Defying Gravity

Today is the 8^th 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):

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!!

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. 

  

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!