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 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 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!

Monday, October 12, 2015

A Decade

On October 22nd, Laura and I will have been married for a decade.  Ten years of wedded bliss. And trauma and intense personal growth and community building.

We decided to throw ourselves a party.  A big one. Like 100 people big.  Cuz...go big or go home, right?

That seemed like a great idea when I booked the location 4 months ago, before I stumbled into ye old pit of despair and before Laura herniated a disc in her neck (more about that soon, I'm sure, as she's scheduled for surgery a week from today).  About 3 weeks ago, I had a total and complete freak out. Like, "I don't care if we lose the deposit, I want to cancel the party" freak out.  An "it all feels like too much work and something will go wrong and it will all be ruined and I'm just going to end up disappointed and you're so grumpy from being in pain and on pain meds that I'm not even sure I can pull it together to LIKE you at our party so let's just call the party off RIGHT NOW", kind of freak out.

That was actually the night I figured out I was depressed, because one thing I know is that my life is better with Laura in it and I want the world to know that and we have an amazing community and I love food and I instantly fall head over heels again when Laura does her adorable faux goofy-but-actually-really-hot dance moves, so if I didn't want that, then something was seriously wrong.  It was a kind of useful freak out, as freak outs go.

So...we had the party.  And it. Was. Perfect.  Not disappointing.  Not even a tiny bit.  A few folks I really hoped would be there didn't make it and I hardly got to talk to the ones that did, but there was enough food to feed an army and bands of kids were running around wild and happy and the adults all looked relaxed and smiling and dancing (thank you Kris Woolery for the most bad ass playlist!).

One thing I hadn't really planned was clean up.  I figured I would just do it myself.  I tells you a lot about my psychology. As the end of the evening approached I started looking around and realized how much work it was going to be.  Before I could start to get into work mode, our dear friend Saun-Toy grabbed Laura and I and the 10 or so friends left. She pulled us into a circle and proceeded to start the most beautiful shower of love and affirmation for us.  After folks gifted us with some of the most powerful and lovely words I have ever received, a group of 3 stayed and clean up was done in 20 minutes. I didn't have to ask for help.  It just...happened.

Our last friends walked out the door as my new favorite song came on - "What Do You Mean" by Justin Beiber (I  have no shame. I know I turn 40 in 3 months,but I'm a Belieber.  Whaddya gonna do?).  Laura grabbed me for a slow dance and I melted into a puddle of tears.  When I pulled it together I managed to squeak out "I just feel so SEEN.  It's the thing I wanted most growing up and it's really happening.  They really see us and what we're trying to do".  As Laura kissed me softly on the forehead and drew me in closer, I was filled with an overwhelming sense of contentment.  I haven't felt that feeling in...years.

As we close out an incredibly difficult decade, I am finding myself feeling so hopeful about the decade to come. During the silent meeting we had the morning of our party, an analogy came to me that summed up what I think this last decade was about.  Laura's grandmother was a sculptor and she described sculpting not as creating something, but taking away the excess so that the form could show itself.  I feel like what has happened over the last decade, starting with Laura's head injury a few months before our wedding and continuing through all that it's meant to be a parent of a medically fragile kid, have revealed both who we are as a couple and who I am as a person.  There were a few places where we got gouged too deeply, FOR SURE, but mostly I'm realizing that this decade was about clarifying who I am and what I stand for and what is important to me and the same for us as a couple and as a family.

My vision for the next decade is that life will smooth out those rough edges left from the first pass, sand away the deep gouges and buff us with gentle strokes until we shine.  Cuz, if life comes at me with another chisel anytime soon I'm going to have to kick some serious ass.  I'm serious.  Hand to hand combat.

Otis and Simon's Godmamas lookin SHARP!

There was another food and drink table besides this!

Me and my Papa and his too-cool-for-school pants


Me and my Mama

The fabulous Cherry

Who says parents of kids with special needs can't have a good time?!

Parental units

I don't even know what is happening with Laura's face here.  But Pete looks lovely!
Simon's Dunkle Mike!

Cousins Uma and Girija who travelled over an hour to be there!

Girls dancin!

Tuesday, September 29, 2015

Depression Is An Asshole

It really is. It's the annoying friend of a friend that crashes on your couch for a night and ends up staying for years.  It stealthily snitches fistfuls of joy when you've turned your back and holds it's hands over your eyes when you're trying to see the sunset. It's the kill-joy guy that shoots down every good idea you have and nods with a smug "yeah, sure you are" expression when you say you're going to get up off the couch littered with junk food wrappers and go do something fun.

I realized last week that I'm depressed  I've had moments of feeling depressed over the past 7 years, but always chalked it up to the incredibly depressing, stressful situations we kept being in. Now that the dust has mostly settled, I'm realizing I'm still overwhelmed/un-enthused/disappointed-in-advance about almost everything I set out to do.

It threw me to realize that what I'm experiencing is depression because my go-to concept of depression is severe, clinical, debilitating depression.  I don't feel despair. I don't feel angst.  I don't feel suicidal.  I just feel...bored.  Like nothing is interesting.  Like nothing  is going to work out or be what I hope it will be, so why bother trying. Once I articulated it out loud to someone the other day, the lightbulb went off.

It was great, actually to realized that the problem isn't my life, it's my feelings. THAT I can do something about. When Mr. Wah-Wah starts up, I've started to think "that's just the depression talking" and sometimes the bad feelings blow away like fog.  And...sometimes, not so much.  But sometimes is better than never.

I was watching a video of a war veteran today for work (I now do policy work related to homelessness) and there was something about the flat expression on her face that made me start to tear up.  I recognized that face. That's the face of someone who has been through trauma.  At one point she said "you can't come back from war...and just be a civilian, be normal again. It's not possible." Sitting at my desk, I heard myself say out loud, "EXACTLY". My outside face doesn't look like hers, but my inside one does.

The more time that passes, the more I realize the long-term effects Simon's medical trauma had on Laura and I. I don't know what war feels like, but I know what the unrelenting threat of death feels like and I think they might be cousins.

The hair-trigger fear that used to flare when Simon got the sniffles or I smelled hospital soap on my hands has quieted down, but the unshakable feeling that I shouldn't get my hopes up because something disappointing/traumatic/upsetting/frustrating will likely happen is borne of those years and years of the steps back between the steps forward.  Yes, we moved forward and Simon is a walking, talking, playing, joking, eating miracle, but those backwards steps back have taken their toll.

In our Cardiomyopathy Listserv, we often joke about how the majority of us parents are on anti-depressants or anti-anxiety meds or should be. For a long time I have thought that because depression is expected in our situation it should be tolerated, but I think I'm getting clear that the Debbie Downer in my head needs to take a hike.

I have some good supports in place that I need to make better use of, including writing on this blog. If I have learned anything from the experience of parenting a medically fragile child it's that naming the hard, scary stuff out loud takes some of its power away.

Over and out.

Tuesday, August 4, 2015

The Stork is Coming!

 Every once in a while, someone will ask Laura or I if we plan on having any other kids. The answer has always been a definitive "No".  Some days my answer is "Hell no!".  I adore our kid but he is the work of one and a half kids and we're barely keeping it together as it is.  The only way we're able to keep it all together is with the absurd amounts of support from our family and friends.  Particularly Andreana and Joan, Simon's godmothers.

I did not grow up in a religious family so when we started talking about having Godparents for our kid, I thought of it mostly as "these are the people we've decided should take in our kid if we both get hit by a bus".  I had no thoughts of what Godparents might do beyond show up in my hypothetical tragedy.

It's just as well I didn't think too much about it because I couldn't begin to imagine all the ways Andreana and Joan have showed up for our family. They logged countless hours in the hospital with Simon when he was a baby. They are the ones I called to take Laura to the hospital at 3 am when she was having a gall bladder attack so that I could stay with Simon. They learned how to do tube feedings and give meds and changed diapers for YEARS.  They are the only other people besides my mother who have taken him on overnights.  They are the first people we call when we have a sudden pothole in childcare and there has never been a time that they turned down a request unless they absolutely had to.  They are as close in with us as one family can get to another.

Another thing to know about these two is that they have been trying to have a child for years.  Not one or two years.  YEARS.  They have both endured expensive, painful, unpleasant infertility treatments, paid crazy fees to adoption agencies, been grilled and inspected and assessed by government officials to determine if they are "suitable".  It's been grueling.  So grueling that they were getting really close to saying "I give" and being done with the ceaseless brutality of trying to become parents in the face of countless obstacles.  So close they had almost set a firm deadline for the date the grind would stop.  And then....

And then some magic happened.  Out of the blue, the birth mother of their dreams picked them.  Oh, by the way, she's due In less than 2 weeks!

Because of the tight timeline, our beloved framily members are facing unexpected costs, including a hefty out-of-state fee from the birth mother's adoption agency that can normally be avoided by having the birth mother come to the state of the adoptive parents, cross country travelling when you're 8 1/2 months pregnant!

As a tiny way of helping give back to these two amazing women who are at the very core of Team Shimmy and helped us and Simon all stay alive, we have started a Gofundme page to help raise money for their additional costs.  If any of you readers have been wondering about concrete ways to help Team Shimmy, here is your chance.

These two people define what it means to show up for someone else.  I can't wait to get a chance to try to balance the scales when the newest member of our family arrives.

Squeeeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!! We're having a baby!!!!!!!!!!!!!!!!

In the courtroom just after I adopted Simon

At our wedding at the hospital 

At the hospital when Simon had ear tube surgery
Smoochin with Auntie Dre

At city hall, marking Joan and Andreana's domestic partnership

Goo goo eyes with Auntie Joan


Tuesday, July 28, 2015

Friends...How Many of Us Have them...?

I always have.
In Nursery school there was Cindy. She and I would play 'Happy Days', strutting around the place like we owned it. I was always Fonzie (naturally) and she would often be my girlfriend but sometimes Pottsy.

In Kindergarten there was Kobe and Gabe. When Gabe moved to Australia and Kobe didn't show up for first grade I remember feeling lost. Iris, Lisa, Susie, Pninit and Judy quickly became my posse and Ari (the Principals son- I don't fool around) quickly became an important partner in crime.
 In 5th grade Adina and I became best friends being the top two girl dodge ball players in the school.
High School was all about John, Tessa, Brian, Rachel and Carly. College meant actually living with your friends and Maia, Melissa, Hannah, Winter, Alicia, Anna and so many more filled me with as much joy as the learning and playing. Through it all were camp friends, Josie, Zoe, Polly, Sam....

California meant keeping up those college friends while making new ones from work, friends of friends, random dog park conversations, and the process of creating community through trauma and joyful moments.

I believe more than most things, that connection has kept me alive. Through being teased and bullied, coming out, through motorcycles & horses, and of course through my son's diagnoses and growing up challenges, it's been the people in my life that have gone beyond keeping me grounded, they have kept me thriving.

It has been one of the hardest things to watch my son have the opposite experience; until now.

About 6 weeks ago Simon started camp at the YMCA in Berkeley. He went there last summer for one week before starting another camp for the entire summer.  8 Weeks of Camp Kee Tov was spectacular for him and we saw him grow in leaps and bounds. He loved his counselors. He loved the singing and the Ruach (spirit) of it. He connected with some of the older kids and even had a day or three of hanging with a boy his age.

This summer has been different. Simon went to Y Camp for the week after school ended and then we headed off to Yosemite. Simon came home a week early and got right back to Y camp without missing a beat (ok he missed one week). He was signed up for 4 more weeks and then we had registered him for the last 4 week session at Kee Tov given how great a time he had there last summer.  In my mind, we were kind of waiting for Kee Tov. They had done such an amazing job job last year working with his quirks and he clearly had great love for that place.

I forgot to mention that when I had dropped Simon off at Y camp during that first week of the summer, I asked to talk to his counselors and Unit head just to give them a heads up on heart stuff and autism stuff.

DJ listened carefully to the heart stuff but then started smiling as I went into the autism stuff. She said she worked with kids on the spectrum during the school year for Oakland Unified and not only did she get Simon, she was going to guarantee right then and there that Simon was going to have a great summer. She gave me her cell number and sent me on my way assuring me that she would be working closely with our ABA team and Simon's counselors.
I left thinking that Simon would be in good hands until he got to get back to Kee Tov.

A week went by and I heard at pick up from one of his counselors that Simon was actually playing with one of his peers. Another girl in his group. It was sweet but I didn't think much of it.
The next day, when I went to drop him off in the morning, DJ made a beeline for me and said how amazing it was to watch Simon make a friend. 

"I know" I said skeptically. "I heard about **** from his counselor yesterday."
"Yeah, they've played some but you know Niara is his best friend" DJ said.
"Oh, I hadn't heard about her" I say still thinking that these are fleeting moments of other kids being able to hang with my son who cannot sustain interactions with his peers.

DJ shakes her head and takes me by the hand leading me out of earshot of Simon- who listens to everything.
"No, I don't think you understand. They love each other. They walk around holding hands. She asks him to come swim with her and he goes! He sits next to her every lunch time. They are like two peas in a pod. It's been like this all week."

She is speaking low and slow so I will get it. She gets it. She wants me to get it.

It's sinking in. I am skeptical but I see her intensity. Three weeks have gone by since that conversation and each week has brought with it pictures, stories, and a slow settling in belief.  My son has his first friend.

I have watched them play at pick up. She meets him where he's at. He meets her when she makes bid after bid for his attention and ladies and gents....she holds her own when he engages her in StarWarsMonstersTransformersBarbieMinion battles. It's amazing to watch. I feel my heart inflate like a Mylar balloon and then pop like a birthday Pinata!

It was hard to think about them not seeing each other for the rest of the summer.

When we had a week left before the start of Kee Tov, we gently asked Simon if he wanted to stay at Y camp or go to Kee Tov. Two or three times we very clearly laid out the options. Go to Kee Tov or stay at Y camp with Niara? Each time Simon chose Kee Tov. It was unclear to us that Simon understood but we didn't have anything else to go on.

Simon ended his time at Y camp on Friday with a sweet send off, lots of hugs and an all camp salute.

Monday arrived and Simon and I are driving to Kee Tov where he'll meet his new camper group and counselors.  I'm telling him how excited I am to be taking him to camp and he's smiling. Then comes the question that breaks my heart. "Will Niara be at camp Kee Tov?"

This is the first time that he's asked a question like this...ever, but not the first time that this topic has come up. Remember just a few sentences back when I told you, dear reader, that we'd very gently but clearly asked Simon to choose?  Each time, we tried to explain that Kee Tov meant no Niara or DJ or so and so. We put it in positive terms, we put it in negative terms, I used hand gestures, I thought I was clear. Still, until this very moment, it was clear to me that Simon had not understood.  The question and connection had to come from him.

I said "No my love, Niara is going to be at Y camp and you are going to be at Camp Kee Tov."

He was quiet.

When we got to drop off, Simon still hadn't said much and even when we met his counselors and unit head there was something missing. Folks from last summer were thrilled to see him, his counselors were very thoughtful and listened closely as I gave the 'Simon Spiel' but as I walked away the Boy did something that I have never seen before.  

He followed me.

If you know him or have read this blog at all, you know this is not typical. Simon has really never shown any separation anxiety (or stranger anxiety either). He plows headfirst into most new situations especially if he has the attention of interested/caring grown ups.  I chalked it up to the chaos that accompanies any first day of camp and got him hooked into a game of GaGa.  There were no tears, no pulling at my hand not to go, and I even got a weird kiss goodbye.

I left with a sinking feeling right alongside a hopeful feeling that things would be all right. This was after all, an exceptional camp with exceptional people and we had had an exceptional summer last year.

No calls during the day kept that feeling of hope going right up until Simon stepped off the bus at 3:45. He looked fine but wasn't smiling. He wouldn't answer any questions about how the day went and got really agitated by the 3rd attempt on my part to find out even a little of what the days activities had been. By 5pm it was clear that it had been a really hard day-his ABA therapist called to discuss her surprise at Simon's angry behavior at camp.

The short of the rest of the story is that Simon is back at Y camp. Niara and Simon are back together. Jaime and I are learning more and more about our son and how consistency is key.

The long of it is, connection is what I want most for him but that's just me. He will have a lifetime of camps, schools, people who can meet him where he's at, affinities that will serve him, some that won't, love in his life that will be unconditional and loves that will come with conditions that he can or can't meet, maybe some relationships that will last longer than expected or wanted, some that won't, and summers that will be filled with swimming, field trips, and hopefully Niara and many more like her.

The two hours that I spent on phone last night frenetically brokering refunds and reregistrations are totally worth it when I see Simon's eyes light up as we head upstairs to the sign in at the Y. After a quick kiss goodbye he is off and running, feeling home.

Summer Lovin'

Cheering/Chillin' at the A's game

Family Time!

Nothing like Cousins!

Pontoon Boat fun!

Mom! I can totally drive this thing.

Ok then.

 Just like his Mommy!

BFF's at play 

I just love these next two. She is wailing on him and he loves it!

Fallen asleep on the way home from a field trip.

Sweet sweet summer time.