Tis the Season- for pictures

Let's fight the cold with some fried starch

 So dainty

 Umm ummm ummmmm

One man band

Getting fancy for a Holiday Party 

Forget about lighting the Menorah, I just want to eat it.

Cute Gingerbread House- Cute Kid

Working on my Pepitas shingling

A day later it's time to eat the dang thing

Mmmm Tasty

 Ok, if there's anyone in there...you might want to vacate

He's not on the Fence, he's eating it.

Deeelish

I love you Gingerbread House

I love you so much I want to eat you!

...and last but not least

http://youtu.be/Q16HgIT6tTs

Dear Jaime

Dear Jaime (because I know you like it in public)

I love parenting with you. I love going through hard things with you. I don't love going through hard things but I love knowing that you and I will do it together. Your hard things, my hard things, our family's hard things. I love how you take care. You love Simon, taking such good care around him, of him. I love that you take care of me when I need it- like last night with a migraine. You take care of yourself, rising at ungraceful hours to get yourself to heart pumping places, sometimes at the gym but sometimes with our dog, pulling her up and down steps (we have the only dog that does the stair master) outside in the receding dark of morning. I love that you love to cook and we all benefit from recipes researched and replicated. I love it all.

Really.

I love it all.

Even the inevitable Saturday kerfuffle that we have, because we're both trying to quickly manage the distinct rhythm change that the weekend brings. I love the whirlwind changes that the house goes through as you hit new levels of frustration and acceptance around clutter, furniture placement, leftover foods in the fridge, small toy parts to step on, and lack of alone time.

I love the tasty bits and I love the bitter bits because it means that we are complete. We have everything we need to build a spectacular and extra-ordinary family together.  Every piece of it another thread that gets added to the chord. I see it as one of those super heavy mega thick twine ropes that are used to anchor the big ships in place. They are as thick as I am (and I love that you love that too) and I don't mean dumb because you know Smith is still ranked higher than Mt Holyoke- sorry just had to get that in...

 I mean like this

Where you can see each individual thread and how they join and group together to make this amazingly strong multifaceted unit. That's us (and that's the largest rope in the world btw).

 That's you and me and Simon and all the other people and experiences that have made up this time and place for this family, this Fitch-Jenett experience. Like the Jimi Hendrix experience only with a whole different category of drugs and crazy bad and good 'trips'.

But I digress.

This is about how I love you; How thankful I am for you. How I bless Kris Woolery over and over again for making me come out that New Year's eve 2001 and then dragging me along to Harbin Hot Springs the next day, starting 2002 off naked in hot tubs with my future best friends and wife.
I love you for getting dressed to the 9's every morning for work. I love you for emptying the dishwasher. I love you for wanting to go on date nights with me, sometimes double dating with friends, sometimes just the two of us, alone in a movie theater watching Bella give birth (blech).

I love that we are far from perfect. We were at one point I think, for a brief but sweet period of time in-between living 3000 miles apart and head injuries and delightful but high maintenance dogs and kids. We had that time. I think we'll have it again...in a few decades.

 Still, I love this time. Because I get to be with you. You, my partner. The love of my life, the redhead of my dreams, the Mama to my Mommy. Together we got Simon, the perfect boy. Yes, he's great and all (see the last few hundred blog entries) but I want to make sure that you know, that I know, that I have the best partner in all of this and that I love you and me together...as adults....with adult time (whenever we can get it)...

I love you Jaime.

Talk To Me Now

Simon talks a lot. He can finish the sentences in dozens of books. He knows most colors and can correctly identify a hexagon. He can count. He requests different songs from a 50+ play list. He knows a lot of things.

Still...

We sit down this afternoon for our Mid-day meal. It's our regular therapeutic meal and usually the one time a day when I can count on Simon to sit and play with food for at least 10-15 minutes. He's just come home from his Special Day Class and almost always is hungry, asking for different things to 'eat'.  I have his chicken nuggets, a mini, taco, some spicy ketchup, and of course his beloved gherkins and soy sauce, all ready to go. Each of these items have been specifically named and requested by him. We have juice and straws ready to go.

He climbs into his chair all by himself and I am expecting another food play session  just like any other. I strap him in, push his chair close to the table and walk the 10 feet into the kitchen to get his pump and food bag.
Less than 15 seconds later I return to the table and hear "I'm finished. I'm done."
It's not the first time that he's done that; gotten settled only to immediately be done.
It's a little unusual at this time of day especially after asking for such specific and historically favorite treats.
Again "I'm fiiiiiiiineeeeeeshed. I'm doooooooooone."

Of course the feeding therapist in me kicks in and knows that we 'have' to at least get a few bites/licks/swallows in before we leave the table.
I begin the cajoling and bargaining that are also as familiar as the chicken nuggets and gherkins at the table.

I am surprised at how quickly he is moved to tears and begins what seems like truly anguished cries.

I take internal inventory and wonder just how much I should push it.

It's really more like a split second conversation that goes on in my head during which time I am watching my son turn red in the face with tears streaming down and of course come to the realization that it's not worth it.

So I begin the ending-the-table-time ritual of simply kissing or licking our food goodbye. It's something that we always try to do and are usually successful at ending our meal on a high note regardless of how many bites or licks or swallows remain at the table.

Nope. The boy is now almost in hysterics, crying out, pleading with me to me done and we are less than 90 seconds into what is usually a 15 minute lovely food play time. What is going on? I am torn between frustration (another meal opportunity down the drain) and heartbreak at watching my son be so distressed.

And then I see it.
I look down and notice that Simon's right thumb is caught in one of the plastic clip loops on his high chair. It's twisted and red from being pulled at and only caught tighter.

I help him disengage his thumb from the vise and hold him while he cries into my shoulder.

His fucking thumb was caught and hurting him like the dickens.

And he can't tell me because he doesn't have that piece of expressive language. He can't even say "Ow" or "my thumb".

His thumb is red and throbbing and my heart is hurting.

I know years from now I will laugh at how there once was a time when....
Just like I laugh now at the time when we had this boy that didn't say more than two words (Hi and Fish) and look at how he doesn't stop talking for more than two minutes.

Still.

He has a significant language delay. I'm not asking that he say "Um, Mom, my thumb is stuck in this buckle and I can't get it out and the way that I've tried has made it even more stuck. So now it really hurts and if you could help me, that would be great. In addition, Mom, I think that this experience has thrown me enough that I'd really like to take a break before working on my eating so if you could just pause the pump feed, that would be spectacular."

No, I'd just like a simple "help me" or "owwww" or "my thumb". Just 'thumb' and/or 'help' would do.

Aaaaaaaaaaaaaaaaaaaaaaaaaaaaagh. For the boy that has a heart condition with so many possible symptoms, language is key. How he is feeling and able to communicate that is key.
Key. Doesn't even begin to touch how important it feels to know what Simon is feeling. Essential. Core. Necessary. Salient.

I think any parent would relate. Especially during that amazing toddler/pre-school time when they clearly have more thoughts and feelings than they have words for. (I hear for some people this goes on for decades).

When you have a child that has language/developmental/medical concerns this divide is so much harder.

I remember when Simon didn't really talk but had Mama down. It was amazing to watch him get it. I was so excited for him to be able to name Jaime and have her get that feedback. I waited for months before I got my 'Mommy'. The wait was excruciating.

This wait is excruciating. This wait for any sense of pragmatic and expressive language.

Excruciating.

Especially when it involves twisted almost broken digits.
And what I try not to do is go to that heart place. That next level down where it's not just about a thumb caught in a buckle. Where it's a chest pain, or fatigue not just based on a lack of nap. Where it's nausea or shortness of breath that feels different than too much tube feeding all at once or trying to run too fast or hard. Where it's a sweat but not from warm weather or having too many clothes on.

I try not to go there.

Some days I'm more successful than others.

And I just want the kid to say "Help me Mommy" or just "ouch".

And I'll be there.

In a heartbeat.

Walking Between the Raindrops

It comes from an old story about a Rabbi who made a group of witches believe that he could walk between the raindrops. He somehow convinces them that they can too and leads them out into the rain where of course they all die from exposure to that life giving force of nature. I'll leave you all to the expounding on the patriarchal and misogynistic themes in the story (that you haven't read) and instead tell you how I feel like I walk in between the raindrops sometimes.

Thanksgiving is over. The family (mine) has come and gone. Gatherings, caravaning leftover meals, swimming, and brunching has all happened with nary a fatality. I love my family. Loved seeing them. Wish we all lived closer and could see each other regularly.

Still, I am glad at this moment to sit quietly in my home, Simon napping, and only have the curled up tiger stripes of my dog to look at.

I am the parent of a child with special needs. My son is tube fed and has developmental delays. He takes syringes full of medications three times a day and while he's not short on personality or love in any way, he lives with a condition that may or may not limit his growth, his choices, and ultimately is life- it's that kind of condition.

It's almost invisible depending on the time of day. And blessed be for that. He's thriving. He's working on running and building up his stamina. He's hysterical. I mean really funny.

 (his newest phrase when he's heading to tantrumville is "I don't want to be upset." Which is huge in that it's a complete sentence, an 'I' statement, and is expressive. The hysterical piece is that he says it usually one step into crying or having a fit and seems to be talking mostly to himself in that he wants to make another choice in the moment but can't figure out what it is- such a thinker my little mensch is)

My challenge right now is walking between the raindrops. It's raining during parenting a lot. Sometimes it feels like it never lets up really. Gotta grow this kid. For sure there are moments of sunlight, we all need our vitamin D but for me and Simon it's been a lot of getting through the showers (meaning hospital stays, medications, appointments, assessments, milestones, etc). It feels like we're always trying to get to the next thing. The next weigh in. The next age appropriate thing. The next therapist/therapy.

I want to just let him be a boy growing.

This holiday time, hanging out with cousins, aunts, uncles, friends, I felt like I mostly got to let him do that. Simon got to go and hang with the older cousins. He got to see and play with his younger ones. He got to move in and out of rooms with family members all happy to see him and give him a hug. He got to have a door shut in his face when only girl children over 5 wanted some privacy (it's important he get that too).

It was a thanksgiving weekend that was so familiar and stereotypical- would be to almost anybody- except for all the gay people :-) that when it comes time for medications or tube feedings or seeing the developmental delays in contrast to other children....I don't know what.

Those are 'normal' things for us, for our family- even the extended. Simon's five and a half year old cousin doesn't even ask anymore when we attach his feeding tube to him. There's no question about what that plastic button coming out of his belly is when we all get into our bathing suits for some hotel swimming. It's amazing. Still, I feel it. I feel the distance between me and my sister as she's getting ready to sit Charlie down in the high chair and fret over what he'll eat since he's so out of sorts from the travel and new spaces. I feel it when Simon is so excited to sit at the children's table during the Thanksgiving day meal but I am barely fitting in the space behind him holding his pump bag so that we can pair food play with a tube feeding.

It's not a painful feeling. It's not that traumatic even. It's a 'normal' thing for me in a world where that's not quite normal. But it's my family too and lord knows we've had our share of working out what's normal.

So what is it....it's not easy to describe. I think it might be like finding out that I was adopted much later in life but you've still had the amazing growing up experience that you had only now there's this new thing that you know about yourself that sets you just one degree apart from the family that you've loved and felt so close to for decades. I'm not adopted no matter how badly my sister wanted me to be at one point- so she could send me back.

I'm not sure about that metaphor or even if I believe what I just wrote....not sure.

I am glad to get back to a simpler schedule. I am glad that Simon just loved loved loved having so many of his 'people' around. I am glad for my wife's chipotle cranberry sauce and her putting up with so many leftover containers in the fridge. I am glad for another Thanksgiving out of the hospital and not even thinking about whether or not Simon should be at the gathering with 21 people and all their germs. I am glad for so many people that love my little guy and how he loves them back. I am glad for my parents, my sister and her family, and all the incredible love and support that my little triad have gotten from them for so so long. I am glad for Jaime's family and our extended and chosen family that have meshed so beautifully that Thanksgiving is just another excuse to get it together and feel the love.

More holiday mishegas coming up for sure. More walking in between the raindrops. More life. More paying it forward. More schisms. More living with and thriving through. Just more more more.

Happy Thanksgiving to you.

A family that Brussels Sprout Stalks together, stays together

Cousin Love

Maya and Simon swing series

Showin' off the Mic-Key (but look at that 6 pack!)

Where my ladies at?

There you are!

Post pig-out puppy pile

Turkey bone!!

Reading with MM and PopPop

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?