Nine Years Ago

Dear Simon (aka Bane, Voldemort, Princess Celestia, Megatron, Darth Vader, Trender Hoof, etc etc)

Today is August 1^st. Nine years ago today I thought I knew who I was, what I was doing, and where I was going. You changed all that with a simple wheeze. Several hours later you were fighting for your life with this incredible will, amazing team at Children’s Hospital, a ventilator, and two broken and shell shocked mommies. I will never forget that feeling of handing your sweet exhausted little body over to the nurses and Dr Williams knowing what they had to do, and that it would hopefully save your life. I will never forget that feeling of complete surrender. It was the same feeling I had 6 weeks later when Jaime and I made the decision to not list you for a transplant, believing that whatever needed to happen would happen and that Jaime and I would be whoever we were meant to be, as moms, as partners, as individuals.

 For those 113 days with you in the ICU, I practiced being present. I practiced slowing down. I practiced breathing and trusting and feeling all the feels because if I didn’t I might miss a moment with you and we didn’t know how many more of those we might have.

I remember knowing that I had to take care of myself first because 15 hour days in the ICU was what was being asked of me and I didn’t want to/ couldn’t imagine doing anything else. But when I got to take 15 min breaks or someone came to hold you for an hour while I went home to take Roxie out for a walk in the sun and non-recycled air, I knew I had to do it. I learned to accept and even ask for help. I recommitted to touch and song and finding the Light even in the midst of beeps and needles and medications administered and even in what felt like the darkest of dark.

And we laughed. Jaime and I laughed and welcomed new people and ate RedVines. We did it like there was no tomorrow. We held each other. We held each other physically, emotionally and spiritually.

We did it for months in the hospital. We did it for the years out of the hospital when things were still so dicey with compromised immune systems and feeding tubes and so so many medications. Your Mama and I stayed present to each other during some really hard shit, more hospitalizations, more diagnoses, bigger risks and amazing surprises from you as you worked your magic, on your own timeline, to becoming the weird and wonderful 9 year old you are today.

We will never be out of the woods with Cardiomyopathy. Autism keeps us re-framing and relearning about the world and the way you see it, and ADHD makes sure that we stay in the moment, breathing deeply to be closer to you as you pace yourself in this growing up process, ever drawing those around you into your imaginative and complex world.

This August I will be finishing up my yearlong Residency program in Chaplaincy and I want to thank you. It was you and your ‘big heart’ that took me off my School Social worker path and brought me to this moment. A few days ago I got offered my dream job. It works for me, it works for our family, and it means getting to follow a calling; a calling that you brought me to with what I can only describe as your divine connection.  You have shown me over and over again, through parenting, through partnering with Jaime, through your own bright and unmistakable Light, more of what I meant to do with this life. I love being a chaplain. I love the process, I love the practice, I love the learning. 

You are like my very own living, breathing Shehechianu blessing and I just want to take this moment to thank you. Thank you for bringing me to this time and this place. Thank you for all the ways that you have made our family what it is. Thank you for the opportunities to learn and connect with the world around me in new and wonder-full ways. Thank you for showing me that beautiful and brutal are loving cousins and most of all, thank you for the chance to play, imagine, see, breathe, cry, laugh, love and live during this time with you. I am humbled and honored to be your mom, a chaplain, a wife, and simply me.

Some Days & The Sum of Our Days

Simon is turning 8 years old tomorrow.  

Jaime and I, for the last week or so, have remarked how we can’t quite believe it. It happens every year around this time that like most parents, we can’t believe we’ve made it this far. And, like most parents we remember when we thought we’d never leave the hospital with a live child, or that he’d be heart stable and only on two meds and not twelve. Like most parents we see this birthday and are once again amazed that he’s going to eat his birthday cupcake by mouth instead of surgically inserted feeding tube. Just like any other parent we’re concerned about his party and how his classmates (and their parents) from his Special Day Class are going to mix with our mostly queer friends and their mostly typically developing children.  You know, stuff like that.  But seriously, this time of year is both amazing and wonder-full and incredibly hard.

It’s starts to percolate and simmer for me usually a week or two before April 9^th. This is that time, 8 years ago, that an unsuspecting and very excited Laura, got to have 3 months and 3 weeks to be a ‘normal’ new mom with all of the insane feelings and questions and exhaustion that most new moms feel. I worried about feeding and sleeping and pooping. Not much else.

It’s a time when I think/grieve the coming August 1^st anniversary when it all came crashing down. It feels so strange to know now that those 3 months and three weeks, as intense as they seemed to be, were nothing, nothing at all, compared to what the next 4 months/7+ years would be like.  I didn’t even know what a G-tube was. Hard to believe that there wasn’t a time that I didn’t know about that but there wasn’t.

Then there’s the reality of the present.

We are about to celebrate 8 years of Simon on this earth. He is amazing. He is wackadoodle crazy. He is funny as hell. He is infuriating. He’s sometimes such a mystery and other times so predictable it’s scary.

He is changing and growing in so many ways.  He’s autistic. He’s atypical. He’s into Power Rangers like I used to be into Michael Jackson. He’s losing teeth with new ones coming in at all sorts of crazy angles. He’s learning to shake his butt and is competing in his first Kung Fu tournament tomorrow. His pragmatic speech and ability to converse is growing by leaps and bounds and when there’s a big transition coming up his scripting/echolalia and chirping increase exponentially. (A friend and fellow mom of a child with Autism and I were laughing last night about how it’s true for our kids that “sometimes they seem soooo autistic and other times we’re like ‘meh….they seem kind of normal.’) Simon is now able to get his haircut without being held down and even attended Spring Break camp this year without a single incident (3 days with an ABA aide and two days without!).  He wakes up almost every night and comes into our bed. He has mood swings and still can’t tell you what’s bothering him. He’s not attached to certain things that you think he might be and bonded to other things that I wouldn’t expect in a million years. He can remember names and places from years ago but can’t tell you how he got that bruise on his face (any parent’s nightmare). He’s reading. He likes spicy foods.  He’s got those bright blue eyes that sometimes sparkle like perfectly cut sapphires. He loves the attention of older females and is a master at drawing said females to him. He loves spending time with his Mama playing with his action figures on his bed in his room. He learned how to take his medications in pill form this year but still gags throughout most meals-just because. He loves music. And burps. And farts.

Being his mom is so hard. It’s exhausting and there’s no mastering it.  It’s also so right and exactly what I’m supposed to be doing. I don’t understand it at all but when he’s lying next to me and throws his arm over me half asleep, it’s the easiest thing in the world. When he repeats “I like big butts and I cannot lie” in public for the 15^th time in five minutes it’s a little harder.

The world is a better place for having Simon Lev in it. My world is better; more complicated, full, deeply brutiful, and rich.   Thank you Jaime for staying strapped in on the roller coaster with me.  Thank you Simon for being exactly who you are and continuing to become the perfect you.

And thank you to everyone that supports just that.

A long long time ago, in a galaxy far far away...

Checking out the Gibbons at the Zoo, like we do.

First Hair Cut in 2 years

Touring the Fire Station

 after delivering them homemade cupcakes

Driving the Tiller Rig

With a thermal sensor

50+ pounds of gear

On the Job!

Watching The Chipmunks on TV

Likely embarrassed by something Mama and Mommy did/said

Almost 8 and beautiful

Happy Birthday Simon Lev!!

A Force Awakens and Some Serious Change is Afoot

I can't buy into all the Star Wars hype even though it was a terribly enjoyable film to watch. I don't like that a PG13 film is being so heavily marketed to kids far too young to see the movie.  But I will say that in the last few days there has been some serious action in the Force.

Simon has had an amazing 4 days where purely by accident, and years of work, he has been getting himself dressed in the morning...by himself!

For years, we've been working on daily living skills with getting dressed being one of the first that's required at the start of the day. Last Thursday something clicked. Jaime and I talked about it and decided that we should try something different to avoid the morning melt down after breakfast. Since Simon was a spectacular eater now, why not get dressed first, eat, and then have free time for tv or ipad with plenty of transition time to get out the door.

No clue if it would work or not. We often have no clue what will work or not with Simon. And that's just fine. It's all practice anyway. Good practice.

So, I had picked out his clothes and placed them in a pile next to him with his shoes nearby on the floor. Underwear, socks, pants, long sleeve shirt and a short sleeve shirt to go over it for extra warmth now that winter has hit. I asked him to get started taking his pajamas off and that I would be right back after a trip to the loo.

From my perch in the bathroom I can see his head and not much else.  I hear him taking off his pajamas and alternately cursing me and mumbling to himself for the next few minutes. The mumbling starts to sound clearer and mixed in with the "you're fired" and "mommy is terrible" I hear "that's my underwear" and "I'm doing it".  Almost at exactly the same time that I'm coming back into the living room Simon exclaims "I got dressed all by myself!" and damn if it wasn't true. He had everything on, even his shoes. I couldn't catch my breath. I didn't know what to do with myself. What normally takes 20 minutes and dozens of prompts and the occasional putting on of pants/shirts/socks backwards, had taken about 5 minutes with none of the aforementioned. And the boy knew what he did. He was proud of himself. There's not much sweeter than Simon's tone when he exclaims "I did it myself!"

It's six simple steps that most of us, even most 7 year olds, take for granted. Underwear, socks, pants, two shirts, and a pair of shoes. That morning 4 days ago, Simon summit-ed a mountain. He graduated. He flew. He got dressed by himself.

For those of you that have kids with special needs, ya feel me?

Jaime and I had just had some very hard conversations (spurred on by estate planning and Last Will & Testaments and such) about how Simon may or may not be able to live independently. He's a funny guy. So smart and engaged in the world in so many ways. He's also a mystery and challenged by a world that's not set up for the special kind of guy he is.  He thrives and he struggles. He continues to take us right to the edge of our understanding of him and then blows ours minds and hearts wide open.

It may not sound like much to you but when I say that Simon got himself dressed, that day, and every day since, it's sounds like a symphony to me.

So there was that.

That same day, I got a call.

It was from the Alta Bates/Summit Health C.P.E program letting me know that I'd been accepted into the 2016/17 Residency Program for Chaplaincy. It's been three years since I did my first unit (of 4) of Chaplaincy training. It was a deep affirmation of work that I've felt called to do even long before Simon went into the hospital.  Providing attention and support for people was what got me into social work back in 2000 but I never felt that was 'it'. I loved being with children and adults doing both clinical and case management work but missed the spiritual and emotional connection that was present during my summers at Farm & Wilderness where Quaker practice was present every day.

 Chaplaincy, once I learned about it, felt like a calling. It was an opportunity to share my experiences, skills, and passions with people, all kinds of people, that really needed support and connection. It included anti-oppression work, it included play and sometimes even singing, it included the Spirit, and deep self reflection. I was in. It was some of the hardest 6 months of my life and was so rigorously perfect for me but not sustainable.  Simon still had feeding therapy, Occupational Therapy, Speech Therapy, and Physical Therapy every week. He was dependent on tube feedings and still newly out of heart failure with concerns about immunity. He had been newly diagnosed with Autism and we were just getting started with ABA therapy. There was a lot going on.

These days it feels like we are in a groove. Jaime is 4 months into an awesome job with a great boss and team. Simon is settled into a great school and classroom that both challenges and supports him. There are no tube feedings, tantrums have been decreased, and we have play dates where there's actually playing.  While Jaime and I have both been dealing with depression, we are also working on it and trying to be gentle with each other.

So, I decided that it was time to think about going back and finishing my Chaplaincy program. It means working 40 hours a week, plus three 24 on-call shifts a month, with weekly papers, process meetings and didactic lessons.  This is not your average program. With six other residents, the year long program is one of the most intense internal and interpersonal programs I have ever seen or been a part of.  I am so ready...and terrified.

It's been almost 8 years since I've been really truly back in the workforce and even then I was only working four days a week with summers and school holidays off. It's also a little thrilling to think about contributing financially to the family once again. It may not be much more than a residency stipend but it's something. I'm excited to be working with people, have a cohort and be giving and receiving feedback. I'm so ready. I know it's 9 months away but it's there. A change is going to come.

Simon will have childcare for at least 2 hours after school M-F, he'll have 2 full time working parents  and who knows how that's going to work? We don't. We've never done it before.  My work has been taking care of him and the home.  The latter being the less time consuming one. So many what if's come to my head. So many unknowns. Lots of parents do it. Lots of parents of kids with special needs do it. It's been a great privilege and luxury to have been able to not do it for the last 8 years. So much gratitude to Bernie & Eileen, Dianne & Ed, Bruce & Nola, Barry & Larry and everyone else that has helped make it possible for me to be a stay-at-home mom.  It's been a gift.  And harder than anything I could have imagined.  I'm ready. I want this. It's so exciting that it's going to happen.  Nine months is a great amount of time to get ready to have my life significantly rocked.  Our family is going to work it out. I have faith.
.....get it? I'm going to be a Chaplain...faith. It's funny right?


I have to give some props to Jaime who has been holding it together during my surgery, weaning from the nerve drugs, application process, mood swings and all that other great stuff that's been happening for the last several months. Our parents, our community, chosen/blood/heart family have all gotten us to this point.  We may have more surgeries, hospitalizations, dark clouds, and puberty ahead of us but we will continue to work hard at choosing and harnessing the Light Side of the Force.

There I said it.  I still won't take Simon to see the movie. It was good though.

Here's to a new year full of adventure, joy, wonder, learning, loving, and connection.


Much love


...and some photos of the Dickens Faire with GG and G'Paw

I may not be Naughty but I salute your lifestyle choice

Battling with PickPockets

Chimney Sweep Challenge!

Holding Court

Joining the Ranks

Preparing for my Fencing Lesson

Oh she's good!

 But no match for me! (Actually she's the #2 Fencer in the State!)

Proud Protege

Getting and giving some fairy love.

Merry Season to all!

Do You See What I See?

Most nights when I am putting Simon to bed, there comes this moment. We begin with him lying on his back and me to his right lying on my side. After the books have been read and the music has been turned down to *fall asleep to this* level, I will think he is asleep and get ready to leave.  He will turn over on to his side facing me and find some part of my face or head to stroke. Tonight it wasthe newly shaved back of my neck.  When this happens I think over and over again *ohhowIloveyou, loveyouloveyouloveyou*

There is nothing sweeter than this moment. It's so simple and elemental.  Everything from the day or tomorrow fades quickly and quietly away and there is nothing. Just my son touching my face or head letting me know in no uncertain terms that I am his.  I am almost sad that there is never anyone around to witness this. It would be hard anyway with how delightfully dark his room gets, but I still sometimes wish that I had someone to witness this and remind me of it later.  Sometimes.  Other times I know this is one of those memories that will last me a lifetime and come in handy when things are a little more complicated.

Like most of the time.  

We are just a few days away from surviving yet another Winter Break, or as I like to call it, no break at all with a healthy dose of chaos thrown in to an already very full and mostly unpredictable life.  We had 3 Chanukah parties in three days, a trip down to Santa Cruz for Therapeutic Horseback Riding camp, a lovely Christmas Eve party, quiet Christmas morning with a Dim Sum lunch, Mamaw sleep overs, PopPop visits from NYC, Aunts and Uncles and Cousins visiting from L.A., more sleepovers with cousins and PopPop, swimming, playing, toys strewn about and movies attended (Big Hero 6 3x!!)

It's busy and joyous and loud and frenetic. It's also full of lovely quiet books read, and walks down the street and hands held.

For those of us with kids with the Special going on, it's also sometimes really really hard.  For Simon and I it's a huge change in routine and support systems. School is on break, ABA therapists go home to celebrate with their own families, therapies are on hold and there are expectations and comparisons as prolific as the pine needles and dreidls that litter the living room floor.  The last two are mine, all mine.  I don't know about what goes on in the minds of visiting relatives or even strangers at holiday parties. 

What I do know is that it's delightful and heart wrenching to watch my 6 3/4 year old connect so beautifully to his newly turned 4 year old cousin (while imagining that the next time we see them, he will have developmentally surpassed my son). 

 It's the tension between hearing over and over again how amazing Simon is doing and watching him need to disappear from social gatherings because they are too crowded. It's exhausting hearing the same out of context call for distress ("you will be arrested" or with his hands buried in his head "I died") when he needs some help or is overwhelmed but at the same time being able to read to the aforementioned cousin while sitting on the couch.

And what do other people see? They see an engaging, charming, very handsome and sometimes very witty little guy that really loves to engage. He talks non-stop. He's mostly easy going and he really really loves attention.

*cue the very small violin right about now*

It's hard to have the child with special needs that talks a mile a minute but can't have more than a 2 count back and forth with you. It's hard to have your almost 7 year old play so beautifully with your 4 year old nephew and immediately see that it's not going to stay that way for long because your nephew is not going to be able to hang for much longer with the delays. It's really not fun getting to a party and needing to sequester yourself with your son 90% of the time because the typical way that the other kids are playing is out of the realm of possibility for your kid. It's both amusing and heartbreaking to see your child get into opening presents for the first time and obsess over the Nerf guns that he got but can't work them correctly because of fine motor skills and attention to instructions.  It's the pat on the back that I can give myself for being that mom that fosters the costume play long after Halloween has ended and but realizes and then forgets the toileting issues that come with Velcro down the length of one's back, delays in potty training, and Simon's inability to ask an individual for help.

It's all of these things and more when we maneuver our way through those two long weeks of vacation. What do other people see? I don't really think about it that much outside of winter break, but it does bring up hard feelings around invisibility and isolation. And I know the grass is always greener and if your child is non-verbal or has different mobility issues, I hear you.

We have a friend whose slightly older daughter has just begun asking the "why am I different?" questions. They are so brutal and wonder-full to work out. The fact that she is asking them at all speaks to an awareness that will both weigh heavy and serve her for the rest of her life.  I do not know that Simon will ever have that awareness.  He is so clearly sure of who he is and barely bothered by the moments when he bumps up against systems, peers, or places that don't easily accommodate.  He was hurt when those boys at Hebrew School didn't want to play the ways that he plays.  He cried hard. He couldn't tell us why but he had the feelings. He was bereft when the Walking with Dinosaurs Live show was over. He couldn't understand why he couldn't watch it again and again and again.  And with both situations, he moved through it with a resilience that I would give my left blinker for.  

Still, there is something that's missing in his ability to connect; in his ability to integrate material, people, places, and events that keep him somehow disengaged or at least it seems that way.  And then all of a sudden he reaches out and draws you in.  He does it when you least expect it and sometimes when no one else is there to witness it.

 I think he takes great delight in his life. I see him as a happy child, one that is grounded and loved by a vast community of people. I see him for his complicated and ever changing self. I see him as unique. I see him as challenged and struggling in a world that is too often looking for the easy/fast way to keep turning round. I see him confused and frustrated and just beginning to wade into some kind of pool of curiosity about the world around him.  I see him.

So when he reaches out to touch my cheek or neck just before he sleeps, I don't mind the darkness or lack of witness. I actually love this vacuum that I get to breathe into. It's such an important 'other' time. For both of us.

Spidey Rides the Mountain Lion

Hang On Tight Mommy!

Just another night of ABA at our house

Friends

Simon Loves him some Sommers!

Protesting and Learning

Reading to cousin Charlie

PopPop in the House!!

Getting Ready for Dim Sum Christmas!

Simon's first real dog love Walter!

Mommy Love

How we bring in the Light!

PopPop and the Grandchildren

Look at that Face!

Family Photo

YouTube is mesmerizing

Taking a break post Little Farm

PopPop is super comfortable!

and a great reader!

Warriors!

Yoga at our house

Cousin love affair

Happy New Year to you all!