probably, I would forget I had even seen the frozen moment, forget that I had seen my own reflection in it.

Thursday, May 10, 2012

On Motherhood

I heard a song this morning, an old favorite, “Mary” by Patty Griffin.  I already had Mother’s Day on my mind when it came on, and I had to stop and listen to the lyrics that mean something so different to me now than they did when I first heard the song a decade or so ago.