Wednesday, February 13, 2019

Simon's 2018 Funnies

Simon came home very angry bc a kid at school took his candy (it got handled, he just can't let it go).  After about 15 mins of him throwing things around and glaring angrily at me, Laura taps me out and goes into his room with him.

I hear:
Simon: *furiously* Death or Torture.  Make your choice.
Laura: *casually* Oh, totally death.  I'm not into torture.

A little while later I hear him say:  "I'm not the one you gave birth to.  I'm not the one you created.  I'm the evil Killmonger".

He's so fluent in villian!
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Simon: Who is the villain of the White House?
Laura: Well, who do you think?
Simon: Trump. But who is his henchman?
Laura: The Vice President, a man named Mike Pence
Simon: Is he also a villain?
Laura: I think so.  He doesn’t like people like me and Mama and he doesn’t think we should be able to be married and have kids.
Simon: Well, you know I work for him.
Laura: No. Just...no.
Simon: Well, then you know I work for Trump.
Laura: No.
Simon: *thinking*
Simon: What about Jason Vorhees (from Friday the 13th).
Laura: Fine.
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Simon: *angrily* "You're devoted!"
Me:"I do not think this means what you think it means, but what a lovely thing to say on Valentine's Day!  I am quite devoted to your mother"
Simon: *scowling*
Simon:  "Fine.  You're fired"
Me: "Ah, yes.  That's what I think you were going for".

Firing is so much more dramatic than demotion anyway.
------
Me: Simon, it's time for bed
Simon: No.  It's not that time.
Me: Well, what time is it?
Simon: Hammertime.
Me: 😂
-----
Simon: What are you cooking?
Me: Cabbage
Simon: Not humans?
Me: Uh, no. Not humans.
-----
Doing bedtime with Simon.  We listen to YouTube videos with my phone face down on the bed.  He wants me to put it closer to him. I refuse.

Simon: That’s it.  I’m doing a countdown.  3-2-1.  Hand it over.
Me: *smothering my laughter in a pillow and refusing to comply*
Simon: That’s it.  I’m sleeping by myself.
Me:  *remembering the countless nights he comes into our bed and keeps us awake for hours*

That’s not how this works.  That’s not how any of this works.  But highly entertaining.
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Staffer at Trader Joes: Simon, you're so handsome!
Simon: Yep!
Me: Hold on.  Simon, what do you say when someone gives you a compliment?
Simon: Um...I'll accept that
Me: Try again
-----
Me:  Simon, I love you.
Simon: Why did Hitler get defeated?
Me: Um, that's not the response I was expecting.
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Report from my Mom after date night last night. (She leaves for 5 weeks in India tomorrow. )

Simon: Mamaw, how do you say “Oh My God” in Hindi?
Mom: I’m not sure.  I’ll have to find out.
Simon: *muttering under his breath*
Mom: *realizes that what she just heard was “Oh My Baghavatti”
-----
Simon: Who is going to be our hotel manager?  Norman Bates?
Me: I really hope not.
-----
Simon: We should open our own bageleria.
Me: The phrase "bagel shop" is dead to me, forevermore.
-----
Simon, tearing up after eating something spicy:

"My eyes are sweating!"
-----
(Laura and I were talking about something and Simon randomly referenced a Honeymoon)

Me: Simon, are you going to have a Honeymoon?

Simon: Yes.  ALONE.
-----
We just finished lighting the candles tonight for Hannukah and Simon asked me a question. I didn’t know the answer and Simon said, “Jew don’t know the answer?” And then busted out laughing.
-----
Simon's action figure smack down just featured Sophia Carson v. Stalin.
------
Me: *holding Simon's chin and looking lovingly into his eyes*
Me: "I love this punim"
Simon: *glaring back at me*
Simon: "I only love pain"

Is 9 too young to go goth?
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When I thought about what parenthood would look like, I didn’t imagine a sword fight between Ozzy Osborne and Peter Pan, set to the soundtrack of “War?” by System of a Down, and yet...
-----
Simon's latest obsession is that he is King Cancer and Laura is Henchman Bacteria and their evil superpowers are causing disease.    I mean, I guess it’s related to science, right?

Monday, April 2, 2018

Mission Complete!

It's been 4 years since Simon's last surgery.

It sounds like some sort of confession when I write it like that.  It's odd- there's a way I feel guilty for not keeping up more with this blog and then I remember that the reason why it's quiet is because we're just...living.  We aren't having big ups and downs or urgent issues that need frequent updates.  I'm *so* grateful for this time.  I say "this time" because feels like it's what's between two  parenthesis in this journey, not a final destination.  I hope I'm wrong.  I hope that puberty will not bring the lack of cardiac stability that we fear, and I hope something new won't crop up, but there's no way to tell, so I will enjoy where we are RIGHT NOW. 

We just successfully completed what we all hope is Simon's last anticipated surgery.  We've known since he was a toddler that it was likely he'd need this relatively minor procedure but didn't know for sure until this past year.  Ironically, it has NOTHING to do with his heart.  He's just lucky like that. 

Unlike in years past, neither Laura nor I posted anything on Facebook about it in advance or rallied any big support.  In fact, a new friend organized a meal train and we both put the kibosh on it because we're just feeling...hermetic?  Unfazed? Numb? 

Laura found herself feeling really spacey the last few weeks and I, honestly, kept forgetting what day he was having surgery, or some days, even that he was having it at all.  I pushed away the fingers of PTSD that wanted to creep up my neck and make me worry.  I didn't fret, I didn't imagine worst case scenarios (well, not more than once each), didn't feel the woozy slightly drunk feeling I often feel when I'm walking down the halls when we're at CHO for a non-social visit. 

Simon was a total rock star.  He chatted and charmed and flirted.  He bequeathed his precious Harry Potter wand to the Child Life Specialist who solemnly swore to use it with care on their "mission" (what we called his surgery).  He brought his favorite bamboo stick and demonstrated incredible strength and skill to the universe with martial arts moves in the atrium while Laura was checking in.  When it was finally time to move from pre-op to the surgical suite, he led us all down the hall with a steady pace, blue gown flapping behind him, stick held high and proud.  In the surgery receiving area, we literally had to hold him back because he was so eager to meet all the doctors and nurses and embark on the mission. When it was finally time for him to go in, we hugged and kissed him and waved him off as he headed in to the OR with two nurses and the child life specialist.

Paula, the nurse doing the final check in asked us one more time before they started, "So, no solid food since 8:30 am and then just clear liquids until 9:45 this morning, right?"  I answered, "Yep, just ginger ale and chicken broth and kombucha".  She hesitated.  I froze. "Chicken broth. Um...." Turns out there are varying definitions of "clear liquids" and Houston, we had a problem because we fed him broth from leftover Matzo Ball soup. 

This phenomenal nurse did exactly what she was supposed to do and went to go check in with the anesthesiologist. Two minutes later the entire team was back with us, minus the child life specialist and Simon, plus the anesthesiologist. Long story short, liquids with fat and protein can be a HUGE issue b/c they digest more slowly than just juice or soda, and if there are particulates, they can cause pneumonia if aspirated.  Laura did the math again in her head and we described in more detail what he had ingested. The surgeon said, "I think we might need to reschedule". 

My blood ran cold. 

The surgery we've been dreading for 7 years and finally sacrificed part of spring break for and that our son was actually PUMPED for was about to be cancelled because of a goddamn box of goddamn Manischweitz soup.  But... this is why I love Children's Hospital Oakland.  The anesthesiologist stepped out to consult with a more experienced colleague to see if we could get some clarity on how big a deal this really was.  He came back and said that it's a really gray area.  I asked the surgeon what she would do if it were her child (her classic surgeon response was "I wouldn't have given it to him"!) .  They were clear to explain that there was a risk, but that it was very unlikely that anything could happen. I could tell we were all on the fence, but that the surgeon wanted to make sure that we understood the risks and that basically it would be our decision to move forward or not.  Blessedly, as with every other major decision Laura and I have had to make, we were on the same team. 

Game on. 

We went down to the cafeteria where we estimate that we've logged at least 250 hours over the years (including waiting during his 4 other surgical procedures). When it got close to time, we were too antsy to wait for a call so we went to the surgical waiting room to kick back in recliners and watch Jeopardy.  Just when it was starting to be uncomfortably late, a nurse walked in and asked for Simon's parents.  We both struggled to sit up in our recliners and grabbed our stuff.  "Hold on, hold on", she cautioned and, again, my blood ran cold.  Laura and I looked at each other.  

"Is he awake?", I asked urgently.  She broke into a smile and said, "Oh, yeah, he's doing great.  He woke up in a great mood and when I asked him if he wanted his Mommies, he said no and rolled back over to go to sleep".  We busted out laughing.  One of our biggest fears was that he'd have Emergence Delirium as he has had every other time he's come out of general anesthesia.  The best way to explain Emergence Delirium is that it's like trying to manage a furious, feral animal with a fresh surgical wound who wants to kill you.  It's hideous.  We opted out of Versed before surgery as it's likely to contribute to Emergence Delirium and we literally high fived at the news that our plan worked. 

When we went in to see him eventually he was very sleepy but quite generous with his thumbs up regarding his status. A few vital readings and one purple Otter Pop later we got discharged. He's currently passed out in his bed. 

I'm so grateful that this procedure is over.  It's been hanging over our heads for years and I can't be happy enough that it's over, that it went well and that I got to witness how incredible our kid is.  He's integrating his trauma in the most incredible ways.  Who eagerly runs into an OR?!

Team Shimmy, over and out. 

Stoner with an Otter Pop



Sunday, February 11, 2018

Simon's 2016 funnies



I realized after I posted the 2017 funnies, that I had done this in 2016 but only posted on Facebook.  Thought I'd share here in case anyone needs a chuckle. 



A compilation of Simon funnies from this year to ease the pain of 2016.

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Simon perfectly communicated how he feels about his first day of school by crawling into my lap while simultaneously yelling at me to leave him alone.
----------

Simon loves to make up puns and mash up words. This morning it was "coffee" and "chocolate". From this day on, in our house, mochas shall forever be called "cocklet". Bwwwwaaaaahahaha!

--------------

Dropping Simon off at school late after a morning appointment and passed kid standing outside a classroom.

Kid looks up and shouts"Simon! Oh my god! Where WERE you? You haven't been here all morning", and wraps him in an "I-thought-you-were-lost-at-sea-but-here-you-are-in-the-flesh" bear hug. I honestly thought the kid was going to cry he was so glad to see him.

Team Shimmy fans are hardcore, man.

Thank God. He's gonna extra need it if Trump gets elected.
-------

Simon, after finishing a donut: "I think that sugar just hit me in the nuts, Bro!"


I could NOT make this stuff up.
-------------------

Simon was playing with our landline phone almost an hour ago. Thought I hung it up before he actually made any calls, but I just answered a very hard knock on the door to find 2 Oakland police officers calling me Ms. Fitch and asking me if I called 911. Dude. If I called 911 an hour ago and actually had an emergency...damn. And that's the response time for a middle class neighborhood. Also, my kid is so busted when he wakes up tomorrow.

----------------

Reason #936 why I adore Simon? He calls Laura Fitch "the chaplain". As in, "is the chaplain home" or "where's the chaplain?", if she's not around. Slays me every time.
----------------

In lighter news, this week Simon's two TV obsessions are Teletubbies (I can barely handle that we're back on this after enduring his early years with this on non-stop) and...Lip Sync Battle.

Simon's brain to my brain: "I'm 2! No, wait, I'm 14. Just kidding. I'm 8 but maybe more like 5. That's right. Keep guessing. "
---------
It made my whole day when Simon requested Megan Trainer's "No".
-----------
Simon now adds "Bruh" to almost any answer. As in "Simon, do you want toast for breakfast?" "Nah, Bruh. I want sushi".

----------
Parenting win for the day: not busting out laughing when Simon tries to insult me by angrily calling me a "scoundrel".

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Simon: "I'm a chicken. My name is Pecker!"
Me: https://static.xx.fbcdn.net/images/emoji.php/v9/fbf/1/16/1f62c.png

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Simon tonight: "I like big butts". Me: Oh shit. (Thank you Alvin and the Chipmunks, btw). Simon, also tonight, while we were marching up the hill on the dog walk: "We are the 99%". Me: Okay, I think that balances things out.
-------
As overheard this morning:
Simon: Is Darth Vader coming to our Seder?
Laura: Nope. He's not Jewish.
Simon: Nuh uh! He is TOTALLY Jewish!
-------
Second time Simon has ripped a loose tooth out of his mouth and triumphantly spiked it on the floor, leaving us frantically crawling around on the ground for said tooth. Tonight it was in the dark in our driveway.
-------
Scene: bedtime
Me : *trying to quietly sneak out of Simons room, thinking he's asleep.*
Simon: [full voice] "Nuh uh! You shouldn't be doing that. You get back here".
Me : *shaking with laughter as I slink back*


Thursday, February 8, 2018

Simon's 2017 Funnies

Here's a compilation of his funniest moments last year:

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Context: we are a very physically affectionate family, very playful and don’t spank for punishment but do spank each other playfully a lot.

Simon is eating breakfast and watching TV. Laura jumps up from couch next to him and runs into kitchen (within view of Simon) to grab a quick full body snuggle with me, complete with a butt grab.
Simon: Spank it!
Laura and I: *laugh*
Laura: *little spank on my butt*
Simon: Harder!
Laura and I: Um...
Simon: Mommy! Spank your wife!
Me: *If anyone outside of this house heard this, we are so getting a call from CPS*
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Brought home rose Turkish Delight tonight bc Simon has been obsessed with The Chronicles of Narnia.
We all tasted it.
Me: It tastes like soap.
Laura: Yep. Like rose soap.
Simon: It tastes...Narnian.
And, just like that, food snobs of Oakland have a new adjective.
You're welcome.
-----
Simon: Mama, can I get this eggplant?
Me: What are you going to do with it?
Simon: Pan fry it.
Me: That sounds delicious.
Me: *remembering many items purchased and not eaten*
Me: Simon, what do I get if I buy this for you and cook it and you don't eat it?
Simon: Uh...You get to slap me.
Me: *thinking*
Me: That sounds fair.
-----
What one wears to see "Thor".

Post movie:
Me: who was your favorite character?
Simon: Hela. She was hella good. Get it?!
-----
Walking dog with Simon, each of us equipped with the requisite Harry Potter wand.
Simon: *bleats like goat*
Simon: *points wand at something*
Simon: "Alohah-ah-ah-amoh-oh-oh-r-ah-ah-ah"
Simon: I'm a goat! I'm a wizard! I'm a gizzard!
-----
Highlight of the weekend
Simon: "Mama, can we listen to the Screaming Goat Complain-a-thon on YouTube?"
Me: "Uh, yeah! That sounds amazing!"
Me: *fruitlessly searching*
Laura: "Simon, do you mean 'compilation'?"
Simon: "Yes!"
Me: *pouting *

The first version sounded way funnier.
-----
Simon : Who is Joan Jett? (He often asks questions he knows the answers to)
Laura: Simon, you know who she is. How would you describe her?
Simon: Strong, legendary and tough. And she's a fighter.
Laura and I: Um. Wow. Pretty much. Yeah.
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Two minutes after I walk out of Simon's room thinking he's soundly asleep, he opens his door, stands there scowling with a toy pistol in his hand and angrily proclaims "Worst sleep EVER!"

Drama King.
-----
Simon: Can you be a valley wizard?
Me: Oh Mah Gah. She is like, *so* Hufflepuff. Ew.
-----
Breaking in his new tuxedo jacket by hawking gelt at Trader Joes. Seriously. He parked himself there and offered gelt to everyone that passed by for a full 15 minutes.

------------------
Simon: I have a crush on Miley Cyrus.
Me: (inside)
Me: (outside) Oh! What do you like about her?
Simon: The power that she presents.
Me: (inside and outside)
-----
Me: "Simon, what's your favorite thing about Mommy?"
Simon: "When she's on call at Summit hospital"
Laura and I: Uh....ok. Let's try again.
Laura: "What's your favorite thing about Mama?"
Simon : "When she goes to work"
Laura and I: "Twerp".
-----
Spider Bobby about to report for duty at the Dickens Faire
---------------
A little regret that we watched a video of a goat delivering triplets. Simon's new "popcorn" word of the week is vagina. As in, we were just mock battling and he threatened to smack me with a...vagina.
Hey, at least I can stand proud as a former sex ed teacher that he knows the proper word, right?
-----
Me: *driving*
Simon from the backseat: "Do otters have a big ole vagina?"
Me: *Nearly running off the road*
Me: *hysterical laughter*
Me: "Nope, I think they're pretty small."
My contribution to the marches for science. Anatomy is science, right?
-----
When Laura and I got home from seeing Get Out:
Me: Simon, Mommy and I went to see a really scary movie.
Simon: Did it have hunters?
Me: Um, actually, yes.

*in my brain*:
You are *hella* creepy dude. How did you vibe the perfect word to describe those crazy ass people while not hearing a single thing about that movie and me not even saying the name of the movie?

*shiver*
-----
Walked Simon into YMCA spring break camp this morning and a twenty-something young man watched him with a super sweet little smile on his face. I said "you could start your day like this" and he shook his head a little. He said "I used to be that person". I responded "you still are!" And my heart broke a little that someone so young already felt like the real him had no place in the world. 💔 Let your freak flag fly, people.
----------------------
Simon: You know where I want to work?
Me: No, where?
Simon: The White House!
Me: Cool! What is your job going to be?
Simon: I'm going to work *for* racism and the Imperius Curse
Me: Well, you'd be in very good company right now.
-----
Sometimes Simon's word salad is freakishly spot on. The word of the day is "homophobia" ( no idea why or from where- never heard him use it before today). He can't articulate that he knows what it means, but he just said, "Do you know what homophobia can do? It can make people go back in time ". Um, yeah. That's pretty much it.
-----
Best part of my day was picking up Simon from camp (no small thing since I had Homeless Court today which I love). One of Simon's verbal "tapes" is to randomly generate codes. Today as we were walking out, one of his counselors said "Hey Simon! What's the code?". Simon authoritatively answered "247". The counselor nodded and replied "got it".
I realized this has happened every day I've picked him up.
Nothing better than seeing my son fly his freak flag high and getting to witness someone salute it.
-----
Simon: How about we listen to"Barbie Girl"?
Laura : I'd really rather not. That song makes me a little nuts
Simon: Well, it doesn't make me go nuts. That song is my jam...always.
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Yes that's the Torah and yes, that's Wonder Woman gear. 

They were letting the kids help with rolling the Torah at Hebrew School and he had a very specific place he wanted it stopped so he could pretend to read it. Of course we want to know what the text said where he stopped. 

This child. 

He's some kind of magic.
---------------
Talking about racism and whiteness with a kid on the spectrum is at best...dicey.

Laura and I: *blah blah racism, black, native, MLK, Black Panthers, blah, blah unfair, protest, angry, blah, blah, white people, speak up, responsibility, blah, blah*
Simon : *says something showing he mostly followed what we were saying*
Laura and I: *exhaling*
Five minutes later...
Simon : *echolelia smorgasbord of phrases about racism strung together into KKK worthy statement*
Laura and I: "We are so going to get a call from the principal "
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In keeping with his current obsession with placentas (thank you Bear Grylls and Shaq), Simon's imaginary new robot is "Placentron".
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I present...Mosquito Warrior. His super power is that he controls mosquitoes with the snap of his fingers.
Also, he just said to me "Mama, you know I'm a fighter, not a lover, right?" For real.
-----

Keeping the streets safe.
--------
Simon always bogarts my bone broth but now he asks me to put it in his Butterbeer cup (from Harry Potter world) and proudly calls it "Chicken Beer" as he chugs it.
-----
Simon's parting words to me from the back seat as he and Laura dropped me off at the airport as I left for England was a fervent "God Save The Queen"!
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I love that my Mom gave us a book about how to celebrate the Solstice with kids as a Solstice present.
I also loved this moment:
Mom: “Who wears black and white and red and gives out presents?”
Simon: “Bhagavati!”
That’s about as multi-cultural as it gets.

Monday, February 5, 2018

50/50

Last weekend I was invited to a gathering that included a few other families with kids with special needs, most of whom I had not met before. I was chatting with a Dad who has two kids on the spectrum.  As we talked about our kids,  I mentioned that in addition to being on the spectrum,  Simon had also been very ill with heart disease as a small child. His compassionate “oh man, that sounds so hard” response to that extra bit of news was welcome and also jarring.  It always catches me off guard when another parent with a kid with special needs is shocked by our medical experiences. I forget sometimes that there are multiple clubs under the “Special Needs” umbrella.  I figure that we belong to *three* clubs.

I’m a public health nerd, so I made a Venn diagram with examples of what I mean.
(Simon doesn't have all the things listed under each category, btw, in case that's confusing- just giving examples of what might be in each bucket) 


As I lay in bed thinking about my conversation with that Dad, I realized that Simon's life so far is divided almost equally in half, with the  first half dominated by medical special needs and the second half by developmental special needs.  As a bonus, in the last year we've also been joined by behavioral special needs but I sort of lump that in with the developmental stuff. 

Our lives have been somewhat ruled by whatever issue is on the front burner.  In the first 5 years of Simon's life, we only wanted to go to cardiac camps, freaked out about germs on the daily and mostly lived with the threat of death.  At about age 5, Simon got off the feeding tube, his heart stabilized and we got the autism diagnosis.  From that point on, heart camps didn't work for us anymore, we shifted our focus from keeping him alive to how to best understand how his brain works, worry now about crowded/overstimulating situations and live with the threat of him getting bullied.  Last year he got diagnosed with ADHD and we've added paying attention to how ADHD meds are/are not working for him, how to help him manage his big feelings that sweep through with lightening speed and worry about the executive function challenges of middle school that are coming up in 6th grade. 

While it's stressful to raise a kid with special needs, I've found the kinds of stress to be really different depending on the category of the challenge.  Here's my breakdown:
  • The stress of medical special needs kind of feels like getting clubbed to death. 
  • The stress from managing developmental special needs might be best likened to death by a thousand paper cuts. 
  • Behavioral special needs can feel like there is imminent risk of bodily harm (to yourself or your kid, depending on the day and the tantrum). 

The joys are different too.  We don't celebrate echocardiogram results and dropping meds from the regimen anymore.  Instead, we high five when Simon asks a "why" question and cheer when he gets his dirty dishes from the living room to the kitchen without a distracted bypass to his bedroom with dishes still in hand. One isn't better or worse than the others, just different. Actually, that's bullshit. I'll take the behavioral stress over the medical stress.  The threat of death sucks the big one. 

It's all a lot and with Simon, much of it isn't obvious at first, which also feels hard.  Sometimes it feels like we're carrying this enormous load and you can't tell if you just meet us. Laura and I often talk about how we wish there were some secret signal for other parents of kids with special needs to “flag” that we’re a member of the same club. This has been proposed a few times, but it looks way too much like “Heil Hitler” for me to promote.  Still, how amazing would that be?!

I love getting to be around other parents of kids with special needs, whatever stripe.  And, there's something unique about people who are wrangling more than one. About 7 years ago, a few of us that were in an early intervention program together formed the BAD Mamas (Bitchin' And Drinkin' Mamas). Every couple of months we soak in a hot tub, eat cheese, drink wine (well, the other ones do) and bitch about all our woes.  And because we all have kids that have medical AND developmental and/or behavioral stuff, we effortlessly swing between work challenges, medical tests, new diagnoses, IEPs and who our favorite caseworker is this month and everyone just nods.  There's no explaining, no worrying about stressing someone out, no need to be careful.  We just let it all hang out. 

I'm so grateful to get to belong to so many people. Queers.  Oaklanders. Public Health workers. Parents of kids with heart disease.  Parents of kids on the spectrum.  Parents of kids with squirrel brain (as I call ADHD). Jews. Partners of Chaplains. The list goes on. 

And on extra hard days, I'm extra grateful for my BAD Mamas and all the other parents out there whose lives double and triple up on those bubbles.   It's not something I would choose, but I think those of us who live these wacky realities belong to each other in a way that can only be forged by being squeezed between a rock and a hard place.  Silver linings.  They're everywhere. 



School photo aka Brute Squad application pic

Hawking gelt at Trader Joe's


Sacked out in the airport during a delay



Vikings in Canada!




Headed to the Oakland Women's March with Mamaw