Mind Blown

A new diagnosis.
AND spaghetti O's

It's been quite a day here in Shimmy La Land.

I'll start with the spaghetti o's. The day began with a lighting bolt of an idea...ok, ok!  Fine, I'll start with the diagnosis one.  That's the one that's inspired the title of this blog anyway.

Simon and I were at Children's Hospital today to celebrate our dear friend Saun-Toy. She was receiving her Employee of the Month award and there was cake.

As we're headed to the elevator on the 2nd floor (post cake and Simon saying "Mazel Tov" to all the recipients- during the CEO's speech) we pass the door to the Cardiology offices.

Simon makes a beeline for the reception desk to say his hello's. Of course we ask if Dr HunkyPants is around, just to say Hi.

He is and while we're exchanges pleasantries/exclamations of how good Simon looks (us/him) he mentions in passing that he finally got Dr. Towbin on the phone and had a conversation with him about Simon.

This is Dr Towbin who is the foremost cardiologist in the country for Pediatric Cardiomyopathy. The Dr that families from all over the country if not the world come to see when it comes to this frikkin' disease and making sure that as much of it can be understood as possible. We've been trying for months to get him and his office to return our calls and have sent in Simon's records twice to see if we can get him to simply look at them and make sure that we're on the right path.

Quick shout out to Dr Rosenfeld for being the type of doctor that has no problem working in the best interest of the child and consulting left and right both when he and we have thought it might benefit Simon. Now that's an awesome quality to have in your primary cardiologist!!

Hunkypants continues to say that while Towbin was looking at Simon's echocardiograms, he seemed to think that there was in fact evidence of non compaction of the left ventricle. What this means is that Simon's Dilated  Cardiomyopathy (DCM-a very large umbrella term) has an additional diagnosis of LVNC (left ventricle non compaction) that allows us two things: 1) a greater chance at understanding where his DCM may have come from (70% of patients with LVNC can be traced back to a genetic disorder and there's a test for it)
AND
2) give us greater insight into a longer term prognosis.

Now while #1 is nice and all, since it won't change the management of Simon's heart all that much, I'm interested to see if our insurance will pay for the genetic testing but won't cry buckets if it won't.
 I'd be happier to not have to say Simon's condition is idiopathic but it's not going to rock my world.

What does rock my world though is hearing Simon's Dr say "what's good though is that we know patients with LVNC tend to be less symptomatic and do better with their decreased function than those kids with just DCM." It means that there's greater understanding of this particular subset of people living with DCM. It's more information on how the heart is working or 'not' working as the case may be. LVNC is about the makeup of the muscle and not just it's function.

The muscle itself is spongy or not-compacted- see the channels in the left ventricular bottom wall..

It's a lot more than you need to think about dear reader. However, what it means that I get to think about is more information, greater detail in terms of prognosis (and even better that it's a more positive prognosis), and subtle but distinct steps to take in maximizing Simon's treatment.

YEEEEEEHHHAAAAAAAAAAAAAAAAAW!!!

We will move forward with making sure that Simon is at the maximum doses for all his medication, especially his beta blocker Carvedilol, and look closely in future echo's at the structure of the left ventricle.

It's not like we've discovered anything monstrous but gosh darn it, it feels huge. So much of what is so amazingly difficult in this world of Cardiomyopathy are the unknowns.
Where it came from,
what tomorrow might be like,
what five years from now might be like,
never trusting in the improvements completely but giving thanks for each season spent out of the ICU,
never ever getting to say it's 'resolved,
seeing the wide spectrum of what it means to 'live' with this disease (playing organized sports to being wheelchair bound with 24/7 oxygen),
and waiting, always waiting to hear that the heart function has increased or decreased after every Echo knowing that it really could go either way no matter how long you've been at this.

It's just a little more clarity. Like knowing that the waters that you're swimming in are in fact salt water and a little more buoyant than you previously thought.

 I still feel the vastness of it, I'm still swimming with no sign of land, but I can understand my environment even just a smidge better and rely somewhat on what I know about swimming in salt water versus freshwater.

Speaking of saltwater- amazing transition Laura!- Simon has a new found love.

 Pasta!!

The short version is that Simon is eating!! Something has shifted in the last two weeks and all of a sudden we are on the fast track to getting Simon eating orally versus being tube fed. This morning we went out to Trader Joe's and bought Simon his first can of Joe's O's (essentially Spaghetti O's) and gosh darn it, if the boy didn't take at least 10 licks off a spoon, including some biting and chewing of the smaller o's. I nearly crapped my pants.

We sit down and play with food no less than five times a day (and by sit down I sometimes mean in the car gnawing on a piece of turkey jerky). But hot damn, to see my son nibble, chew and swallow....and all in the same minute....that's amazing. We don't think about it, and when I say we, I mean you all out there that aren't tube fed, but the simple act of eating....well, it's not.
Simple that is.

And, besides taking the spoon and feeding himself, he also let me, over and over again, get an 'o'  and some sauce in there.
I love getting to feed my son. Just as most parents are thrilled to let their kid's feed themselves, I am getting the experience that I missed out on for the last 2 years. I'm getting to feed my child.

There's that simple lean in that he does when I have the spoon right in front of him that makes my own heart pop a little.

It means not only that he wants what I have to offer to him (and how sweet is it to be able to fullfil a simple desire- how much longer will that last?!) but there is a beautiful element of trust to it.

Simon has not eaten by mouth for over two years. There were a lot of important reasons not to. Staying alive and conserving energy, not wanting to add to the feeling of nausea or bring on vomiting, and last but not least, not having the skills to do it with the consequences being dire (not being able to breathe/ choking).

That he is now allowing me to put food in there (and I mean in there, back on the molars to practice chewing!) I feel so completely honored and grateful.

We've come a long way baby! (reclaiming that phrase).
I know we have a long way to go. We're not making reservations at Chez Panisse anytime soon but I will say that tonight at Sushi, Simon slurped no less than a 1/4 cup of miso soup and gnawed on an almond sized piece of barbequed eel.

That's my boy!!

Slurping Spaghetti O's

Rockin' the Preppy look

One day, one Spaghetti O at a time.

Mixed bag......really really mixed bag

He said to me "I want to listen to 'Down By The Bay', yes." That's a 10 word sentence, not echoing anything before, clear as day.
 That's pretty amazing AND he was munching on a french fry dipped in BBQ sauce when he said it!!! We were on our way to speech therapy at the time and I couldn't wait to tell Cece (his therapist) about it. We've been talking about wanting to see Simon initiate more and deliver full sentences versus 'chunk' statements.
Then his speech session was delightful; full of pointing, identifying and following directions. He was dreamy.

However...

Earlier in the day we had our first of two meetings (in three days) to begin the legal process of seeing what services Simon will qualify for from Oakland Unified School District when he turns three. It's a complex process that includes several assessments to see where he continues to carry developmental delays that could inhibit his 'learning' process in a school setting.  In addition to that we'll need to assess where he sits medically in terms of being able to handle the germ fest that a typical school might be as well as the energy output required for attending school (even a half day pre-school will be more than he's used to right now in terms of activity.

We went over his last progress report and no surprise, he's still globally delayed. Fine motor skills, gross motor skills, communication, play, socialization, pretty much everything. Not surprising or even disheartening just not so much fun to see it all written down on paper with those age range summaries at the end.
"Simon is operating at the 18-24 month age in terms of....."
"Simon is operating at the 15-20 month range in terms of....."

No fun. "no owwies, but no fun" as Simon likes to say.

Ok, I've seen it before. I know how seeing it all on paper hits and then goes to the back of the filing cabinet in my mind.  Then his caseworker says "You know, he could qualify for Status 2 given his delay, do you want to do an assessment for it?"
Status 2 is where services from the Regional Center would continue after he turns 3 instead of being cut off. However these services are based on a formal diagnosis of Autism or Mental Retardation.

Deep breath.

I don't think that Simon is anywhere on the autism spectrum. Not a big concern. But M.R..... (and that's still the archaic term that they use!)

His language processing has already been raising flags AND we know that he was given several medications when he was sick that can have serious cognitive side effects AND he had several dangerously high fevers (106F at one point) when he was in-patient and having septic infections, AND he was very very sick and required a ventilator when he was first symptomatic with heart failure.

So.... could Simon have some mental retardation? Well, technically he does right now if we're talking about the literal sense of the term. "the act or result of delayed mental capacity"  He is late in several areas. It's true.

Sigh. Big sigh.

I think it's important to have another set of trained eyes look at Simon. I signed off on the assessment. It's a 2 to 4 hour process and will most likely take place sometime in February. He'll probably love it. A new person, giving him 'fun' things to do, watching his every move. I'm not worried about that.

But really?! I don't even know what to write. I don't even know what to feel at this moment.
But, really?! Really?! This is going to hang out on our plate for the next couple of months/years/life?

This is Simon. Sweet, funny, loving, growing, changing, stopping strangers on the street with his smile and eye contact, Simon.

Simon who is living with and triumphing over Cardiomyopathy in ways more brilliant than the brightest star in a dark night sky.

Simon.

Really?

Sighs and deep breaths.

All I got right now.

Light Returning

Four Questions:
Who is this young man that asks for food all day throughout the day?
Who is this little boy that hasn't barfed in days?
Who is this little mensch that learns to say Happy Hanukkah and eat gelt?
Who is this boychik of mine that says "I'm hungry" and "yum" and actually means it?

It's Simon Lev, surprising us all again. He's on his own timeline and progression for sure but holy heck is he walking on down the road, steps sure and steady.

I don't know what happened but after these last few weeks of having a cold and then a wicked stomach bug, he's 'eating' in ways I've yet to see.

Bringing spoonfulls of miso soup to his mouth (I stopped counting after 10). Licking baba ganoush off a spoon and veggie stick. Letting me put crumbs of ritz crackers on his tongue. Chewing rice size bits of scone, cheese, apple.....and then swallowing them!!!
Asking asking asking, always asking for something.

It's awesome in the true sense of the compound word.
I am certainly experiencing some awe.

I learned my lesson though a while ago though and don't freak out anymore while we're eating. Once was enough to scare the bejeezzus out of him and almost make him cry I was so excited about some lick or taste.
No, now I just have the joyful freak out inside my head and work hard to control the hyperventilation while saying a very calm and subdued "nice job Simon."

This is so amazing too as we're celebrating Hanukkah, getting ready for the Solstice, and Christmas (aaah the wonders of the mixed family and the month of December!).

Talk about feeling the return of the Light!

Joy!

Preparing for his solo aria

Get your motors running...

Riding the range (solo!)

On the first night of Hanukkah my two moms gave to me.... (don't worry, the next night he got a robot- we like to mix up over here)

Look how much scone I can fit in my mouth!

I do love me some paprika

A boy, his diaper, a g-tube button and a french fry.

What more does one need?

The video is precious not just for it's silent action but for the exclamation at the end. How many of us haven't said the same thing at one time or another?
http://www.youtube.com/watch?v=qyVaBwFHcs4

It's from a book.

Trigger (and I don't mean the horse)

 
THANKSGIVING
We were in L.A. this past weekend, visiting Laura's sister Jen who just had a new baby, Charlie, about a month ago.

Charlie was pretty cranky. And a little snuffly. And having a little trouble eating. He's a newborn. This is pretty normal.

And we were completely freaked out.  Jen, her husband Frank, Laura, me, Laura's father, Laura's mother. All of us were completely freaked out thinking that something was wrong with Charlie.

Then we had a collective realization that we are all walking around with the fear that this little boy is going to get sick.

Just like Simon.

There's this principle in medicine called Occam's Razor, which in a nutshell is, "when you hear hoofbeats, think horse, not zebra". Basically means when you're trying to figure out what's going on, the most common, probable answer is likely the right one.

In this case, the pediatrician and Jen's midwife are pretty darn sure he just has a little reflux and maybe a slight case of the sniffles. Which, is of course way more likely than him having Cardiomyopathy. And still, we're desperate for Charlie to get an echocardiogram just so we can know that we don't have to worry.
I think we collectively have a touch of PTSD. I know, that's sort of like being a little bit pregnant, but...

On the bright side, it was nice to see family, Charlie was cute as a button, Maya, his big sister was adjusting quite nicely and Simon got to go on his first solo pony ride!  He was a rock star.  After his first lap around the ring on Casper, I shouted, "Simon, are you having fun?" and he said, with a big smile, "Having fun!".  It was the highlight of the trip for me.  We recently saw Secretariat and I though to myself, "If he stays this little, maybe he has a future as a jockey...".

WINTER HOLIDAYS

I also had a few reflections about this holiday season.  Simon is starting to get old enough to pick up messages about lots of stuff in our culture.  Including Christmas.

I have VERY mixed feelings about this. 

Over the years, Laura and I have had some knock-down-drag-out fights about Christmas (okay, not really violent but definitely heated).  They usually went something like this:

Laura: "Jaime, you grew up celebrating Christmas. Christmas is a Christian holiday.  Ergo, I think of you as Christian because you celebrate a Christian holiday."

Me: "I AM NOT A CHRISTIAN.  Christmas was a family thing.  We put out cookies and milk for Santa and carrots for the Reindeer and cheese for Santa Mouse.  Santa wrote me letters every year in crazy curly writing. I got lots of presents.  It was not about the little baby Jesus.  I believe Jesus was a righteous dude who did a lot of good stuff when he was alive, but it pretty much ends there for me.  Ergo, I am not Christian."

Laura: "But...you celebrate Christmas.  I'm Jewish.  Growing up, Christians celebrated Christmas and Jews didn't."

Me: See above.

Laura:  "Jaime.  It's Christ-mass.   It's a Christian holiday.  It's about Jesus being born.  I don't understand how you can separate that out.  I'm not saying we aren't going to celebrate it-it's your family tradition.  I totally get that.  I have no problem with it.  But admit it's a Christian holiday."

Me: "Laura Fitch.  You. Are. Not. Hearing. Me.  It was not a Christian holiday for me. It's about a big fat man in a big red suit and lots and lots of presents.  It's about magic and twinkly lights and cozy, sweet, Norman Rockwell time. Frankly, it's about Capitalism, not Christ in my family".

We'd call a truce and then have the same fight again the next year.

Then, a few Decembers into our relationship, I had an epiphany. I don't know exactly when it happened, but it slowly dawned on me that I was partnered with a Jew and her experience in the world during that time of the year was really different from mine. It was like someone lifted a veil and I suddenly saw red. And green. And white. And Santa hats. And reindeer. And Christmas trees. Everywhere I looked it was Christmas. And I was pissed about it.

Really pissed.

I suddenly had this visceral understanding of what it might be like for non-Christians during December.  Actually, any time after Halloween. I realized that most people assume everyone celebrates Christmas. Last week, some random guy wished me a Merry Christmas walking down the street.  In the middle of November. And it annoyed the hell out of me, because he assumed that I celebrate Christmas.  Which I happen to do,  but he didn't know that.

Now I hear some of you..."What's the big deal, he's just being friendly, why can't I wish someone Merry Christmas even if they don't celebrate it?".  The big deal is that people assume that everyone celebrates Christmas and is excited about it.  The assumed norm is that everyone is Christian and/or celebrates Christmas.

A lot like the way people assume that I'm straight if they just look at me.

I don't necessarily get offended, but I then have to decide if I want to correct their assumption and face an uncomfortable situation and just feel sort of invisible. This happens with Christmas too. If you make it known that you don't celebrate Christmas, people often get very uncomfortable.  I had an experience with our goddaughters around the time that I had the epiphany that illustrated this so clearly.

A stranger asked Talia, about 6 at the time, what she was going to ask Santa for, for Christmas.  Talia  replied, "Oh, we don't celebrate Christmas".  The woman looked slightly horrified and said, "Why not!?" Talia's sister, Sophie, about 9 at the time, said very matter of factly, "We're Jewish".  The woman replied with a sad face, "That's too bad".  The she brightly said, "You can still celebrate Christmas, though!"

I almost socked her right there.  Laura and the girls were totally not phased by this exchange.  They were used to it.  I was furious.

"How can this woman basically tell these two little girls that they are less than or to be felt sorry for, for their cultural and/ or religious identity, and that they should and could adopt this Christian holiday!" I ranted.  Laura just looked at me and smiled.

While we're raising Simon with Jewish traditions, we will still celebrate Christmas. I'll teach Simon about the Christmas traditions we do in my family and what it means to us.  He'll get presents, I want to do "Santa", and I'll explain what it means to me and why we do it. When we mark Easter with my Christian family members, we'll explain what Easter means to Christians and tell him about the other kinds of celebrations that mark changes of seasons like May poles and solstices.

I'm slowly letting go of my December anger and starting to appreciate the twinkly lights and holiday cheer. However, be warned that I still might bitch about Christmas throwing up all over the place now and then...

Enough pontification.
Here are a few pics from our trip:

Simon, about to embark on his solo horse journey

There is goes, the little peanut

And, he's back

PopPop, Maya and Laura on the little Steam Train

 Simon, Maya and Laura on the Steam Train

Simon and Micah (my friend Assaf's son)

Assaf, (my best friend from 5th and 6th grade that I hadn't seen in 20 years), his wife Shuli, and us

A Quick Thanksgiving to my Homegirls

You are my homegirls, you wonderful women of PIP (Simon's early intervention program).
Yesterday we sat in 'parent group' and we had one of those moments where I truly understand the term homegirl.
As a well meaning white woman I don't use that term very often but last night falling asleep it kept popping into my head.

Yesterday as we laughed and cried and grieved for that blessed hour that we have together twice a week, I felt more at 'home' than I have in a long time. We are warriors together. We are limp noodles together. We are  each others cheerleaders, advocates, silent sponges for venting sessions, further along the road, just starting the road, incredible resource, and voice or image inside my head when I need my 'homegirls' the most.

Thank you for that circle of safety, of knowing what no one else can know quite the way you do.
Thank you for being there. Thank you for sitting raw and exhausted or celebratory and silly with me.
I loved it that we laughed silly in one minute and recognized the need for the tissue box in the next.

cardiomyopathy, cerebral palsy, myotonic dystrophy, down syndrome, seizures, tubers, fragile x syndrome...none of you get capital letters because our children and we are so much more than that.

So tomorrow as I am filling up on thank fullness and the richness of stuffing and family, please know that you all (and this past Tuesday in particular) are right up there at the top of my list of things that I am so very very thank full for.
You are my homegirls.

Spinning

 
We saw two of Simon's peers from our birth group last weekend and Laura and I are both reeling from it a little.

Seeing these boys comes on the cusp of us beginning a major round of assessments to prepare for April, when Simon turns 3, he ages out of his Early Intervention Program and will begin...something else. What that "something else" is, we aren't exactly sure and it's freaking us both out a little.

The assessments are the first part of the development of Simon's Individualized Education Plan (IEP). An IEP is the legal document that says what Oakland Unified School District must provide for him, based on his needs- both educational and medical. Depending on what these assessments find and what the district can provide, we could end up in any number of situations, including being told Simon:

1) can go to a regular preschool (a whole other can of worms to be discussed later)
2) can be in a class for Medically Fragile kids through the district (might be the best choice?
3) will be in a "special ed" preschool which could include kids that are severely cognitively and socially delayed (not ideal since Simon seems to be catching up and needs to model off "typical" kids)
3) will go to something in another school district because there is not an appropriate class for him in our school district (possibly a very cool school in Berkeley for mostly hard of hearing/deaf kids that has mainstream kids plus onsite speech and OT)

It's not news that he's delayed. We know he's A LOT smaller than other kids his age. He's talking all the time but not saying much (not great communication). He doesn't run, jump or and hates to walk any sort of distance. Still no eating. We know this intellectually but mostly it's just sort of in the background.

Then we hang out with typical kids that are his age, who are running and riding tricycles, talking in complete full sentences, and having complex imaginary play, and those delays, that gap between "typical" and "Simon" suddenly feel like the Grand Canyon. It's a little shocking.

We don't quite have all the info to know if he's as behind his peers as he was a year ago or if he's catching up. I keep wondering if the differences are just more apparent but not as severe or if the train is really picking up speed and going to leave us behind forever. And that is giving me major flashbacks to my own struggles as a kid.

When I was 5, a bunch of things happened all at once, including my parents splitting up, moving to a new city, leaving my preschool and starting First Grade part-way through the year with a really strict and not particularly warm teacher. The combination kind of knocked me on my 5-year old butt and looking back, set me up for some struggles academically and socially.

Because I knew how to read, folks decided that I should start First Grade instead of going into Kindergarten. It was the thing to do those days- put girls ahead a year if there was a question (and hold boys back a year). Unfortunately, my number/math skills and handwriting were very weak and I was working some big stuff emotionally out about all the changes. I ended up struggling with math and handwriting my entire academic career and had a hard time connecting with my peers until I was an adult.

I was behind in some areas. Kinda like Simon.

Most of the tears I shed in my childhood were borne of sheer frustration and panic that I was getting left behind academically (even with extra help) and not quite fitting in socially. The thing I remember most distinctly was feeling like I was never going to learn things, particularly in math.  The things we were learning were building on the things I was already supposed to know (and was struggling with) and that the train was picking up speed and I was never going to catch it and be able to chill for a minute and catch my breath. I wanted to give up on trying so many times because it felt like  it was never going to end and I just had to keep running or I'd get left behind and...

There's a chance he might not ever catch up.  He might always feel like he's behind everyone else and will never catch up.  And I can't really fix it. I never want Simon to feel that pressure, that hopelessness, that feeling of being totally overwhelmed.  And I'm sure he will. I guess I should re-read my post about not being able to protect kids from hurt and instead promote Resilience.

As we're at this crossroads with Simon, when we have so much attention focused on his development and "catching up" and "being behind", I'm struggling to keep my perspective. Some days are certainly easier than others.  Lately, not so much. Especially since his speech assessment found "processing" problems, which sounds sort of different from "delayed".  It actually makes sense, given what we're seeing in terms of how he's picking words up and using them, or not using them as the case may be.  Just not sure how to put in in context, so we'll wait for the report.

I'm trying not to freak out about the possibility that he's not just delayed from his hospitalization and will catch up but that he could have some lasting, permanent cognitive impairment.  He was given a crap ton of meds (I should look through his charts and count.  I bet it's over 20, including some really intense antibiotics) and had low oxygen saturation while he was going into heart failure and septic twice and... It just never occurred to me until now that he could have lasting cognitive issues on top of the health issues. 
Then the spinning about money starts...

If he gets "OK'd" to go to a typical preschool, then we're worried about cooties and a high teacher to student ratio to help with his tube feeding etc. The kinds of schools that have better student/child ratios and kids that tend to not come to school when they're sick because they have stay at home parents or nannies cost an arm and a leg and tend to be pretty homogeneous in terms of race and class.

So...we're wondering if he'll be in some inappropriate class through the district or how the hell we'll afford a private fancy preschool if that's what looks like the best option, when we're already trying to cut it on $60,000 for a family of three in the Bay Area and 1/3 of our income goes to medical expenses and we're already getting a cut on rent for our 1 bedroom apartment and despite the fact that our parents are already helping us financially, we still fall within $100 of our income every month.  Then my Protestant (funny b/c I wasn't raised Christian) work ethic tape starts up and I feel like crap for being 34 and getting financial help from our parents and wondering if I'm totally irresponsible for having a child when it's ended up meaning we can't cut it on our own right now and wondering when I will ever not need all this damn help from everyone. 

Some days I'm so grateful and thankful and oh-so-Zen about it all.  Other days I want a vacation from my life and to worry about nothing but what movies I'll watch and what to cook and how to decorate a clean, orderly home with all my disposable income.

Anina is gone

 

We have talked about Death being right outside our window, sometimes sitting as close as across the room from us, keeping vigil with us. Not necessarily waiting but just keeping vigil.

Tonight we know that she has left our family and gone to visit another. Sweet little Anina girl, who was admitted to the ICU just days before us, also with DCM (Dilated Cardiomyopathy), has had Death come for more than just 'keeping vigil'. Anina got wrapped up in one of Death's shawl's and taken away from her family.

I collapsed and cried the same way that I did that day, that awful weekend when we began planning to say goodbye to Simon.

What other parent walks through their days knowing that it's more than likely that they will be saying goodbye to their own child's peers and praying so hard that it's not their own?  THAT, is fucked up. Say it again slowly...fucked....up.

Driving home from my time off this week I was listening to Winter Song by Sara Bareilles and Ingrid Michaelson

This is my winter song to you.

The storm is coming soon,
it rolls in from the sea

My voice; a beacon in the night.
My words will be your light,
to carry you to me.

Is love alive?
Is love alive?
Is love...


They say that things just cannot grow
beneath the winter snow,
or so I have been told.

They say we're buried far,
just like a distant star
I simply cannot hold.

Is love alive?
Is love alive?
Is love alive?


This is my winter song.
December never felt so wrong,
'cause you're not where you belong;
Inside my arms.

I still believe in summer days.
The seasons always change
and life will find a way.

I'll be your harvester of light
and send it out tonight
so we can start again.

Is love alive?
Is love alive?
Is love alive?

This is my winter song.
December never felt so wrong,
cause you're not where you belong;
inside my arms.

This is my winter song to you.
The storm is coming soon
it rolls in from the sea.


My love a beacon in the night.
My words will be your light
to carry you to me.

Is love alive?

And I thought about how it does feel like living in winter. There is so much possibility that is covered under heavy snow and thick grey clouds. There are certainly clear sky days and green things poking through but sometimes it just feels like Winter with very little hope. This is one of those times.

Who the hell lives their life thinking that they might outlive their child?! It's fucking exhausting.
But I don't think about it all that much because there are therapy appointments to go to and developmental milestones to celebrate ( or dread- yes, Simon has found a new love affair with the word 'No').

But really come on. 

One more moment of learning that another mother has arrived at that unthinkable and illogical place of losing her child. I was that mother for an instant and for whatever reason got a reprieve. But I know....I know.
I know that moment that no mother (or any parent or caregiver) should know. The one where you are faced with losing your child. We were at that door, standing on the welcome mat, and for whatever reason Death didn't open for us and we got to take a step back. We're not off the porch just yet and I don't think we ever get to leave more than the front yard....but that door wasn't opened for us.

Anina is gone.

Just a little younger than Simon, big beautiful brown eyes, and thick black hair that poked up from under the pink headband and bows that her mom put on her.

So here I am.  Supposed to do what? Feel what? Guilty, afraid, devastated, relieved, enraged, thankful, what?

I love Simon so much. I hate this disease. I love our life. I hate this disease. I love being Simon's mother. I hate living with this fear. Simon might die. It doesn't matter how fucking stable he is. He lives with Cardiomyopathy and nobody out there can tell me that it's going to eventually be ok. Nobody can tell me that.

So what? He's got a speech evaluation tomorrow and had a physical therapy evaluation today. He barfed a lot today. I listened to his heart rate. It was fine. I'm planning for the upcoming IEP meetings and assessments as he gets ready to turn 3 this coming April.

Planning, scheduling, dreaming, looking forward, plugging on....and it doesn't mean a thing because my son lives with a heart condition that doesn't necessarily always move in one direction.

A heart condition.

A heart condition that takes away little children from their people. How the fuck do you live with that?!

I used to be one of those people that looked at the larger picture and how to make things better. I remember learning as a young adolescent about some awful study that showed that babies that weren't touched and held ended up dying and/or developing serious disorders. I believed right then and there that us humans had better learn how to connect to each other in authentic ways and in doing so could really affect the awful systems that keep us from doing that. If we could find those connections across lines of race, class, gender, sexual orientation, religion, etc, then we could begin to move toward that imaginary but possible society where things are actually just and loving. And I spent at least two decades making that a core piece of the work that I did with children, with other adults working with children, and in my own personal relationships.
And I believed that there was progress. There was always room to improve and move forward but that was also inspiring and energizing.

And now, I don't have that larger perspective. My life's work right now is with one.

One spectacular human being for sure but one. And it involves minutia and therapies and maintenance and barf and medicine and

and

and

and

fear.

And yes hope and yes faith and yes beautiful wonderful moments of growth and progress and development but I also have the very real possibility that some day Simon's heart will decompensate again and not be good for more time, like sweet Anina.

I have said out loud that I can't imagine what that's like but then I always find myself making the correction I can imagine that because I was there. And my peers and Simon's peers....we can imagine that because we have either lived it or have come right within a hair's breadth of it. Like no parent ever should. I don't want this. I don't want it anymore.

And that doesn't matter.

Tomorrow is a new day for sure and I'll be able to get on with it and I'm sure that something will happen where I will laugh and feel blessed beyond belief and/or not feel blessed but certainly better off than a dung beetle.

Tonight is not that though and I'm going off to bed now to cry and hold Anina's family in my heart.

Mama's Job Description

 
All this buzz about kids getting bullied makes me think about our sweet Simon. A lot. He's got a lot of stuff going for him that the bullies are gonna LOVE.

And all this talk about bullying reminds me that my duty, my job, really my sole purpose of existence as a mother is to teach him two things.

The value of connection and resilience.

If I had to pick two things, I'd say that's it.

It would be great if he's super smart or makes tons of money or is an amazing artist or good at sports or saves the world. But really, what I think it most useful in life is learning how important people are and how to keep going when life (or a bully) kicks your ass.

And all this talk also reminds me that this bullying nonsense starts with the grown ups. Our little muffins aren't born being mean, thinking other people are things to be kicked or teased or pushed aside. They learn it from us.

I just read a blog post about a Mom who sent her little boy off to preschool in the Halloween costume that he begged for, dreamed of, lost his mind over when it arrived- Daphne, from Scooby Doo. He was worried that people would tease him and Mom couldn't imagine that the kids would give him crap. And she was right. They didn't.

The parents did.

A few of the people who posted comments on her blog post about her experience responded along the lines of "You were a bad parent for letting him go to school like that, knowing he was going to be teased". To which I want to scream, "HEY! Why is HER kid supposed to suck it up and not get to wear the costume he wants to wear? It was the stupid adults who encourage their kids to be a-holes that are the problem, not this Mom". She did what I think all parents should do - encouraged her kid to be the most authentic version of himself and helped him with the fall out. If we kept our kids from doing everything single thing that would hurt them, they'd grow up to be totally useless and only have boring stories about how they learned to fold their socks without getting hangnails.

My kid is going to take some lumps. He already has. But the thing he also has, at two and a half, is the power to connect and resilience.

We go into a local bakery just about every day, mostly so Simon can say hi to all his friends there. The faces of the workers in this cooperative bakery literally light up when they see him. "Hey Simon!" "Hi Simon" "Hola Simon"- it's like a chorus. And Simon lights up right back at them - "Hi Five" "James" Mahasen" "Fatwah" "Jose". Just about everyone that works on Lakeshore Avenue knows Simon by name and he knows them right back. "Maurice" "Robert" "Jafar" "Stephan". He soothes himself to sleep by reciting the names of everyone he is connected to. We can hear him babble "Auntie Poof" "Moses" "Grandpa Eddie" "Mary Beth". He could probably recite names for 3 solid minutes and still not name everyone he holds dear.

It's how we've gotten to the place we are today- with a child who, as my mother described this morning, "now has a future we can plan for". Laura and I are still happily married and Simon is alive and kicking and breathing and smiling and hugging and loving and screaming because of people. Yes, modern medicine helped, but living breathing creatures have shown us love and taken our love and shaped it into something tangible called the Fitch-Jenett family that has 3 humans and a dog and lots and lots and lots of connections to other living things.

Yesterday I watched Simon fall in slow motion, his beautiful little body hurtling towards concrete . I watched, my brain shouting "noooooooooo" as he rolled and rolled and I realized his sweet noggin was going to bonk the rough pavement. And it did and he cried like hell and he grabbed onto me and he barfed his little guts out and really felt it all. And then it was done and he was back and on to the next thing.

It was amazing.

I think resilience is figuring out how to take those hardest, most painful things and really feel them and then ease them, squeeze them, shape them into something beautiful or useful or just plain harmless. Simon already knows how to do this. He knows how to roll with the pain, figure out the best way to respond, how and when to ask for help and then how to get up and keep going when it's time. Seems like the most basic survival skills I can think of.

I can't box the ears of every bully that will tease him about being little, or having funny scars or not being able to do gym class or having two Moms. Nor can I wring the necks of every parent that whispers about us or won't let their kids come to our house or raises kids that only feel good when they conquer. But I can show Simon how to draw people close, how to lie down when it really hurts and how to reach out a hand when it's time to get up.

If I teach him nothing else, Dayenu.

Flying to Springfield

It's not like we flew to Springfield. We flew to New York. But there are 26 different cities or towns named Springfield (Franklin is # 1 but I wasn't a fan of the alliteration) so it's as though we could have been going anywhere.

We flew to New York though and it was almost like we were any family going to New York. I say almost because we're a lesbian family with a 2.5 year old. A two and a half year old with a feeding pump and food bag and medications but other than that we're just like any other family.

Or, at least it felt like it.

Now, when I say that I want you, dear reader, to understand that I have not felt like any other family for at least two years. Two years of feeling like we are that family.

The one that you never think about but, should you see them on the street/in the park/ at a restaurant, you can't quite keep yourself from stealing glances and wonder 'what is that tubing and bag', 'why does she have a syringe', 'I wonder what he has', and hopefully 'we are so blessed to be healthy, I promise not to take it for granted'.

And Simon doesn't even look sick anymore but that's how it feels sometimes when were out and doing a feed, giving a med, cleaning up vomit or I have to ask about someone's sneezing or coughing etc.

But since barfing has stopped (and it really has!) I can't even begin to say how it's felt to walk through a day. What's funny is that it's not like any of those other things have really stopped. Simon is still tube fed, he still gets hooked up to his pump while we're out and takes a number of medications throughout the day but hot damn if the no barfing makes all of that so benign.

I think there's something about his throwing up that was an acute reminder of how sick he is. Taking medication and even administering his meds are not unpleasant. We've all done those things in our lifetime. Likely we're not doing them for some great reason but in of themselves those actions are not unpleasant or painful. Even hooking him up to his enteral feed is not in of itself an unpleasant thing. It's probably not delightful but neither is brushing teeth and yet we do it.

Throwing up however is always unpleasant. It's gross. It's awful. It's messy. It's smells bad and often means a clothing change and funny looks or comments if we're out in public. It was a several times a day reminder that Simon is sick. He is so sick that he can't even keep down food, something we all take for granted but was his norm.

It's not anymore.

So we flew to New York. We had fun on the airplane. We walked up and down the aisle with Simon greeting people with a "Hello Passengers!", waiting for eye contact before moving on down the aisle. We met the pilots and got to sit in the driver seat of a 747! We learned how to say "Thank You Flight Attendant" and of course go all bug eyed (but not upset) at takeoff and landing.

We got on East coast time.

We rode the city bus and subway. We sat at restaurant after restaurant. We played with calamari and decaf cappuccino. We met and charmed people that have been praying for our family for two years. We saw long lost friends, favorite grand uncles, Laura's camp people (Polly I still can't believe that you drove down from Boston for 1 night!), saw an east coast Autumn and even got to ride a horse named Neil ("walk on Neil" is still a favorite phrase).

We laughed a lot.

A lot.

We gave lots and lots of love to MM and PopPop, and we surprised Mommy and Mama over and over again with how much we are alive and present and determined to have fabulous days no matter how much newness we have thrown at us.

He was a dream! It was a dream week. We had Jaime around the whole week. We had MM and PopPop. We had a fabulous time. ( I really like the 4 to one ratio.)

We've been home for almost two weeks now and our days are different. There's still OT and Speech therapy and Feeding therapy and our Early Intervention program and medication refills and doctors and case managers. There's still a lot of time that's just Simon and I, pump bags, and meds. There's all that stuff.

But with no barfing and crazy development happening all over the place....it feels different. Hard but different.

 

How can you begrudge a 2.5 year old going through their "NO" phase when everywhere else you are wanting them to experience what's normal/typical.

He's deep into it starting three days ago.

 

I'm screwed.  
 

Here are some pics from NYC 

Getting ready for take off

Can you believe they let me fly this thing

Who let these jokers into the cockpit?

PopPop and MM meet us at the airport

Riverside park meet up with High School and Camp Friends

Maeve gets a ride with Simon

At the Bronx Zoo it's ok to feed the goats fingers

MM working out her biceps

Strolling is nice too

NYPD recruiting

 Mama and Simon stroll the botanical gardens

Simon stops to smell the flowers

Simon explains the meaning of life to PopPop

At the edible herb garden

At the edible table at Emilia's in the Bronx's Little Italy (calamari)

Decaf cappuccino

With Jaime's 'niece' and the wall of Simon in the background (in MM and PopPop's bedroom)

Simon meet Neil

Simon ride Neil

Simon love Neil

Getting ready for the Fall harvest

Meeting Jarrett at the Metropolitan Opera

With PopPop at his place of work

"Ok people, let's run this through again"

"I'm almost ready for my close up"

Two bundles of NY beauty

Simon and Polly have a moment

With Tessa on our last night.

And that's how we did NYC!!