Faking it

Sometimes I feel normal. I send my kid off to pre-school, watch him play at the park, help him learn how to share and take turns, go out for dinner and apologize for all the food on the floor. We've been to a protest rally, a wedding, and trick or treating all within a month.

I work on my relationship with my partner. We have date night. She brings home the bacon and I watch how we spend it. Simon is growing. Jaime and I are loving each other. We are a family in process. It sometimes feel normal.

And in those moments I feel awful. Like a fake. Really split into two people. It's an amazing feeling to have gotten to this place given where we've come from. AND I feel almost ashamed of it. The help that we've received, the path that Simon's disease has gone, it's not that I don't want it but more than a little bit "I can't believe that we've been this fortunate when there are so many others that are not."

And it's not the amorphous "other". It's families that we know, that we see all the time. I remember feeling it each time we hung out with families that had typical, healthy, babies. I wanted 'that' kid. Not one different from Simon but I wanted Simon to be that kid.  There are days/ hours when he almost feels like that kid now and I don't quite know what to do with myself. Who am I if not the mom of a medically fragile, immuno-compromised child, whose life is full of medical and therapy appointments? What does that make me?
And who the fuck am I to even whine just a little about losing that piece of my identity that so many other parents would give up in a heartbeat.

And still, Simon will live with Cardiomyopathy for the rest of his life, hopefully the way he is living and thriving along side of it right now. But, what and who does that make me?

I was telling Jaime that come this March, I will not have 'worked' for 4 years. That's a long time to not do something that I've done since I was 13 and started restocking candy at Tom's Stationary store just up the street from our apartment in the Bronx.

There's the me that has been so focused on Simon, and doing everything in my power to give him all the chances at getting better. I have been eagle eye focused for almost 4 years now.  I got as prepped as I could for labor and delivery, I cared for a newborn, I sat vigil while he fought for his life in the ICU, I learned to draw his meds and work out tummy time in the hospital, I went to appointment after appointment after appointment. I talked and talked out loud until I thought the sound of my own voice might drive me nuts trying to work on language delays. I massaged feet and calves to stimulate blood flow to get him crawling then walking. I cleaned up barf.
I cleaned up so much barf.

I gave meds, tube feedings, more meds and then some tube feedings.

Then I cleaned up some barf.

I know there's something along the lines of what I'm talking about for most typical parents too AND it's a little different when you've got a kid with something a little extra going on. This is the "what will I do now that my kid is off to pre-school/college" plus a whole lot more.

Where's my "Housewives of Medically Fragile Kids Who Then Get Better"  reality show?
And what about this whole complaining bullshit? I know I am blessed. I know there are moms and dads out there that would give their left whatevers to have come to where we are with the support we have.

 Jaime called it. I have survivors guilt. It doesn't do me any good. It doesn't serve anyone.

And I have it.

For all the families that have lost Littles... For all the families whose lives are infinitely harder and do not come with built in networks of support... For those families that have children that do not have the option of having such an upswing....

It's similar to the first time that I really felt my privilege as white person. I got schooled for saying "I don't want it." That's a lie I could tell myself to feel better about it. But what's really true about it is, I do. I don't want to be treated less than. No one does. What I do want is for everyone to have it and that's not the case right now. White Privilege is systemic and while I may not have enough power or privilege to change institutionalized racism all by myself, my work is to keep recognizing places where it shows up for me and not others and work on what I can to change that.  I know there's all kinds of privilege and oppression. I'm just talking about this one and just my experience.

This new-age-of-Simon kind of privilege is a little different. I can clearly say that I want it. I want Simon to have the privilege of thriving as he is today but there is no system for me to work to dismantle that doesn't offer the same chance to so many others. It's 'luck' or 'providence' or 'God'- whatever you want to call it. It's not based on merit, or skin color, or $$ in the bank. It's just how the waves keep coming and right now it's one that is taking this family on a sweet sweet ride.

It's like when Anina passed. I didn't know what do to with myself.

That's how I felt the other day walking down the street. Simon was in school, I had time to myself, no one could look at me and see me as the mother of a kid with cardiomyopathy and then...I thought 'I almost can't see me as the mom of a kid with cardiomyopathy'.

That was weird.

For so many reasons (since I was only an hour away from giving a medication and tube feeding)....but I felt it.

There is so much going on right now, in terms of struggle and working for justice. It feels strange to be moving a little further from my own struggle. But then, it is almost Thanksgiving so I will up the ante on the amount of thanks I put out there.

 We've come so far from the ICU, even from those months and months of several therapies and medical appointments every week. It's a separation. It's not exactly painful but it's change. I'm a Taurus. Most change is hard for me. As spectacular as the specifics are...it's still change.

Riding the wave.

Moses and Simon are starting a new band

Band love

Hugging Mommy before her annual dip in the Ocean

Scuba man

Wonderful Family at the Celebration of Life Dinner

Trumpets are nice but drums are where it's at man

 

I like the ending on this one

and when he stands up and kicks his stool back on this one

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.