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?

Olaf

Shake It Off

Post by Molly Joyce.

Skip To My Lew!

Arlington recently put together a video for Walk Bike to school day.  Lewis and his teacher Mr. Lewis! are in the video.  And toward the end of the video the kids assembled on their field to spell the name of the school.  Lewis is in the lower curl of the C :-)  Click on the Walk n Wheels link below to go to APS website and press the play button.


Walk n Wheels

And just a few other fun things from the past few weeks of neighbor's birthday parties and of course Lew's....

Mega Punch Balloon Gone Wild from Jenn S on Vimeo.

Time To Turn Six

Lewis and Molly (his BFF)

So a rabbi once said that there's a beautiful contradiction and recognition of joy with a reminder of sorrow. There's no tears without honoring laughter. This weaves beautifully with yogic belief, we cannot have one without the other. Joy only exists because of sorrow, and sorrow only exists because of joy. They are brothers to one another, and like all siblings, they're closer than they care to admit. We are continuing to occupy that fullness of our beings. We have all sorts of beautiful contradictions in this celebration of Lew's life. We are humbled and inspired by LJ.  This day is so bittersweet. We lost and I hurt and I want it to stop. I want to let it go and find acceptance.  But we also won and I bubble up with love and he continues to teach us so much. And he is here.  And he is happy. And I breathe out gratitude for his place right next to Nate's, right there in the middle of my heart. Happy birthday Noodles Applesauce.

“But now I am mostly at the window
watching the late afternoon light.
Back then it never fell so solemnly 
against the side of my tree house,
and my bicycle never leaned against the garage
as it does today,
all the dark blue speed drained out of it.

This is the beginning of sadness, I say to myself,
as I walk through the universe in my sneakers.
It is time to say good-bye to my imaginary friends,
time to turn the first big number.

It seems only yesterday I used to believe
there was nothing under my skin but light.
If you cut me I could shine.”

~Billy Collins, from the poem “On Turning Ten”

Circus of the Senses

Wednesday, Lewbug's Kindergarten class got to have a field trip to see the Big Apple Circus.  It was featured on the local news.  Have a look see. (sidebar: LJ's favorite act was the dog riding the pony!)
I had so much fun chaperoning the field trip and getting to experience such a wonderful opportunity for my boy.  So grateful!


DC News FOX 5 DC WTTG

Sit With It

"Comparison steals our joy."

The above is a quote from the Imperfection Issue of Kinfolk magazine. I keep coming back to it.  The other day, I had a moment of vulnerability.  Think sleepless night because LJ hasn't been sleeping well again; every single pantry-shelf sundry was on the floor of the pantry with a few broken ceramic mugs to boot (when LJ is mad and can't sleep he kicks or bangs the wall adjacent to the pantry causing an avalanche); can't get LJ to stop crying long enough to eat a quick breakfast before the bus comes; expensive Cuisinart coffee maker breaks so I had not been properly caffeinated; Nate keeps asking me to get the dirt spots off his new school kicks; drove Nate to school; saw a former classmate (who used to be in a walker) LJ's walking to school with his siblings and mom; broke down crying because I couldn't stop comparing LJ to this little boy. My heart ached; as I parked in driveway saw a lovely neighbor-friend who was walking back from the bus stop and I waved rather coldly and raced into the house.

After the last few weeks that presented a lot of struggles with transitioning back to school, I've had some time to reflect about the lessons of vulnerable moments.  There's an intense amount of courage required to embrace vulnerability. Preparing yourself for increasing anxiety, new fears and old fears defending their territory ruthlessly.  Dropping all pretense and letting people see the raw, emotional, messy you.  Not the sugar coated you...but the self that's made entirely of flaws, imperfect, struggling you. Courage is being open to how it feels when you are faced with struggles and the annoyances of circumstances over which you have no control and instead of hiding or stopping in your tracks you lay it all out on the table and turn these things into little helpers.  I realize that often when I feel out of control that I shut down. This morning I give thanks that I am enough.  To let myself be seen, vulnerably seen.  I am grateful to be the fumbling, awkward, nervous sometimes abrupt & abrasive me in those moments of intense vulnerability and instead of running from it I will try to sit with it. I embody the unfiltered me. I am going to just be.

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

 

Bread Chronicles: Part Deux

So those of you that aren't new to the blog will know that LJ is quite the foodie.  Since Josh's birthday (the kids gave him some Pullman Loaf pans- fancy schmancy pans that cost up to $50! Here's a video from America's Test Kitchen if you're not familiar with the pullman-loaf-pans).  As a result, we'

ve been up to some bread baking here on the home front at LewBug's request.  Here are our most recent creations:

LJ and Josh's Sandwich Loaf from Last Week

LJ and Molly Baked Challah for our Friday Night dinner this week. It was the best!

Camp Adventure!

Brett and LJ Pump It Up from Jenn S on Vimeo.

Brett has been LJ's best buddy at summer camp.  We met Brett through Caroline- they're engaged and he frequently hangs with Caroline and the boys when she watches the kids.  (Nate usually challenges him to some hoops:) Congratulations Caroline and Brett! As our luck would have it, Brett was looking for a gig this summer before he commences grad school in the Fall.  And the rest is history.

Today, the campers took a field trip to Pump It Up....a giant indoor inflatable park.  LJ had a blast as you can see from the video. When LJ tired of the bounce house, Brett took him to his fave restaurant for a late lunch.  Fun times.

Thank you Brett!  You are so compassionate, enthusiastic, full-o-energy, funny and so tremendously appreciated by all of us. Best wishes for the next few nourishing, transformative coupla years ahead and the journey you are about to embark on.

The Good Life

Vacation felt almost surreal.  So much beauty in the waves.  Here's to peaceful times. To next year- a year older, wiser, taller and stronger.  Beach memories live forever.

This Is Summer

Favorite thing about this week in the Outer Banks is all the time we've spent together. We've had lots of time together-all 21 of us spanning from Lake Tahoe to Dallas to Boston and Durham. Sipping wine, cooking meals, laughing, playing on the beach, go-karting (go LJ go!) and even charter fishing.  The weather has mostly been perfect.  The first day was rainy, so we invented kayak and stand up paddle board (SUP) games for the pool. The house has a media room so there's been plenty of gaming from playing pool to foos ball to Xbox to boot.  One of the days the ocean was closed, but the beach was open.  There were red flags out saying no swimming.  Turns out the tropical storm created some dangerous waves and it wouldn't have been a good idea to swim in the surf.  So much gratitude for Nana coming and lending her helpful hands with the Lewbug.  And of course, thank you thank you thank you to Uncle Vic and Aunt Lenore for being such gracious hosts of our family beach week.  It has really, truly felt like a vacation for us.  Here are some pictures of our adventures:

We're Taking This Show on the Road

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.