Reunited, and It Feels So Good

My boy is a big boy now. Here's proof. This woman has a heart of gold and was Lewbug's PT from the week we got him home from the NICU. Megan has since moved with her sweet family to Antigua, Guatemala.  We are grateful for her understanding, sensitivity and playful nature and miss her terribly.

Guess who came to visit yesterday?

Megan, there are many things you do in life but you have had an extraordinary impact on the lives of so many children. You opened your heart to us and have given us so much support. So much gratitude for your magical visit on what could have only been a very busy, busy trip for you.  It meant the world to us. You are a true gift!

Summer Shenanigans

Life is full right now. Bursting at the seams, sweaty and leaving a trail of chaos as only summer can do.  Funday with Nana and Michael!

Anna aka Nana and LJ doing their thing--  she has brought so much beauty, laughter and love into our lives and will be missed tremendously next year.  We fully support her and send her our bestest wishes in her business adventures.  Bittersweet to let her go, but happy we will still have her nearby for weeknight datenights and occasional babysitting.

So Much Joy In This Face!

Grateful Just to be Grateful-- Nate had some amazing adventures on the Chester River in Maryland. Our dear friends who are moving to Ethiopa at the end of the summer were wonderful hosts. We went fishing off the dock, kayaking, stayed up way too late and all the kids spent much of the weekend swimming, catching frogs and taking turns "driving" the boat.  They took occasional breaks to watch the World Cup.  Obviously, we are going to miss you E & A!!!  So excited to travel vicariously through you and recognize what an amazing adventure you and your sweet family are about to embark on.

Nate's Happy Place- Camp Green...I know this picture may not show him smiling.  But honestly he loves it.  His day today consists of camp-wide assembly, archery, ropes, nature, lunch, swimming, karate and then mad science.  It sufficiently wears him out!  Plus he's there with his best buddy, Bennett.  The day this photo was taken was Green Day.

Camp JCC- trading roles for the day. LJ the Special Needs Director and Jessica the Happy Camper.  LJ has a thing for her!!  He also likes to be all official, complete with ID badges. So far he's enjoyed cooking, baking, swimming, a concert, crafts, playground time, dress up days and there will be an upcoming field trip to see a play (Camp asked me whether they should get a bus with a wheelchair lift for the field trip. I'm impressed with everything.)

Happy campers. Truism. Lew's friends get so excited when they get picked to ride the elevator up to the main level with him.  Lewis says his best friend is Jacob. Heart melts.

FAO "Shorts" Schwarz // New York City with Nanny and Babu.  The coolest, custom wheels from RideMakerz.  Took an hour to build.  LJ and I played the piano from the movie Big and "test drove" many cool rides.  Nanny and Babu also wined and dined us at Max Brenner's Chocolate Bar & Wa Jeal Sichuan Chili House. Nate was so stoked to order the chocolate pizza with melted milk and white chocolate meteors for dinner!

An Epic Weekend...Nearly Did Me In (We took the train up from DC.  Hopped on many busses. Walked. Ate. Saw the Gazillion Bubble Show (well LJ protested).  We came. We conquered.

Good Morning NYC's Central Park. Missing Nanny and Babu already!!

 
80s Day at Camp.  Universe, meet Madonna. Uh I mean Molly:)  She is a wonderfully entertaining, imaginative, caring person and my new work wife!  She's sassy, and kind and has a heart of gold. She's not timid either- her dad is a bee-keeper and she is not afraid to don her beekeeping suit and veil to tend to the bees and harvest their honey.  Welcome to the hive Molly!

To the tune of Single Ladies by Beyonce;)  The camp counselors are performing this song for a camp-wide assembly at the end of the week.

  

I know it must sound like such a charmed life.  I'm ready to re-live childhood and channel those carefree vibes.  Happy week to come soon in the Outer Banks with my cousins, aunt and uncle!  More pics to come soon.

If LJ Had a Pinterest Account, It Would All Be Food Shots

And these are a few of his current faves:

PS America's Test Kitchen and Barefoot Contessa get lots of airtime at home!

Courage & Work

"I tell you, my friend, all happiness depends on courage and work. I have had many periods of wretchedness, but with energy, and above all, with illusions, I pulled through them all. That is why I still hope, and hope much."--Honore de Balzac, letter to friend Laurent-Jan, December 10, 1849, in The Works of Honore de Balzac, Volume 20, translated by Katharine Prescott Wormeley (1899)

"The Moon"

I went to a weekend meditation retreat this weekend with Karen Maezen Miller!  I feel as though my cup has been refilled.  I've refueled.  I feel wonderful.  This passage has stuck with me so I felt I should share it here.

Transcribed talk by Dogen Zengi : : The Moon

"Whether we see a crescent moon or a half moon, in any of the phases of the moon before it is full, is anything truly lacking?" Maezumi said in the talk.  "Perhaps you are more logical than me," he laughed, "and you don't wait for the day your life will be full!"

Then Karen Maezen Miller shared a story of the girl and the moon in her new book "Paradise in Plain Sight".

reflecting light.  Only our perspective changes.  We rob ourselves when we mistake the unreal for the real.  

Your heart is always whole, just as the moon is always full.  Your life is always complete.  You just don't see it that way.

There is a pattern to it all.  A precise and invisible orbit that brings the full moon around again without fail.

No More Homework, No More Books...

Mom, Christy Everett, has two beautiful children in Alaska and keeps a blog titled Following Elias. Her words always touch my heart. I think Elias is such a courageous boy and I wonder and wish someday if that will be my LJ.  She granted me permission to share a recent entry she posted on the eve of Elias' last day of school. I really connect with everything she feels and says. She put it into words I could not articulate.  This mindfulness of appreciating the way things are, yet always a hint of longing.  

The Eve of the Last Day

Elias, tomorrow you will complete the 4th grade, surrounded by typical kids, ten like you, but oh so different.

And not.

Every one of us bears inexplicable challenges. Some visible to the eye, others hidden behind masks of normalcy.

As your school counselor, I know some of the students' secrets and in many ways you have it pretty good.

Your own room, a full fridge, a closet full of clothes.

Structure, boundaries, space.

And parents who love you just right.

I remember walking down the hall once with a sullen angry boy, damaged by abuse and neglect, you happened to be walking past with your unique gait, your canes, your eyes that rarely connect with mine. The boy didn't know you were my son and he said, "I feel sorry for him."

And I wanted to say: Don't. He has so much more than you. More than you can imagine. More than your heart knows.

Instead I just asked him, "Why?"

"Look at him."

Sometimes people only see your disabilities.

But one of the many things I love about you, is you never focus on them. You never complain about your eyesight or your muscle control. You laugh when you fall. And you get up again.

And you get up again.

And you get up again.

"I need a change," you announce when your pull-up is soiled, and if kids snicker, and I'm sure they do, you don't flinch. You don't seem to care what others think of you and that my boy is the space between lines, or outside and above them, the freedom to be exactly who you are.

What if all of us were born with this gift? 

Without the ability to compare and despair. To just be ourselves. To screw the in-crowd. To forget about the word should. To just walk freely in our own bones.

What if...

Instead our lives are often filled with longing, to be more like some image of ourselves impossible to fulfill; we live within the stories others wrote for us or on the tails of false expectations.

We inhale the hidden rules of what it means to be a boy or girl and forget to breath out our own songs.

But Elias, not you.

And sure there are times when I wish you joined the parade of so called normalcy, but today, I just feel so honored to know you and call you my son.

Happy last day of school Bud.

On Father's Day

“…I’ve made it my business to observe fathers and daughters. And I’ve seen some incredible, beautiful things. Like the little girl who’s not very cute – her teeth are funny, and her hair doesn’t grow right, and she’s got on thick glasses – but her father holds her hand and walks with her like she’s a tiny angel that no one can touch. He gives her the best gift a woman can get in this world: protection. And the little girl learns to trust the man in her life. And all the things that the world expects from women – to be beautiful, to soothe the troubled spirit, heal the sick, care for the dying, send the greeting card, bake the cake – all of those things become the way we pay the father back for protecting us…” 
― Adriana Trigiani, Big Stone Gap

No Stage Fright Here...A Graduate

LJ In the Spotlight_PreK Graduation June 2014 from Jenn S on Vimeo.

Last Friday night, LJ had a cute preschool graduation ceremony.  Here are some memories from the night.

After party batting practice with friends

Karate Chops and Photo Shoots and Lambs and Baseball Practice, Oh My!

Live your questions now,

and perhaps even without knowing it,

you will live along some distant day

into your answers.   --Rainer Maria Rilke

In the intervening month since my last post, I've come to the conclusion that these are the days to surrender to spirit, to the magic, to love and to the power of grace. That there my friends, is my monthly nugget of wisdom for ya.

We've had a wonderful month.  A month where the two opposing factors that continually plague me, "wanting to know and simultaneously not wanting to know how things will be?"  surrendered to the flash forward moments of a lovely reality. A reality involving Nate's intensity in baseball, his love of fishing, writing the last check to the accessibility contractor, Lew's first visit to a working wool farm with Didi and Bop in Loudon County, Nate attended a Nats game with Josh and we've had a family jaunt to Burke Lake to rent boats and go fishing on Memorial Day.

Nate at bat

Lewis Watching Big Brother

Completed bathroom photo- that's LJ's painting!

Different Angle of Completed Bathroom

Completed Ramp Addition to House

Nissy the Three Week Old Lamb, Three Bags Wool Farm

LJ Scaling the Fence at Three Bags Wool Farm

Playing with Nissy

First Time Breaking a Board at Tae Kwon Do

Lew Bug is a very social creature, but most days he prefers to talk with adults (there are many reasons but I suspect it's because its easier to communicate with the adults).  Recently LJ was invited to three peers' birthday parties & his eyes sparkle and his body flails with excited movements as I read him the invites. My mantra is I will help his legs carry him through Tae Kwon Do parties ( I am grateful for yoga squats).  I will help his hands feed himself birthday cake, juice and explore the party favors.  I will help his hand karate chop the wood in half (that's his cuteness above feeling victorious and proud after karate chopping the wood in half).  Me, I had a force-field-generating-super-power for that acute awareness of having all the other parents' eyes on me as we navigated the obstacle course and I maneuvered LJ into roundhouse kicks.  That's how I roll err shall we say cope with my insecurity, force-fields.  But above all, I will always be there to hold his hands and help his feet find the right path. It will always be harder for Lewis to fit in with his peers.  But I want him to try to do everything he can.  And when he does his best effort, he realizes he can really do quite a lot of things!

I can see his imagination working around the wonder that awaits him.  I feel his hope.  There is a kiddo behind the disability who is funny, sweet, compassionate, loves to play games, have bed time story time, be competitive, snuggly, and just downright be a kid. So here we are at the beginning of summer.  In three weeks, Lewis will get to attend a daytime summer camp for 6 weeks as will Nate.  We are all excited to get the summer fun underway.

The Next Jayson Werth- Wearing Nate's helmet which popped off every 
time the bat connected with the ball. Comical.

How To Wake Up the Neighborhood

Yep.  Sunday morning calm...it was not.  Josh snuck away to do an autocross/solo event this morning with his new Subaru WRX.  I dropped Nate off at Sunday school for two hours.  Once we returned home, LJ and I decided to head out for a stroll in the neighborhood at 9 o'clock. I had Annie the wonder-dog's leash in one hand, a big ole mug of coffee in the other hand, and LJ was at the controls of his power wheelchair.  Only problem was that a neighborhood beagle had escaped its home unbeknownst to that neighbor Cathy, and was walking up toward us in the middle of our street.  Neighbor Sean's two dogs were in their backyard and my lovely Annie started a barking contest with these other three canine creatures.  So LJ starts screaming and stopped driving his car in protest ( I do not like to call it his wheelchair.  His "car" sounds so much cooler. ).  I realize I forgot to put his glasses on to further complicate matters.  So LJ runs his car smack into the curb at a standstill, Annie is trying to lunge at stray beagle and is still barking, poor neighbor Sean comes out the front door of his house in lounge pants and bed hair, asking if we're okay.  I somehow figure out how to take the controls of LJ's car, while he cannot be consoled, he's upset because Annie and dogs are still barking, and my coffee is splashing everywhere.  Everybody's fine.  Geez.  Just wanted to go for a morning walk.

I Love My Life The Way It Is

Mon Amour,
It's a big day.  12 years ago today, we got hitched in sunny Florida.  We were originally supposed to be married on May 4th but then the hotel double-booked that date and we got bumped.  So we got married on April 20th.  It was so hot that day, people's dress clothes were sticking to their skin during the ceremony.  Thank goodness we didn't wait until May! A day later we set off to ski Whistler, Canada for our honeymoon! Ah, the good life.  Your smile is the source of my joy.  I'd do anything for you (except iron your shirts). May the next year to come be just as beautiful, bountiful and blissful.
Thank you for being so good to me.
XOXO
Jenn

Randoms: Total Communication Approach

A mystic mamma said that confident communication is possible when you realize you can choose to grow rather than say you can't.  Around here, we are definitely open to communication.  All types.  American sign language, signing exact English, augmented communication with a device and of course speech with verbal output.

Based on LJ's latest IEP, he is persistent in communicating his wants and needs in the classroom.  He will tell stories and recall activities that he participated in. He does this by pairing his speech with signs and AAC.  His wonderful speech therapist and special education teacher said "Although he has significant weakness in strength, coordination and intelligibility for speech, he is persistent and takes his time for speech."

He takes his time with speech.  Lately, I take my time with speech.  (No more "crazy mom" and getting stressed by the process).  The sharp words and self-doubt inside my head no longer have my permission to reside there.  Life is teaching me to move a little bit more gently.  A little bit more slowly.  LJ is teaching me to be more gentle with things as they come and as they go.

And so another preschool year is coming to a close.  A big transition this year.  The structure of the Reed School has been profound for LJ.  The integrated classroom has afforded Lew Bug opportunities which range from social opportunities, recreation, academic and therapeutic. He has progressed leaps and bounds.  Its bittersweet, but we are soon going to have to say farewell to our extended "school family", this familiar place, the big open arms of wonderful educators and therapists who have helped us along this journey.  But we are surrendering to everything in life that truly matters.  It's not a trajectory but more a deepening of understanding.  It is with a playful curiosity, that we trust LJ to rely on his own wings.

For Lew's debut in Kindergarten he will attend one of Arlington county's only elementary schools with a Communications Program and a Total Communications/ Deaf (HOH) Program.  LJ will attend the Communications Program (click here for deets) at Patrick Henry.  What matters most in life, this series of big steps and little steps, is that we slow down to take the time to notice them.  We have met with our new Communications Program "family" and are much less stressed and breathing easier about the transition.  The teachers are dedicated, assertive, curious and seem so with-it.  LJ will also have a dedicated speech therapist in his classroom that will be working side-by-side with the special ed teachers.  While it is a self-contained classroom, I am trusting the process.  His IEP stipulates that he will get to be integrated with all the other peers at lunch, recess and specials.

I knew we were on the right start when Ms. Hill said in the IEP meeting with his current IEP team this year (for next year), you can go ahead and put whatever you think works.  If we need to "Mama and I will just get together and have a meeting and...we can just change it then."  Whatever it takes to get LJ where he needs to be.  I like her a lot.  And the other special ed teacher's name is Mr. Lewis so we have that going for us too!  We've got the new communication device paperwork signed by our doctor and we submitted to insurance and we are on track for a great year (assuming the device arrives by September)!  We are right behind you, Lew!

And on a similar vane, I'm feeling proudly victorious about getting Lew's private speech therapist to agree to come do sessions at our house instead of the clinic.  We have been at the same clinic since LJ was a baby, but it is not wheelchair-friendly.  Now that LJ is 38 lbs, it is no longer possible to keep carrying him up and down the steps to get to speech therapy.  Routines are changing.  Spring break is upon us and before we know it, Summer break will be here.  My heart is wide open and ready for the unimaginable.

Snow Dance!

Bearing in mind the old phrase, "Wherever you go, there you are."  Starting from where we were,  and getting on track to the life of my dreams-becoming a ski bum (and also a painter).  Family vacations could just be the best cure if they could bottle up the cold, crisp Rocky Mountain air and magical, blue skies.  This kind of existence is blissful.

What I'm trying to say is that we stopped to try and enjoy the view.  We're taking the week off from therapies, school, appointment-making, shoveling, doctors, cleaning and errands.  We chose blue skies, fresh air and good people (Anna and my cousins:) to travel with to Park City, UT.  We'll get back to all that other stuff next week.  Instead we chose to embrace the magic of creating something that did not exist prior to us dreaming it up and making this here vacay happen!

“Those who say it cannot be done should not interrupt the people doing it.” 
- Chinese Proverb

I let go of the things I must do and shifted to the things I wanted to do.  I wanted to feel steady on my skis as my legs moved through the snow and my arms and poles flowed with the wind.  There is always space out in the vastness of the mountains.  I wanted to flow with the energy of the earth... to the sun... and sing my songs of pure, unabashedly, tone-deaf tunes as I let go of expectations for myself and carve tracks down the mountain channeling my inner child.  There is always space.  I let go of shoulda, coulda, woulda's.

We've had a wonderful time so far.  Moments I've wanted to pause, savor and remember.  The kids crunching snow underfoot.  The spirit of this town.  Roaring fires.  Games.  Birdsong from the woods lining the chair lift path.  Coming home exhausted from barreling down the slopes.  More-than-eager little boys here and there and everywhere.  Drinking it up, slowing it down, reveling in it, every last drop.

Go LJ go! With his new friends, Tom and Wendy.

Cousins at breakfast time! Mindcraft...

Getting on the lift with his new friends, Hunter and Adam!

We are so fortunate there are some really great people in this world- altering the trajectory of our world.  The folks at the National Ability Center have been amazing.   After last year's trip to Vermont, Nate was a real pro and LJ took to it well, just like we thought he might.  LJ took to it with even more enthusiasm than last year.  Nate happily volunteered to skip ski school the first two days and enter the fold of family skiing right by LJ's side.  So love!  We're so grateful. Thankful for all NAC volunteers' wide open hearts, patience, hands and strong quads! The adapted skiers and boarders were equally so inspiring giving LJ high fives and encouraging words of "right on, dude!" 

LJ Tree Skiing with Hunter

Nate the happy camper

Daft Punk LJ

Apres ski hot tub with Anna!

Huge thanks to all who give their time, talent and that make this sport possible and without barriers to all those who participate!

But as amazed as I am of LJ, his brother and his friends (and their turns), I still lost that dream that I initially had for them. My pain can only be measured in love, and both run deep. I lost something and it undeniably hurt and someday that hurt will slow down, fade, hopefully gracefully.  The biggest insight from from this ski trip is the idea of fragile beauty.  Now, I dream of the Canadian Olympic Gold Medalist, Alex Bilodeau honoring his brother Frederic, with CP, saying Frederic would have won three times over...and dream of that being my boys.  The interviews of Bilodeau warmed my heart and jerked tears from me.  Grateful tears mixed with the other.

It was just last week that I marveled as Nate supported LJ under his armpits, sock-clad and fresh snow fallen outside, skidding across the living room hard-wood floor and "rockin' it" to the finish line.  Such a wonderful duet. And surprisingly contrary to losing the dream, I have a different perspective. A new dream.  My dream gets a little crazy and I don't just dream I'm walking hand-in-hand with LJ and Nate.  I actually dream LJ is winning a gold medal.  And so is Nate.  And they are both actively participating and sharing their passion for the sport of skiing together.

But, as with all things, I have no idea where this adaptive skiing thing will lead.  For now, I keep practicing;  carrying helmets, poles and skis and doubling back for lost mittens and hats.  I'm carrying it all the way down the line straight to our own awards ceremony, standing on a kitchen stool as our awards podium.  My anthem is lots of kid laughter.

Without attachment to the end point.  "Wherever you go, there you are."  This moment is all we really have to work with.  I pick bliss. We will see where this leads.