Occupied

My brain and my Facebook page have been completely occupied by the incredible things happening around the country and around the world.  I can't help but talk about it here, even though I know it's a little off topic from what we usually write about.

*Rant warning*

Despite what the media would have you believe, the "Occupy" movement is not just a bunch of bratty anarchists making messes in parks. This movement is organized, it's strong and there *is* a united message. The message is...things aren't fair and we, the 99%, are tired of it.

A huge, organized group of people are tired of barely holding it together financially and paying dues while the top 1% (including corporations that evidently are "people") pays about half the taxes the rest of us do. Human beings are tired of getting kicked out of their houses after falling prey to predatory loans and being kicked out by banks that were granted a second chance and help from the government. One of the chants was "They got bailed out, we got sold out". Amen.

It's about the systematic segregation of people into races and classes that is designed to keep people in their categories and keep some down and some up. This is about middle class families like mine, who played by the rules of the 1% and went to fancy schools and supported ourselves just like they wanted and were doing a pretty damn good job of it until a terrible diagnosis and now can't make it on our own anymore. It's full of parents like ours who never imagined that they would be helping their master's educated adult children financially for an indefinite period of time, just so they wouldn't go bankrupt.


This sign pretty much sums it up for me.

I spent from 9 a.m. until 7 p.m. in the middle of things in downtown Oakland at the General Strike on November 2nd. Laura and Simon came with me in the morning, then left for an appointment and then they came back with my Mom (who drove an hour just to be part of things!) and we stayed until the evening.  We went to show our support for and participate in the deep system change we hope is happening in this country. It was beautiful. 

When I came to work on Thursday, a coworker was horrified that we'd taken Simon, fearing for his safety. It broke my heart. It was clear that all she'd heard about the Occupy Oakland was the crap from the corporate media about the 1% of the 99% who were acting like jerks. I wish she'd been there to experience this...

All the barriers that keep us separated in our daily lives- class, race, age, sex, all of it came tumbling down for me for that day.  I had long, heartfelt conversations with people I would have thought I had nothing in common with the day before.  Rico, a working class African American man in his 50's on a bike reminisced about when people could actually support a family on the $2.50 minimum wage.  Brian, a Latino Dad in his 30's who moved to a fancy neighborhood for better schools talked about wanting all kids to get the kind of education his kids are getting and not wanting to have to sacrifice being around people that look like him to get it.  A Muslim professor at the Graduate Theological Union in Berkeley talked with me about the link between spirituality and taking care of the environment. An African American woman in her 50's who worked for AC Transit looked at my sign and said, "Amen" and gave me a hug. 

The space outside City Hall became a living example of human beings in their natural state. People were connected, united, working together. In a tangible way, not just "let's sit around and hold hands and pray for world peace" (props to those folks too, by the way- they were there too). There were tents for free medical care, a library tent, a media tent, a chill out/crowd overwhelm tent, a children's tent with tons of donated toys, so much infrastructure that just popped up to meet the needs of the people. All for free. People and businesses donated TONS of food and refused any kind of monetary donation in return.  There is a nightly General Assembly with a formal decision making process to get input and votes from *thousands* of people at the same time.  If I hadn't seen it with my own eyes, I wouldn't have believed it was possible.

Dia De Los Muertos altar

Guerilla gardening in the City planters

One of the formal stations at the camp



To anyone who thinks this is a bunch of anarchists, I present this.



People sharing their stories

The thing is, it didn't feel like a bunch of hippies at a love-in (no disrespect to hippies).  It felt like THE PEOPLE. There were old people, young people, black people, brown people, parents, people in suits, women in head scarves and women in tarty little outfits.  Buddhists meditating in a circle on the ground.  A Dia De Los Muertos altar.  A "Tell Your story" booth. There were middle class people sitting next to down and out people on benches and they were TALKING to each other.

At one point right before the big march to the Port of Oakand, the crowd swelled to probably 10,000 people.  I had a moment of panic thinking about what would happen if the police came at that moment, of the pandimonium that would ensue.  I wondered if people would get trampled, if I would die.  And then I realized that if things got crazy, I would stop to pick up the person on the ground in front of me and someone would come to get me.  I had people and people had me.

It was pretty monumental.

I wasn't just there to represent me and my family.  I was also there as a public health worker.  The huge and growing gap between the rich and the poor in the U.S.  is a public health issue.  Countries that have the biggest disparity between the richest and the poorest also have the worst health outcomes overall.  Here is where we fall with regard to economic disparities:

Now, the graph below shows the correlation between economic inequality (basically what the table above shows us- the gap between the rich and the poor) and health and social problems like drugs and violence to health problems like obesity and mental illness.  The chart shows that the bigger the gap, the more social and health problems the ENTIRE society has.  Having poor social and health outcomes at the levels we have them affects everyone.

When I first looked at this, I couldn't even find the U.S. It's that outlier, WAAAAYYY up in the top right corner.  Where the really screwed countries hang out.

What this tells me, in the most concrete and basic terms, is that the system we have in place in the U.S. is not good for ANYONE and it's making us sick.  Separate and apart from the personal struggle our little family is having, the way things are set up is bad for all of us. 

On Wednesday, I got a glimpse of what I'd like to think we're leaving to our children. People who actually give a shit and are willing to work together to make things better.

I think this thing could actually happen, you guys.  I really do.

I'll leave you with this sign from the Children's Tent. 

Doesn't get much more simple than this, right?

The Secret

Someone going through a hard time in their marriage recently asked me, “Do you ever feel like you and Laura are barely holding it together? If not, what's your secret??”

A little guiltily, but without hesitation, my answer to the first question was no.  It was sort of strange to answer no to that question because I am a child of divorce, I never thought I wanted to get married and I never thought I wanted kids. That said, I have never had doubts about whether Laura and I will make it.  It still sort of trips me out.

My answer to the second question is kind of simple.

Laura and I get time together.
Regularly.
Without Simon.

And we do this by maximizing the resources available to us.

Laura and I have an incredible amount of resources. We both have families that not only accept our relationship, but cherish it and do everything possible to help it succeed. They have never made us individually or as a couple feel like we are “other”. As a queer couple, that sometimes feels like a freaking miracle. Because we grew up loved and supported, we are both comfortable being totally out as a queer couple, wherever we go. This seems like a little thing, but it actually allows us to live a full and happy life and go and do things freely as a family without the threat of "discovery" hanging over us.

Our parents give us time and they give us money and they give us listening ears. They help us keep it together. We have a close knit group of friends who love Simon like he’s their own. They watch him so we can get breaks, cook us food, make us laugh and show us buckets full of love. I have a fantastic boss who has the same values that I have about work/life balance.

This weekend, Laura and I made a decision to leave Simon at a medical facility with strangers so that we could have time alone to celebrate 6 years of marriage. We didn’t have to do this. We could have chosen to once again ask our devoted friends and family members to watch him. We could have chosen to not do anything to mark our anniversary. We could have chosen to just go out to dinner. But we didn’t. We decided to use the resources being offered to us (free respite care at the George Mark Children's House). And like most things in life, it was hard and it was good.

We arrived at the George Mark House on Friday night at about 6:30 p.m. It was pretty quiet, with staff  and one of the young people staying there (a very sweet 20 year old young woman) hanging at the nurses’ station.  After we got our bags settled in the Jungle Safari room and before we got to go swimming, we had to do a little intake process.

Like, with a nurse with a stethoscope and blood pressure machine. Like, because we were in an actual medical facility. Not a hotel. Riiiiiiight.

Simon was NOT happy about this. I ended up holding him on my lap, having him count as high as he could in three languages to get through the process. We never did get a blood pressure. By the end, he was a sweaty mess. We were a little rattled. I think we conveniently forgot that the whole reason we could blithely leave him here without lots of training of the people taking care of him was because he would be under the care of medical providers.

After that bump, we did the only logical thing to do. We went SWIMMING! They have a great 12 person hot tub that is set at about 90 degrees and lots of toys so we took a little dip before bed time. We could definitely get used to that!

We did bedtime with Simon in the Safari room

Then went into the main playroom/TV room to wait for him to fall asleep. A Dad of one of the kids that was there was in the room and he left as soon as we came in. It all felt a little awkward, being in other people’s space, having people in our space, being in a place that sometimes felt like a mansion and sometimes felt like a hospital. It was just weird. Good mostly, but definitely weird.

After a quiet night (save for Laura's head cold snuffling), Simon woke up at 7:30 a.m. and wanted to go to the playroom. We walked out to the nurses’ station and I coached Simon to ask for his food and meds, thinking they’d just hand everything over to me and that I’d do it. Instead, the nurse, whom we had not met before, told me she’d bring it to us. “Awesome”, I thought, because I wouldn’t have to measure everything out and draw all his meds. Someone else would do it for us!

An hour and a half later, we were still waiting. Not so awesome. I forgot. We were back in the medical world where you are at the mercy of other people for conveniences. You can’t just do what you want to do when you want to do it. And the day shift nurses are usually total hard-asses compared to the night nurses. This clearly held true for George Mark too. She was nice enough, but had that steely crispness and rigorous adherence to protocol that was welcome when Simon was super sick but really a pain in the ass when we’ve been living independently for almost 3 years.

After he got his food and meds, volunteers started showing up to help with the 4 kids that were staying and also to be part of a big Halloween event. At one point, two volunteers were playing with Simon and Laura and I realized that we could actually just chill out and snuggle on the couch. I forgot that sometimes families stay there for the respite care and just have extra hands there to help with whatever needs to be done. It was amazing.

Simon, scoping out the pumpkins

Our friend Lilian and her two kids came to visit.  We mostly avoided the crowds and played on the play structure, the wagons and the big play room. At one point though, Laura ran into a family that she recognized from our lengthy stay at Children's Hospital.  When Laura asked if their daughter was there today, they quietly replied that she had passed away.  Then her grandmother proclaimed that she would give her right boob for Simon's eyes.  The left one too, she added, if it came to it.  We're a hearty lot, us families who walk in the shadows...

Simon gazing adoringly at friend Ardalon who came to visit

After another dip in the pool, Laura and I decided it was time to head out on our Anniversary date. Time to leave our little boy in the hands of strangers and in the company of 3 kids that were also sick/disabled enough to be at George Mark. WHAT?

But we did it. And just as we were leaving, Kevin, the security guard, caught a little lizard for Simon in one of the rooms.  We walked out together, they let the "baby dragon" go free on the beautiful grounds and we were free to go celebrate.

Baby Dragon liberated by Simon

We went to check in the Hotel Nikko in San Francisco (Laura scored on Priceline) and walked down to Union Square.

Us, getting a little exercise on our night out.

We had a mediocre dinner at Roots (but with a coupon, so who cares!). Our room was nice enough, but the view was SPECTACULAR.

Nighttime view from our bed

The next morning, we decided to go to the Claremont for their insanely expensive buffet brunch. It was worth every penny. We sat for 2 ½ hours, ate ourselves silly, looked at the beautiful scenery and read stupid magazines. It was heavenly. Battery charging. Totally extravagant. And absolutely perfect.

The Claremont Hotel

On the veranda of the Claremont

We did a quick errand and then we headed back to pick up Simon. He barely even looked up when we came in, he was so busy playing with a volunteer. 

Ready to rock it

We were having a sweet little reunion, asking the volunteer how things went, giving Simon hugs and kisses. I noticed a sibling of one of the kids who was at George Mark was in the playroom with us and I casually said “Hey I saw your family packing up in the parking lot. Are you going home?” thinking that they’d be heading home for the week and maybe one parent would stay with the child that was here.

My brother died yesterday”, he replied, in a matter of fact way.

SCREEEEEEEEEEEEEEEECH.

Right. This is also a HOSPICE. Kids come here to die, not just to swim and play with nice ladies and have access to unlimited toys while their parents are off being frivolous. Families come here to be with each other while a child takes their last breaths.

It was so discordant, to be coming back from a leisurely 24 hours to hug a little boy whose brother died in the room 2 doors down from where Simon had been playing all weekend.

And worth it. 

Here's my secret.

We cobble together what we have, whether they are big bountiful gifts or complicated hard gifts and put them all together to make a marriage.

The herd of sheep clearing grass up the hill from the George Mark House.  Simon was obsessed with meeting the "farmer"-really the sheep herder in the orange hat.

Saying goodbye to staff as we left

Reunited and it feels so good!

Thanks for playing with me so much, Eileen!

Anniversary flowers from my Dad

We came home to this card. Robin Winokur is Simon's pediatrician and an on-call doc for George Mark.  Seriously. Amazing.

We Walk

Sometimes we walk invisible among the living. It's not as if we're not living. We're just 'living with'. We blend really well these days with Simon walking and talking. Fewer meds, more food play, greater stamina and energy from the little man means that until I whip out the feeding tube or med syringes or tell someone that 'no he's actually 3.5 years old just small and a little language delayed' there's nothing that extraordinary about us. Except for those blue eyes and disarming charming personality, Simon walks among us mere mortals and doesn't really stand out in those unthinkable ways.

Sometimes we walk among the other folk. The families that 'live with...'.
 Families that live with chronic, life threatening illnesses. Families that live with hospital stay after hospital stay. Medical equipment. Syringes in the house. Medication after medication. Speech and language delays. Developmental delays. Systems, medical, educational, health insurance, co-pays, hold-ups, in-network/out of network transitions and fights. Diagnosis, no diagnosis. Relapses, remissions, and just waiting for the next bit of news....

We are one of those families and though I walk among the simply living a lot of the time, I'm never quite able to forget that I'm one of the other, living with....

This weekend we will walk among the other. We will carve pumpkins and paint our faces. We will enjoy the pool and playrooms. We will dine among those tube fed and not, and we will leave Simon for the 2nd night to be cared for by 'round the clock nurses and on-call dr's.

In just a few hours we will start our orientation 48 hour stay at The George Mark House for Children.
Saturday is the Halloween Festival and we've been told that there will be a number of young children there this weekend so Simon will have lots of company.  It's our first overnight utilizing the provided respite care that we qualified for a couple of months ago. There is a two night minimum and since it's Simon's first time, we are required to stay the first 24 hours with him before he gets to go rogue.

I'm so excited for him to get to spend time there since he loved visiting and talked about it for days AND completely freaked out at the thought of leaving him there (even if only for 18 or so hours). I'm so glad to hear that there will be a full house AND am wondering at my own reaction to the immersion experience.
We haven't been around so many folks 'living with' since our amazing weekend at the Camp Taylor Family Camp that we went to two years ago May. I remember that feeling of being around 'my people'. I suspect that it will be a lot like that except there's this fear thing too.

I'm scared to be around 'sick' kids. I'm scared to see where we might be again someday. I'm scared to have that scar rubbed or mirrored back to me. I'm scared to be forced to identify with kids that might be "really" sick.
It's fucked up. I know it is. I feel embarrassed writing it and it's not rational or logical. There might be more kids that are like Simon and hide their chronic life threatening illness like we do than not. And, there might be kids that are more obvious in their 'living with'. I know there will be parents and caregivers there that are dealing with their situations so much better than the Fitch-Jenett's and likely some that are struggling in ways that I cannot even fathom.

Either way, I have faith that I will be present and enjoy each moment and meeting and connection made. More than anything right now it's the knowing and anticipating walking into the nest. Bee's nest, hornets nest, whatever you want to call it. It's that internal nest of mine that right now I am wondering how much will be disturbed, triggered, and troubled.

Mostly I think we'll have a spectacular time though. Simon has been talking about it for a few days now (recalling our visit from over a month ago!). I'm also looking forward to celebrating my wedding anniversary with Jaime without whom none of this would be as a spectacular journey as it has been. I heart you woman (pun intended).

Bring on the pumpkin party!!

Pictures coming soon.  Here are a few from the last couple of weeks including Abby & Bianca's wedding at the Oz Farm in Mendocino.

With G'Pa at the Diabetes Walk in San Jose

 Walking with G'Pa and GG

 Arriving at the OZ Farm with his fox hat all ready to rough it

 Walking the Farm, crossing the Garcia River

 "I looove the Oz Farm!!"

 maxin' and relaxin'

 Sharing some treats with Tovah

Strolling with Mikey

Simon loves him some big Mike

 Who doesn't love watching movies in a barn loft?

 Watchin' the roosters and hens with Jonah

 Simon in the garden at the Oz farm.

The Devotion Project

Devotion: fact or state of being ardently dedicated and loyal.(def. Merriam Webster):

This weekend, Laura and I had a Skype session with a film maker named Tony Osso. He is a professional film maker who is doing a side project called "The Devotion Project" which is a series of short documentary portraits of LGBT couples, examining and celebrating their commitment and devotion. The first film in the series, "More Than Ever", won the Audience Award for Best Short at Newfest: the New York LGBT Film Festival. It's an incredibly sweet love story of two men in their mid-80's who have been together since meeting in World War 2. Watch it.

He's considering doing a piece on us.The exhibitionist in me is delighted at the prospect of us getting to tell our story on film. But I'm also a little nervous about being part of this project mostly because I don't want ever, in any aspect of my life, to be seen as an impostor. It’s sort of my core issue.

I'm afraid that our relationship to each other and to Simon will be somehow appear one-dimensional, airbrushed, too good-to-be-true and somehow holier-than-thou. This comes up sometimes with the blog. This weekend, someone affirmed me for the posts I occasionally write about how much I appreciate Laura. The person recounted a recent conversation with her wife where she said, “SEE? See what Jaime writes about Laura? I want you to do that for me!”

I was flattered and terrified. Yes, I write sweet nothings for Laura in public places and even say them to her face. But really, not that often. The reality is that I'm not a perfect, ever-adoring wife. Devoted? Yes. Consistently adoring? Um… I can safely say we are happily married. Most of the time.

Sometimes, though, we are rude to each other. (To be totally truthful, 90% of the time, it's me being rude to her). We raise our voices at Simon. We have days when we really don't like each other. Days when our most fervent desire is that our beloved take a long walk off a short pier. Sometimes I don't do something that needs to get done around the house because I know if I leave it long enough, Laura will do it. Laura would rather pluck out her own nose hairs than sweep the floor and some days that makes me want to leave a nasty, hairy, nail-clipping-filled dust bunny on her pillow. Sometimes Laura holds onto being mad longer than is reasonable and some days I freak out on her for just breathing my air. Sometimes she wants me to apologize and I know I owe her one but I just plain can’t, if I’m going to really mean it. So some days she just has to wait to get her well-deserved apology.

This is kind of what a devoted relationship looks like, right?

When you first commit to someone, when you have just pledged your undying devotion, or to do the best you can to show up every day, in front of lots of people or just a few, after a few weeks or a few months, something happens. The day comes when you realize that the thing your precious love just did that makes your blood pressure skyrocket is the thing you're going to be living with for the long haul. Or that you really WERE just a total asshole but you’re so mad about being called out on it that you can’t back down.  And they're going to call you out on that same thing for the next 30 years.

Around that time, you realize that this is just the beginning. You are building the landscape of your marriage.  The fights you have early are the fights you're going to have over the coming decades. There are going to be pits hidden over with foliage and little hidden treasures under piles of dog crap and sometimes a big ass landmine.  Sometimes you're going to get through peacefully, holding hands, saying "Well, wasn't that a lovely journey!" Sometimes you're going to get your eardrums burst and dirt in your eyes. 

The thing is, if you're going to make it to the finish line together, once the adrenaline gets reabsorbed, heart rates come down, and wounds are cleaned, someone has to reach their hand out to the other person.  And the other has to take it.

It’s that reaching out that demonstrates devotion to me. It’s the commitment to connect and re-connect, even when it’s loud and busy and you can barely find each other through the mountains of toys and hurt feelings and bills and pretty shiny other people. It’s going on the search for that love, with that person, again and again, that is that most holy act of ardent dedication and loyalty.

A New Year Starts Normal

Tonight starts the celebration of the Jewish New Year. We eat apples and honey to start it off sweet and pray for that to continue.

Simon started it off with a visit to Cardiology.

And it was sweet.

Momentous even.

Simon got through his EKG and Echo with an even greater maturity than last time. He only started saying "I'm finished" just a few minutes before we actually were. He gave Sarai (the echo tech) a beautiful hug afterwards and only told about a million people that he was looking for Dr Rosenfeld to say "Hellllloo!!"
After a nice long wait, quality time spent with the puffer fish in the aquarium, Rosenfeld comes in, gets high fives, and starts:

Simon's echo looks really good. His shortening fraction (SF) is up to 29 and his ejection fraction (EF) is up to 50. He'd like to stop giving him baby aspirin, and discontinue Digoxin, and why don't we go from 3 doses of Lasix down to just 2.

I'm trying not to pee my pants and take it all in.
I know those numbers. They have significance. What is it....? Oh yeah, I remember THEY'RE IN THE NORMAL RANGE!!!

Simon's heart is functioning in the normal range. NORMAL.
WTF.
 (forget initials) WHAT THE FUCK?!
We're taking him off meds. Those are the specific meds that support function and he doesn't need that because HIS FUNCTION IS IN THE NORMAL RANGE!

Of course I'm scared. Of course I'm wondering where the heck this man got his quack medical degree (Harvard). But I'm also feeling a million pounds lighter and so freaking proud of my son. He's done it. He's taken his sweet 3 year time but he's done it. He's given himself the gift of normalcy and we can only hope/assume that this will be the only arena that such a thing will occur.

But holy shit, dear family, friends, and wonderful reader, we are celebrating over here.

It doesn't really change our day to day.
And, there's not much sweeter than this normal.
Shanah Tova, a Shanah Tova to you all.

Brutiful

Jaime:
Yesterday we went to the George Mark Children's House for a preliminary visit as we prepare to have Simon stay there for respite care.  It is the first and currently only, freestanding residential pediatric palliative care facility in the U.S. It's kinda magical.  Simon qualifies for 10 days per calendar year for respite care for us, including overnights.

We walked through much of the tour with tears streaming down our faces.  It was the first time I have ever really felt like I have seen the tangible realization of someone's dream.  The people that designed this place KNOW what we need, what will soothe broken hearts and frayed nerves,  allay fears and free up laughter.

The building is light and airy with views of the garden out of every window.

Every child's room has a theme (safari, RR crossing, etc) and a beautiful mural on the wall done by a volunteer.  The zoo brings animals every week.  Before it died, a camel used to come INTO the House to visit children. There are nurses and CNA's on site 24/7 and a physician on call. There is a big play room, an arts and crafts room, a small pool for a therapist to work with children in the water.


There is also a suite for families who are staying there for palliative (end of life) care and a special room for families to say goodbye to their children as they die. With a crib that is, essentially, a heating bed, to give families more time to say goodbye before a coroner has to come.  Laura had to step into the bathroom to cry for a minute when we learned about that feature.  It is my fervent desire never to use that room for it's intended purpose and I think it's brilliant.


There is a beautiful chapel in a simple, Quaker-like style.

And there is a fountain outside filled with stones with the name and year of every child that has been to the House who has died. 

It is a most amazing and grim place for families like ours that walk in the shadows of death and disease. I'm so excited for us to have a beautiful, loving, fun place for Simon to stay, for free, so we can have some time without worrying and I can't forget that this is the place that I researched the weekend it looked like Simon was dying.  


I can't quite wrap my brain around it.  


It is, as my friend  says, "brutiful".

I also can't quite settle in to the idea of leaving him overnight in an INSTITUTION. As I said to Laura, it feels a bit like a pig in a dress (no offense to piggies- I love them). Yes, it's this beautiful, warm, love filled place, but it's still a medical facility with oxygen hook ups in every room and nurses watching over him at night. I know we'll get over it and utilize the services but I think it's going to break my heart a little.

Meeting one of the children that was there when we visited was really hard. He is a teenager who recently had an injury that deprived him of oxygen. He's this totally handsome, healthy looking guy who can now only open his eyes. That's it. He's on a ventilator and spends his days in a reclined wheelchair. Seeing him next to Simon running around, chatting and playing, it was was really hard to reconcile how they both qualify for services there. It feels like we're somehow taking advantage of the system or something. Simon is not SO disabled, he's not SO hard to care for medically, he looks SO good, we should leave the services for a family that *really* needs them. And then I remember that the last time we tried to go away for an overnight, we ended up coordinating 10 people to make it possible.

Almost from the minute I walked through the doors, I decided that if I am ever going to do fundraising for anything, it will be for George Mark House. It provides services that we all pray that we will NEVER need in a clean, beautiful, love-filled environment. I feel like it's radical that it even exists. This nation spends millions of dollars to avoid death and pretending like it's not coming, until the bitter end. Our old and our sick die in less than ideal conditions in hospitals every day.

Getting to say goodbye to a child in a place like this instead of a noisy, crowded, public, stressful ICU is probably the biggest contradiction I can think of to this cultural obsession with cheating death even when it is staring us plainly in the face. The House gets reimbursed somewhat now through Medi-Cal but gets no reimbursement from the type of respite services that they're offering us. If you know anyone with deep pockets, please let them know about this amazing resource. They can find out more about donating here.

Laura:


I don't think it hit me until we were 15-20 minutes into our tour.


The George Mark House for Children is a lot like a spectacular resort for young people. From months old to late adolescence, they haven't missed a thing. Toys, TVs, a nice size hot tub/mini pool. light, green growing things, climbing things, swinging things,visits from furry things, tasty things...it's all there.
And then you remember why it's all there. To provide a little bit of joy in a mammoth time of sorrow. Whether it's for an end of life situation or simply some respite in a life of consistent traumas, it's not a vacation. That's not why you go to GMH. You go for respite from your daily life, you go to say goodbye, and you go there because everything else (but why you've gone) is completely taken care of for you. They feed you, literally, spiritually, recreationally. It's amazing.


So, we're getting our tour and the social worker in me is marvelling at what they've set up and thinking how I'd really love to work here someday. I'm thinking that it would be such a good fit for me when I decide to go back to work given my love and experience working with children. I think how much I might have to offer not only the kids but certainly their parents as well.


Then it hits me.


I am those parents. Jaime and I are here as those parents. Our son qualifies for the level of respite care provided here. We are here because someone looked over Simon's history, and current status and sees him/us needing some respite care and the George Mark House for Children is a good fit.  


I'm still seeing the amazingness of the place, the resources gathered, only now I'm feeling that strange parallel universe thing when you see one thing, feel another, and the two don't jive but you know they are both true.


Simon is skipping along, charming the staff, loving the jungle themed room, begging to get into the hot tub, fist pumping "go George Mark!" and I am not believing and knowing at the same time that this is a place that he will come to, spend the night, and be well cared for.


This place where some families come to say goodbye to their children. This place where right now there are only two guests, one of whom is in an isolation room and the other who sits with his father in front of the 72 inch plasma screen in his wheel chair, ventilator pumping air into his lungs, colostomy bag half full, not seeing the football game or even moving when Simon pulls on his hair in greeting.


Somehow, the child that is hitting a most typical toddler stage, where 'no' is his favorite word, and passive resistance/dead weight is his favorite activity, who never seems to stop talking or changing or charming, somehow this child o' mine fits right in here. He will have his picture up on the wall and we will come for events and fundraisers. He will have his favorite room and nurses and volunteers. He will make this another home.....just a few (10) days a year but still. He has already marked it.  He didn't pee or barf here yet but still. (Most of yesterday afternoon was already punctuated with "I want to go to George Mark). It's his now.


I don't feel it settling just yet. There's a discord.


We are meeting with his teacher on Thursday to discuss how he is doing in his class; whether or not it's still appropriate for him and/or we need to look for other ways to keep him challenged.  He is hitting a most typical 3 year old phase where he's testing, pushing limits, and asserting himself. His language his play, his discovering the world....it's all moving at light speeds.
His heart is stable, growing stronger, and he's moving through kid bugs as smoothly as possible. He's strong. He's starting to run (like a drunken sailor but it's still running) and jump, and hang from bars. It's beautiful to watch.


And Simon qualifies for the George Mark House for Children. He has a critical heart condition. He takes 7 meds in the morning, one in the middle of the day, and 5 at night. He is dependent on a pump and surgically placed gastronomy tube for nutrition, and attends a special education class along with Speech Therapy, Occupational Therapy, Physical Therapy, and Feeding therapy once or twice a week. He will be at risk for congestive heart failure for the rest of his life and currently has mild decreased heart function (although we'll see where we're at this Wednesday with our regular Cardiology Visit with Dr. HunkyPants- fingers crossed).


He also just traveled to Boston, has a new love for Zebras, can name at least 4 Dim Sum dishes, and knows how to count to 100. He loves construction workers and sometimes pretends to be any one of his three main Dr's (I have to get a little excited when he says "I'm Dr Rosenfeld!" cuz who doesn't want their child to grow up to be a Cardiologist- insert stereotypical Jewish mother tone here).


It's all true. Somehow the pieces all come together to make this most beautiful mosaic I like to call Simon Lev. When I take a step back, which isn't often because the here and now require a lot of attention, I can see it. But, when I'm faced with such discord in the same place, I don't know how to hold it.


And maybe that's it. It's not mine to hold. It's there, but I don't have to hold it. Kinda like parenting I think. Your Children are not your Children, they are the sons and the daughters of life's longing for itself. They come through you but they are not from you and though they are with you they belong not to you. 


I think for those of us with kids that got a little something extra going on, the lesson is just a little more in your face.  It's that surrender feeling. I surrender to this life that Simon is living. That doesn't mean that I won't remain ferocious in working to make it the best life possible. Ack, double negative.  Let me put that in the positive.


I will remain diligent, ferocious even, in working to make Simon's life as spectacular and meaningful as possible AND I surrender to the life that keeps coming his way.


I love my family. I love my community. My wife is amazing. My son is incredible. Cardiomyopathy sucks, and Simon is back to napping. Goooooo George Mark!!


Spreading the love:

With Ati and Ardalon in the bounce house

Reunited with Mamaw (and it feels so good)

One of Simon's man-crushes- Satish