Team Shimmy

Never Out of a Job

2012-01-16T19:39:00.000-08:00

These are tough times. Unemployment. Inflation. Debt.
And, I will never be out of a job.

Today this thought makes me want to jab 60ml syringes full of blended food into my eyes (and for those of you in the 'know', those are big syringes). It's a day where I cannot figure out what to do with myself or for myself. It's a day where Jaime is off work and wanting to be there and help and take things on, and does, and I still feel myself spiraling down into the depths of despair. The 'work' that I speak of, that beautiful boy that is growing and changing in leaps and bounds (in small but relative ways), that amazing boy that has lived when so many thought he wouldn't. That boy that is giving love in new and wonderful ways, that's the 'work', the job, that is so secure in these troubled times.
Today, that 'work' feels laid out before me, a road paved with poopy diapers, miscommunicated owies, unattended yoga classes, feeding therapy groups attended, developmental milestones missed, medical appoints never missed and a career finally found and off to a wonderful start.... halted.

I took Roxie for a long walk Saturday, tooled around China Town and San Francisco with Simon and Jaime yesterday, and repeated the Roxie walk today. My body hurts. I pulled a muscle last week and can't seem to get it better. I have had a pain in my achilles for months now and have not taken care of it. I have a herniated disk in my back that some days is so unbearable that to bend down and unlock the ChildSafety on the toilet almost doesn't seem worth it. (read that one again....take it in. I'm not kidding.)
I have at least 10 pounds on me that are not helping and probably 30 total that should come off to stop making Jaime worried that she'll be pushing me around in a wheelchair during those old people adventure cruises. (Please note that Jaime is not in anyway pressuring me to 'lose weight' only to take care of myself so that I may be around as long as she plans to be and that we may someday enjoy retirement living long and wonderful lives together - how selfish is that?!)

And I got nothing for any of it.

I have Simon's schedule down. I have his med doses and weight changes and barfage volume, and poop consistency, and ejection fraction and shortening fraction and BNP and tube feeding schedule and oral foods for play versus swallowing and fine motor and gross motor delays and appointments....down.
Ask me about any of those and I can tell you what's happening and when.

Ask me what I want to do to take care of myself, what I would do if I had the time, what I do do when I do have the time (yes I said doo doo), and not only do I not have an answer but I have a reaction that feels no less than a complete shut down (I just typed "shit down" instead and almost kept it.)

Today I am so angry about it I can barely stand to be around myself, let alone Simon and Jaime. AND IT'S A HOLIDAY. ONE WHERE JAIME IS HOME. A holiday that I love and want to celebrate with Simon in meaningful ways so the knows that Dr Martin Luther King Jr was an incredible man, part of an incredible movement, and we're keepin' on with keepin' on.

And all I can fucking think about today is how it feels like I will never ever be done with changing really messy poopy diapers because my son is dependent on stool softeners and won't ever be able to tell me that he's got to GO potty instead of me having to smell it and look to see if it's gas or solid with no consistent verbal telling. I can't stop thinking that no one will ever want to hire me again because who wants a social worker that's been out of the field for so many years and isn't up on the new systems or approaches or therapies? When will I stop buying and blending and freezing pounds and pounds of fresh fruits and vegetables so that every other day I can make two days worth of a green or orange shake that at some point will end up in my hair, on my clothes, or somewhere on the child requiring a complete costume change? When will we no longer have medications, syringes and food pumps/bags delivered to our house on a monthly basis?

I know it will happen at some point. Either Simon will switch to pills and manage his meds on his own and/or he'll start eating by mouth. I know that someday he will poop on the potty. I know that I will go out for job interviews and explain my very good reason for not being at 'work' for the last 5,6,7 years. I know that employer will be so moved by the work that I have been doing that they will offer me the job on the spot with flexible hours so that I can still be there for Simon (at the highest rate of pay possible given all that amazing experience.) I know that is likely.
But....we are years away from that. Years. And today that feels just about the same as never. It's never going to happen.

A friend asked me how I'm doing, me, at the hardest job in the world?
I can't help but remember how much harder it could be.

And, today is feels fucking hard with no end in sight.

I don't want to leave the company. Maybe a lateral move, a short term project. No, I don't think there's any of that in my immediate or even short term future. No pay raises, no cutbacks, not even the chance of bringing in someone just as qualified to do the work for less pay (you can't really cut $0.00 down much more).

Awesome.
/ \
0 0
-
~~~

Thank goodness my product is top of the line and really good lookin'.

Playing with Bubbles

Practicing poses for his first school picture day- Coquette?

Thoughtful?

Casual?

Runway Ready

Where's my bike?

San Francisco Cable Car excursion

So very very cool

On the hunt for Dim Sum in China Town

It's just a rant. I'll get over it. Just give me a minute.

A Fine Year

2012-01-04T00:01:00.000-08:00

During our recent vacation, Laura and I snatched 20 minutes to reflect on the past year.

My assessment of 2011?

It was...fine.

Not great, not particularly good, definitely not terrible.

Just fine.

And what a freaking miracle that is.

We, the Fitch-Jenett family, who in each of the prior three years had moments (however brief) of terror and horror and the most godawful gut-wrenching, bone-chilling fear, had a whole year that was just "fine". If I didn't feel so tired from the pace of our just "fine" life, I might jump up and shout "Hallellujah"!

In 2011, our little guy ended his early intervention program, started a special day class for severely handicapped kids, went to camp with typical kids, made it through a whole year without ONE SINGLE hospital visit or major illness, got his heart function into the normal range, dropped some meds and just moved up to a more challenging (non-severely handicapped) preschool class.

His year was waaayyyyy better than fine.

Mine though? Fine. Work was fine. Social time with friends was fine. Family time was fine. Grandfather passed away which was sad but...fine. Nothing spectacular, nothing devastating.

"Fine" feels kind of weird. Like coming back to earth after being on a space shuttle or something. Or maybe coming back from war. There are still tender spots but I'm too busy trying to keep up with the current that I can't quite stop and care for them in the way that I did when things felt broken open all the time. When things were godawful, I felt permission to stop and mind the fragile places without the pressure to "go, go go".

Now it just feels like there are too many things to do and not enough sleep and a child that is keeping us guessing and keeping us moving.

I guess it feels like the life of a typical Mom who works outside the home.

And really, what a fine life it is.

-----
Now for a moment of levity. Our child talked at this pace for approximately one solid hour in the car while we were driving home. It's a great example of what I call his "popcorn" speech. A bunch of random crap strung together. And dangit if it doesn't crack me up every time. Also, "Thomas the Tank Engine" fans, this one's for you.

http://youtu.be/Mcqo4KEV8mA

Tis the Season- for pictures

2011-12-12T22:32:00.000-08:00

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

2011-12-08T09:35:00.000-08:00

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

2011-12-02T14:52:00.000-08:00

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

2011-11-29T15:12:00.000-08:00

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

2011-11-11T13:10:00.000-08:00

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

2011-11-04T16:55:00.000-07:00

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

2011-10-25T20:46:00.000-07:00

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

2011-10-21T15:34:00.000-07:00

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

2011-10-10T12:15:00.000-07:00

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

2011-09-28T14:55:00.000-07:00

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

2011-09-26T14:53:00.000-07:00

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

Our Little Racehorse

2011-09-22T23:11:00.000-07:00

Simon is starting to catch up developmentally. It's freaking awesome. And it's totally throwing a wrench in our nicely laid plans, damnit.

Simon's special day class happens to be at one of the best public elementary schools in the entire district. We adore his teacher. School is a 10 minute drive from our house. It's in a fancy neighborhood with lots of trees and green open spaces, not freeways and big rigs driving right by like some of the other schools where special day classes were offered to us.

And Simon, after a summer spent with typical kids at summer camps, is kinda leaving the other kids in his class in the dust. And doing his best to show how over it he is when he's at home.

And making us a little C-R-A-Z-Y. (By the way, he could sight read each of those letters.)

Little man is finally starting to make sense (most of the time) when he's chat-chat-chatting. He starts talking, literally, from the minute he wakes up, until he goes to bed. In the mornings, we lay in bed waiting to hear what the phrase of the day will be. Will it be "I'm a scuba diver!", "Go Secretariat!" or "Yo Ho Ho and a Bottle of Dolphins"? He sometimes wakes up in the middle of the night and just has to chat a little before he can go back to sleep.

He's counting to 100 in English, to 20 in Spanish, to 10 in Hebrew. He knows at least 30 words in Hebrew. He's getting really good at electronic puzzles and wants to read endless books with us. He's figuring out how to use full sentences to ask for things and is learning how to manipulate people on the street with his dashing good looks.

He's still the size of a 2 year old and way behind other 3 1/2 year olds in almost every way but dang it if that kid isn't gaining on 'em.

For the last few weeks, Laura has been coming home on Wednesdays (when she picks him up from class to go to feeding therapy instead of him taking the bus home) and voicing increasing concern that he seems like he's "not among his peers". For the first time, it's that he's more ADVANCED. We shot a quick email to his teacher and she confirmed that, indeed, we should talk about maybe having him evaluated again.

This is such good news and...sends us into a bit of a tizzy. We were just getting excited to get into a groove. We know his school, we know his teachers, there have been no glitches with his feedings at school. We got this. And.. I think it's all about to change again.

The thing we're spinning about most is whether or not there will be an appropriate special day class through the district. There is a special day class that is an "inclusion" class, which means that there are 12 typical kids and 6 kids with IEP's. That might be a good option given how much ground he gained being with typical kids this summer, but that's a lot of kids for him to be exposed to germ-wise. We're going to check in with his cardiologist, Dr. Hunkypants, to see if we can take a calculated risk and expose him to more germs in order to catch up developmentally or if we need to still be hyper vigilant. Another option is that if he doesn't need special ed for development anymore but still needs a small class due to germ concerns, we could try to get the district to pay for private preschool. Sounds dreamy, but like a hell of a fight.

Simon has been obsessively watching the final race scene in the movie Secretariat. Like every morning for the last 2 weeks. For those of you who are unfamiliar with the movie, it's about an underdog racehorse who ends up being the fastest horse that ever lived. It's total Disney schmaltz and it makes us tear up every fricking morning. No one believed that this horse would ever amount to anything except for one woman who convinced 2 trainers and a jockey to take a chance on him. They worked with him and believed in him and kept believing in him, even when he seemed to fail. In his final race, Secretariat's jockey took a leap of faith and let him run at a pace that seemed completely impossible to sustain, dangerous even. He ended up winning the race by 31 lengths.

It feels a little like we're in that place of figuring out how much lead to give Simon, how big a risk to take, to let him find his stride. He's certainly chomping at the bit. I fear he might drive Laura to drink if we don't find something better suited for him. We have a meeting coming up with his teacher and maybe another IEP meeting. I have faith that the right choices will be presented and that Laura Fitch will fight to the death to make sure we get the best one. God, I love that woman.

And now, a few photos...

Looking oh so cute in Vermont

Getting some BIG love from Pop Pop

Laura, Simon and Pop Pop in gorgeous Vermont

Simon looking REALLY unsure about the grasshopper Mommy has on her finger

A little Parent Infant Program reunion at our house

Go East, Young Man

2011-09-07T18:05:00.000-07:00

Another blogger recently described vacations for stay-at home moms as taking their work with them but in a whole new environment that is totally not set up for their needs. I think that could describe the experience of anyone traveling with a 3 year old. It's been very sweet to see folks and...not what I would call a "vacation". This experience shall now be called " Our 2011 Trip Back East to See People We Love". Simon is a trooper. Mommies are wiped out and hardly had a minute together because one of us is on the boy so the other can spend time with whomever we're visiting. We might need a vacation after our vacation.

We spent Fri-Monday in Newtonville, MA (just outside Boston) at our friend's Dad's house (thanks Dan and Bara!). Here are a few pics:

Simon looking adoringly at his Auntie Maia, in Newtonville, MA

Mama and Simon, trying to not get eaten by a shark at the New England Aquarium

Simon, cooling off at a park in Boston.

Laura, explaining the Hebrew on her tattoos to Joshua, the quirky Orthodox Jewish kid who totally got that we were married and that therefore, Jaime/Mama is part of Laura/Mommy's family.

Simon and Pop Pop on the Carousel near the aquarium

Ending the Boston leg of our trip

Monday morning, we left Boston and drove through Western MA to visit our old college (Smith and Mount Holyoke) stomping grounds.

A big old passel of long time friends and their kids (24 of us total) meeting up with us in Northampton. Plus a random Smith senior on the far right side whom we invited to join us in the photo.

We had a great few hours there and then drove up to Vermont. It was a pretty heartbreaking drive. The massive damage was evident in almost every town we drove through. Restaurants with every piece of equipment out in front trying to dry out. Houses with all their belongings heaped in a pile at the roadside. Homemade signs warning folks that bridges were out or about new routes. Roads washed out. It was all a little shocking.

Since we've been in Vermont, we hit the store for some basics, like Dragon sunglasses

Smooching at a playground in Rutland during a break in the rain

Going to the Montshire Museum, about an hour and a half northwest of our town.

Lying on a Black Bear (a stuff one, fear not)

Eating lunch at the King Arthur Flour Company aka Baking Mecca

And lots of swimming at a pool where Laura's parents have a temporary membership.

We have 4 days left- 2 in Vermont and then back to Boston for a make-shift Farm and Wilderness camp reunion (the camp is completely cut off and the reunion was postponed until next year due to the damage to roads from the floods). We might get to meet a family or two from our Cardiomyopathy listserv who live in New England, which would be amazing!

New England is gorgeous and...Oakland is a pretty awesome place to come home to. It's good to be us.

That Mom Part 2

2011-08-19T15:48:00.000-07:00

One child receives a new heart and one child's heart stops beating. That's been the last 24 hours for us over here in Cardiomyopathy Village.

And I am that mom.

The one who runs into a door jam and curses loudly (hoping that Simon will not pick up motherf-er and repeat it all day at camp). The one who primes his tube feeding set up and then lets it run all over the counter because I forgot to put the extension end back into the bag as I left it to go get his meds and barf towel in place. The one that pours her half and half into her coffee and lets out another mother f-er as the top comes off the bottle and half the container makes it into my cup, spilling out all over the counter at our local bakery.

I am that mom.

Not the mom who had to make the unthinkable decision of taking my son off life support and letting him go.

Except I have been that mom. It just ended differently.

Jaime and I were those moms for about 48 hours. There was that weekend where we went down to Stanford to meet with another heart doctor to decide whether or not to 'list' Simon for heart transplant. When Jaime and I decided not to, we assumed that it also meant that we would need to begin the process of saying goodbye to Simon. We spent the next 48 hours looking into hospice and palliative care. We talked about organ donation. We held and touched Simon in different ways. We walked, talked, ate, slept, and cried with Death. She was right there with us.

I will never forget that morning as shared our decision with Dr. Rosenfeld and asked should we get started with palliative care.

I will never forget that "Oh no, we have a few more things to try."

That "Oh no".

Oh. No. Two words can be said in so many ways. This was like a dismissal accompanied by a shrug of the shoulders, a gentle frown. Like something you might say to someone that offered you a second helping of a very rich dessert. "Oh no, I couldn't eat another bite."

Except this was "Oh no, I don't think were there yet." "Oh no, you don't have to say goodbye to your five month old son just yet."

Oh no.

And that was the turning point for us away from Death. Or her from us.

And, I will never forget that time. Those 48+ hours where Jaime and I did what no parent should ever have to do or even think about.

But Brooke and Lee did it. And their 'Oh no' was very different than ours.

Lachlan has been let go and there are only so many of us (too many of us) that are reading this blog, or simply getting started on their days that know or almost know what they are feeling.

There's sympathy and then there's empathy. And this morning I am that mom. I have empathy. I am sitting with Brook and Lee. As close to them as I can get. Through passage ways that are only meant for the Divine. I am sitting here on my couch, as close to Australia as I can get. As close to understanding the death of a child as I can get. It's pretty close.

But, I am this mom. Not that mom.

I dropped Simon off at day camp this morning. He kissed me goodbye with a viking hat on, one horn pointing up the other horn pointing down. I will pick him up in one hour and forty minutes and we will go right to the potty to see if we can manage a poop in the toilet and not his diaper. I will give him Lasix via his G-tube at 2pm and then at 5pm we will head off to our therapeutic horse back riding session. Then we will have Shabbat dinner with dear friends, lighting candles, drinking wine (juice) and breaking bread.

I am that mom. The mom that learns that her son is knocking down other kid's block towers and not saying he's sorry. Granted he's doing it because he's developmentally delayed and more like a two year old instead of the 3 or 4 year olds that he's at camp with...but still I am that mom.

That mom that, for the time being, is loving, touching, being exasperated, surprised, amazed, pushed to the edge, delighted, and inspired by my son.

This Cardiomyopathy...this thing...this life...this morning....it's all so much. And for little Brooke who had her transplant and is not yet 24 hours post surgery...Rock On! She is already asking to go to the playroom at the hospital and getting to spend hours snuggling in her parent's laps.

I'm gonna take a breath right now and feel it all. You could do it too if you want.

It's a lot right?

Here are some pics from the last two weeks

Simon enjoying Djaffar (and vice a versa)

Simon, on the first day of Monkey Business camp,

fell in love with 'Bob the builder' Aka Dylan

At Horseback Riding Therapy. Helping out Orlando

In love with Renu, visiting from India

Leg warmers and Arm warmers for the morning dog walk

Simon's new favorite mode of transport

Post wedding

VikingSeries

Last night with Reagan

Heartbreak

2011-08-19T05:55:00.000-07:00

"Now cracks a noble heart. Good-night, sweet prince; And flights of angels sing thee to thy rest."

It is with such a heavy heart that I tell you all that little baby Lachlan in Sydney will be taken off life support today and allowed to go. He evidently suffered a cardiac arrest 6 weeks ago and an MRI yesterday determined that his brain damage from that event was so severe that his little body can't regulate itself on its own.

I don't quite have words...

You can shake that love tree and offer condolences at the "Fight for Lachlan Hulsman" page on Facebook. They're going to need it.

So much love to you all...

Shaking the Love Tree

2011-08-16T10:58:00.000-07:00

When we were in the ICU with Simon, more times than I could count, people we'd never met did something nice for us. They had heard about us from friends, or friends of friends and decided to reach out. Sometimes it was food dropped off at the hospital, sometimes it was an email to tell us they had heard about Simon and were thinking about us, sometimes it was a hug on the street if they recognized us from our blog. These small, random acts of kindness began to knit a web that kept us suspended just out of the pit of despair when things were really bad.

There is a family in Australia that is in that hardest, darkest place right now.

A woman named Brooke, emailed me a few months ago after finding our blog. She has a little boy named Lachlan who has the same heart condition as Simon. When she first emailed me, she said, "We have been captivated with your blog ever since we stumbled across it a few weeks back. We've cried, laughed, but most of all we've related to almost very story told. Thank you for sharing your story. It really is like we are reading our own day to day life. I've even sent it to my family to read.....telling them to change the names to Lee, Brooke and Lachie, and it's us!!"

It was a very sweet message and we've stayed in touch, comparing notes, checking in, etc. Her story reminds me so much of our story with Simon and I feel a deep connection with this Mommy and her family, even though she's so far, far away in Australia.

Her little baby, Lachlan, is 10 months old, and has been pretty stable since he was diagnosed at 2 weeks old.

Until now.

About a month ago, Lachlan got very ill and has been in hospital since then. He seemed to be making good progress and got sent home but 8 hours later they were back in the ER and now he's back on life support. The doctors don't really know what's going on.

My heart is *breaking* for this family. They were trucking along, just as we are, and now they're back in the pits of hell with machines and drips and lots and lots of unanswered questions. This could be us with the flick of a wrist.

This post is actually an ask.

I'm asking anyone who is reading this to mobilize all your friends to shake the love tree and bring them the spoils.

If you are in Sydney or know someone who is, and have love to spare, here's what you can do/bring to the Sydney Childrens Hospital in Randwick:

Cookies for them and for the staff (always helps to grease the wheels!). Make them a meal and leave it at the front desk (they have no dietary restrictions). A fruit basket. Trashy magazine. Warm cozy socks. Eye pillows. Books they can read to Lachlan, even while he's sedated. A mix CD. A snuggly something for Lachlan to have in his crib with him. A homemade card. A goofy postcard. Anything you can think of that would make them lift their head just enough to remember that they're not in there alone.

They may not be up to meeting you face to face, so it's probably best to see if you can drop things off at a front security desk - tell them it's for the Huslman family.

Let's shake this love tree, people.

p.s. you can follow their journey on Facebook by liking the page "Fight for Lachlan Hulsman".

UPDATE: August 19, 2011- Tragically, today the Hulsman family learned that Lachlan suffered severe brain damage as the result of cardiac arrest 6 weeks ago and made the decision to remove him from life support. Our hearts are breaking for them...

That Mom

2011-08-02T10:41:00.000-07:00

Sometimes I want to be that mom. Not the mom that wakes up and first thing disconnects a tube from her son's belly that just administered medication.

Sometimes I'm tired of it. I'm tired of sitting and pumping food and medications into my son while we watch Monsters Inc. for the 85th time so that he'll be still and less likely to throw up that food and medication (all over the couch, himself, the dog and/or me).

I want to be that mom. The mom that stresses over the fact there was a half eaten plate of scrambled eggs instead of a clean one. The mom that sighs heavily over cleaning up said scrambled eggs off the floor. I want to be the mom that doesn't have to clear seven syringes off the table every morning but maybe a sippy cup instead.

I would be that mom in a heartbeat. That's not funny. Heart beat.... Not fucking funny.

There was a boy today at day camp that was just losing his shit. His Dad had dropped him off and he was NOT happy about it. Huge tears rolling down red cheeks. Sniffling. Hiccuping with the sad desperation of separation.
I could see the gut wrenching his father was feeling as he walked away knowing that it was what needed to happen.
I would be that parent in a heart beat (fucking heartbeats).

Instead I get a quick kiss without eye contact because the Barn is up and you can actually climb inside of it (once you've kissed Mommy goodbye.)

I'm not proud of my son who is so well adjusted and secure. Today I would trade that in for another Simon that hasn't gotten used to dozens of doctors, nurses, therapists, friends and family that have come to take care of him, wish him well, make him do exercises, take his blood, work on speech, listen to his heart, distract him.

I would like to be that mom. The mom that stresses over leaving her crying son but then finds out at pick up that he mellowed and played well for the rest of the day. Shit, I'd even rather be that mom that gets the call an hour later that he's not stopped crying and could I come and get him.

Instead I'm the mom that walks into the room, drops his feeding pump bag off in the fridge and checks his diaper stash in his cubby because potty training is so far off for this three year old due to diuretics and stool softeners and language delays.

Today I want to be that mom. The one who's kid will only eat white foods. The one whose kid is growing out of their shoes so fast that they can actually hear the cash register at Foot Locker ringing in their head.
The mom whose kid throws fits in the super market because they can't have that box of Kix because we have a whole box of Trader Joe's Gorilla Munch in the house already.

I want to be that mom, whose kid is so shy that they will only do the Koala bear cling to my legs when we run into an old friend on the street.

I want to be that mom that has to work at keeping up with their kid, shouting a loud "Simon, STOP!" as they head off toward the edge of the sidewalk.

I want to be that mom. Today I really want to be that mom.

I want to be the mom that got to work off her baby weight and was so frustrated that those last 5 pounds just wouldn't come off. I would take that in a fucking heart beat instead of being the new mom sitting in the hospital chair for 15 hours a day holding her months old baby and wondering how she could reach the Peanut M&M's that were in her bag on the floor so that she didn't starve but didn't wake her son who's resting heart rate just dropped below 100 for the first time in weeks .

I want to be that mom that had to pump her breast milk at work while staring at a picture of her kid for 'let down'.

I want to be that mom that didn't stop offering the boob until her kid finally had to say "I'm done Mother, now can you please let me finish my algebra homework."

Three years ago today I stopped getting to even think about not being that mom. Three years ago today I woke up knowing that I was never going to get to be that mom because yesterday, in the late afternoon, after a 'funny' start to the day, my son was diagnosed with a chronic and possibly fatal heart condition.

This was the first day of me being this mom.
The one that savors each day.
Each breath.
Lives and laughs with greater appreciation for living and laughing.
Is so thankful for the outstanding little man that makes it so much easier than it could be.
Feels the presence of the divine so much more.
And understands the power of family, friends, and community on a cellular level.

And more evolved shit like that.

Today...I kinda just want to say Fuck Her. Fuck that 'unlearning' the grass is always greener shit. It is. Sometime the grass really is greener and doesn't need as much mowing or weeding or all natural for your child/pet fertilizer.

Today I would be that mom. I would.

In

a

fucking

heart beat.

And oh yeah, it was amazing to celebrate yesterday and how far we've come. Blah Blah Blah. Fuckity fuck fucking evolved shit gratitude and all that.

3rd Anniversary

2011-08-01T22:21:00.000-07:00

Today marked the third anniversary of Simon getting sick. On this day 3 years ago, Simon was diagnosed and admitted to the hospital and the next day was on life support. It's hard to wrap my brain around it. How could it be that long ago and how could it have only been three years ago?

For me (Jaime), today felt pretty...average. I think that's saying a lot. I didn't have random crying, big feelings, acute memories of the hospital. It was more hustle bustle to get our cupcakes together so we could go to there to say thank you to the ICU staff.

It's a little staggering to think how much we've adjusted in 3 years.

Simon got to say hi to some old friends, including his primary evening nurse, Carol. They were thrilled to see him and he charmed them all, as is his way.

Mama, Simon and Carol

Reunited and it feels so good (definitely better than when we were inpatient!)

Mommy, Simon and Carol

Simon with his "scuba mask" on his head aka the face masks they give out in the ICU to keep cooties from spreading, that he requested.

If I never see one of those damn masks after our need for them last winter when we were in for pneumonia, it will be too soon. Simon, however, was loving them. Here he is maxin' and relaxin' in an infusion chair in the hallway. We practically bathed him in Lysol when we got home.

It was a very sweet, very mellow, uneventful, non-traumatic day marking the hardest day of our lives. Just the way I like it.

Our Therapy Dog

2011-07-26T10:19:00.000-07:00

I've decided that Simon is the human version of a therapy dog.

More times than I can count, Simon has walked up to a total stranger, said "I want a hug" and when they oblige, he lays his head on their shoulder and says, quite firmly, "I love you". It's fascinating to watch the expression on people's faces as this is happening. It tends to vary by gender lines. Women usually smile and hold him closer and dish it right back. Men usually look slightly uncomfortable, awkwardly pat him on the back and say, "uh, thanks buddy". But I can also almost audibly hear the men's shell cracking a little when it happens.

I'm in this thing called re-evaluation co-counseling. The basic premise is most of the troubling behavior and patterns we have in our adult life are the result of getting hurt/disappointed/ignored, etc when we were really little that we didn't really get to express our feelings about. One of the most striking things I've learned is about how men, in particular, are crammed into tiny little boxes by society. They learn really early that it's not okay to express/have feelings, only really get to have positive physical contact if it's in the context of sex, it's not really safe to be vulnerable, etc.

When Simon comes crashing through all those rules, when guys get a tiny dose of totally unconditional love that they didn't have to earn, jump through hoops for, or beat anyone up to get, it's intense. It's a little painful to watch how hard it is for some of these guys, especially ones that aren't fathers, but also really powerful. When it's not too hard for them or too uncomfortable, they get a light in their eyes that wasn't there before. One of our buddies at the bakery we stop by and visit almost every day recently told me that he told his therapist brother that getting Simon's hugs is the best part of his week.

We're coming up on the 3rd anniversary of Simon getting sick (August 1st). I'm not sure exactly why he got sick or what it all means in the big picture, but this much I know.

Simon is on this planet to break all our hearts open a little more each day.

Some pictures of the heart breaker

Getting ready for my last day of Ocean School (Summer school)

Cowabunga Dude!!

Me and Uncle Barry

And my Uncle Larry

Look, both of them.

In repose with Uncle B

That bag of kettle corn is almost as tall as I am

But I will take it down one piece at a time

And that, dear Mama, is your life line. Here is where your love line settles in with Mommy.

Pictoral essay

2011-07-19T12:24:00.000-07:00

Serious about summer school

Simon rocks the Microphone

Story time with Kim and Moses

I'll have one more cappuccino..make this one decaf

Overnight with Auntie Dre and Auntie Joan

Oh yes, and the SCUBA Diver they got me!!

Next up is our visit to the Academy of Sciences In Golden Gate Park

It's all relative

Duuuude.

So coool

Just chatting with my new Friend. Have I mentioned he's a SCUBA DIVER!!!

That was just about the coolest thing ever right?

Um...that's pretty cool too

I think I'm having the best day ever!!

What's next?!

I'll Have The Special Special Please

2011-07-07T15:40:00.000-07:00

Driving to our morning appointment to cast Simon's feet and ankles for braces.

Laura: "Simon, we're on our way to get your feet ready for new special shoes."
Simon: "I love special shoes." Pause "I feel special."
Laura: "You are special."
Simon: "I feel special. I feel happy."

And then he went on to prove both.

About a month ago it was recommended by our physical therapist that Simon get braces for his feet and ankles. There was significant pronation and weakness and she wasn't seeing the progress that she'd hoped for.

I don't know why but for some reason this hit me so hard.

Simon's feet (among other things) have been through so much. First there was the special position that the left one was in when he was born. It had clearly been bent and tucked up underneath my bottom left rib (so that's what felt like a stake poking out from the inside!) and could not only be flexed back all the way to his shin, but could also turn completely inward and be in line with the rest of his leg.

Then there was the time in the hospital where every few days they would be testing for blood gasses and need to prick the heel for a few drops of blood. We were in the ICU for 113 days. I can't do the exact math but Simon's little tootsies were poked no less than 25 times.

We've worked hard at bringing his sense of footness back to a positive place. I've massaged those dogs, gotten him exciting socks, made trips to the local Foot Locker just for fun, and Jaime has even painted his toenails a lovely fuchsia all to celebrate the 'foot'. So when we learned that we needed to get his feet cast before they could make the SMO's (braces) I was already dreading the appointment as another one of those times where I needed to distract/hold my son down while something was 'done to him'.

Add this to the feeling of sorrow that Simon needed the braces in the first place and the last couple of days kinda sucked.

I prepped him. I mentioned it three days ago, then yesterday, and of course this morning. I don't overdo it. I just let him know that it's coming. The language goes in even if the meaning and understanding doesn't. I had the toys, the Ipod Touch and the towel (in case of throwing up) all prepared. I should have listened to the boy in the car and relaxed a little.

I'm already smiling from the "I feel special" comment when we get into the office. He says a robust "Hello everyone. I'm here." as he walks into the waiting room and follows up with "I want Trains".
Crap, that's the one thing I've forgotten.
Not to worry, the room that they put us in has a train table. We are blessed.
Our clinician comes in and right away sits on the floor next to Simon at the train table.
Laura: "Simon, this is TD. She's here to help us get your special shoes."
Simon: "Hello TD. Good Morning TD. I want a Hug."
And there you have it.
She hugs him.
He says he loves her.
She's charmed.
He's more than fine and we're off.

After she watches him walk and stand and tiptoe she agrees that the braces will be beneficial. It will take about 30 minutes to cast them. I'm still nervous

TD: "I'm just going to go and get my stuff and come back and we can get started."
Simon: "I love stuff. I want stuff. I love stuff."

She's back in less than two minutes and Simon is already into her bag of stuff before it's on the floor. He gets her to put the blue latex gloves on his hands instead of hers and while she's gone getting another pair he continues his "I love stuff" tirade.

He wants to hold the sticky casting tape, picks out his patterns for the plastic brace part and straps (Helicopters for the plastic sea creatures for the straps) and goes back and forth between watching a Sesame Street podcast (spectacular is the word of the day) and TD wrap his feet and calves. His right leg goes without a hitch, peep, or any bit of struggle and he only pulls back once as she wraps his left leg.

I can't express how amazing this is. How amazing he is. He is my special special.

I know every child is special. I've worked with children since I was 16. They're amazing and so much more resilient than us more 'mature' folk. Simon is an exaggerated example of this. He has been through so much in such a short amount of time. What is amazing to me is how deeply he has already learned to be present for each moment, celebrate the goodness and move through the harder ones. He will let you know when something is not to his liking for sure AND he'll also make sure that he latches on to what can be enjoyed while it's there. Most of the time it's people. If there is a person around to have a good time with, Simon will figure out how to have it. I know that this may get us into some interesting situations as he gets older but right now it's a huge gift for this little toddler man. (Already thinking of several inappropriate teenager or young adult situations that might not be great to attach that last thought to.)

I know I've said this before and there have been countless woo woo writings on how our kids can be our teachers..yadda yadda, woo woo.
Still, I gotta say that Simon is mine and one of the best that I've ever had (and I've had a few great one's). Speaking of great one's, my mom and dad put it into a lovely visual on the phone today.

Most of the time Simon and I are learning together, walking down this road hand in hand. Sometimes I carry him (he is a toddler after all) and sometimes I'm the one dragging or even digging in my heels. I'm stubborn when it comes to evolving. I will start to slowly slip back to walking in that rhythm of fear or mistrust. I do it regularly. That's when Simon ends up being behind me. Little hands placed gently on me (I would say my back but he's not that tall yet so it's really more around the bottom of my tush) pushing me forward until I gain enough momentum that he can hold my hand again as I try to keep up with his little evolved self. The one that requests that I be present in each moment for him. Especially the one's that he seems to be able to glide through much more gracefully than I.

There seem to be so many on this road of parenting a Special Special.

Thank goodness he's with me.

Fuckin' love him. I really do.

Why we will win Parents of the Year...

(where's his right hand? Holding on to a light bulb in a plugged in lamp..that's right)

The fist pump is accompanied by a "Goooo Bra!!"

So proud of himself

Hearts Are For Breaking

2011-06-29T23:02:00.000-07:00

Simon's broke once, literally. It seems to be on the mend. Mine has done it for years.

I think the first time was in the 3rd grade with my friends and the ways that girls hurt each other. My heart broke right then and there when I was told that I wasn't wanted anymore in the 'singing' group that I started. Then there was the first love that feels like nothing else and being cheated on with 'our' good friend. My Nana passing after I was the last person to be with her and to tell her she could go. Loves that came and went, all the while my heart is breaking over and over.

I heard once that once a heart breaks it's only more open and an open heart is just that; open even wider for the next time that love comes rolling in.

These days it feels like my heart breaks a lot. So much more often since Simon came into this wonderful and wicked world and even more consistently since the day he was diagnosed with Cardiomyopathy.

Simon was playing today at the park. Auntie Dre, Auntie Joan and I each taking turns playing with the little man, spotting him as he climbs, helping him find dandelions, making him squeal with glee as he learns to play chase. And then, less than five minutes into the latter, it's there, the gag and heave. He pauses, brings both hands up to his eyes, pressing them tight to feel some sensation other than the nausea and/or reflux that he's feeling.

He doesn't know any better but my heart breaks wide open. It cracks and splinters into a million pieces imagining my son running and playing and NOT having to stop after just a few minutes of laughing and trying to catch his breath.....from laughing and running.

A minute passes and he's off again, heading over to his beloved Aunties for more chase. I feel the weight of it move up from my own chest into my throat and threaten to come pouring out my eyes. I don't want Simon to see it and 'play' lie down face first on the grass. I manage to get out at least three sobs before I feel it. At least 27 pounds of love jumping on top of me with a loud "hellooooo Mommeeeee," and for the 2nd time in less than a minute my heart breaks all over again.

They almost feel the same. The first breakage is all about how much I love him and want nothing but ease and grace and goodness for him in his life. I know that's not going to happen (mostly since it hasn't since he was born). I know that his life will include medications and limits and comparisons and hospital stays and who knows what else...(more vomiting, shortness of breath, pain, transplants, ???) I also know that he doesn't know any different and by golly if he isn't one the happiest kids, or just people, that I've ever been around. I know that.
I see it day in and day out.

This little bulb o' mine burns brighter than most in the box and while I like to think about how he's one of the new compact fluorescent ones that shed light farther and longer than the older shorter lasting incandescent ones, he's still got a paper thin layer of glass around him that's not meant to withstand much and like my own heart day in and day out, could easily break into a million pieces.

And then I think about the heart muscle and one of my favorite t-shirts that Jaime has. It has a message that plays over and over in my head most days. "The heart is a muscle the size of your fist. Keep Loving. Keep Fighting." Simon's heart is a muscle. It's a muscle and a teacher and a toddler mess of fiery sugar sweet snowballing loving that I am blessed to have thrown my way more often than not. He can break my heart over and over again for all I care.

No really, for ALL that I care about, Simon can break my heart over and over again.

.

No quotes with these. I think they speak for themselves.

And last but not least, video from Simon's first Dyke March (that he remembers)

I Walk the Line

2011-06-19T21:56:00.000-07:00

I think a lot of parents do it. All the time. The line between the parent they want to be and the parenting that they may be doing in any given moment. The line between the parent with their child's best interest at heart (hah) and the one that shows up when the bank account can't handle it/what needs to get eaten before it spoils/amount of sleep I got/could you just stop whining/move faster/put on the clothes that i already picked out/ 'just do it' parent takes precedence.
I know that I've certainly been that parent. Both of them and I relish the lifelong journey of finding a given balance to it on a given day.

But lately I've been walking a different line and I'm feeling once again that my parenting is just that little/lot bit different than the typical caregiver.

My son is going to summer camp. He's got one week between when his Special Day Class (SDC) ends and the extended school year (ESY) program through the district starts. He's also got five weeks between when the ESY ends and his SDC starts up again in the Fall. Most parents are looking in to camps for their kids. Or, their childcare is year 'round and they have nothing to worry about (except for the astronomical cost associated with having to pay other people to care for your child so you can work to pay the bills- we really dislike children and parents in this country...but that's another rant).

Simon has been at his SDC for two months now and the time away from me, with his peers, learning so much more than I could teach him, has been incredible. For both of us, these last two months have been a gift in seeing us both come a little bit more into our own. For sure I have enjoyed the break but Simon...good gravy, the boy has just been exploding with growth and joy. His favorite catchphrase of late is "I looove (fill in the blank)"; Recess, his friend Pharaoh, Speech lessons, the school bus, Scuba divers, Penguins, Sweet Pea (his horse from Therapeutic riding), and my personal favorite, Mommy and Mama. That's right, he appropriately used an 'and' in a sentence. His language, his peer interactions, his awareness...it's all just blooming like the allergens in the Bay Area air.

So with the time off now and coming up later in the summer, it seemed imperative that I find Simon some kind of comparable program for when ESY ended. And so the line walking began.
What kind of program should I look for?
What kind of program will be safe for him AND challenge him the way he is hungry for now?
What kind of program will take him?
Will they be open to tube feedings?
Will they be comfortable administering medications depending on the time of day?
Will they admit a child with a stable but critical heart condition?
Do they a program that he can keep up with cognitively as well as physically?
Will he be able to cool down if it gets too hot?
Will they have a financial aid program or at the very least be in the "we could probably make that work" price range?
Will the day be short/long enough? Not too short that he's needing more but not too long that he needs a longer feed/medication/rest.
Will they get that while he looks stable and oh so handsome, he actually is delayed with his gross motor, fine motor, and cognitive skills and needs a little extra attention?
and on and on...

Some of these questions are meta enough that any parent might ask them. I know that. I feel it. And then there are the questions that are so specific to Simon and all the things that he brings to table.
And he's 3
And he's tiny.

And by golly, if we have to spend a whole week (and then FIVE) just the two of us, gazing at each other's navels all day every day, there will be summer storms here in the bay Area.

So there I was, researching camps/daycares/programs for my child and all I could hear over and over in my head was the rich deep baritone of Johnny Cash.

I Walk the Line.

I wish I could insert an audio clip here because if you know the song then you know the resignation that his amazing voice conveys. It's the resignation that I was feeling for the last two weeks of never being able to find the right summer program for Simon and what side of the line should I lay it down. Do I stand to the side that looks like a good program but doesn't have any experience with special needs (and so I train and explain and lay the $ down knowing that there might a good chance it's not a good fit or Simon can't keep up with the program/won't get fed/ get the attention that he needs) OR do I find a program that is specifically for children with Special Needs but won't challenge Simon in the high functioning but still special needs and medically fragile way that he requires. AND where is that program that deals with my child but won't make him wait until he's 6 or 12 years old.

My sweet little man doesn't quite fit into any of those programs. Like any person bringing up a little person, I want what's best for him. What's amazing and wonderful and really fucking hard is that it's changing all the time. That's not so extraordinary. For Simon, with his developmental delays and medical issues, and love of the world around him, the trick feels like choosing what to prioritize in any given moment.
For whatever reason this moment feels higher staked than others.

It feels momentous. And I'm scared. We finally found a piecemeal plan of things for him to do and not one of them feels like a good fit. One week of indoor camp, four weeks of ESY, three more weeks of indoor camp, one week of outdoor camp, one more week of indoor camp. Lots of themes, lots of hours, lots of sun, lots of training on tube feeding, extra diaper changing for programs that only accept potty trained kids, keeping up, not being able to keep up, not being challenged, too much challenge....it's all there.

In the middle of it all are regular appointments for feeding therapy, weigh-ins, wellness,Therapeutic Riding and Physical Therapy. There is swimming to do, friends to see, and of course medications to take, and barfage to clean up. We live a full life over here.

So I'm scared. I'm scared for Simon in so many new environments. I'm scared to forget a minor or major detail in training the 6th or 60th person on how to connect and run his feeding pump. I'm scared that there doesn't exist the right program out there for him and all his many beautiful and difficult issues. I'm scared for all the new germs and places to trip and fall, and I'm scared for that new and exciting game that get's introduced that's too much for him and his stable but once very sick heart.

I'm also scared to let these fears taint or grey summertime for my son. Summer was and still is a time of great joy for me (in memory certainly but also in present). I want him to savor summer time and camps and friends and water and cold tasty treats. Yes there might be cooling vests and thinking about how to balance fluid intake with Lasix dosing, but I want Simon to make lanyard jewelery and listen for the sound of the ice cream cart and have summer romances and all that good stuff.

Either way it begins tomorrow. I drop him off for a week of Beaches and Sunshine. I will pack his pump and blenderized food and diapers and change of clothes and hope that the other kids are no more than a foot taller than him at most. I will hope and have faith that they will watch out for him just a little bit more than little Timmy or Suzy or Sage or Moonbeam (it's in Berkeley).

I will imagine Simon exploring this place and meeting these new people with the same twinkle and open smile that he has brought to just about every other moment in his life. I will wait until 12:30 and pick him up hopefully full of smiles and new names and love for summer camp. He can do it. I can do it.

I walk the line.

I keep a close watch on this heart of mine
I keep my eyes wide open all the time
I keep the ends out for the tie that binds
Because you're mine, I walk the line

I find it very, very easy to be true
I find myself alone when each day is through
Yes, I'll admit that I'm a fool for you
Because you're mine, I walk the line

As sure as night is dark and day is light
I keep you on my mind both day and night
And happiness I've known proves that it's right
Because you're mine, I walk the line

You've got a way to keep me on your side
You give me cause for love that I can't hide
For you I know I'd even try to turn the tide
Because you're mine, I walk the line

I keep a close watch on this heart of mine
I keep my eyes wide open all the time
I keep the ends out for the tie that binds
Because you're mine, I walk the line.

Johnny cash

and Laura Fitch

Yes, he is that old already

Super Simon!! The boy's got some powers!

And a sense of Style

It was Friday night and he's the one that asked

to wear the Yamulka and say blessings

Holding hands with Manav on the way to the park

A Reminder

2011-06-10T10:08:00.000-07:00

This morning, I'm feeling a little pissed.

I'm pissed that Laura and I are so easily launched into terror by things that normal parents have the luxury of shrugging off. Like a few barky coughs in the middle of the night.

Normal parents have not had the the mask ripped off and seen the bone and gristle and red shiny pulsing muscle that lies just beneath the surface of life's rosy cheeks. They don't hear a small boy cough in the middle of the night and start to shiver, terrified of what it might mean. Don't flash to lab coats and thin sheets and bright florescent lights. Don't mentally list what to pack and for how many days and how quickly it can be done while lying in bed trying to slow a racing heart and dreading the next noise out of their child.

I try so hard to sink fully into the plodding rhythm of our full and happy life. I look forward to our dates with friends and waving goodbye to Simon as he rides away on the school bus and doing my yoga class in the mornings. I love our lazy evenings spent lying in the hammock, playing "surprise!" and reading "Hoppy Passover" again and again. Walking to Arizmendi on the weekends to charm scone-munching early-risers. Watching Simon's gorgeous little body romp around the backyard naked when it's warm enough to have some naked time. Blowing bubbles in the bathtub before bed. Simon's closed-eye smile as he fakes sleep when we wake him up in the mornings to go to school.

I do NOT appreciate being reminded that that can all be ripped away from us, even for a week like last winter, by a few goddamn coughs that could put us back in the hospital.

Give me some goddamn space, you dumb-ass disease.

Seriously.

I get it. I know you're there. Message received.

Just give us some frickin' SPACE to be normal parents without terror poking it's sleek, beady-eyed, needle-toothed head through the surface every time there's a little tremor.

Back. Off.

p.s. Simon seems fine this morning. Laura and I...a little rattled.

All A Parent Could Ask For

2011-05-28T22:08:00.000-07:00

It's 9:03pm and the little boy is squawking in the bedroom. This has been his practice lately and while we seem to have been blessed with sleep training having been done in the hospital two years ago, there seems to be a toddler phase of sleep training happening here at our house as of late.
As is our approach, I slip into the room and sit quietly by the toddler bed. My boy rolls over and as he is wont to do lately, begins the round two ritual of 'night night'.

"Hug. Love"

I put my forearm down the length of his body and lay my head down on the blankets that are bunched around his chest. My other hand slips underneath and rests sandwiched between my forehead and his beating heart just underneath the skin.

We sit quietly for a few minutes and as I move to come up for air he quickly brings his hand to the back of my neck and pulls me back down.

"Hug. Love."

We resume the position. I hear his breathing begin to slow and wonder when the regular stroking of the back of my head will stop as he falls asleep.

While I'm waiting I'm starting to hear something come out of the quiet.

It's the quiet in my head, but as clear as if it was the knob on a stereo being turned, I hear it.

"Pleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdie"

It's not as if I think this a lot. I'm sure compared to a lot of people out there I do, but given how much I used to think it during those first few months after diagnosis...really I hardly ever think it.

And certainly with so many more pressing things to think about these days- like what shall we do with three hours off, what will Simon bring home today from school for his art project album, what food shall we play with during therapeutic mealtimes, or lately, how long will this tantrum last, I hardly ever think about how this little boy's heart is so sick.

I think about other things related to that but not simply that.

But tonight there she was. Death was reminding me that while she sometimes looks so far away, waving us on as we pass her in our own little bizarre roller coaster/train ride, she's still keeping an eye on us.

There are other heart children that we know with Ejection Fractions and Shortening Fractions so much better than Simon's. Several of them really. Girls, boys, older, younger. They are sick and they show it. On ventilators, in wheelchairs, waiting for heart transplants.

There are even other children with numbers worse than Simon that are running and playing in ways that Simon has yet to even attempt. I don't understand it and expect that I never will.

But tonight at 9:08pm when all I can hear is "Pleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdiePleasedon'tdie," running through my head, Simon shows me that there is so much more.

The volume gets turned down again and we're back to me coming up for air.

One more round of "Hug. Love" and I can sit up as he lets me go.

As I'm getting up to leave he says it again.
"Hug. Love"

I'm afraid we might have to start all over again only as I turn back to the bed I can see in the dark that he is giving himself the hug and 'love' and I think there is nothing more that I could want at this moment in life.

Isn't this what all parents want?

I know that Simon will always get love from me AND I know there will come a time when I won't be the one holding him as he falls asleep. I won't always be there to hold him after something gives him an 'owie'. I won't always be there to administer the medications and schedule doctor's appointments.

But if I can instill in him a deep love of self and love of the world around him, then I can worry a little less as the independent 'do-it-myself' Simon continues to show up.

Right?

Fer sure. Totally.

No Problem.

Hah.

Food Therapy.

Don't judge. He gets all his fruits and veggies through the tube.

Loungin'

Twinsies.

Hugs and Love with Moses

Snuggles with Sophie

High Fives with PopPop

MM and PopPop with Simon and Sweet Pea

A Numbers Game

2011-05-23T21:29:00.000-07:00

Quick, how many people do you have to coordinate to get 2 people away for 27 hours to celebrate their 9th anniversary together?

"They're two, they're four, they're six, they're eight..." (a little Thomas reference for all our readers who must listen to that damn song incessantly)

Nope, keep going.

Ten.

That's right, ten.

I started plotting months ago and I lined up Simon's aunties Joan, Dre, Abby and Bianca and my Mom and stepdad (that's 6) to take shifts so I could whisk Laura away to Santa Cruz for an overnight.

Everything fell into place very smoothly, all systems were go.

T-1 day and the first call came in. Abby and Bianca had been battling a stomach bug all week and things were not looking much better by Thursday night. We did not need a craptastic bug at our house, so they were off duty. Enter our awesome babysitters Reagan and Pete (that's 2 more) who cheerfully volunteered to take shifts with him on Saturday.

They took Simon for Saturday morning, Joan and Dre took him that afternoon and everything was going swimmingly. We were having a great time in Santa Cruz, purchasing hats, kitchen goodies, eating our way through the Greek Festival, watching a bizarre street performer and then went to the hotel to watch stupid TV in the middle of the afternoon. Ahhhhh...this is what we had signed up for.

Hitting the streets of Santa Cruz

My new hat. Laura insisted I buy it. Within 15 minutes, I had gotten 4 compliments. It was a good buy.

The bizarre and beautiful street performer. Gotta love Santa Cruz.

Then... my Mom called.

My stepdad had an awful sore throat, was starting to cough and she wasn't feeling very well. It was time to call on our crew again. A quick call to Pete (and a consult with his roommates/our friends Mel and Tanner- that's 2 more) resulted in coverage for Simon for Sunday until 1:30.

Relieved that everything was lined up, we went out to a lovely dinner...

In the garden of the restaurant. Gorgeous evening.

Farmer Laura, by the chicken coop

The view from our table

Our lovely meal (first course anyway)

We went to the Boardwalk after dinner, but almost everything was closed. We did manage to watch some high school kids practically have heart attacks playing a dance video game. Made me tired just watching them. Also, took photos in the photo booth. Who knew it costs $5 now? Jeez, I feel old.

After a good nights sleep (I did wake up at 5:45 a.m. out of habit, annoyingly), we went for a Brazilian breakfast

Then Laura found what I like to call "Eden" aka Kiva Retreat House, a beautiful place with outdoor hot tubs, cold plunge, sauna, gardens, lawn, sunshine and relaxation.

Yeah, it's pretty much as awesome at it looks.

The best part? They allow kids! We're so going back.

Overall Laura and I had a very sweet and romantic weekend and were acutely aware of how blessed we were to a) get away at all and b) have such an incredible network of people who were willing and able to make it happen and c) have each other. Evidently, it showed.

At one point, a woman said, while passing us on the sidewalk, "you guys are such a cute couple!". That actually used to happen to us with some regularity in our early days, but we realized it hadn't happened since we had Simon. I guess harried parents wrangling a child isn't as heart-warming as two relaxed ones on a get-away. Or Simon is so dang cute he steals all the thunder and they don't even notice us when he's around. Regardless, it was a great reminder of the spark we have together.

So much gratitude, love and appreciation for our lives, our friends and family and each other...

No Turtle or Elephant I

2011-05-16T14:45:00.000-07:00

Simon is amazing. He took the bus to and from school today. To and from the school that he's just barely a month into going to. He got on with one lovely lady driver and came home with another. He's smiling almost the whole time (he was not so keen the first time with the seat belt). He said good morning to Miss Tina as he stepped on the bus and gave Miss Kimberly a jolly "see you tomorrow" when he got home three hours later. He is amazing. He looks people in the eye and opens his heart (which obviously needs to be a little larger than the average bears') and says "Love, Hug, Aaaaah." It's a very clear directive both for the person that he's saying it to as well as for himself. A deep reminder that it's a truly wonderful way to greet someone, that you know well or are just meeting. Assessments, graduation, birthday celebrations, new school, new teachers, new friends...so much has gone down in the last 2 months. Still, he creates 'home' wherever and with whomever he's hanging with. Just like a turtle but with so much more room than just for one. Amazing.

Oh, and have I mentioned that the boy turned three. 3 . THREEEEEE!

It's not like it was an overnight shift but holy heck, he's turned three with a vengeance. It's mostly reserved for me but Jaime's gotten a bunch of it too. Pushing back in all senses. Tantrums. Wanting what he wants when he wants it. Digging in. Digging in deeeeeeep. Bedtimes, nap times, walks. Stopping an activity. Getting out of the house. Making it down the walkway to the house.....you name it I think he's wanted to do it or not do it at any given moment. My boy is three. Terrible two's...puhleeeze- three is the magic number.

He's been yelled at by other kids, pushed around a little, had the TV turned off, been made to stay in his own bed, been strapped into a stroller, and simply had his clothes changed. Oh the drama.

But here's the thing. He's got the skin for it. He takes it and bounces right back when he's ready (or when the right distraction tool is used- it's a balancing act). Seriously though, he cried for an hour last night as Jaime (bless her heart) worked her magic with getting Simon to stay in his own bed. He's been climbing into bed with us for the last month+ and while he almost immediately falls into a sound sleep, Jaime and I do not and for the rest of the night are dealing with a horizontal child and/or sharp little kicks to the ribs or neck. Not so much fun.

So last night, I am a huddling shaking mess on the other side of the bed as the child screams and whether it's biology or I'm just a wuss, it was one of the hardest things I had to do not to pick him up and just pull him into bed. It's much easier to believe in the moment that stopping him crying is so much more important than another awful nights sleep.

That said, after an hour of settling and ramping up again, the child slept. Soundly, without a peep for the next 6.5 hours, in his own bed. How many more nights of this will it take? We'll see.

But there he was at 6:20am chipper as always ready to take on the next big adventure with morning hugs and love and snuggles. No attachment to the rage and frustration that he was feeling just 6 hours before.

Like an elephant's thick skin, he's got the most amazing ability to let the hard things bounce off and like an elephants bonding capacity, Simon knows how to make incredible connections with the good ones.

Aside: It just about slayed me when as we're walking up to the bus this morning I say to him "Simon, you're about to take the bus for the very first time!" and he says "Shehechianu!" which is the Jewish blessing that essentially gives thanks for new and/or special occasions (we had talked about it days earlier!)

But the title of the post says no turtle or elephant I and while I love to sing the praises of my son, oh lordy I am uber jealous of him, especially today. Except for how slow those two move, I got nothin' like the aforementioned qualities. My skin feels rice paper thin and I feel a thick grey cloud in between me and everyone around me.

Walking around the lake today and even Wham's Freedom 90 couldn't lift my spirits. I just feel the funk. Simon's life is changing so drastically and seemingly wonderfully.

I can't seem to catch up. Mine isn't. I even have a three hour chunk to myself 4 out of 5 days a week and I feel mired in the thickest of pea soups. I still feel alone. I still worry about his heart. I still think about germ exposure. I still have to make blended food and order meds.

I can't quite get past that yet to get to a yoga class or make it to the gym. I don't even feel connected to myself so it makes total but sad sense to me that I don't really feel connected to anyone else. That plus the nori seaweed thin skin and I'm feeling a little like a silkworm. Thin skin, slow moving, hungry all the time (she said polishing off a delicious Bit O' Honey), not often seen but damn if what I produce isn't one of the most spectacular things around.

Riding the bus

The day we forgot to shave before school

Helping Mommy cap 38 years

Hive Five PopPop!

The Grandparents meet Sweet Pea

Djaffar teaching Simon chess (or is it vice versa?)

I'm the one on the right

Thanks for tuning in.

OMG

2011-05-02T15:17:00.000-07:00

38. Simon's BNP is 38. This is the # that measures the hearts distress. 0-100 is a heart not in failure with 0-30 being a healthy typical heart. It was 3000 at it's highest. 30 fucking 8!!!!!

I go away for one night...

Post trotting

38. That also happens to be the age I will be turning on Sunday. 38. My new favorite #

Another First

2011-04-25T12:17:00.000-07:00

At the tender age of 3, Simon has earned his first book dedication.

Seriously.

The backstory:

Laura and Simon and I walk up and down Lakeshore Avenue near our house at least once a day. We have become friendly with many people on that street. We often nod, say hi, wave and keep going. We will occasionally buy a coffee or cookie for the regular homeless guys, chat with the fellows playing chess, give hugs to the cooperative bakery workers. It usually ends with that.

However, every once in a while, we actually get to know folks.

We started becoming friendly with one Lakeshore regular named Djaffar about a year and a half ago. Djaffar practically lives on the bench in front of Peet's Coffee. He's a fixture. Whenever Djaffar saw Simon he would give him a big wave, a big hi and after a while would come in for a "high five". Djaffar was clearly smitten with Simon, as so many people are.

I always thought it was sweet AND pretty unusual that a man would be so interested in and engaged with a small child. All of my American training to be afraid of strange men would kick up and I was always friendly, but kept a certain distance.

Then one day, we stopped to say hi when Simon was getting a tube feed. Djaffar noticed Simon's feeding tube and asked what it was for. We told him the Reader's Digest version of our story and could immediately tell how moved he was by Simon's tale. From that point on, his affection for Simon was clearer and clearer. He started getting him presents for Hannukah and his birthday. He would shout hi from across the street. Simon loved seeing him. They clearly had a bond and we began chatting more with him when we would stop to say hi.

A few weeks ago, Djaffar said, "Hey, I wrote a book and I dedicated it to Simon". I wasn't really sure what to think. Our sweet friend is prone to hyperbole and I really didn't know much about him so I think I said something like, "That's so cool! Thank you!" thinking he was dedicating some amateur writing project to Simon.

Then last week, he gave us an honest-to-god published copy of his book.

And there, in black and white, is the dedication.

Of course, Laura and I both started crying when we read it.

I was called for jury duty on Tuesday and brought the book, Donkey Heart, Monkey Mind, with me. I finished the book by the end of the day. It was stunning.

It tells the story of Djaffar's life in Algeria and the politics of North Africa. It chronicles his undying optimism that he could actually get out of his home country and live a full and happy life. It graphically describes the torture he endured in the various prisons he ended up in as he worked towards his goal of freedom. It details incredible kindness and generosity of spirit.

It's categorized as a fictional novel, but it was clear to me from the little I knew about him this was really about his life. He later explained to me that it was easier to call it fiction than to have to defend the veracity of every single detail of events that could never be proved to another person.

After I finished reading his life story, I realized that Djaffar and Simon are brothers of the heart.

This is the note I wrote to him:

"I love your indomitable spirit- the wiley, scrappy, fierceness that kept you moving and trying and trusting as doors closed and chains locked. I also love your willingness to believe in the goodness of every person you met, long after most people would have given up on humankind. So many people become bitter and hard and brittle after trauma, but something burns in you bright enough to shine through the ashes of your past. That capacity is a truly rare thing. I think that light is the thing that you recognize in Simon. You both have seen more pain than anyone should but are thrilled to be alive, to be here on this planet and to have people to love."

Knowing Djaffar's story gives me hope that despite all the painful, scary, tortuous things that have happened to Simon (and may happen again) , he now has a role-model for how to live life fully, keep his arms open wide and love with everything he has.

Thank you, Djaffar.

Birthday/School Update

2011-04-13T10:46:00.000-07:00

On Saturday, Simon turned 3! We had a delightful party in our back yard, complete with our very own bounce house that we now own thanks to Mamaw. It was quite a hit and I think we'll be party central all summer. Laura and I have both noticed that we have some intense feelings that come up on Simon's birthdays. It is a reminder of how far we've come and a reminder that there were times we weren't sure we were going to celebrate more birthdays. I think it may always be bittersweet...

Excited about birthday singing and birthday candles

Having fun on the new bounce house

After looking at three different special day classes, we are 99% sure we found the right class for Simon. It happens to be at Montclair Elementary, one of the best schools in the Oakland School District! We are having all sorts of conflicted feelings about the institutional racism we have been privy to, after looking at 3 very different schools. More about that when we can slow down for a minute.

The short version is that it looks like Simon will be in a great class with kids pretty close to his level of development in a beautiful and safe school. He also will qualify for "Extended School Year" through the district so we won't have to scramble to find supplemental programs for him when school ends in June and he will instead get to continue his learning through the district over the summer.

He was supposed to start his new school this week, but he's been sick since Sunday afternoon, so we're hoping for tomorrow (Thursday). Unfortunately his new school will be on spring break next week, so he'll get 1-2 days and then no school for a week. Maybe it will be a nice, easy transition to do a few days and then have a break. It's what we got.

Simon continues to adore his hippotherapy (therapeutic horseback riding). Like, adore:

We have so much more to say but things have been really busy and intense. More to come when we can catch our breath...

Big Changes at Chez Fitch-Jenett Part Deux

2011-03-28T21:03:00.000-07:00

What Jaime said...And, over here in the internal world of the Fitch, it so much more complicated and likely why I have not written yet on this monumental marker that is coming up.

Simon is turning 3.
If you want to check out what happened last year, go here ( Beginning )
It's not an easy time for me. To have it coincide with so many other beginnings and endings, well, I feel down right exhausted.

The IEP was not an easy process in and of itself. Full of contradictions. It was so great and heartening (hah) to watch Simon be totally himself during each and every assessment. He did such a perfect job of showing folks what he could and couldn't do...all with his own particular brand of enjoyment.

And good on them (all of them!!) for listening to me tell them what they might not see during their one or two hours of 'assessing' my child.

There it was, all of it, right there in black and white in their reports. How lovable and personable and resilient and well-cared for, and steady and secure this little boy is. How amazing it is that he can count to ten in three languages AND what a large vocabulary he has! And, oh yes, how he is delayed here and delayed there and delayed most everywhere.

{Most amusing is where he lands on the self-care/eating scale- 1 month old. What one month old gnaws on a BBQ rib bone with spicy BBQ sauce remnants or asks for Thai green curry by name not to mention licks copious amounts of straight up cumin and paprika right out of the spice jar?}

Delayed and very medically fragile.

It was so hard to read all of the ways in which the school nurse (bless her heart- hah) made sure that Cardiomyopathy was laid out for every person that would read the IEP; how serious it is, how it can result in hospitalization or worse, the symptoms, the invisibility of it for some kids, the weakened immune system, blah blah blah....all of it right there on paper laid out neatly in organized paragraphs with links here and a statistic there. And thank goodness she heard me when I said that it's one thing to look at Simon, listen to him talk, feel his arms around you, see the light in his eyes, the joy in his smile, and believe that he does in fact live with this very serious, sometimes fatal, always medicated, up and down, not very well understood, stooooooopid fucking disease. She got it.

Sitting around that table listening to all the assessors and administrators give their reports, it was a true blessing (that I know from experience not every family gets) to feel like every single person at the table got a very complete picture of Simon.

Where he needs support, for sure. His strengths, yup, got 'em. But, they also seem to get something else. The mind bending, paradoxical, deep teacher that Simon can be, in how he lives with contradiction.

And so looking at what he was offered, what he will receive, what we will continue to push for (Part 1), I feel that we are so on track it couldn't have gone much better if I got to puppet master the whole thing myself.

Still, taking him to all those assessments, seeing so many of things that he can't do (over and over), filling out those awful developmental questionnaires, explaining over and over again that how he looks and acts belies the serious (and uncertain/unpredictable) nature of Cardiomyopathy, I began to simply take in the fact of what this transition means. I will no longer be with him.

I won't be with him.

I know it's only for 2.5 hours a day (4 days a week) plus or minus some time when he starts taking the bus (which he has already expressed interest in). Still, that's more time than we've ever had apart before. Who will help him up when he falls down? Who will notice when someone has taken something from him? Who will notice when he's taken something from someone else and teach him about sharing? Who will notice if he's playing by himself?

And then the parenting 'plus' moments. Who will notice when he's nauseated and needs to be reminded to breathe through it? Who will notice if he's sweating and or breathing hard? Who will help him when he gags or throws up? Who will be there?

I know all the answers and I even think I have a sense of what's rational thought versus irrational. I know there's risk involved and I know that this is what's right for him. I also know that it's more than likely that he will handle this transition so gracefully. It still doesn't change the fact that I have been with Simon for 3 years. I have been his Mommy, caretaker, nurse, advocate, teacher, Speech, OT, PT, Feeding therapist, and playmate for three years. THREE YEARS.

Yes, other people have been there for sure. Jaime of course, Dianne, Aunties, Reagan (babysitter extraordinaire) AND that's not the same as being the constant Monday through Friday, every appointment, every Parent Infant Program, every wake-up, every nap, every med, every tube feed, every laugh, every change of clothes, every every.

I'm going to miss him. My life is going to change so much.

And not.

The reality is that I will likely only have one and half hours to myself. Between the drop off and pick up and the minutes of transition in between, it's barely enough time to come home, grab Roxie, and make my way around Lake Merritt at a run-walk (get your body back) pace.

Another contradiction.

I'm having a really hard time holding the truth of what's coming because the truth is I have no frikkin' idea AND I have to say I'm not that great with change to begin with so...what's happening?

Let's recount.

Simon is going to school.
Simon will be cared for by people other than me.
I won't be there.
He will get all the services that he needs.
I won't be there to see what they're doing.
It's 2.5 hours every day (except Wednesday when we have Feeding Therapy in San Francisco).
I will have 1.5 hours, 4 days a week, after drop off and drive home, minus time needed for pick up.
Simon is going to school.
He will wear a pack back that contains his pump, tubing, and blenderized food in it.
Simon will wear a back pack! (too cute visualization there).
I will miss him.
We will still have 6.75 hours a day together after school.
Simon will have fewer appointments throughout the week. (Unclear how many but we're working that out with OT and PT through our insurance).
I will miss him.
I will try and spend 1.5 hours a day doing something that is good for me.
On April 7th, Simon will graduate from PIP.
On April 9th, he will turn 3
On April 11th, he will start his new school.

I can't quite hang with all this change. I feel like my world is looking a little like some of the dreamscapes from the movie Inception where entire city blocks curve up and over like a tidal wave or the center of gravity keeps changing and alternating depending on the people or four walls around me.

That, and the endings. We have one more session with Cece, our beloved speech therapist (Simon had less than ten words when we started- just last June!!!), four more sessions at PIP, four more parent support groups for me, maybe one more home visit from Marybeth.....all these people that feel like they've been in our lives for so long! I hope that some of those relationships continue, I know some will and some won't.

I literally just took a deep breath and tugged the short hairs on either side of my head without realizing it until I heard Reagan laugh at me.

Change is hard. Big Change is harder.
Letting go. Riding the wave.
Pulling hair (not out. More like in a massage sort of way) apparently helps.

I'm sure there's more to come.

..................
Jaime and I got 20 minutes to connect tonight before dinner and bath time, etc. We talked about both feeling this deep sadness, grief even. Simon is about to go out into the world in a whole new way and it is without us. He will make friends, have new adults in his life that will offer support, learning, comfort, and love. It's not I like think he's going to replace us as his primary people but more that we are having to share him.
For sure it will be a splendid thing that we unleash unto the world. I mean c'mon, the world at large could certainly use and only benefit from a little more Shimmy La in it. But I guess there is this little wonder in my head "there's enough to go around right?"

All signs point to yes. He is love straight up.

On that note I have to share simple deets from our cardiology visit today.

No change in function from a month ago (not surprising!) but there was a change in the nature of the visit (the last three having being pretty rough in terms of how the Shimster handled his ECHOs and dr's visits.)
Dude was a dream. No fussing, no squirming AND amazing hugs and thank you's to all of his peeps. The ECHO tech, the one from last time, the admin woman, the EKG tech, HunkyPants (who got a resounding 'Rosenfeld!!' when he passed by the door the first time), and the resident who did his blood pressure!
Little man was straight up love today. If he can do that at a Dr's appointment then I am not worried (99%- ok?) that he has more than enough love to go around.

Last image:
Last night Simon was newly stripped down for a pre-bedtime bath. I made some benign comment about his bottom. Probably something along the lines of "what a delicious tushy you have!"
His reply "Tusheeeeee. Hug it...............Love it"

Hug it

Love it.

Big Changes at Chez Fitch-Jenett

2011-03-28T11:13:00.000-07:00

We had Simon's Individualized Education Plan (IEP) meeting with *8* reps from the school district and Simon's current Early Intervention Program last week to review what folks found in their assessments of him, what they thought he would need to address the findings and what the district would provide. It was a fantastic meeting- sort of the model for how an IEP should go- and it was hard. We (my Mom, Laura and I) sat for 2+ hours listening to these smart, observant, caring people articulate all the ways Simon is delayed and all the creative and brilliant ways he compensates. It's intense to have your child "scanned" as thoroughly as he was.

He had the following assessments:

Status 2 (to check for mental retardation and autism)
Occupational Therapy
Physical Therapy
Speech
Psychological

The findings varied, but the bottom line is that in some areas Simon is only about a year delayed and in other areas, he's at the level of a *15* month old. Uniformly, every assessment commented on what a sweet, happy child he is. It was almost comical to see almost the same words over and over in each assessment. And quite lovely.

Here is what the district has offered:

a special day class (yea!!!) with 6 children, a teacher and 2 aides (yes, that's a 2:1 adult to child ratio!) Monday - Friday for 2 1/2 hours
extra Occupational Therapy once a week
extra Speech Therapy twice a week (with a male speech therapist- yea testosterone!)
Physical therapy consultations as needed
a site visit from a district nurse every month to check in to make sure things are still set up for him medically (handwashing protocols being followed, etc).
All the adults will get trained on how to do Simon's tube feedings.
a bus to school once we think he's ready.

Laura and I are thrilled.
And a little bit terrified.

We are handling these upcoming changes...moderately well. I think we're both struggling with what it means to hand over our child to other people, even if is only for a few hours a day. It feels like this is the beginning of a much bigger process, of Simon becoming ever increasingly independent. This is, of course, hard for parents of typical children, but I think particularly hard for parents of kids that are considered medically fragile.

Suffice it to say we're having some big feelings at our house. We haven't quite figured out how to talk about it yet, so it may be a little bit until we can articulate them here. In the meantime, we wanted folks to have the nitty-gritty since we had the IEP.

We're going to visit the school on Wed to make sure we think it's appropriate for him and then, assuming we give the green light, he'll start April 11th!

The IEP Commeth and/or A Change Gonna Come

2011-03-23T06:38:00.000-07:00

Tomorrow is the IEP (Individualized Education Plan) meeting for Simon.
This will change everything.

Longer blog to come.

Today, enjoy a video & pics from Simon's first therapeutic riding session.

I'm Ready!!!!

Vroom Vroom!

Catching bean bags

Giving Sweet Pea some love

Just look at his face

Standing up in the saddle (doing that while moving is next!)

Standing up on his own!!

Putting the brass (or blue) ring on

30 minutes into it and still raring to go

Sweet Pea gets some treats after a lesson well done!

Neon Spandex

2011-03-17T22:25:00.000-07:00

Nobody (except maybe morticians) likes talking about death. Certainly no one in their right mind likes thinking about children dying. Laura and I are no exception.

But sometimes we have to.

And we know that bringing it up makes people, probably even you, uncomfortable. Please hear me out as I explain why we have this most depressing "habit"...

From the outside, it may seem like we spend an inordinate amount of time talking about the threat of death from Cardiomyopathy. It might look like we're just wallowing in gloom and doom instead of looking on the bright side. This can be especially confusing when Simon seems to be doing great and we're still talking about death.

There is a reason for this.

Laura and I are two of the most optimistic people I know. The dictionary defines Optimism as " hopefulness and confidence about the future or successful outcome of something; a tendency to take a favourable or hopeful view". I'd say this definitely describes us.

We are also, what I would call, Down-to-Earth, which the dictionary defines as "practical and realistic".

Living with Cardiomyopathy means that our optimism must be tempered with what is practical and realistic, in order to maintain sanity.

We recently got more information from the Pediatric Cardiomyopathy expert, Dr. Towbin. A few months ago he reviewed Simon's echos and diagnosed him with something called Left Ventricular Non-Compaction, which is basically a more refined description of the anatomy that is leading to the poor heart function. Laura talked to him a week or so ago and was able to ask him specific questions and get more information. Dr. Towbin explained that kids with LVNC, more than other types of Cardiomyopathy, have a tendency to "go up and down" with their function. It's great that he's doing so well right now, he said, but that we can never let our guard down. And no one should ever try to wean him from his meds. He mostly echoed how we're approaching this disease (enjoying the good time right now but knowing things could get hard again) and suggested a few more tests we may want to consider.

It was both comforting and sobering to have our gut feelings about how this might look for the rest of our lives confirmed by the world expert. We've heard of kids that were deemed to have their cardiomyopathy"resolved", told they had normal function, were taken off all their meds and then tanked abruptly and either died or needed heart transplants. I now wonder if those kids had undiagnosed LVNC.

When we mention this possibility to people I often get the distinct sense that they're thinking, "Okay Debbie Downer! Why don't you just look on the bright side and enjoy that he's so much better?". This is particular true for people who have said, "How great that Simon is so much better! I bet you're relieved" and gotten our somewhat depressing explanation above as a response. I understand that they're trying to be helpful and positive. We don't want to make people feel bad. AND, it feels important to convey that we're still living with this disease, it will never be over and it's not that we're just killjoy pessimists. We are enjoying this time of improved heart function and hope it will last forever, but we don't ever want to be that family, knocked on our asses by that sleeper wave again.

When I think about what Dr. Towbin told us, I combine my "optimism" with my "down-to-earthness" to crystalize into this:
I hope for the best quality of life possible, as few "lows" as possible, and that Simon does not die an early death from this disease.

I can not hope for a day that Simon is not on medications or a day that I can feel relieved that we are out of the woods. That day will not come. It's not a realistic goal and to pine for something I will never have is a recipe for madness, not happiness.

We are part of a listserv through the Children's Cardiomyopathy Foundation for parents of kids who have this disease. There are a couple hundred families on it. We email each other constantly, checking in about how our kids are doing, asking questions about medication side effects, or funny symptoms or suggestions for how to ask our doctors hard questions. We share good news and hard news. We know each other. We are a community.

Every year a handful of children from this group pass away but Friday night I got news that * three* children from our Cardiomyopathy listerv had died within about 36 hours. This many, this close together is pretty unusual. As you might imagine, it's also pretty disturbing.

Someone close to us was with me when I got the news. She saw that I was upset and observed, gently, that Laura and I seemed to focus a lot on the death and dying part of this disease. I could tell that she was speaking to me as someone who loves us and doesn't want to see us suffer and wasn't trying to shut me down. But I still had to resist the urge to throw something at her.

I struggled to explain that when we talk about that grim aspect of Cardiomyopathy, we aren't trying to be dramatic, we aren't trying to shock people, we aren't trying to get sympathy. It's the threat we live with pretty much on a day-to-day basis. She posited that we all live with the threat of death every day, that any of us could be hit by a bus. I inferred that she meant that we can't live productive lives worrying about death all the time, which I actually agree with.

But...this is different.

As one parent on our listserv said, "yes, any of us could get hit by a car, but with Cardiomyopathy it's like we live in houses with a front door that opens onto a freeway". I'm not worried about Simon dropping dead out of the blue. I'm worried about the delicate balance we've managed to gain over the last few years being tipped in an instant by something minor: a cold, a fever, something mildly concerning. It doesn't take much with our kids to knock things off kilter and we can suddenly lose all the ground we gained. I'm afraid of our lives being ripped asunder once again without warning, of the bug that will knock out all his reserves and leave us fighting a long, hard, awful, painful fight back in the ICU with the spector of death looming over us.

Here's the analogy I came up with:

I said, "It's like we're gay men living in the 80's".

She stared at me blankly.

I realized she might be confused since we didn't have any neon spandex or cocaine in the house so it definitely wasn't the 80's and we have a severe shortage of testosterone or handlebar mustaches at Casa Fitch-Jenett.

"What I mean to say", I continued, "is that we live in a community that is staring death in the face every day, much like gay men in the 80's facing the AIDS crisis. The children of our friends on the Listserv are dying from this disease. This is not something that "could" happen or is happening to people "out there". It's happening to people we know, in our circle. And we have the same disease. It's likely that it could happen to us".

We live with this disease every single day right in front of us, worry about germs 10x a day, listen for a new cough every night, check for a sweaty forehead during naps, communicate daily with other parents who are also living with this disease, have relationships with parents whose kids are dying, pray for kids we *know* who are hanging on by a fingernail. There's something about warding off evil day-in, day-out that makes it feel a little different, a little closer than it is even for people who are so tightly in our lives.

It's so important for us to have people like this who can hold a focus point outside the storm, who can remind us that there are chirping birds and sunny skies out there. AND, it's also important that we keep a firm grip on a harsh reality so that we aren't caught off guard and spun off into the skies.

So sometimes we're going to focus on the hard stuff. And we need to. It's our reality. It may not be pretty, but it's what we got. Thank you for bearing with us when we do. And if you struggle with this and try to tell us not to worry about Simon when we think we need to, we have a new code phrase that we will utter with love.

"Neon spandex".

Kinda catchy, right?

Mother of the Year

2011-03-08T13:13:00.000-08:00

I thought I'd let the dust settle from Laura's post a little before posting again. Some because I wasn't sure exactly what I wanted to say, but mostly I wanted her to get the limelight for a while. She doesn't get it much these days. Laura doesn't get much public or direct recognition for this incredible thing she is doing, this complicated and stressful raising of our son. Mostly she gets work and I get the glory.

I'm out in the world more, have more time to be connected to the internet, etc. I'm the one who gets emails and has people tell me to my face how much they love our blog, how inspired they are by what "we" are doing, how amazing they think "we" are. Each time, I try to stop and remind them how much of the credit goes to Laura, but it doesn't erase the fact that I got to hear it first.

And it's just not right.

Laura has many admirable qualities, but shameless self-promotion isn't one of them. That's where I step in.

Laura has an insane job. She typically works from 6 a.m. to 8-10 p.m. Without breaks. Without feedback. Without coworkers. Without pay. In hazardous conditions (heavy lifting, toxic waste, psychological distress). Without workers comp.

Her job duties include social work, nursing, pharmaceutical distribution, advocacy, chauffeuring, complicated mathematics (to determine calorie counts in blended food), operating heavy machinery, operating highly specialized medical equipment, preparing a specialized diet, translating medical information into plain English, occupational therapy, feeding therapy, physical therapy, medical research, precise time management, cleaning...I could go on for another 3 pages.

And she still finds it in her to be an amazing and present wife, sister, aunt, friend, daughter, niece, cousin, daughter-in-law...

Why does she do this job that none of us would ever voluntarily choose?

Because it needs to be done.
And because she loves us.

I don't know about you, but I think I'd start to crack up after 3 years of this. Laura, however, is maintaining her sanity better than anyone I could possibly imagine in this situation.

But we need help.

I need (and Laura too, though she'll never admit it out loud to you) for people to give her affirmations. Specific ones. Not, "you're such a great Mom". Like, specifically what she is doing that is making an impression on you. It can be here in the comments section, in direct emails, next time you see her, little voicemails, notes in the mail. It can be related to how she's taking care of Simon or it can be what she brings to this planet as an individual.

And I'm not talking about this being a one-time deal. This is what we need on an ongoing basis. More than food, more than birthday presents, more than any of the other things you can think of that you might try to do to help. Focus on Laura. She might squirm and try to shift the focus away from herself as the humble, slightly shy person she is, but don't let her get away with it. Hook her with a tractor beam of love and get her good.

When you're with her, ask her how she's doing. And listen. Encourage her, in whatever way you can, to talk about how SHE is doing, not how Simon is doing. Doing something almost 24 hours a day makes it hard to remember that you exist outside of whatever it is, or that you're good at anything else. Reminders of what those are would be great.

Sometimes it feels like she's this bright, bright light hidden under a bushel. Sometimes the bushel is mounds of laundry and bags of blended food and fist-fulls of syringes. Sometimes it's the errant wave of crushing depression that comes with the territory we live in. I know the song says that she's supposed to "let it shine" herself, but as someone who adores her, I think it's also my job to help the process along a little.

I'd like to vote Laura Mother of the Year and I'd love to hear why you agree with me.

p.s. If you hear of any opportunities to really vote her Mother of the Year, especially if there's a fun trip she can go on or feature story of her or some other totally over-the-top reward, by all means, share :-)

A few of my favorite pictures of my dear wife

In repose

Hunka hunka burnin love

My personal favorite. She looks demented.

Just about the sweetest thing ever

Just sort of says it all, doesn't it?

Off Switches and Open Doors

2011-03-02T22:08:00.000-08:00

Where is mine? Where is my off switch? I feel like I don't have one when it comes to life these days. Unless I am physically away from Simon (and even then) I feel like I don't ever really get to let down, turn off, stop.

It's a problem. A big one in general, but I'm feeling it more these early days of March. It started to amp up this past weekend. Even with Jaime around, ready and willing (but unwittingly un-awares) I wasn't able to delegate and let go of some of the M-F details that I take care of. I couldn't help myself or my internal clock that tells me it's time for meds, time for a feed, time for homeopathy, time for food play, etc.

And that's how the week began and has progressed since. I am on a terrible auto-pilot. It's to the point that I almost cried when it was my Tuesday 'break'. I had no idea what to do with my 2.5 hours and seriously contemplated staying home (once Simon and Reagan went out to the park) and getting a jump on tomorrow's blended food prep, laundry loads, and calling pre-schools to see if they might be a good fit.

An internal slap to the face and I got out the door to see a bad movie.

But I am feeling a little in trouble here. Very alone and beginning what feels like one of the hardest months thus far. It feels like I don't even have time to reach out, make plans, problem solve. I am at the grindstone and I have to pace myself not to hit bone before this month is over.

*grunt* Laura hard like stone, but wearing a little thin *grunt*

Simon has his IEP (individualized Education Plan) meeting scheduled for the 23rd of March. At that meeting we'll know what sort of services, if any, our school district will be providing once he turns three. Best case scenario is that they will offer him a 5 day a week class that will support his language delays and offer additional occupational therapy within that class time. It would be 2 hours and 45 minutes every day, staffed by trained and credentialed teachers, with no more than 6 students per class.
The very worst case scenario is that they offer us nothing. It's unlikely but not impossible. In between is a scenario where they offer him services in the form of weekly one on one speech and OT sessions but not a classroom- more shuttling for me but not 'nothing'.

However before we get to that, we have 4 assessments added on to our already jammed packed regular schedule PLUS three additional appointments for feeding therapy to try and capitalize on the steps the little man has been taking lately in regards to eating.

It's a lot. It's a lot of minutes in the day and miles in the car and therapists and clinicians and forms and exercises and developmental scales and shit like that. A lot.

I feel incredibly alone. Except for the one person that I absolutely love being around, who gives so much back....but is not the best conversationalist, Simon Lev, I am alone.
For the most part, throughout the day, it's just Simon and I.

When it comes to Simon, I have all the energy in the world, who needs and off switch?

Me. I really need to find it. I'm struggling and I can't even take care of myself when I am given a moment.

There is so much happening these next couple of weeks (not to mention what's been happening for the last 2.5 years) I feel myself completely lost in it.

Yes, there's the IEP and what will come of that BUT there is also each assessment and what closed door we come up to with that.

Will his PT, OT, Psychological, Cognitive and/or Speech & Language assessment bring up an additional diagnosis? Will his delay in any of those areas turn out to be not just a delay from his long stay in the hospital and fighting for his life when he should have been learning to grasp, roll, speak, ask, etc......but in fact turn out to be a diagnostic code, a long term learning difference, a something instead of just a global delay that can be chalked up to an early childhood medical trauma?

We will walk up to each of those possibilities, Simon and Jaime and I and we will knock on those doors. I'd love for the knocking to go unanswered. That door will stay shut. That one too.

Until we have knocked on every door in our assessment plan and no new labels or codes get passed to us from those doors. Of course Simon will remain Simon throughout. He will say "I love you. I miss you." to each of the people that he meets (that he enjoys) and I will remain his mommy who puffs out her cheeks to be a pufferfish when he asks.

Still, it's a lot to add to an already full plate. A lot of unknowns. A lot of surrendering and waiting. A lot of possibles. I'm feeling quite blanketed by all of it and not in a cozy way. It's heavy. It's March. The 4th, the 10th, the 15th, the 16th, the 23rd. Blech. Throw in a cardioloy visit on the 28th, plus everything else, what do you have? Blech Blech and just a little more....blech.

April brings my favorite Jewish holiday, Passover. I will be so ready for an exodus from all this.

And then, a simple but profound moment from tonight:

I am putting Simon to sleep after a bath, pm medications, a tube feed, and several books. He is lying in bed listening to my sleepy version of Hokey Pokey holding my arm next to him like a teddy bear. As the song winds down, I lean in for a kiss when he grabs me from behind the neck with one hand and begins to repeat over and over again "Thank you Mommy, thank you Mommy, thank you Mommy."

He is looking right into my eyes and signing it with his other hand. It's not the correct ASL sign for thank you (which he knows.) Instead he is putting his left hand over his heart and then extending it out towards me. Over and over again. "Thank you Mommy, thank you Mommy." I started by saying thank you back. I do it all the time.
"Thank you."
"No, thank you"

That wasn't what he wanted though. It was subtle but I could tell that he wanted something else.
I braced myself.
Paused.
And then said the harder thing.

"You're welcome Simon."

I think it went on for at least a minute. One of the best minutes of my life.
"Thank you Mommy."
"You're welcome Simon."

Over and over.

And I know that I'm not alone. That I can do this. That he is more than perfect and like Simon tells me sporadically throughout the day....... things might just be "totally awesome."

Here are some visuals:

I think we might just be in trouble

Yes, he picked this outfit out all by himself....to wear out.

A new style has been born

Working on a new smile

How 'bout this one?

Maybe this one?

These boots were made for walkin', that's just what they'll do.

Thanks for coming along

Like The Weather

2011-02-23T15:57:00.000-08:00

I meant to sit down and write several times over the last few weeks. Really I did. Alas, we have been super busy with appointments, assessments, meetings, barfing, and feeling just like the weather here in CA.

For the last few weeks we have had heavy gray clouds, mixed in with torrential rain, and bitter cold (hush you Easterners, 43 degrees is really cold here).

And like the co-dependent person I have become, I feel like my son, and evidently the weather as well.

Up until this past Saturday, Simon has been battling the barfs, the bugs, and the 'bummers'. He's had a cold for what seems like forever and the mucus has just thrown him way back in terms of gagging and throwing up. This does not make for easy days and of course less than zero headway when it comes to food; smelling food, seeing food, talking about food, and certainly not putting food anywhere near his mouth. It's been a really rough time , really since he's been sick with pneumonia back in late December.

And, that's been really hard for me. The contrast between where we were at just before he got sick- with the interest, and chewing and swallowing...THAT was awesome!

To have been thrown so far back in what feels like this last area of challenge was harder on me more than anything. Simon is Simon. 30 seconds after he throws up he's fine. He's back. He's ready to move on/try it again/laugh it off.

I have so much to learn from him. And I can only hope/pray that he can hold on to it as he grows.

This little man who has been through so much....knows how to live. He loves life. He hugs people that he's just met. One simple positive interaction with a stranger and he's ready to bestow on them his new favorite phrase. "I love you. I missed you."

Yes, I know he's only almost three, his language is delayed even younger than that, and we're beginning to see some interest in other people's reactions to such things.... but how lovely is it that meeting a new person and loving them is that simple.

How lovely is it that when he feels bad or sick he is right in it AND the moment that he feels better, he believes that the moment has truly passed and can get on with the good stuff.

How nice for him.

I mean that in both ways. Really, how nice is it for Simon, the boy who has endured more discomfort than any one person should have to endure in a lifetime, to be able to have that skill and stay rooted in the 'feel good' times.

And...

How nice for him (dripping with sarcasm an jealousy) that he unintentionally points out to me over and over again that I am still working on this. That I hold on to the barfing/time spent cleaning up from yesterday and feel the weight of it today, spending energy on whether or not it will happen tomorrow.

I know it's a beautiful piece of early childhood development and think Simon's got it in a deep way.

It's my hope that I go on learning it from him and as well I can, mirror it back to him as he tries to naturally grow out of it...the little stinker.

And, like the weather, Simon, and therefore I, have turned a corner. On Saturday the sun came out and so did Simon. No, he has not proclaimed any new sense of self or orientation but the boy is back in a way that we haven't seen since his bout with pneumonia back in December.

He is talking up a storm, making new faces (think Dana Carvey crossed with Jim Carey), saying new phrases (my personal fave is "hold my hand") and ........................EATING!!

Yes, we've picked up where we left off. Almost exactly.

It's like the last 7 weeks never happened and he's so excited about putting food to his mouth and even trying to chew and swallow. Yellow curry, black beans, squash, pasta O's, Salsa, spicy spaghetti sauce, BACON!!!

I am beyond ecstatic. Like the weather outside right now I am feeling the clear skies, the sweet snap in the air, and the sun warming everything. Like Simon I am feeling in the moment, not needing to hold on what might be coming or what has just transpired. It's like some sick Air Supply soundtrack is playing. This is so much better (for everybody) than the Morrissey soundtrack of the last few weeks, and I don't even really know Morrissey's music that well but wasn't it uber depresso?

This is a great way to enter into one of our most interesting months yet. March brings an OT, PT, Speech, and developmental psych evaluation along with observations and the IEP meeting that will decide what services Simon is eligible for when he turns three.

Developmental, medical, financial, it's all in the mix.

So, not unlike another 80's pop reference I do feel a little like I am "living in a powder keg and giving off sparks" but more like Fireworks ala Katy Perry.

That's right, I just brought it to the here and now.

Baby you're a firework

Simon and Manav...swinging at FairyLand...

the only time I'll be able to get away with a caption like that.

A boy, his dog, and a wicked deep puddle

A boy, after a stumble in said puddle

Hunting in the wild

<3 <3

Good Grief

2011-02-08T15:18:00.000-08:00

I don't often drive westbound on Hwy 24 because my regular driving doesn't take me that way. I don't avoid it and certainly have driven it more than a couple of times since that fateful turn around almost 2.5 years ago. That's the route where my Dad and I were coming home from lunch with Jaime, on our way to baby swim class, where I first heard Simon wheeze and decided that it would be best not to put off going to the pediatrician (back in Walnut Creek).

That's where it all started, the exit for Telegraph Avenue off of Hwy 24 (then ER, chest x-ray, life changing diagnosis, ICU, etc etc). One turn around and my life is changed forever.

Today I ended up driving down Hwy 24 as Simon needed just a few more minutes to fall asleep for his afternoon nap. It's a gorgeous day here in Oakland, not a cloud in the sky, with temperatures in the low 60's (sorry rest of the country).

And there it was. That feeling I get each time I drive down that stretch of road. It's like the air is buzzing and I feel time is layered around me (like a nice seven layer cake from the Raleigh hotel where my dad used to sing the High Holidays). It's all right there in front of me, the time before, the time now, the moment of change.

I hate it. I hate Cardiomyopathy. I hate that as I was driving, I was also keenly aware that my son was hooked up to his feeding tube, a larger than normal heart beating in his chest, getting ready to go home and take one of his 16 daily doses of various medications.

I hate the feeling of not knowing if he will be one of those kids that improves until his heart is in the normal function and size range only to decompensate at some point and need a transplant OR if he will be one of those kids that lives with medications and some decreased activity level for the rest of his life but no major change from how he has been since becoming stable.

(Less so these days but still) I wonder if Simon will die.

I can't help myself.

Especially when I find myself right back there at the spot where it all began. Where I first had the very real thought 'I wonder if Simon will die'.

Then, and here comes the feel good part, I thought about how much I love my life.

What?!

Right?! I know.

But there it was. Now I don't want you to think that I wouldn't trade it all in for a minute if there was that choice. No cardiomyopathy for Simon OR love your life right now...derrrr, no contest.

But for that time and even a little time since then, I'm feeling all the good things outweigh the sucky.

I love that my family can spend the day together sick, noses running like Niagara, and still laugh it up. I love that we have family and friends that bring us so much joy (and sushi!). I love that my son spends most of his time being a stellar toddler, smiling, making jokes, and charming the pants off the world at large. I love that I have Jaime at my side to share all this with. Almost nine (very uneventful *) years together and I am still 100% sure that she is the perfect partner for me.
* Italics = intense sarcasm

We have enough. We have more than enough. We rock!

I miss things for sure but I'm feeling a little in touch with the divine right now.

Sure, I can hear the laundry machine is almost done with the first of three loads that I have to do (barfing has not really ceased yet) and a napping Simon is still attached to tube coming out of his stomach for medication administration, but I am more than content. I'm blessed.

PopPop Simon Laura

Why PopPop is called PopPop

Dunk!

Jumping!

Just Chillaxin'

Happy Monkey

Simon discovers Mud puddles

Where my homeys at?

Ready to follow the Dead

First Super Bowl

So Pretty (he's going to kill us)

No really, he's going to kill us someday

Cousin Moses

The only motorcycle he will ever ride

Can you see why Wyatt might be a little nervous?

Into the Ocean

2011-01-27T14:45:00.000-08:00

Long time no write.

Let's see...since we last spoke:

On January 5th, I (Jaime ) celebrated my 35th birthday. For once I took the day off, which I felt I had earned since I spent almost my entire vacation the week before in the hospital. It was lovely.

Two weeks ago, Laura sliced off the end of her thumb (like 1/4 of the thumb above the first knuckle!) when I made her slice lemons on the mandoline. We spent 7 hours in an ER while our friends watched Simon. It was awful (she was in pain and the bleeding took quite a while to stop and I was slightly re-traumatized from being in the ER with her after her head injury) AND we actually got some real quality time together. Yes, quality time. In the Emergency Room. I guess it sounds really sick when you say it out loud. But we actually had a kind of a nice time together, if we ignored the people barfing and yelping in the other bays.

Laura's Dad came for a visit and we had very sweet times together. Bernie Fitch is a baby whisperer. Simon was clearly besotted and misses his Pop Pop.

Last weekend we all went to Calistoga to celebrate my birthday and had a lovely time soaking and eating and chatting with friends. And miracles of miracles, no one went to the hospital on this vacation.

We'll work on photos in the next post...
Now to begin the theme that may continue for a while. Preparing to set sail in a big, vast, potentially terrifying ocean called the Oakland School District.

Yesterday we had a rep from the Oakland Unified School District come to our house along with a rep from the East Bay Regional Center. The Regional Center has been coordinating all of Simon's services for the last couple of years. Those services end the day Simon turns 3 so we were meeting with the school district rep to talk about all the different assessments Simon will need in order to figure out what services the school district will provide us and what our options are for preschool.

It was great and terrible. The district rep was very sweet AND I kind of wanted to slap her across the face for asking so many questions about Simon's development that we had to answer "no" to.

This is what most of yesterday sounded like:

Her: Okay, lets talk about his blah blah (speech for example)

Me: He talks a lot but he doesn't say much.

Her: Does he ask for help when he can't do something or get something?

Us: No. He may just say the noun. He NEVER says, "Mama/Mommy, I want the ball"

Her: Does he point at things he wants or pull you to something if he wants it?

Us: No.

Her: Can he follow simple directions?

Us: Not really. If you ask him to do 2 things in order, he will only do the last one you requested. We're working on this. A lot.

It went on like this for about an hour and a half. A few timeswhat she was proposing that he might do was so preposterous I almost laughed out loud. Or cried.

About halfway through, we had a classic example of why we're so concerned about his language processing. He made a funny face, so I asked, "Simon, do you have poop in your diaper"? No answer. I ask 3-4 more times. Finally I say, "Simon, do you have poop in your diaper, yes or no". He then cheerily parroted, "Yes and no, yes and no". I asked again. Again, "yes and no". I said, "Which one". He finally says very definitively, "YES!". I go check and of course there's nothing in his diaper. I just look at the district woman and say, "This is what happens most of the time". Fortunately she is a speech therapist by training, and she said she could really see what was going on.

It was great to know that she sees it (this sounds awful) because we actually want things to look as bad as possible. If he's just sort of borderline and is having a good day when they do his assessment, he might not qualify for the services he needs. I was so happy he was doing stuff to show how not typical he is. It's beginning to feel like we're not going to have to worry much about him not qualifying for some of the basic things. His developmental progress...frankly...kind of sucks.

It's SOOOOOOO frustrating to me to have a kid that can talk but that can't really communicate. He has a huge vocabulary but he can't quite seem to figure out how to string it all together to be useful. I keep expecting him to be able to answer simple questions like "do you have poop" or "who did you see today when you went to the park" and he can't/won't. It's making me a little crazy. It's like having an infant in the frustrating ways of not really knowing what they want, but he's 3.

It also makes me concerned that these delays are not from the hospitalization but that he may have a bigger syndrome (I keep wanting to find out more about testing for Noonan's syndrome, for example) that includes Cardiomyopathy as well as cognitive delays. I'm not quite sure what to do about this or if it would even matter in the long run- the syndromes aren't "treatable" and he's already on everyone's radar.

I just want a goddamn answer. WHY!? Why. Why does he have Cardiomyopathy? Why is he so tiny? Why does he have trouble with his balance and running and why won't he jump and move around like other kids? Why does he barf all the time? Why doesn't he eat at all? Why is his language processing so bizarre? Everyone just guesses at the answers to these, including his doctors. "He was hospitalized for 4 months" doesn't seem like enough of an anwer for me. I just want one damn piece of drift wood to hold onto. Just one.

In terms of what the district may offer, we don't really want him in a "medically fragile" class because that is basically for kids who are really, really debilitated (like on ventilators, not ambulatory, etc). We also don't think it would be appropriate for him to be in a typical preschool. Our early intervention program folks (and we are too) are worried that if he goes to a typical class he will getting tagged as the really cute kid who says cute catch phrases all the time and slip through the cracks.

I think our goal is an enriched speech and language class, which the district offers (a few of them actually). I know Oakland Unified has a horrible reputation in a lot of ways, but it's actually the best place for us to be right now b/c the district is so big, it has a lot of options. A smaller district might not have the appropriate stuff for him. So I'm cautiously optimistic.

So as we begin this process, and April 9th approaches it feels like we're about to leave this little pond of our Early Intervention Program and get whooshed into the big, vast, ocean of the Oakland Unified School District.

It could be great, but it also might be really easy to get lost out there...

Home

2010-12-31T21:37:00.000-08:00

Our week in Pictures.

Beach combing in Gualala

Simon meets Sea Flora

A boy on the beach

Jaime and Mamaw are ready for the Pole expedition

Mellow Mama and Simon

Little did we know that the mellow would turn to lethargy and the lethargy to feverish and the feverish to Pneumonia

Trying to keep cool and keep the O2 cannula in

Our first wagon ride complete with oxygen tank

He can still find the smile

Day of departure- Simon's making plans for a big NYE

(Please note the size of the bed- Jaime and Simon spooned in it together)

Heading out

I have conquered pneumonia! I am the master of my domain- HOME!!!!

I am sure that there will be a blog sooner rather than later about the whole adventure/ nightmare but right now it's 9pm and both Jaime and I are completely tapped.
Happy New Year to all and humongous thanks to all that called, texted, brought over food, ordered us food, sent love, light, prayers, healing thoughts and WTFs. All were welcome and central to our getting back home safe and sound.

and to all a good night.

Angry

2010-12-30T13:34:00.000-08:00

Jaime here:
Today I am angry. I am so tired and am I so angry. I am angry that we are in the damn hospital again. I'm angry that none of us are getting enough sleep. I'm angry that my son is stuck in an environment where he can't touch anything because it's dangerous, germ-wise for him, or he's dangerous to someone else. I'm angry that Simon has to wear a mask every time he leaves our room. I'm angry that I can't figure out what we need from friends who are offering to help, even though we've done this before. I'm angry that I don't feel like it's safe for friends with little kids to visit because Simon has something potentially dangerous for them.

I'm angry that maybe this is caused by RSV and we didn't get a shot to prevent it because we all thought he was old enough not to need it. I'm angry that I have zero feelings right now for anyone, except Simon,other than annoyance, frustration and impatience. I'm angry that our roommates left and they had a space 2x as big as ours with a window and we have been told that we could move over there but housekeeping hasn't come so we can't move and the garbage is overflowing and it feels like we've been living in a cave. I am angry that the standard of nursing attention is so much lower on the floor versus the ICU or that our expectations are so much higher and that makes us look not like the "on top of it parents" but the "annoying parents".

I'm angry that Simon's pulse oximeter is malfunctioning and the dude that came to fix it basically said it's b/c Simon is too wiggly. Bullshit. It's a children's hospital. FIX IT. This frickin number is the only thing that is keeping us in the hospital. If you don't fix it, I spend all night being woken up by an alarm that says that my son has no oxygen in his blood when, in fact, he's wide awake and pissed about being in the hospital and very much alive. I'm pissed that the light in our area is broken so we only have bright light. I'm pissed that our chair bed is broken so if you stand on it (which you have to do to get to Simon if the bed is down) you practically break your neck b/c it slides apart. And I told a nurse about it 2 days ago. And I'm too damn tired to really pitch a fit.

I'm angry that this is how we had to spend our vacation. We got three days. Three. It was supposed to be almost 2 weeks. I so needed this time to reboot and instead I'm running on reserves. I'm angry that we might spend New Year's Eve in a goddamn hospital instead of Gualala or even our house.

I think that's it. I'm sure I'll be overflowing with gratitude tomorrow when I've slept and been in the sun, but today I'm surly.

Oh, and I'm pissed that the delivery guy who is trying to deliver our freezer flaked yesterday, knowing that one of us left the hospital to be home to receive it. A-hole.

Back in Day 3

2010-12-28T21:28:00.000-08:00

We are 22 hours into our return stay at Children's hospital. It's only just starting to feel real to me.
It's been 21 hours and 50 minutes of feeling that old 'What?! What the FUCK is going on'.
Where is my Simon, who loves to joke and insert his own name into anything and everything it fits or doesn't fit into. Old McDonald has a Simon? Totally.

Instead for the last 48 hours Jaime and I have been trying to manage this very sick and sadly very familiar child/world where we know how unplug lines and get Simon untangled before alarms go off, which Dr's to ask for and when, which nurses can be our best friends and which we should trust in no matter how we feel about them. We know what to order from the cafeteria and what toys to bring from home that won't take up that much space but might just bring out a smile or "otay" from Simon. We know how to keep in touch with our community and rely heavily on the texts, calls, and messages from our wide ranging family. We know how to rattle off Simon's list of medications and blenderized formula bolus feeding schedule. We know how to do this......
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It's now Tuesday night. I'm tired. Simon is mumbling falling asleep phrases next to me clearly feeling better than three hours ago.

Jaime and I left him with Dianne and Dre to go home for a few hours and eat and clean and make him more blenderized food. When we left him he was feeling so crappy and certainly not any better than when we were first admitted.........blah blah blah viral not bacterial, blah blah several more days to kick it, blah blah, heart not having to work too hard right now, blah blah blah.

You know what, I'm sorry I can't regale you with details right now. All I can say is how fucking scared and out of my body I have been for the last three days. It's like having PTSD but the T is so very fucking real again.

I watched Simon struggle with breathing. I watched him soak his pillow with sweat. I watched as he pulled hard from both his neck and stomach trying to take in air. And I watched it get worse and worse over the course of hours. I watched as he regressed and couldn't get out simple 'yes's and 'no's. I watched the hours go by and couldn't get a medical person to tell me what was going on. I felt my head fill with facts but no feelings and I watched as Jaime and I moved around each other taking amazing care of business but not knowing how to really take care of each other.

I feel numb and exhausted and I just want to go home. I want to take Simon home. I want Simon to be better.

I don't ever again want to have to watch him struggle to breath. I don't want this.
Done
Over
Finished.

But it's not, and tomorrow will be another day. Hopefully better.

Praying for sleep for us both

Back in the Hospital

2010-12-27T02:34:00.000-08:00

Just a quick update as I've just spent the last 8 hours in the ER and left Laura and Simon on the 4th floor of Children's Hospital Oakland. Hell hath no fury like an exhausted, sick toddler. Holy crap.

The short version is that they think Simon has pneumonia and are keeping him overnight because his blood oxygenation is below normal (88 without additional oxygen) and anything below 95% is concerning. He was punky yesterday and seemed to have a mild fever (travelling and didn't have thermometer) and an occasional deep, awful sounding cough, but was basically okay, just seemed tired. Today he barely got out of bed and by 2 pm Laura decided to go get a thermometer. He still just felt sort of warm but nothing extreme but the thermometer told a different story. His temp was 105, he was breathing pretty fast by the time Laura got back from the store and we were 4 hours from his doctors. We did an abbreviated pack up of our essentials and left my mom and stepdad at their house on the coast and hauled ass to the ER at Children's Hospital Oakland.

The good news is that his fever is under control with Tylenol and his heart seems to be doing pretty well in terms of low heart rate and normal breathing. His oxygenation...not so much. The chest x-ray didn't show anything and an exam showed a possible left ear infection. Initially we were told no evidence of pneumonia on the xray and thought that ruled it out but our cardiologist thinks that the low blood oxygen is evidence that his body is working harder and since his heart seems to be doing fine, he thinks it's a bigger infection (pneumonia) than just an ear infection.

Will update tomorrow.

This sucks.

Awesome Time

2010-12-19T14:56:00.000-08:00

The last couple of days have been awesome. Ice skating and eating. Two things I love. Well, three. I really love me some Simon Lev.

We started off our holiday time with a fun trip to the carousel in Tilden Park on Thursday evening. The weather outside was frightful (by California standards) but the Carousel inside was delightful.

Yeah, I'm riding a pig.

The best way to steer a pig is by his ears

Thomas!!

I love Mamaw and I love THOMAS!!!

"Cockadoodle Doo!!" Really that's what he said

On Saturday we kicked the day off with an awesome morning with Anna, Hillary, and Wyatt at the Bay Area Discovery Museum.

Simon: "this one's nubby"

Anna: "this one's squishy"

Working the docks, hauling crab, it's good work if you can get it

Have I mentioned how much I like Spaghetti O's

And then on to the Special Kids Ice Skating Party at Yerba Buena.

Skating with Santa

Skating with Mommy

"one my own, on my own!"

Just like his Mommy at his age

Simon skated for a solid hour!!

Meetin' up with our PIP peeps

We had a pretty good time

.Um....x100!!!!

Left ventricle non-compaction/ Dilated Cardiomyopathy, bah humbug! Simon Lev is a winter wonderland unto himself.