Wednesday, August 9, 2017

Nine Years Ago

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

Today is August 1st. 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.

Sunday, July 9, 2017

(Almost) Annual Update

We were at Camp Taylor (a cardiac family camp) this weekend and being around so many other "heart" families brought the cardiac stuff to the forefront of my mind in a way it hasn't been in a while.  While we were at camp, I decided to re-read our last blog post and realized it's been almost a year since our last post!  It made me smile, actually,  because it's a marker of how medically stable Simon has been. Around here no news is good news.

That said, there's a lot to catch up on...

My (Jaime) depression finally got to a point where I decided, after much kicking, screaming and trying every other possible avenue, to try an SSRI.  The first drug I tried was Zoloft and I am not kidding when I say that literally the next day I felt like I was seeing the sun and hearing the birds for the first time in close to a decade.  I assumed that must have been a placebo effect because I've always heard that SSRIs take weeks to get up to dose, but have since learned that it was a real, true response of my brain to finally getting what it needed.  I joked that my brain was like Pac Man gobbling up the SSRI hungrily.  Nom nom nom.  My therapist told me that Zoloft is now prescribed for women who have very severe PMS for 5 days a month and that it works that quickly and effectively.   Who knew?

I developed a weird rash after less than 2 weeks, so they made me taper off and wait for the rash to go away until I could try something new.  That tapering process was mindblowingly informative.  After a few days off Zoloft, every day that passed brought a deeper layer of fog that left me feeling tired in a profound way that left me unenthused about everything. Like, everything just seemed like it was going to take more effort than it was worth, even things I usually like. I realized that that was how I had felt for YEARS but had just gotten used to it. Holy crap, wake up call.  

Since finding a new med that works (and bonus, no side effects for me!) I've realized that the last 5-8 years have been like walking around with a raw abrasion.  You know that feeling when you have a big new scrape and anything hits it (water, air, clothing, a table) sends shockwaves through your whole system that make you catch your breath and your head spin?  Life was kinda like that for me.  I'd just catch my breath from the latest bump, no matter how small, and the next thing would hit and my whole system would just start up on red alert.  

My therapist had the best analogy- when you break an arm and you put a cast on it, the cast isn't healing your arm.  It's creating an environment for your arm to heal, but your body is doing the actual healing.  That was the most helpful thing for me because I have such a stubborn "I'm fine, I can suck it up, I can do it myself" attitude.  What I heard her say was that trying meds might give my brain an opportunity to rest enough so that all the other hard work I'm doing to keep myself healthy (therapy, exercise, eating well, meditation, etc) has a better shot of actually getting in and helping. Going on meds has been like putting a bandage over it so the raw places can scab over.  Almost every day I say to Laura cheerily "I'm so glad I'm on an SSRI" and she just smiles at me knowingly as she'd been trying to convince me to face my fears about this for the last few years.  

I think one of the other things that tipped me towards deciding to try an SSRI was seeing statistics about the PTSD/anxiety/depression rates of parents of kids who have severe medical trauma and very similar data for parents of kids who have developmental/behavioral challenges.  I did the math on us and realized that what we face on a day to day level is so absurd that it's almost inhuman to expect someone to manage it with the "self-care" most people use with success.  I also checked around and realized that almost every single parent I know of a kid with severe special needs is getting some sort of medical support for depression/anxiety.  I like to think of myself as SO special, but...apparently not so much.  

Life feels so much more manageable. The fears of judgement (from myself and others) seem so silly knowing what I know on the other side.  A good friend who has a very similar personality went on an SSRI about a decade ago and when I was picking her brain, one thing she said most that stuck with me was "when I finally tried meds, I  realized how much energy I had spent just trying to keep my head above water.  It wasn't until I could rest that I realized how hard I'd been working and how little energy it left me for all the other great things in life".  Exactly. 

In other news, in January we completed a neuropsych assessment for Simon to investigate ADHD (with an AMAZING provider!) and Simon received his third diagnosis- Inattentive ADHD.  After much discussion and thought and great conversations with our pediatrician, we decided to try meds.  Holy smokes.  His behavior and grades went up a whole level almost immediately.  For the first time ever, after Spring Break, he didn't wake up every morning asking "no school today"?  He was actually almost in tears that school was ENDING.  After trying them on weekends and for events a few times we decided they're a great tool for school but not for other stuff.  Again, sometimes meds can be awesome.  Not such a popular stance in lefty lesbo circles, but it's true. 

One other thing I learned this weekend at heart camp, related to autism, oddly, kinda blew me away.  David, one of Simon's nurses from his PICU stay 8+ years ago was working at camp.  We were strolling down memory lane about lots of sad and funny stuff and at one point I said, "do you remember how when he was intubated he just chewed up Versed like it was candy?".  (His dose of the sedative would wear off WAY faster than normal, leading to some creative thinking about ways to keep him sedated).  David casually said, "Oh yeah, kids with autism metabolize those kinds of drugs really differently.  We always have a really hard time trying to figure out how to keep them sedated". 

I just sort of stood there and stared at him. He was telling me Simon was autistic even as a baby. That news sort of rocked my foundation.  Simon is so quirky and doesn't fit neatly into a lot of the diagnostic stuff around autism so I've always sort of thought (for no real reason I can come up with) that he's not actually autistic but has autistic-like behaviors that largely stem from the trauma and interruption in development.  Big whoop.  Makes no difference on the ground and I don't think I have stigma stuff about autism, so why my brain has held onto this illogical origin story of his quirks and delays, I don't know.  There is new genetic data showing it's a genetically coded trait  (like schizophrenia or other brain function differences) that can be there but inactive unless a trigger turns those pathways on.  Maybe heart disease-related trauma was the trigger.  Maybe he would have developed autism anyway.  Who knows.  Mostly the whole thing really made me look at the thoughts I have about the origin story of his autism and why my brain even thinks it matters. 

I also had the clever thought of, "Oh goody! If hospitals see infants who metabolize Versed and similar drugs differently they can let the parents know that's a marker of autism so they can be vigilant about screening".  I quickly realized that if a kid is needing Versed, the last thing the parents need is one more thing to worry about and that that was probably a horrible idea. Duh.  

Onto Laura:
Last September Laura started a Hospital Chaplaincy program and has found her calling.  She absolutely adores it and is now seriously thinking about doing a distance rabbinical school program.  She's been doing such an amazing job at her work that she received an award from the training hospital for her excellence.  I'm so proud I could just cry.  She graduates this August and will be on her way to becoming a Board Certified Chaplain!  Then we figure out the job thing.  Whatever.  She found her life's work for this next decade at least.  How many people do you know that can say that? 

The last update is that a week ago, Laura had somewhat emergent rotator cuff surgery for a mysterious and pretty severe tear of her right shoulder.  The surgery went well but the whole thing sucks.  She's looking at a long road of pain and PT as she gets it back in shape.  It was an interesting test of the SSRI as she's had 2 other surgeries since Simon was born and both times the whole thing sent me over the edge.  This time I just rolled with it and was appropriately stressed/anxious.  Better for everyone!

The short version is: Simon is medically stable, getting the developmental supports he need and is as quirky and hilarious as ever.  Laura is finding her bliss professionally and dealing with some hard body stuff.  I'm finally able to enjoy life thanks to a much overdue and needed pharmaceutical assist and figuring out how to slow down, be gentle and enjoy some of the simpler things in life.  

Life, for now, is pretty good. 

Simon made Safety Patrol this year!

Preparing to meet Voldemort, on our way to Orlando

Protecting the bus stop. 

Hanging out with Max, our new buddy at the Oakland Zoo

Goofiest school photo!


Getting to cook with real chefs, through a great org called Coach Art

Keeping Oakland's street safe

Suiting up for the Farmer's Market.  As you do. 

Powering up for our flight. 

Makin' friends in Orlando. 




Monday, August 1, 2016

Defying Gravity

Today is the 8th anniversary of Simon getting diagnosed with Cardiomyopathy and our life going totally off the rails. I guess not “off” the rails, but definitely on a WAY different rail than we could have ever imagined. 

Last night I had a visceral memory of being woken up by the sickly sweet smell of formula soaking Simon’s crib when the port on his feeding tube would pop open during an overnight feed and the entire contents of his stomach, plus what the pump was putting out, would end up all over the bed. In “Tubie” circles, it’s called “Feeding the Bed” and it’s the bane of every tube feeding family’s existence. 

I lay there remembering how Laura and I would work like a finely oiled machine in the dark, pen lights firmly gripped in our mouths while one of us put a towel on the bed so we could change the soaking baby out of all his clothes and wipe him down while the other person changed and wiped down the crib. We could do the whole thing in under 5 minutes in the dark and not even wake the baby. When we were done, I knew I needed to be quiet for a few minutes because Laura would need to lay in the dark calculating how much extra food she could try to push into Simon the next day so he could grow. 

My internal clock still jolts me alert every once in a while at 10 pm, thinking it’s time to give Simon his dose of Lasix.  Our kid hasn’t taken Lasix for at least four years. FOUR years and my body still remembers. 

Last Sunday, Simon still hadn’t come into our room by 7:45 a.m. (he’s usually up by 6 if he’s not sleeping in our bed). I lay in bed simultaneously grateful for the extra bit of sleep and half wondering if he died in his sleep. The second thought didn’t even register until, out of the quiet, Laura said, “is it terrible that I still wonder if he’s dead when he sleeps in?” We lay in bed curled around each other, willing ourselves enjoy our snuggle instead of getting up to assuage the relentless beast of worry. Ten minutes later, we heard Simon’s door open and we both breathed an audible sigh of relief and hauled ourselves out of bed to meet the day.  This stuff is just woven into the fabric of our lives.  This is what it still looks like 8 years later. 

Tonight, as we do every year on August 1st, we delivered baked treats and a card/sign that has a "before" (Simon in the PICU) and "after" picture (Simon now) to the PICU staff.  I got there before Laura and Simon and decided to sit outside on a bench in the sun.  I leaned back, closed my eyes and immediately felt tears spring to my eyes. I remembered so vividly sitting in that same spot, warm sun on my skin, trying to find a moment of joy eight years ago.  I still remember how good the sun felt when we were in the hospital.  How good food tasted.  How funny jokes were.  How bright colors were.  How much joy felt like joy and grief felt like grief.  How simple everything was.

As we walked through the hospital tonight, I felt the calm, heavy, warm feeling I felt so often in the hospital.  I didn't want to talk, I didn't want to move fast, I didn't want to do anything but just BE.  It's not unlike the sleepy, heavy feeling I get when an airplane takes off, before the cabin pressure adjusts. It's like a little extra...gravity.

On August 1, 2008, Simon received a very grave diagnosis. We found ourselves overwhelmed by the gravity of the situation. I didn't really understand the meeting of those words in a lived sense until that day.  It's not a bad feeling, this gravity.  It's like a heavy blanket that slows you down so that everything feels very...simple.  It overwhelms your senses until the busy fades into the background and all you can sense is the sun on your face or the sound of your son's breath or the ticking of a clock while you wait for news. There is a very strange way this felt liberating. There is a simple beauty in having to surrender.  A relief at having no choices to make. A peace in knowing you have one job and one job only- to SHOW UP.

But the thing about gravity is that if you let it build and build and build it will crush you. There comes a time when you have to fight to get up, to get back in your lane even if it feels too fast, to rejoin life.  There comes a time when you have to defy gravity. 

Defying gravity has been the hardest part of the last 8 years.  Sometimes trying to function like a "normal" person, at the speed required by our society, has felt like trying to get a jumbo jet off the ground with a hamster powered engine.  It's a lot of fucking work and sometimes you're not sure it's going to happen.  

These last few days I've been remembering the sweetness and simplicity of our days in the hospital and also the sheer terror and trauma.  There was a damn good reason we worked to hard to get out of there and stay out of there. Both/and. 

This track we’ve ended up on has been brutal.  I'm not going to lie. It’s left me feeling beaten and scarred and always waiting for the other shoe to drop. Sometimes it feels like the intensity of the first few years of Simon's illness drained almost every ounce of emotional reserve I had accumulated throughout my lifetime. I feel like I aged 20 years in the last 8. 

This track has also required me to connect to and depend on people in a way I never would have otherwise. It’s left me with a heart more wide open than I ever thought possible. I feel a comraderie and fierce love for other families with kids with big struggles that I never thought possible. Actually, for all of humanity that’s struggling. It’s the fierce love of an underdog for another underdog.

These anniversaries are always so mixed for me. It’s painful to remember how hard it has been and such a good reminder of how far we’ve come. Simon is happy and healthy and totally unlike any other person I have ever met in my whole life. Laura and I are still going strong despite getting whacked with an absurd number of curveballs. We are loved and we are loving.  Gravity is pushing and we are pushing back.  We are defying odds and defying gravity.

That’s good enough for me today.

Simon, summing it up (with his cousin Francesca in the background):







Friday, April 8, 2016

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 9th. 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 1st 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 15th 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!!

Tuesday, March 1, 2016

Poster Child, Part Deux

 So...our kid is a Children's Hospital Oakland (CHO) poster child again.  Literally. On posters.

Again. 



Thanks to Laura's willingness to tell some important people at CHO some hard truths about our experiences at their institution, Simon might help save some lives.

CHO, like many hospitals, is struggling to get people to wash their hands.  It's tricky to figure out exactly how to get busy, stressed out, tired people to remember to so something so boring so many times a day.  And, in a hospital, unwashed hands can equal death, disability, suffering, pain, and trauma.  We know firsthand (no pun intended).  

When the team working on this issue realized they needed to make it personal for the staff, Laura decided to offer up our story as a possible tool.  Simon got septic three times in the four months he was in the hospital. Each one was almost certainly due to a lack of handwashing by SOMEONE in the hospital. Maybe it was us.  Maybe it was the staff.  Who knows.  But someone had dirty hands and it nearly killed him.  Three times. 

Laura was the genius that came up with "Simon says 'wash your hands'"  Brilliant, right?!? I  
The hospital had piloted a few cartoon mock ups of signs, etc but we had not seen the final materials until tonight.  Something about seeing those photos of him and having our story right there for everyone to see made me feel...resilient.  For the first time in a LONG time, I felt successful in the face of trauma. 

I've been thinking a lot about resilience lately.  I've been deep in the trenches doing some heavy emotional work on trauma, both from Simon's illness and also earlier stuff.  I've been feeling just...awful.  Fear, shame and humiliation about feeling afraid, shame and humiliation about feeling ashamed and humiliated because it feels like weakness and admitting defeat to feel afraid and then stupid to feel ashamed of feeling afraid- you get the picture.  An emotional fun house. 

When Laura texted me pictures of the posters that are going up around Children's Hospital Oakland, I felt proud.  Really proud. I couldn't quite tell what I felt proud about until the word "resilience" popped into my head and I had a mini-epiphany.  For so long I've thought that resilience means coming out of a battle unscathed, unscarred, untouched. Coming through the clouds and dusting your shoulders off having hardly broken a sweat, grinning victoriously.  For years, this idea of resilience equaling Teflon is where I've gotten tripped up.  
All the hard, scary awful things that have happened to me have left a mark. They've changed and shaped and bruised and even gouged me.  But, I am beginning to realize, being marked doesn't mean that I failed or lost or am weak or fragile or damaged.

Our story on those posters is a tangible marker of resilience.  We decided to use the worst thing that has ever happened to us as a tool.  Tonight I really got that resilience is NOT not feeling.  It's taking those feelings and that information and those experiences and USING them.  

I will probably always have a heightened fear response when Simon gets a fever.  I will never forget what he looked like with a fever of 107. It was one of the most terrifying moments of my life. That's okay. Resilience doesn't mean that I won't get scared. I will probably have feelings every time I see that poster. It was awful.  But I'm totally willing to see that poster ever time I go into those buildings because resilience means I get to mix some pride in with that fear and put it all to good use. 

  

Saturday, January 9, 2016

Lordy, Lordy, Look Who's Forty

On Tuesday I turned forty years old.  Forty! I...well, I just...yeah.  Wow. 

I've been thinking about how I wanted to mark this birthday for a long time. I decided to do a series of smaller events, have one-on-one dates with friends and make plans over the year to do a bunch of things I've wanted to do for decades (go to the French Laundry, do a week long course at the Culinary Institute of America in Napa, and a few other things I haven't even dreamed up yet). 

I've been doing some personal coaching sessions with Get There Coaching and had some tremendous epiphanies that are extremely well timed.  (Kendra is crazy talented and has a real has a gift for this work.  If you are thinking about doing any kind of personal coaching work, I'd really think about working with her.  We've done all our work over the phone, so you don't have to be in the Bay Area!)

 The two most useful things I've come to is that a) I need to have more fun.  Lots of it.  Whenever I can.  I need to shift things around to make room for fun and choose it when it's there. I've started putting together a Fun Committee for my life.  One friend is in charge of getting me out to swing dance events (pretty much my favorite activity in the world).  Another friend is tasked with getting us to a trampoline park, WITHOUT our children.   I have plans to rope in a few other friends for other fun stuff. Gonna make this happen. 

The second really useful piece that came out of the coaching is a personal mission statement that I was able to distill down to 3 words: Justice, Zest, Rest.  In addition to justice (what I do for work and 90% of what I talk about on Facebook and fun (Zest), I am really starting try to rest when I can.  I'm starting to take my grandmother's advice to heart: "Why stand when you can sit, why sit when you can lie?" I'm trying to say no to more things so I can rest and make room for fun.  We'll see how it all goes.

The other thing I decided I wanted to do for my 40th was launch a community kindness project I've been thinking about for a bit, so on Jan 5th, I launched a Gofundme campaign for my project called Tikkun Tokens!  Tikkun Tokens are free wooden tokens I'm having made that can be used to recognize someone's act of kindness. I loved the idea of a simple tool people could use to recognize another person's act of kindness and that can be used as a small act of kindness in itself.  I wanted to root this project in the value I hold most dear, "Tikkun Olam", or repair of the world.  It is my most core belief that we can all be ambassadors of goodness and repair as we walk through the world. My hope is that these tokens help people do that work.  You can order your own set of tokens here: http://www.tikkuntokens.org/get-tokens-to-share.html

The last decade was a bit, shall we say, INTENSE.  I learned a tremendous amount about myself and suffered quite a lot of trauma.  As things are stabilizing with Simon and I'm starting new decade, I am really trying to shift my point of reference from all that has been hard to all that is going well and to the hopes and dreams I have for my own life, not just Simon's. Here goes! 
Getting fancy for a birthday dinner!



Monday, December 21, 2015

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!