Gratitude Sucks

We just got back from 2 days at Children's Hospital Orange County.  We went down so Simon could be assessed to see if he is a good candidate for a 3-week inpatient feeding therapy program.  He is.  He and Laura are going to go down there as soon as they have an opening (we're scheduled for early December but we'll see if another spot opens before then).  The Ronald McDonald House was awesome.  The Feeding Therapy team was amazing and totally in love with Simon after 2 hours.  He'll be in great hands.

Okay, so that's out of the way.

Tonight I am so pissed.  I am so pissed I want to have a total 3-year old, foot-stomping, thing-throwing, red-faced-screaming, totally irrational freak-out temper tantrum.

I just picked a fight with Laura about money and us getting financial support from our parents because I am so tired of being grateful I just want to crawl out of my skin.  I'm tired of being grateful for gifts I don't want.  Who wants to get gifts of money to pay for Occupational Therapy?  Who wants to use the educational fund great uncles set up for their child to pay for plane tickets to a freaking hospital to teach him how to eat?  Who wants get heartburn from free food made by Girl Scouts at a Ronald McDonald house?

Not me.

I'm tired of it. And I'm tired of being worried that I don't look/act/sound grateful enough for all the help we get.  Right now, I'm not even going there.  Cuz I'm tired of it.

I'm tired of working so hard to turn shit into gold.

I'm SO pissed that I had to wait until my kid was 5 years old before he said, "Mama, come sit next to me".  Right now, I don't care that some other parents will never even get that.  I'm pissed that we had to wait that long.  It's not right.

I'm so tired of comparing ourselves to families that are worse off and being grateful that we're not them.  I'm tired of saying, "Wow, things could be so much worse. We could have a kid that has x/y/z or doesn't q/r/s".    I'm tired of it.

I'm tired of picking up crumbs and holding them up like they're Manna.  They're crumbs.

This thing we are doing is so goddamn hard sometimes and I'm not even the one doing the heavy lifting.  Laura is.  She's the one that's about to get locked inside a hospital again for THREE WEEKS.  She's the one that quit her job and lost her career and has ended up waiting on Simon hand and foot.  Other mothers devote themselves to their children, but most other mothers are not still changing diapers and handfeeding at 5 years old. But Laura is. I'm tired of it for her.

I'm tired of living in a world where my Facebook feed is filled with news about kids dying.   Or getting hospitalized.  Or having to get all manner of godawful tests or diagnoses of crap I can't even spell.  With hideous regularity. Yes, yes, it's such a treasure to get to expand our world, blah, blah, but right now I'm just tired of it.

I'm pissed that we need a scholarship for summer camp and pissed that he's going to be with 3-4 year olds instead of kids his own age.  I'm pissed that we can't just send him to his neighborhood school and join the PTA and bake cookies like the other Moms.  No, we have to have a 4-hour meeting about it and wait for someone to spy on him in his natural habitat (his current special day class) and tell us if he can hang with the socially-messed up but smarty-pants kids or with the not-so-smarty-pants messed-up kids.  Whatever school he goes to, we will probably end up on some damn committee fighting for inclusion of kids that are all jacked up instead of shirking PTA duties.  I'm tired of it.

I am not feeling grateful for any of this bullshit.  It sucks. 

Seismic Shift

As a resident of California, I half-expect a life altering earthquake to happen at any given moment. I walk around with my ears tuned for the low rumble that signals earth-shattering movement. A few weeks ago there was a massive seismic shift that I missed. We're not sure exactly when it happened,  but something critical shifted for Simon. He has started closing gaps at a speed we can't quite comprehend.  As his teacher said, "it's like 50% of his programs loaded all at once".

First and most dramatically, our kid started eating.  Like really eating.  Pretty much overnight he went from eating *maybe* 5% of his calories by mouth to 30% by mouth.  He used to have a few good days of eating 2 oz of food at lunch but then he'd get a stuffy nose or he'd get a little gaggy or the winds were wrong and it would be over.  Now he just chews with his mouth open if his nose is stuffy.  He gags with food in his mouth, waits until the nausea passes and then keeps chewing.  And swallows it.  He asks for food night and day.  It's insane. And hilariously ironic.We're going to Children's Hospital Orange County next Tuesday to do the intake process for an intensive feeding program.  A program that we've fought to qualify for for months. If he keeps up like this, we might end up not needing it.

He also has started potty training in earnest.  We have been working on potty training for I don't know how many years and decided to just stop a few months ago.   A week and a half ago, we decided to try it again by not letting him wear a diaper in the house. He went diaper free on Sunday and only had one accident.  He has said on multiple occasions, "Mama/Mommy, I have to go pee" and we go and try and he does it.  This is nothing short of a miracle. It's going to be a long road, but it's happening!

His pragmatic speech is insane.  If he's in another room and wants someone's attention, he calls their name LOUDLY until they respond.  If he calls Laura and she doesn't respond the first 3 times to "Mommy", he switches to "Mommy Laura".  This is a level of sophistication and comprehension about engaging another person that we have never seen before. He'll grab your hand and take you to things.

 Until recently, he usually acts like he doesn't really notice or care if you're there or not. Last week we all went out to sushi and I started to walk him down the street while Laura stayed behind to pay the bill.  He stopped just outside the restaurant and said, "Where's Mommy".  He has never asked about anyone in that way before. And he wouldn't keep walking.  He was aware that she wasn't there and he wanted to be with her and was not willing to go without her.  It was a first.

I was in Trader Joes with him this weekend and he saw a papaya.  He turned to me and asked me "what's this?"  I think my jaw literally dropped open.  Our kid has NEVER asked what something was.  I told him and he asked me about 4 other items.  It was amazing. He's never asked a why question and I have a feeling that's next.

He has started dancing to one of the shows he has watched for months.  All of a sudden, he's copying their movements.  Before this shift, he had a very robotic, awkward movement that he would do only if you practically had a cheerleading team screaming encouragement. He's jumping and running and in his body in a totlaly different way.

We have no idea what changed but we are so totally digging it. We also wonder what this will mean for the pending autism assessments  he's undergoing to determine if he will get a medical diagnosis of autism in addition to the classification by the school district.  He had a speech assessment as part of the medical testing and the therapist was really unclear about whether or not he's on the spectrum after meeting with him.  We're still waiting for the report.  We may still go with the diagnosis based on the school assessment in order to get more services, but it's definitely not crystal clear that he's on the spectrum.

On some level it feels like these things are coming out of nowhere, but if I step back for a second I know that's not true.  Laura has spent almost every single minute of every single day of Simon's life to get him here.  She has worked tirelessly on his speech, potty training, eating, balance, movement, social skills, all of it for years. And with these recent changes, particularly the eating and potty training, her work has actually increased exponentally. She's tired.  Thrilled but tired.  She's still in her chaplaincy program until the end of May and balancing all of of this has been hard.We still haven't figured out quite how to shift some of the labor to me but we're trying. Just got to give her a shout out. This would not be happening without her tireless love, dedication, and insane amounts of work.
 
A final note: Our friend Glennon, the author of the incredibly popular blog Momastery and #3 New York Times bestseller "Carry On  Warrior" just posted a piece I wrote for her blog.  She has, um, over 75,000 readers. The comments have been unbelievably touching. Last weekend we got to meet her in the flesh when she was here for her book tour. It was beautiful. Really, it was like catching up with a lifelong friend, not meeting someone in person for the first time. If you haven't read her blog, you must.  Honest.

Here are some pics to capture the last few weeks.

Scary animal in the kitchen

Tigers in the kitchen

Simon's awesome Angry Birds birthday cake made by his Auntie Joan

Meeting Glennon!

Simon and our sweet neighbor Nathan having snuggle time

 Simon and Nathan playing "Hot dog" in the hammock

His favorite phrase these days is "you are hi-larious!"  Evidently Nathan was!

Five!

Birthday!

Hangin' with my Auntie Jen

Getting check out by our midwife

One Year Old

Auntie Dre!

With my sister!

Great Aunt Ellie

Cousin Maya

MM is so lovely!

We share a birthday but I get the crown!

Doting grandparents

Two Years Old

 

Family bed on my birthday!

 Three Years Old

 

Cousin Zuzu and I breaking out of jail

Four Years Old

Five Years Old!

I ate a WHOLE piece of bacon for breakfast!

Loving my angry bird birthday present!

Blessing Boy

Today Simon asked to bring some packing bubbles in the car with him to his afternoon program. It's a seven minute ride, ten if we hit all the lights. I can see him in the back seat through my special mom-is -driving-but-keeping-her-eyes-on-me mirror. He has has it folded like a tube and is waving it around mumbling something about Purim (the Jewish Holiday from 2 months ago). "Grogger, I got a grogger" he says. A grogger is the noise maker that is used during the reading of the Book of Esther when the antagonist's name (Haman) is read aloud. Each time we hear his name we 'boo' and yell and shake our groggers to dispel his evil presence. Mostly it was a great tool to make sure that we Hebrew school students were listening the entire time.

From the back seat out of now where I hear "Baruch Atah Adonai, Eloheinu Melech Ha Olam, Boray Pree Ha Grogger" which is essentially the beginning of almost every blessing thanking the Divine for the fruit of the....Grogger. Not wine, not the fruit of the tree or the earth but the Grogger. I can't help but laugh out loud which makes Simon of course say it again and shake his grogger/bubble wrap enthusiastically around.
This is not the first time that he has transposed the blessing beginning to whatever is on his mind/heart at the moment:

Baruch Atah Adonai, Eloheinu Melech Ha Olam, Boray Pree Ha...fork.
Baruch Atah Adonai, Eloheinu Melech Ha Olam, Boray Pree Ha ...ironman.
Baruch Atah Adonai, Eloheinu Melech Ha Olam, Boray Pree Ha ...dinosaur.

Of course I am always amused and often struck by how these words, of all the words he knows in Hebrew or English, come into his wonderful whirling Dervish of a brain.
Simon then went on to speak every blessing in Hebrew that he knows.  He said the Sabbath blessing over the candles, the wine and the challah. He said the blessing over meat products and then over other savory bread products. he said the Chanukah blessings for miracles and he said the Shehechianu blessing for getting to 'this time and this place'. It's like he was just spitting out every blessing that he knew only he wasn't spitting, he was saying them with emphatic intonation and then at the end of each one, a resounding Amen only it was more Aaaay Men.

So what is a Bracha? It's the Hebrew word for blessing. It's the formal practice of speaking these ancient words before eating, washing, welcoming, noting, etc. But what it's really asking us to do is give thanks. Give thanks for the opportunity to welcome the end of a weekly cycle, give thanks for apples and oranges that grow sweet on trees, give thanks for birthdays and holidays and time with family and friends.

And there was Simon just giving thanks all over the place; for his imagination, for grapes on the vine, for the sounds of Hebrew coming out of his mouth.
And then to top it all off, out of the blue, he asks to listen to a song that we haven't listened to in weeks if not months called B'tzelem Elohim. The lyrics of which are:
 

Yeah, yeah, yeah, yeah, yeah.

VERSE 1
We all got a life to live, we all got a gift to give.
Just open your heart and let it out.
We all got a peace to bring, we all got a song to sing.
Just open your heart and let it out. Yeah!

CHORUS
When I reach out to you and you to me,
We become b'tzelem Elohim.
When we share our hopes and our dreams,
Each one of us, b'tzelem Elohim.

VERSE 2
We all got a tale to tell, we all want to speak it well.
Just open your heart and let it out.
We all got a mountain to climb, we all got a truth to find.
Just open your heart and let it out. Yeah!

CHORUS

BRIDGE
I.
B'reishit bara Elohim.

II.
B'reishit bara Elohim, all our hopes, all our dreams.
B'reishit bara Elohim, each one of us, b'tzelem Elohim.

Yeah! Yeah!

Music & Text: Dan Nichols, Mason Cooper & Michael Moskowitz

And what does B'tzelem Elohim mean? In the image of God. The image of the Divine. The Goddess. Allah. The Creator. Whatever you call it...that thing that is so much more than just you or me. 

I don't know what made him ask for this particular song. Like I said, we haven't listened to it for a long time and it's not even one of his favorites.

When we open our hearts to each other, we become 'in the image of God'. 

I hope that we never have to open up his chest to get to his heart. I hope that his heart remains open. I hope that he never stops surprising me with blessings and reminders of how he is made B'tzelem Elohim.

It didn't change the fact that 15 minutes earlier he had a double time-out for throwing food and then hitting me. It didn't change the fact that I was still going to drop Simon off at school and then go meet with people who had infected wounds,  failing organs and astronomical hospital bills coming in the mail. It didn't change the fact that I still had to fill out an autism assessment form for him in between meeting with patients. All of that was still true.

But Simon took those 7-10 minutes and just let loose with a torrent of abundant gratitude and asked to listen to a song that talked about how we are all made in the image of God.
He's just about to turn 5, eats through a tube, and still can't poop on the potty but wow, that kid can preach/teach me a thing or two about....everything.

So we'll head into April with Cardiology and GI appointments, an overnight planned to Children's Hospital Orange County for an in-patient feeding therapy program assessment, starting up again with physical therapy, and a tour of special education kindergarten classrooms with the understanding that we can give thanks. We can give thanks for forks and groggers and Ironman. They're all included in the image of God. So is Simon Lev. So am I. So are you.

That's one funny looking image.

Love to all.

LF

Maxin' and Relaxin'

 Whispering words of Wisdom

A Boy and his Ma

Road Trippin' with Wyatt

Mama comes along for the ride

PopPop arrives for Passover

At the Seder

This Haggadah needs more pictures of dinosaurs

I do believe we're saying "Nitrtzah!!" here. Meaning "the end!!" of the Seder

Eating the Shank Bone

Do you like my spray tan? (Not really, just trying a new setting on the camera)

I love these three next shots. If only it weren't for the mist in Oakland (or the thumb print on the camera lens)

Like father like daughter.

Petting the bunny and making 'eyes' at the Junior Farmer

A cow says ....

Riding the 'rails

...um, yeah. That's my father.

 They put you to work at the Discovery Museum

Feasting

 Stingray

With Mamaw post sleep over!

Hangin' at the Zoo with my Cuz and her special 'friend'

I do like Laura's oldest High School Friend. John Ross Bowie is a cool dude!

This is how I roll at Trader Joe's

A little Purim Pirate

I could totally be a Knight of the Round Table

Or go on safari with PopPop. Whatever. I'm up for it.

 and that's how we do it at the F-J's.