Neighborhood Ride After the Rain

I'm proud of the boy Nate's becoming.

LJ is doing fine after his surgery last week.  His heel cord and hamstrings are getting some relief from the botox procedure and we're stretching him everyday.  His PT is going to see about a padding for his leg brace so it positions at his Achilles Tendon to decrease him from pistoning out. Other than a few tweaks here and there, we go in for a post-op appointment with his doctor in the beginning of June.

Both boys are doing a phenomenal job.

In the Embrace of Park City

Writing and sharing with you that my sister Jessie was discharged from the hospital and is home recovering from her stroke.  She is making slow progress and we are gathering the strength, heart thoughts and perspectives many of you sent along to help cheer her on during the next several months of the healing process.  Holding her and you all in my arms...in my heart. You make a difference.

Park City Shredders 2015 from Jenn S on Vimeo.

A few photos from life lately....in the embrace of Park City, Utah......

The National Ability Center, affectionally referred to as the NAC by Park City locals, makes us think how as a parent of a special needs kiddo, you can lament or you can spend your time reflecting on how it can make your life richer.  It's become an important part of keeping myself grounded.  

For many people with special powers, the NAC is their safe place....family members and individuals with different abilities alike, but mostly for the adaptive skier.  It is a powerful and awe-some experience to see firsthand the NAC's encouragement of a barrier-free activity for people of all ages and from all walks of life. We are so fortunate to have the opportunity to spend time as a family in the nurturing, supportive arms of the NAC.

Realizing that for this individual, it was his safe place....the NAC!

"A Good Day with Cousins"

Molly and Lewbug

"This Will Be Fun" (Getting the hang of Lean Right/Lean Left)

 Zoom- Tomato Soup and Grilled Cheese Sammies! Nom Nom

"We love the people that we love, because they are there for us when we feel like we can't face life alone and they remind us that we don't need to face life alone! We love the people that we love, because we know that when we cry, it hurts them, too. We love the people that we love because we share mutually in tears and in pains and in struggles and in hardships, and we know that because we are together, we can get through that— together! Because of the people we love, life becomes livable! Because of the people we love, we know that we have people to share with in not just the good parts of life; but in the hardships, as well! We will never have to carry our burdens alone, because these people love us!" - C. Joybell C.

Hello there....it's me....

Not sure anybody is here anymore, reading this. I've written several posts in my head...but that's where they stayed.  So I figured I had better jot some updates down.  Been trying my best to slog through mommy role, yoga-teacher role and daughter/wife/sister/friend/chef/housekeeper/playground-monitor role.  Let's see.  Thanksgiving happened in Durham at Mema and Papa's house.

Dougan, Marcy, John and Josh cooking in the kitchen

Then it was my birthday.  Had lovely celebrations here

Such a beautiful soul! Love me some Lyon Hall too:)

and here

Full tummies and Full Hearts

Bigger Excuse #1 Neurology and ENT appointments...it had been so long since our last appointments that I almost forgot how tired this gets me.  LJ still doesn't sleep properly. At his annual check up this was the topic du jour.  His pediatrician put in a referral for us to go see his Neurologist again.  We discussed the muscle relaxer he takes and perhaps he's outgrown the dosing.  So the Baclofen has been increased and we've procured a doctors note so he will go to the nurses office at school at get a dose mid-day.  He now gets 4 ml by mouth three times a day.

Ear tubes plopped out.  Well, one did at least.  The other was stuck in the ear but wasn't helping matters.  Doc couldn't see behind it so I had to pin him down while the doctor took an instrument and scooped the lil tube out of his ear.  He had another bulging ear infection behind where the tube was stuck.  LJ will have his last dose of Amoxicillin tonight.

Last but not least, Dr. E prescribed Artane for Lewbug.  It also goes by the generic name Trihexyphenidyl Hydrochloride.  He's on the very low dose of 3 ml by mouth two times a day.  It's in the family of drugs used mostly to treat symptoms of Parkinson's disease.  We began 3 weeks ago increasing his dose gradually.  This Saturday marks the spot and we'll observe how he does on the drug.  Hopefully it makes it a little easier for him to move his body.  His fluctuating tone makes it challenging for him to grab anything or keep his balance.  I've noticed he has less secretions which is a known side effect of this medicine so that's a plus.

Excuse #2 We've been taking turns sleeping on the floor in LJ's room.  It's the only way we can keep him safe at night.  The novelty of the video monitor has worn off.  Despite the bathroom light left on all night, the noise machine lulling surf sounds, and a cocktail of sleep meds, Lewis has reverted back to banging his head until we intervene.  A mattress has been temporarily moved into his bedroom.  The air mattress sits in the corner.  I'm beginning to think we should hire a night nurse.  Sigh.  Until then, we eagerly await getting one decent night's rest.

Excuse #3 Physiatrist Saga. The back story: our old physiatrist works at Children's Hospital.  They have an annex in Fairfax which made my life a tad easier for scheduling appointments.  The school physical therapist and private physical therapist think his calf muscle is too tight.  Because he doesn't ever get his heel down on the ground, he can't make progress learning to walk in his gait trainer because he overcompensates on his other leg.  Cut to the chase, our insurance company denied our referral to go back to see our doctor.  The HMO now has a pediatric physiatrist in network that is only a short 45 minute drive (without any DC traffic) in Prince George's County, MD.  They wanted us to go to them.  So in the process to appeal that, I worked another angle.  Dr E (our in-network Neurologist) wrote in her case notes that she believed Lewis would benefit from botox injections under anesthesia.  She recommended he be referred to our 1st choice phsyiatrist at Children's.  Friggin minor victories but low and behold we were able to get the decision reversed!  So we will traipse to Children's for our botox consult in February.

These feelings won't go away.  There's a quote by Karen Maezen Miller: "As the kids step forward, they give birth to themselves; as the parents step backward, they give birth to a young adult, as painful as it is."  My baby will always be my baby. I get sad when I think about him one day going off to college and the house being so much smaller, quieter, weirder. Anyhoo.  He turned 9.

Call me bat-wing mad, but we hosted 9 boys for a slumber party to celebrate the occasion.  This in turn made for a long, crazy, cranky weekend. For your amusement, here's a sample conversation whilst playing the new PS3: "They're playing against the mets again." Other kid "They win." Over top of that kid "Woot!" Another kid "Yuck. Who farted?" Coupla kids "Uuuck." B "I ran out of Twizzlers." First kid "That's not how you play.  They don't even know the rules."  Someone else, "I'll be right back." Second kid, "Where you going?" Someone else, "I'm just gonna go around and pet Annie."  Since I don't sleep these days anyway, it was good prep for the sleepover.  The quiet room had 3 sleepers. By 11pm, not a creature was stirring, not even a mouse. But the rambunctious room could not be persuaded to sleep.  By 12 am they were finally quiet; only to wake me up at 3am. And then for good up at 6:30am playing the PS3 again. I think its a Christmas miracle that I was able to get all their teeth brushed the night before. Meh, everything else was uphill after that....

When did they get so tall? Crowded around the game

Oh, and I am planning a me-cation.  Booked my flights to India.  Taking the trip of my lifetime with my mom, sister and niece.  I'm so excited!! And I just can't hide it!! I know, I know, I know, I want to!!!! On tap are trips to an Indian family to learn their cooking style and enjoy a meal with them, the Taj Mahal, multiple bazaars, rickshaws galore. This Rajasthan Elephant Ride is also on the itinerary.



Oh yeah, though it may not seem like it, I truly am practicing what I teach.  I'm trying to learn to say "No, it's too much."  That's my new mantra.  If I repeat, repeat, repeat perhaps it will actually come out of my mouth when I'm just wanting everyone to be happy but in the longterm it really doesn't serve me well.  It is what it is. I'll keep you posted.

Hello.  How are you?

Surprise, Surprise

Surprises all around.  I thought for sure LJ and I both would be fighting back tears this morning.  Boy was I wrong.

He drove his especially-for-school "sticker-blinged" out car right onto the wheelchair lift, said hi to Mr. Patrick (a bus driver we had a few summers ago) and waved bye to me.  And just like that, my little one is off to his first day of Kindergarten.

His teacher's name is Mr. Lewis so he's got that going for him;) His daddy and grandpa Bop have engineered an adaptive pvc lever to help him independently open his own locker.  (Nate is jealous since he never had a locker in Kindergarten!)  Incidentally, Mr. Mr. Lewis had knowledge about LJ's love for adaptive skiing so he adorned LJ's locker with a sticker of a bi-ski athlete.

"A grand adventure is about to begin."

- Winnie the Pooh

 

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.

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.

Quieting Down, Chillaxin and About 9 Other Things

Everyone seems to be experiencing New England weather as of late.  It was 17 degrees this morning and the snow was still covering many roads.  As school was canceled yesterday and Josh was out of town, I set out to shovel snow while Nate and LJ created a snow slide in the backyard.  Then yesterday afternoon, Anna the Great came to my rescue and took LJ and Nate sledding (my fave part of the below video, is Anna apologizing for almost bulldozing another kid walking back up to the top! That and LJ's happy laugh.).  The kids had a ball.  This morning schools had a delayed opening. Short week for the boys as Monday and Tuesday were off as well.


LJ and Anna Sledding_Woodstock from Jenn S on Vimeo.

Like every other challenge in life, your circumstances become your reality.  And you just deal.  It's honestly been so long since our little accessibility project started, we forgot what it was like to not have plastic sheeting hanging everywhere and hammers going to work.  We also forgot what it was like to not have LJ sleeping in the guest room with one of us (but usually Josh was delegated to the task).  But I'm happy to report that things have quieted down and LJ is digging his own bed again.  We're pretty much all done with the exception of stuff on the punch list.  LJ also can rock the automatic door opener for his ramp entrance.  Your child's independence is one of the most beautiful things.

We've been working on LJ's IEP Meeting, his Re-Evaluation Meeting for "reevaluating whether our child is still a child with a disability who is in need of special education and or related services" (insert here: protocol and just going through the motions. Though I get why its there) and touring different neighborhood schools' Kindergarten classes for LJ next year.

I had a long meeting today with LJ's wonderful school speech therapist and teacher. We conferenced in an augmentative communications expert who is helping us order an Accent 1,000 through Lew's insurance.  It is basically like an iPad but more durable and sophisticated.  We ruled out the Dynavox and eye scanning systems through separate trials earlier in the year.  We hope that the Accent will provide the most success through building on language acquisition via a motor planning method (think muscle memory here but with icons and words).  Theoretically, it will go with Lew Bug wherever he goes and as he grows older and travels around his school and community setting, having it mounted right onto his power chair for ease of access (between his wheelchair and the communication device, he's get up costs about the same as a small car).

On Tuesday, January 28th, LJ will have surgery to replace bilateral ear tubes.  He'll be having an Auditory Brain Stem Response (ABR) at the same time since he'll be under anesthesia.  The last one was here.  Don't think there is hearing loss, but we've never caught a clear picture of whether there is any.  So this will be good to have some closure.

That's it for now.  Trying not to be overwhelmed by it all....For now.  I'll just flip upside down to change perspective.  Thank you to my yoga practice.

Photo of me Taken by Red Portrait

In Honor of My First Born's 8th Bday

All is really well.  It's Nate's bday.  Nate and his best buddies will be running the streets at Dave & Buster's this weekend to celebrate.  

As he's growing older, I want to remember and tuck away all the happy memories so I can recall them all later.  I want to remember his conviction telling me Santa Claus was too fat to fit down chimneys so he is "obviously, definitely a myth" as I listened thoughtfully while driving him to school one morning. (for the record he is not allowed to ruin it for his firm--Santa Claus-believing friends.)

I want to remember how he talks sweetly to his little brother and will do anything crazy like throwing himself off the couch or destroying a wedgit tower just to incite his brother's laughter. 

I want to remember hanging out on my bed one night after LJ was asleep, and Nate and I listened to music and then would play our guitar.  Taking turns listening to each other as we attempted to make some reasonably, pleasant tunes.  

I want to remember how Nate asked if we could make creme brûlée again soon, because it was soooo yummy and it's now his favorite dessert.

I want to remember how, in trying to understand why his playlist was not on my computer he said "wait, what if Mom sunk my iPad…" I'd called that fair and had a discussion about sink versus sync.  Or another funny moment when he was trying to turn on his Nintendo wii but I had earlier messed with the cords inadvertently.  Once he saw the picture, he exclaimed "Why is this in black and white?!  What is this the 90's?"

My boy is growing up so quickly.  Seriously, I'm so grateful for his love and laughter.  Happy birthday, Nate!! I love you.

Horse Sh!ft

I got to take LJ to hippotherapy today. When do boys lose their fascination with poop? I've attached the video from today's trail ride. The whole time we tagged along, Nate couldn't stop talking about the horse poop. LJ did great despite insistent pleas to remove his helmet (it was 90 degrees +). He was a total trooper and I just enjoyed being in the moment and appreciate all he is able to do these days. We've come a long way! happy trails and hope you all have a great weekend.
Horse Sh!ft from Jenn S on Vimeo.

Nate befriended Freddy the cat! the feline version of Annie the Wonder Dog