From the Mountaintop Archives

Random Ramblings, with Sunshine

It's a sunny Monday morning in Alaska. Well, I should say Anchorage because it could be snowing right now in other parts of Alaska, a state twice the size of Texas. And to be truly accurate, I should say Spenard, my quirky corner of Anchorage, because the city limits are larger than my former home state of Connecticut and we've been known to have different weather systems in different parts of the city, depending if you live closer to the mountains or the water.

We live on the West side, closer to Turnagain Arm, a waterway with extreme tides and deceitful mudflats that can swallow your feet  whole and hold them in a vise grip until the water returns. If your lucky someone warns you when you first move here or come to Anchorage for a visit. Don't walk out on the mudflats!!! You hear the legend of the honeymooners marooned in the mud and you swear you will never set foot on that treacherous surface. Not even to retrieve a child's hat blown by the 40 mile an hour winds that often accompany Turnagain Arm. Not for the thrill of a risk. Not for buried treasure.

Yesterday we biked along the Coastal Trail, a paved path that runs along the Arm, offering views of The Sleeping Lady (MT. Susitna), a mountain that resembles a woman lying on her back with her long hair flowing behind her. As legend goes she lay down to sleep to wait for her lover to return from battle.  She still waits today.

"It seems like everyone is waiting. The whole world is waiting..." Sings Dan Bern, one of my favorite singer songwriters who performed two shows here last weekend. I  saw him two days in a row and have been singing lines to his songs ever since:

"Are you gonna follow your soul... or just the style of the day...just the style of the day."

Elias knows this line now too and will say it with me. Its become my mantra in the last week because despite Elias's outward challenges his soul is fully intact. His soul is whole. And if I let his soul guide me instead of missed milestones than I can stop waiting for the next step. Waiting for him to take his own step. Waiting for the water to overcome me. Waiting for the knight to return from battle in order to start living.

I feel the sun on my face as I sit at our small wooden table and write. The snow pile that covered our front garden is gone and the yellow crocuses have opened. My feet, free of mud, feel bolstered by a warm breeze. The kind that brings awareness to the here and now. The kind that makes each step a little lighter.

Prayers for a family across the globe

Today I turned off the computer and did not answer the phone. Instead I spent hours in my own version of church, the one that involves digging dirt until your muscles ache, biking till your legs burn.

I did not plan to spent the day this way but part way through my morning I read this.

And I decided to pray in the way that I know how. By moving my body until it screams, "I'm alive."

I do not know Nelba personally but we are connected through our words. Through our love for our sons--Elias and Loren-- whose unexpected challenges make us scribble our sorrows for the world to see.

Today Nelba wrote the words  that slice every parent in half. Leaving us to wonder how we ever felt complete before we had children.

If we will ever feel whole again.

Though Nelba lives in South Africa and I live in Alaska, I cried this morning while feeding Elias melted cheese on toast.

I cried for a mother who lost her son.

In her previous post, written only a day earlier, Nelba writes:

“Come and see the rainbow!” I called and with Loren on my hip and Marco holding my hand we went to stand on the deck to look at the rainbow. Marco was impressed, but only until he realized my car was back. Then he went to inspect the car – rainbow forgotten. Loren, however, focused on the rainbow perfectly and kept staring at it with such an expression of awe and joy on his face that I stood watching him until it finally faded.

As I held his warm body in my arms I could only feel gratitude.

This remains my child of hope.

I may find god outside church doors but I have to believe there is a plan. That this family's pain is not random. Not the luck of the draw. But that a greater design is behind what we can't understand.

Today, in Loren's honor, I adored every repetitive word Elias made. I reveled in his determination to drag himself up after each fall. 

I loved his roaming eyes, seeing them as the shaded windows to his curious soul.

His labored breath music.

His awkward frame home.

And this evening, I decided not to attend a lecture about alternative approaches to Cerebral Palsy, Autism, ADD, and a host of other conditions connected with damage to the brain. I probably would have learned valuable information. I might have met other concerned parents. But tonight there is nothing wrong with Elias.

He is enough.

He is enough.

He.

Is.

Enough.

May the busing begin

The day after Elias practiced climbing up the monster bus stairs, when I arrived at school to pick him up, I walked through the door and saw him chasing a line of small children, his little legs barely touching the floor as he muscled his walker forward with his arms, saying: Bus... bus... bus...

I stood and watched as he moved towards me. Bus...bus...bus.

When he reached me, he looked right at me, registered mama, and rolled right past: Bus...bus...bus.

How could I not sign him up to ride?

So this week, instead of riding in mommy's green car to preschool, Elias climbed those monster stairs, with help, and sat in a seat, buckled for safety, all by himself.

I stood outside the long bus--yes, a long bus though in essence, in function, in service,  it is a short one--in front of our blue house, and looked through the windows towards Elias's seat. Small children waved at me from their seats. I waved back.

When my eyes landed on Elias's window, I could only see the tip of his striped hat.

As the bus pulled away, I hopped in my car to drive to school. I needed to see his face when he unloaded. The sub bus driver--yes, on his very first day we were not greeted by the bus driver with the wide warm smile but instead an unfamiliar face peered down at us from behind the wheel-- got lost between our house and the two miles to Turnagain Elementary. So what should be no more than a ten minute drive (it takes me three) turned into a half hour road trip for Elias.

I stood outside the school with Elias's teacher, chatting, and waiting, and wondering what was passing through my little guy's mind. When the bus finally arrived and Elias emerged, he appeared dazed, wide-eyed, but content.

This morning, day two of his busing adventure, he refused to eat his French toast, and only wanted to play with his toy bus as we waited for the bigga bigga bus to come to our door.

As excited as he is to ride the bus a piece of me feels like a bad mother for sending a twenty-five pound boy, who is not yet three feet, off to school on his own. A distant voice judges me for trusting my son with strangers. For not being there to walk him into school. For exposing him to "bus culture" when he is still so young.

But the other kids on the bus seem as starry-eyed as he is. And the attendant has kids of her own.

And despite my previous judgments, I am more comfortable loading him on the bus  because it is a bus for children with special needs--mostly preschoolers, with a handful of older children--but a familiar non-threatening world that feels oddly safe.

Maybe part of being a parent--of any child--is realizing we are capable of the unexpected.

For better or worse.

And that it's impossible to judge anything from the outside.

When we stop fighting what we don't know

It may just be a sentence. A few innocent words turned accomplish by their association with underwater fears. Something as simple as:

“I’d like to add another goal to Elias’s IEP.  I’d like to see him use more spontaneous speech patterns instead of repeating … to initiate conversation….”

The words grow more menacing, and pull from the deep, when echoed by a second therapist the next day:

“When asked what a cow says he answered moo but when asked who says moo he didn’t know …Elias seems to have a number of memorized phrases that he uses to communicate…. Echolalic…. similar to children with hydrocephalus or autism…”

And there it is. No longer hidden. Pulled to the surface. My fears dressed up in someone else’s words.

And forget the positive context. Forget the compassionate messengers. Forget all else said. Deficit blinds me. Deficient was all I could see.

Until two goats walk down Doris Street.

I just happen to be looking out the window when they walk past. “Elias, the goats are outside,” I say, assuming Laura—who we called the goat lady until we met her and learned her name-- is taking them for a walk. She lives on the corner of Doris and 33rd and pens her two pet goats in her backyard. The goats have lived here longer then we have and are both loved and hated by the neighbors. Elias LOOOOVES the goats so we regularly walk down to see them and to say: Baaah

When I realize they aren’t on leashes but just sauntering past on their own, I throw Elias in the stroller to run down and tell Laura. No car. No answer when I knock. I knock on her tenant’s door and apparently wake-up the young woman who shows no interest in helping me round up the goats but does give me Laura’s cell phone number. I reach Laura as she walks into a noon meeting, her car in the shop.  I tell her Elias and I will do what we can to round them up and she directs me to their leashes, telling me she owes me one.

I find the goats at the other end of our street eating brown grass on the side of the old blue apartments. I park Elias and walk towards them. Someone watches them from the basement window, she smiles at me as I approach with their leashes, then closes the curtain.

Clipping the leashes on their collars proves to be the easy part. Convincing them to leave their new “field” not so.  “Goats….goats….goats….” Elias giggles, as I tell Tiger and Rebecca—what else would you name pet goats?—that they are coming with me.

I pull.

They pull.

And we came to a standstill in the middle of the street.

A young couple drives slowly past, necks craned, careful to avoid hitting this spectacle, and park at a duplex a few houses down.  They ask me something about the goats and I say they aren’t mine, they escaped, and I’m just trying to get them to go back home. They chuckle, wave, and walk into their place.

“Walk… walk goats….” Elias announces as he kicks his legs and waves his arms, laughing with abandon.

The goats, either in on the humor or obeying Elias, begin to slowly walk towards home.  I push Elias in his stroller with my left hand while holding both leashes with my right. We can do this, I think to myself.

An SUV stops at the stop sign behind us; the driver rolls down the window and says: “Hi Tiger… Hi Rebecca,” as she holds her hand out towards them. The goats pull me backwards towards her car. She sweet talks them and asks me what they like to eat best. “They aren’t mine. I’m just trying to get them back in their pen,” I tell her. She smiles and says good luck before rolling her window up and driving away.

The larger of the two goats, aptly named Tiger, decides to make a getaway. When he puts his weight into pulling I can not get him to budge, so I park Elias and attach the smaller goat’s leash to his stroller so I can manhandle Tiger.  As I pull on Tiger’s leash, I hear the stroller wheels move on the gravel road.

I lunge for the stroller and stand in the middle of the street splayed.

Who the hell can help me? We know our neighbors on either side and yet I can’t knock on either door. Between Lupus and old age I can’t ask them to join this fight. It is me and the goats-- with Elias as my spectator, all giggles and “Goats…goats…walk goats!!!!!!”

Out of pity perhaps, Tiger cooperates, and both goats again walk in the desired direction. Again, I begin to think we can do it.  It’s possible. We make it all the way down the hill to their yard but when they see the pen they turn and bolt the other way, dragging me after them. I have no choice but to leave Elias next to the door to their pen, the one they broke through to escape, so I can hold one leash in each hand, and fight the goats head on, face to face.

Their leashes have plastic handles with buttons to control the length of the rope and since I can’t figure out how to lock them and the rope is longer than I want it to be, I wrap it around my hands a few times to pull the goats closer. Tiger’s legs also get wrapped up in the chord and for a moment I know either he is going to break a leg or I am going to lose a finger.  For a moment I’m scared that what began as an unexpected break from the norm will break me.

That the cost of fully living will be greater than I can bear.

“Help...” I say out loud from that place between laughter and tears, “Help….Help….” Not loud enough to be a true cry for help but loud enough for me to acknowledge that I am in no way in control of this situation.

I stop pulling.

And the goats follow me right into the pen--back home--as Elias looks on, all smiles.

Goat Tease

Just want you to know I'm OK and I'll be posting later today.

A hypocrite with her soap box on her head

(Editor's warning: Poorly edited and part-way through I needed a tissue.)

The truth is I'm angry. And that love I wrote about yesterday, well, it's not overflowing from my spring. Not for the past two days.

All the pudgy toddlers running around the mall today made me mad.

Instead of seeing Elias's repetitive way of communicating as cute he's frustrating me. I want him to answer a question straight. I want him to look at my face. I want him to connect. And yet I don't want him to hold onto my pants to stand up. i want space. And I hate myself for being frustrated at him for things beyond his control. As if he planned any of this!!

There's the tragedy in the national news but its my own drama that's kicking me in the stomach.

Pummeled by my own son's  brain.

I'm not writing this to be fixed or as a cry for help but to find out what's underneath the anger and as my fingers race to stay with these thoughts the only answer is fear.

I'm scared about what it means to have this adorable little boy grow up into a man who may never be able to care for himself. I'm scared that he may not be able to communicate in a way that I need him to because god damn it why should one little guy be burdened with so many challenges: breath, vision, movement, growth, please no, not communication too.

Now that i found the source the tears won't stop and they are as much for me as they are for him. I'm not just scared for Elias but sad for the little girl I use to be who sang into her bathroom mirror and was sure she'd be someone someday. For the young woman who moved to Alaska with money in the bank and nothing but possibilities ahead. I will never know that sense of freedom again. I'm scared of who I will become as Elias' mother and whether or not I will like her. I'm scared of breaking with one more piece of straw. I'm scared of more labels and diagnoses for a little boy who doesn't fit on any side of normal. I'm scared to have my fear confirmed.

This fear that Elias's processing differences are beyond preemie delay and visual impairment but that his brain may not allow him to reach full cognition. That he will be an intelligent echo who makes creative associations but never asks, "How are you?" And then waits to hear your reply. That he will not communicate in a way that society accepts. That I will never fully reach him.

Oh gosh, I'm not angry anymore, just tear-stained and tired. It's late and all I want to do is hold my little boy and whisper, "I'm so sorry Elias, I'm sorry, I'm sorry, I love you, I love you, I love you..."

on my soapbox

From the sidelines we always know exactly what should have been done. And in hindsight we can right every wrong. Or we can point fingers. Or destroy ourselves with guilt.

If I didn't play soccer during my first trimester maybe I would have carried my child longer. If only I didn't go out dancing during my 18th week, the night before the doctors placed me on strict bed-rest.  If only I'd heeded the warnings and truly understood what it meant to be high risk...

I know all about guilt. And how destructive it can be.

I've also been tempted by blame.  I could blame the woman who happened to be working the maternity desk the night I showed up with my water broken, with my 24 week baby on the way. We waited fifteen minutes before the emergency rush began. Fifteen minutes is not two hours but when a baby weighing less than two pounds is trapped in your birth canal unable to breathe, fifteen minutes is a lifetime.

Fifteen minutes is oxygen deprivation, brain damage and cerebral palsy.

Once the medical staff realized the situation they generated a frenzy of coordinated action. One of the assistants told our family they performed the fastest C-section delivery he ever witnessed. Our perinatologist, woken at three am, arrived just in time to save my son. He told us later, if he had not recently moved closer to the hospital, Elias would not have survived.

For every "what if" that could alter a situation for the better there is a parallel "what if" that could change it for the worst. Guilt and blame will not reverse time.

Guilt and blame will not bring anyone back.

Not Professor Kevin Granata, a dad, a coach, and one of the top five biomechanics researchers for his work with cerebral palsy. (Who knows where his work would have led?) Nor any of the other victims of the massacre at Virginia Tech. All loved. All needed.

All tragically lost. 

We are not omniscient gods capable of predicting tragic situations. I can't don my cape and reverse the spin of the world.

All I can do is grieve, as I slowly replace guilt with acceptance, blame with forgiveness, fear with love.  And in a culture fueled by fear, we could all benefit from a surplus of love.

I know very little-- but this I believe.

??????????????

I am thousands of miles from Virginia but I sit here stunned by what happened there this morning. The mass shooting overshadows anything else I could possibly write.

I can not fathom how a soul gets so twisted to shoot into a crowded classroom. I can not comprehend the agony of the families involved.

As a grad student, educator and former faculty child, schools have always been synonymous with home.

What is it like to have this sanctuary terrorized?

Best Shot Monday

Tracey from Picture This does something called "Best Shot Monday" where she invites readers to share their favorite photo from the week. So I thought I'd contribute an image I'm drawn to that I took this weekend.

When you have a son who does not have the balance to stand independently, reaching from one handhold to another is an uncertain act of determination and faith. I like this picture because it captures this:

The Flick of the Eyes

At a luncheon at UAA, where Elias received the above balloons, he expertly navigates around a crowded building that he has never been in before.

*****
"What's that a picture of?" I ask Elias, pointing to a large elephant.

His answer: a harmonica.
*****
"Ocean," Elias says, pointing at the water of Turnagain Arm, half a mile away.
*****
"Who do you see?" I ask Elias as he looks at a picture of me.

"Dee a doggy."
*****
Elias finds half a Cheerio on our grayish carpet and puts it in his mouth then stands up in front of the TV and points to a baby on the screen, "Babee!"

*****

We never know what Elias can and can not see. We don't know how his brain interprets his surroundings. We don't know the clarity or distance of his vision. One theory from our Pediatric Opthamologist is that his vision comes in and out-- and at his worst he is legally blind.

It's interesting living with someone who uses his ears more than his eyes. Instead of reaching towards others with his pupils, he uses words to make contact by repeating what people say.

The last few words of your sentence mimicked back is his way of glancing in your direction.

He does not nod or shake his head for yes or no. His way of saying yes is repeating your words.

Here is a typical conversation:

"Are you hungry?"

"Hungy."

"What would you like to eat?"

"Eat."

"Eat what?"

"Bood."

"What type of food?"

"Hungy bood."

"What kind of hungry food?"

"Kind of hungy bood."

"How about yogurt or applesauce?"

"Appledauce."

"OK."

"Yogurt."

"Which one?"

"Two."

"Are you counting?"

"Counting."

"OK, well come sit in your blue chair?"

"Dit in your bue chair."

"Alright."

"Aw right!"

He may or may not look in my direction as we talk. He may look everywhere and nowhere all at once. Or he may concentrate on a square block and put it in the correct hole of his shape box. When we want him to look somewhere and tell him to use his eyes, he closes them in a concentrated squint.

We've noticed though that he is starting to look towards people's faces, even towards their eyes, and his own eyes seem steadier than they use to be.

<

"His eyes our so much straighter," a friend who had not seen Elias for a year told us when she stopped by to visit this week.

He has had two eye surgeries to fix the crossing, but there is no cure for his Nystagmus, or in non-medical speak: constant eye movement.

And yet his eyes seem to be slowing down. As if he is learning to control them. To make the wild wanderers settle down and connect with others.

Every so often, he graces me with a flicker of eye contact, as his pupils momentarily connect with mine. My heart skips. It's falling in love for the first time mixed with maternal longing.

I wish I could let go of this need to communicate with my son through eyes alone. To be able to comfort (or scold) him with a glance. To engage in a secret conversation from across the room. For him to be fluent in the non-verbal communication I have taken for granted my whole life.

Instead he's teaching me a different language.

Not less than. Just different.