A Quickie

We've had a rough go of it here the last few weeks (and it's all relative).

We've lost our afternoon nap (Simon). Started night sweats (Simon again). Started to use language like "It hurts" but can't say where or what- just repeat over and over again (Shimmy Shimmster). Been cranky, crabby, and lost deep deep in the ocean of frustration (Simon and Mommies).

In an effort to rule out any heart related concerns and stay in the simple parents-of-a-Four Year Old Land, we moved our cardiology appointment up from August 1st to June 4th.

Jaime and I were not that worried and our 'gut' was saying that this was not heart related. Still, when there are enough things to add to the list, we don't have the privilege of just 'chalking it up'. So off to see Dr HunkyPants.

After an EKG, and an Echocardiogram, we met with Rosenfeld to discuss what might be going on.
Turns out, Simon is exhibiting one of those unfortunate developments in pediatric Cardiomyopathy

.................He is 4. He is so 4 it's unbelievably typical.

There is nothing going on with his heart other than IT'S EVEN STRONGER!!!
His shortening fraction is up to 32 (from 28) and his ejection fraction is up to 59 (from 55) since February!!!

So the pissant behavior is normal. The cranky, crabby, selective hearing, interrupted sleep, testing boundaries with direct eye contact, and even night sweats and redness around his G-tube (because he won't stop sticking his FINGER in it, not infection!) are because he's FOUR. A perfect TYPICAL 4 year old.

AND, his heart is stronger.

Just like his temperament, will, and voice.

Awesome.

No really. Awesome.

I think the expressions on his face in the following pictures says it all.

Seriously?! That look of disdain.

Nose Picking

And determination- "I will fit this whole thing in my mouth!"

Crazytown, U.S.A.

Our son has thrown his hat in the ring to be crowned Mayor of Crazytown.

Seriously.

We are unclear exactly what the hell is going on but some beast has taken over his body and our easygoing little boy is now a tyrant.  I'm considering a dictator moustache for him.  His newest trick is to have little temper tantrums at the slightest provocation, including when he actually gets the thing he was asking for.  He issues a constant stream of totally disturbing statements if wants something or doesn't get something or for no apparent reason at all.  It goes something like this: "It hurts!  It's broken!  I lost it!  I'm all done!  It's all gone!"

Any attempts to find out EXACTLY what is hurt/broken/lost/gone results in a wild, screaming NOOOOOOOO. Then he starts all over again.  Sometimes he answers the "what hurts?" with "my shirt" and sort of points to his chest.  This of course, has me wanting to run for the phone to call the on-call cardiologist.  However, if you ask him again within 2 seconds, he will say something totally benign, like "the table". Which then makes me want to wring his little neck.

We think that has learned that when he says, "it hurts", he gets an awesome response from us.  We were on him like white on rice when he first started these shenanigans.  Once we realized he wasn't tying it to anything concrete, we tried asking "what hurts?" or saying "I'm sorry it hurts" or "yeah, it hurts" sympathetically with zero improvement/response.  We have now tried not responding to his cries of "it hurts".   It just kills me every time.  I'm 99% sure he's doing this for attention, but the 1% chance that something really is wrong and his poor scrambled brain can't articulate it and we're ignoring it makes me want to stab myself in the eye with something hot and sharp.

I will be buying a copy of "The Boy Who Cried Wolf" for him tomorrow.

He has also been having night sweats on and off for over a month. Like, totally soaking the pillow and his hair. This is what he was doing as a baby in the weeks before he ended up in the ER and then on life support. This is not freaking us out AT ALL.  Nope, we go to sleep just fine when we move him from our bed into his own and then try to sleep on the oh-so-familiar damp pillow. We don't think about what came next when that was happening before. Not at all.We have a cardiology visit coming up and will have some checking into what might be causing this.  A lot of parents on our Cardiomyopathy listserv report their kids sweating a lot for no apparent reason and we changed his homeopathic remedy around the time this started, so...fingers crossed.

He also has started completely freaking out when we go to attach his feeding tube to his Mic-Key.  He shrieks, "It HURTS!" but then if you attach the tube to it and run the food he's fine.  This is particularly fun in public as people already are probably thrown by the whole feeding tube thing anyway.  I swear, it was Feeding Tube Awareness weekend.  Someone at the dog park quipped, "don't you know it's an off leash park" when they saw me walking with the backpack on and his feeding tube attached to Simon.  When I answered good-naturedly (this was the 3rd person of the weekend to ask), "oh it's a feeding tube" they looked mortified and then proceeded to ask me a trillion questions in front of Simon including, "What's his prognosis?" I've never cared before but I'm realizing he's getting old enough that it feels weird to have these conversations about him with him sitting right there.  I can't wait to teach him how to answer the questions himself. Well, maybe not the prognosis one since it's can be kind of grim.  "Um, we dunno but 1/3 of kids die or need transplant and that may be me but we won't know until it happens" is a little disturbing.  
 
His bizarro behavior and even sweating would probably just be brushed off as a developmental stage by parents of a typical kid, but as cardiac parents, we feel like we are always one hairs-breadth distance from disaster.  The sooner we identify that the ship has hit rocks, the better chance we have of saving it. This combination of mood change/"it hurts"/night-sweats thing has our PTSD going almost full throttle.  We moved his bi-annual cardiology appointment up to June 4th which has us both breathing a little easier.  Unless something has shifted for the worse.  In which case, we will...freak out and then soldier on. Here's for hoping he's just being an old-fashioned, pain-in-the-booty, 4-year old.

On a good note, we threw a successful fundraiser for the Palliative Care Program at Children's Hospital and Research Center Oakland on May 19th (don't have final count yet, but think we raised between $1500-$2000!).  We showed all 4 pieces in The Devotion Project at a gorgeous old movie theater and Tony Osso, the filmmaker came to town all the way from NYC for the event!  (He will be releasing the 4th film about our dear friends Anne, Eric and Jonah at the end of this month.  You will be able to see it at www.thedevotionproject.org.)

Speaking of the film, Tony has also made 3 bonus pieces from our film (including one out-takes/behind the scenes piece that is NOT fit for delicate ears, thanks to my potty mouth).  Here are the links:

• "Listen From the Heart" (the full 10 minute film) 
• "Is That a Yes" (our proposal story- 1 min 53 seconds)
• "What Sleeve?!  What Tricks?!" (our decision not to pursue transplant- 4 min 20 seconds )
• "Potty Mouth/You Stinker" (the outtakes/behind the scenes- 1 min 35 seconds)

In other good news, Laura and I also just celebrated her 39th birthday, our 10th anniversary together and Laura won the Claremont Hotel Mother's Day contest (my stepmom and I submitted entries for her)!  The prize includes an overnight stay at the *gorgeous* Claremont Hotel plus an overnight stay for two, a private bath, 80 min massage, 50 min facial, 50 min manicure, 50 min pedicure, hairstyle, make up application, lunch, all day access to Spa/Club (clearly I will be utilizing some of those prizes instead of Laura). 

As usual, it's a bit of a mix over here at Chez Fitch-Jenett.  More good than bad, which is how we like it.

Eric, Anne, Jonah, Tony, Simon, Jaime, Laura at the fundraiser

Totally love this photo of me with Simon. 

 

Tony, Simon, Jaime and Laura

This is what happens when you give a banana to a kid who doesn't eat by mouth.

Simon, giving a hug to one of the dancers at the Stanford Pow Wow.  All he wanted all day was to "hug the dancers".

Simon's version of the now-famous Obama photo (with Pop Pop)

Mama's Day, Our Way

Strong Families is an organization leading a national initiative to change the way people think, act and talk about families. As Mother's Day approaches, they have been doing a series of blog posts called, "Mama's Day, Our Way" to create a platform to "focus together on what we want and need so all families can thrive".

There was one post in the series that really spoke to me.  A woman named Nina described her ambivalence about becoming a mother.  As a mother who never imagined becoming a mother, I (Jaime) felt compelled to respond. Strong Families ended up publishing my response on their site. The link to my original post on their site is here but I'll also repost it below.


Nina,

I loved your post about why you’re not sure you could be a Mom. But there’s one part I have to disagree with. After listing out all the reasons you are apprehensive about parenthood, you say, “I realize that this list is a testament to how NOT ready I am to be a mother.” I couldn’t disagree more. I think every woman, mother or not, should have a list of all the reasons why it might not be a good idea to become a mother. The decision to parent is sheer insanity.

I grew up thinking that having kids was the last thing I ever wanted to do, for many of the reasons you listed. The idea that I would intentionally choose to have a narcissistic, demanding, messy human in my life, who would be completely dependent on me made me want to run from the room screaming, with my arms flapping, cartoon-style. I couldn’t think of anything I wanted less in my life.

Then I met my wife. She was sure she wanted kids. Like, really, really sure. And I was sure I wanted to be with her. Like, really, really sure. Which left me faced with the reality that I was probably going to become a parent some day.

After years together and hours of talking through why I thought parenting was a horrible idea, I realized I was most afraid of having to do it all myself. My parents divorced when I was 5 and had joint custody. While they did a great job raising me, watching my parents try to juggle their full lives and careers and me without another adult in the house looked…well…kind of miserable.

I decided I could get on board with this project if my wife would take the lead. And the understanding that if we had a kid and she died or left me to raise that child alone that I could kill her with my bare hands.

Laura got pregnant on the first try and it took almost all my energy not to show my panic. I had been sure I would have months to really, truly get into the idea of becoming a mother. Suddenly, the train was leaving the station. As Laura’s pregnancy progressed, every time I could feel the baby move, I would half-scream and nervously laugh and try not to think of the movie “Alien.” When Simon was born, I looked at his purple, squished, alien looking face and my first words were, “it’s alive.” Not “yea!” or “he’s beautiful.”

“It’s alive.” I was in complete shock that I was irrevocably, permanently, solidly a parent.

Every week that went by, I was a little less afraid and felt a little less like an imposter but it was slow going. Then, at four months old, Simon got critically ill. We spent months in the ICU and it became clear that if Simon ever did get out of the hospital, he would have a lifetime of health and developmental challenges. This was totally not what I had in mind when I said I’d take a shot at parenting.

Then, slowly, my worst nightmare began to take shape at work. While Simon was still in the hospital, my boss started turning up the pressure. I realized she was essentially asking me to choose between my career and my family. A core fear of mine that had kept me from wanting to be a parent was that I would not be able to prioritize my child over my work or that I would resent having to choose.

And then, I was forced to choose. To my complete shock, I chose my family. I quit my fast-track job and found something else that would work better for my life as a parent of a child with special needs. It’s not something I could have ever imagined I would do before Simon was born but when it came down to it, I did not have a moment of hesitation before making that decision. Something about that process solidified my love for Simon and my identity as a mother. It was a question answered.

My journey to becoming a mother was not without doubts and fears. It’s not the path I thought I would take and it doesn’t look at all like what I imagined. There are times that I long for my simpler, less harried, pre-mothering days. Some days I feel a furious envy of child-less women my age who go to parties and evening exercise classes and have disposable income.

I also feel incredible compassion for my sisters who are child-less by choice. I know they feel the pressure from society to get in the Mother box with the rest of us. This Mama’s Day I want to affirm all the women who choose not to become parents. I support your reasons no matter what they are.

To brave, thoughtful women like Nina who are afraid they won’t be able to handle the vulnerability and intensity of loving a child, I can only say, sometimes loving so much it hurts can break us so wide open that we find delicious pieces of ourselves we never knew were there.

We Don't Go Long

without death.

We lost another little one last night to Cardiomyopathy. Ellie. Please send the Ayers family tons of love.

I had a post about how we experienced our first rejection from a private pre-school. I had wanted to write about how hard it was to feel that rejection based on fear and ignorance. It was a pre-school, it was for three hours in the afternoon. It was only going to be for 6 weeks. I wanted to write all about how I understood that this would be the first of many for Simon. "You can't... Not a good match. He won't be able to...I don't think so.."
But I don't care right now. I might tomorrow and even make the call to see if there's any possibility of changing their minds but right now, this morning, it doesn't matter.

Because Simon is still here. He sat on the couch and played with his Ipad while getting a tube feeding. He told me he was frustrated when we had to put it away and head out front to catch the bus for school.  He will come home and nap or not nap today.

So how do I let go of the terror I feel when he's sweating again while sleeping these last few days? How do I even consider sending him to an after school program where there will be a host of new germs just waiting to vacation in his sweet little body? How do I plan for a trip to Albuquerque this coming June where the elevation is going to demand his heart to work harder? How do I send an ocean of love to a woman that I've never met but feel a deep connection with because of a diagnosis that our children share?

How do I go through my day today not wanting to touch and hold and kiss and smell and laugh with my little boy for fear that tomorrow might be....different.

It's exhausting not living in fear. I think that Jaime and I do a really good job of it. If you'd seen us playing an impromptu game of tag/laugh your guts out the other night at the drive-in burger joint you would have been really proud of us. We are a happy trio J, SL, and I.

But it's mornings like this where I feel the fault line's shift and the ground doesn't seem so stable. I know that somewhere else a earthquake has hit and a piece of someone else's world has fallen away.

I live in California where there's a lot of talk about fault lines and where and when the next one's gonna hit.
I also live in a world with Cardiomyopathy where the same is true.

Sucks.

Getting ready to dance (don't ask- just take it in)

With cousin Charlie- all dressed up and hittin' the Town

 Sleeping with Mama on the Train to Sacramento

So this is the Capitol- This is my "I have no faith in Government" face

Riding the Old Steam Engines in Old Sacramento

 At FairyTale Town with Mamaw

 If I only had a heart (that was smaller and not spongy or dilated...)

 Dude, that's big

 Birthday Party Cupcakes (A La Godmommies Dre and Joan)

Yes you are!

Just take those old records off the shelf....Risky Business anyone?

This is how we do it.

Four, Cuatro, Arbah, Quatre, Vier, Quattro

Four years ago today on our living room floor, Laura pushed and heaved and worked and strained and BLAMMO, there was a baby in our house.  My first words upon seeing this baby's face were, "It's alive!" and Laura's first words were, "It's a baby!".  Our midwives looked at us kindly and said something like, "Um, yes, guys.  It's a live baby. That was kind of the the whole point of this endeavor".

It was just the beginning of the shock I sometimes feel as a parent.  Today Simon turns 4 years old.  I have no idea how we got here, especially when I consider what an incredible journey this has been.  Sometimes it has been what my friend Abby and I call "a puppet show" which is short for "awful puppetshow bullshit" (Simon went through a phase when those were his three favorite words it's now our shorthand for a total nightmare).  Sometimes I've felt more connected and loved and cared for than I could have imagined.  It's been one big crazy mix for *4* years. 

Despite feeling like we might crack up from lack of sleep due to Simon having back-to-back illnesses, Simon turning 4 feels pretty awesome. He is an incredible little person.   My Facebook page is peppered with his hilarious comments and actions.  My thoughts of him (99% of the time, anyway)  are filled with a sweetness and gentleness I never knew I was capable of. He is more verbal than ever and is excited about this birthday in a way he has never been. He has been saying "I'm almost 4" and "open some presents" for weeks now.  Makes me grin every time.

This year, Simon will receive a remarkable gift.  Tony Osso, a filmmaker from New York, did a short documentary film about our family as part of something he's doing called The Devotion Project.  He decided to release our story on Simon's 4th birthday, April 9, 2012.

Here it is :http://devotionproject.tumblr.com/page/2


Tony tells the story of how much our family loves each other in ways I could never truly convey to Simon myself.  I have all sorts of feelings about how we look and sound and are we so cheesy, but ultimately I am so grateful to see our story told with such honesty, care and thoughtfulness. It brings me incredible joy to know that Simon will get to have the love story of our family recorded in a way that he can access whenever he has doubts or fears or just needs to be reminded of where he comes from.

Thank you, Tony.  This is the best birthday present I could ever want for my son.

Then

And Now

Walking the talk- with a pragmatic speech delay

I was 16 when I had my first "OMG, the world is not the way that I thought it was" moment.

I was a junior in High School and invited to attend a Conference that the Mayor was sponsoring on 'Race Relations' in schools.

This was New York City so there were a few things to talk about. There were students from every High School in the city. Some were college bound, some got their clothes from the lost and found. We were Gentiles and Jews, Muslims and everything else New York had to offer. We were all shades of New York and I was so excited to be a part of a dialogue where unity and what the next generation had to offer was the focus.

I attended a workshop entitled "Violence in the Halls- more than just fist fights" and was surprised to find myself the only white person in the room.

Very quickly the conversation turned from introductions to deep sharing. Voices got raised, tears were flowing and hurt after hurt got named. Heads were nodding, hugs were given and there seemed to be a common understanding about how vicious fellow students, teachers, administrators, and other people's parents could be. Except by me.

I had nothing to add. So I just listened.

Apparently word  got around that this particular workshop had gotten really heated and when we were done and opened up the double doors to our smaller room, there were people gathered around to see what had gone on. This included a number of reporters that were there to cover the conference for the Mayor's office.
I was ready to step aside and let folks who had actually spoken during the session share what had gone on when something significant happened.

Every single reporter (at least 4-5) made a beeline for me.

A microphone, a camera, and several notepads, all in my face to find out my take on what had happened and was I "attacked" during the session.

Crash! That was the first time that the facade of the world that I thought we all lived in came crashing down and a whole 'nother perspective came in to view.

It was one that was painful to look at. The world was not the way that I thought. People really were treated differently.

I spent the next 20 years looking for more of those moments. It broke my heart. It broke it wide open to hold even more of the world that I actually live in. It was a spark that linked understanding to action and while sometimes it burned (like when I got a serious talking to about taking up too much space during an anthropology class in college) it also gave me direction and community. I chose to be a social worker in schools so that I could work and play with children and the adults they spend time with, helping to create a culture of overt anti-racism and unlearning oppression (and yes celebrating diversity too). I went to work with white people and knew that while diversity was essential there was/is work to be done before we share space (and power) with people of color. I represented. I said the wrong things over and over. I found other white people to work shit out with. It was my professional, my personal, my spiritual life. I wanted it to be a part of each and every day and each and every way I walked through the world.

And then....when I was 36, my professional life dropped away. My personal life became about 18 hour days in the ICU and my life in connection with the Spirit came down to a faith that the life of my son was to be celebrated in every waking moment because who knew how much longer he would be with us.
My days got filled with ejection fractions, syringes, visitor badges, and staph infections. Later moving on to developmental delays, feeding tubes, Dr's visits, OT appointments, PT appointments, Speech therapy, early intervention, special education, and a larger germ pool.

I'm a stay-at-home mom of a 4 year old with developmental delays, a heart condition, a feeding tube, who loves robots, drumming, and is no where near being ready for potty training. He's also nowhere near being able to understand that his mommy's heart is breaking for what our society is doing or not doing now that Trayvon Martin is dead, and Shaima Alawadi is dead, Wendell Allen is dead, and Oscar Grant is dead. It's not just nor has ever been just differences and inequality. It's violence and people grieving their loved ones.

So how do I walk and talk my heart when my kid's not even consistently understanding that he has poop coming out of his tush? How do I let him know that he's gonna grow up balancing his significant privilege with some significant setbacks? How do I let him know that there is room for both as he walks through the world and the challenge is to not become stagnant in either? How do I manage the tube feedings and fights with insurance and ordering meds and trying to find appropriate summer programs with what used to be my life's work of uncovering/understanding/unlearning oppression?

I don't know. I do know that parenting is hard. I know that this 'parenting plus' thing is really fucking hard.  I know that I want so much for Simon...in regards to his living with Dilated Cardiomyopathy but also just living in this beautiful and brutal world. I want Simon to grow up to be a man that works on understanding and dismantling unjust systems. I want him to do it with all the love and energy that's been been sent his way and has been essential to his thriving.

And he is. And other people are not. It's not an easy uncomplicated life. It's just not.


Some pics from the last few weeks with family celebrations and visits.

Simon and Hat

 Delight

 Checking on the Chickens with Wanda

 Gathering Eggs

 Harvesting Greens

 Smelling the Greens

 Traffic Jam in the living room with Moses

 Switching vehicles doesn't help

 ...but carpooling does!

 Snack time with MM

 Someday I'll have a goatee like yours PopPop

To Err is Human....the PTSD is Mine.

I know I have it. PTSD.   Sometimes it makes me err on the side of caution when it comes to Simon and symptoms. This last week I felt like that parent that calls the Dr too many times for something that's  'clearly'  not worth a weekend pager call. Sometimes I'm spot on.
Sometimes it's the PTSD.
I can't imagine going through what Jaime and I went through with a 4 month old baby and not having quite a bit of residual trauma. I know it lingers like a constant low hum in the background of my days. It gets a little louder each time I draw meds, or do a tube feeding. Just a slightly higher frequency, almost imperceptible.

Then there are the moments when it's blaring.

Sometimes a dark and brooding symphony- Our twice or thrice yearly cardiology visits
Sometimes a cacophony- Getting readmitted for pneumonia Dec of 2010
And sometimes it's simply nails on a chalkboard.

Like the last week.

I had two different Dr's- both schooled and extremely well versed in managing 'sick' kids- tell me that Simon's most recent sickness was neither pneumonia or heart related, at least three times on three separate visits. I had a chest x-ray confirm what their stethoscopes were telling them. I had a little boy smiling and asking for bowling on the Wii during his overlapping doses of Ibuprofen and Tylenol.

Still, the sounds coming from his chest during waking and sleeping hours, the wheezing, coughing, and labored breathing, were all too familiar in a nightmarish sort of way.

Those were the sounds of Cardiomyopathy before I knew the word cardiomyopathy. It makes all x-rays and Dr's reassurances fly right out the window and bring on a feeling of terror that I can only describe as that nails on a chalkboard vibration. But it's my fingers on the chalkboard and I can't leave the classroom.

This week has sucked. It's felt like an anvil is swinging over my head and I can't tell how strong the cord is that holds it. I guess the anvil is always there, it has been since Aug 1st 2008. Most days of the last 3.5 years I feel that anvil suspended by a stronger and stronger cord. The stronger Simon's heart gets, the more secure that anvil is. It still dangles just above us but on good days (of which we've had so many) I am standing at such an angle that I hardly even notice or feel the chill of it's shadow. We've had so much sun and warmth and light.
Still it's up there.

On bad days I feel centered underneath it and am aware on a cellular level that it's never going anywhere.
On really bad days, I can feel the cold and know how heavy that fucker is. It feels precarious. Held only by a thin wire that 'you know who' is playing like a violin string with her massive bow. A dissonant high note. A prolonged screeech.

Lying next to a wheezing Simon all night I felt Death come back for a visit to play me some music.
Some part of my rational self knew that she wasn't here to connect with Simon. The Dr's and X-ray told me so.
But that brand new mom of 2008 felt differently. She was back to draw her bow across that string that runs through me. It plays a note of sheer terror and makes me vibrate from my core.

So fucking melodramatic right?

But that's how this PTSD thing works for me. It feels like a violin string that was strung 3.5 years ago and for the most part lies loose. Every once in a while, it gets tightened and played. It's been/I've been so taut for the last 7 days, it's exhausting. I spend almost every waking/sleeping minute of the day close enough to Simon to hear his breathing....when it's not labored and loud.
So when he's not well enough to go to school, you can take out the 'almost' from the previous sentence and get a sense of what the last week has been like. But wait....then add in Simon sleeping in the same bed as us, wheezing, hacking, and gagging from chest congestion, albuterol administered (sometimes easily, sometimes with bear hugs and tears), fevers in the high 103's, and sweating AND THEN you can maybe understand what the last week has been like.
I say maybe because unless you were ever told that your child is in congestive heart failure and if they don't intubate right now or he'll "poop out", then you might not completely get it.
There's a certain kind of PTSD that you have when you get handed the chronic- could be fatal- diagnosis for your child. It's even more out of your control when it's your child and not you.

I know how far we have come from that time. I see it and feel it everyday. Even when those days are filled with awful chest infections (and now newly diagnosed ear infections). AND, there are those moments when time feels multi-layered and it's not that far away at all.

There are those of us that live with anvils, some more secure than others.
There are those of us strung, vibrating with notes that no one else can hear.
I know that I am not alone in this awful awful orchestra.
And I also know that the larger piece of music, made up of  these children, is so breathtakingly beautiful and rich and complex, that I don't want to miss a note, even during those more dissonant movements. I still need to listen. To play my part.
Simon is music to my ears, harsh and chalky, and sweet and joy-full.

Still, I'll take his laugh over a wheeze any day.

Slumber on the Mama- the best place to slumber

On the way to FairyLand with Grandpa Eddie and Mamaw

Someone's not looking so jolly on the Jolly Trolley

Horseback riding therapy with Maya- I think Simon's got a little crush

 (I think Maya does too)

Simon's working on his hipster look

Robot walking in the Redwoods

Dude, those trees are tall

And this is how you hug a tree

Climbing

Less than a month away from being 4!!!! Can you believe it.

Dayenu

Dayenu- it means 'it's enough'. It was enough, it'll be enough. Enough.  It gets thrown around during Passover or in Jewish grandmother imitations. It gets said with a shrug of the shoulders or a palms up gesture.

I've lived the not-Dayenu life a lot more than I've lived Dayenu but recently I'm feeling Dayenu quite deeply.

But first some catch up:

Simon had his regular cardiology visit last Wednesday. It had been 4 months since his last and included 3 med changes (dropping 2 and cutting one by a third). It required some weight gain, and generally was a little more weighted than a visit had been in years. We arrived a little early and were spending some time with our old friend the puffer fish when we're called in for our echocardiogram. It's a new tech and Simon does splendidly even helping move the wand around at one point to get even better pictures of his heart. We are making friends in the waiting room and charming old friends that know us so well. All in all a typical visit (that of course I have been stressing about for weeks).

Captain HunkyPants, I mean Dr Rosenfeld, only keep us waiting a few minutes before meeting us and strides in with his usual greeting of "he looks great." Only this time it's followed by "so, his numbers are really different than last time....".

Thud.

Crash.

"I looked at the Echo and his heart looks the same but his numbers are really different."

Me- "Do you want to tell me what they are?"

Pause.

I am mentally packing the hospital bag in my head, thinking of who to call and in what order.

"I'm going to just go look again."

He doesn't even want to tell me the #'s and walks out. 

It's almost like the first time we heard the diagnosis. Almost.

We've been so stable for so long.....what the fuck is going on? I know how possible this is, I know it can happen. I know that numbers and echos can change long before there are symptoms....i know way too much about all the possibilities.

Longest 5 minutes ever.

"I think the echo tech wrote the numbers down wrong. I did a recheck and the computer even gave me new #'s that matched what I thought. His ejection and shortening fraction is are the same as last time. EF is 50 and SF is 28. I think they were 55 and 29 last time so that it could just be reader error and his heart looks the same so we're in a great place given that we decreased his meds last time and he's holding steady."

No blood draw. No changes. No problem. Except for the few minutes of feeling my world turn upside again, and then be righted, it was a simple and sweet cardiology visit. We don't go back for another 6 months! (which by the way will put us back on August 1st, the 4th anniversary of Simon's diagnosis- sounds more like a party than a visit to me!)

The week ended on a high note with Simon eating a full ounce of food by mouth (Trader Joe's Tomato Red Pepper Soup!) and a return to sleeping through the night after almost 6 weeks of transitions, rough nights, and stomach/chest infections.

Whew. I think I took a breath! 

Then, about a week ago. Something changed. Simon learned and has begun to own 'I don't want it!'

It's a combination of words sure and for many toddlers/pre-schoolers, it's a way of life.

Their little selves are developing so fast and they are taking in and understanding so many new and exciting things that often, they themselves can't keep up with it. In Simon's case, it's so clear that he is understanding and wanting so much more than he can express, and it's frustrating the hell outta him.

I do not use that euphemism lightly. It is like my child has turned from a sweet easy going kid to Satan's spawn. He's like a demon child but with a feeding tube and gross and fine motor delays not to mention pragmatic language concerns and that dang heart condition.

So while I appreciate the low muscle tone when it comes to him lashing out and trying to swat me as I attach or disconnect his feeding tube, I am heartbroken over the lack of understanding that seems to be present around not hitting, cleaning up, moving from point A to point B, and generally not getting to sit and watch TV whenever one wants to (him not me- although I'd love to catch up on Top Chef someday).  I think about all the other parents going through this and still....I feel so sorry for myself for all the other work that us 'parenting plus' parents have to put in. Really, it's a pity party over here.

And then I remember. Dayenu.

And it's not a theoretical Dayenu. It's real, just next door, with names and faces attached to it.

Dayenu that Simon is moving, however painfully, through this typical developmental stage.

Dayenu that he's cleared to go to school to see and be around other kids. 

Dayenu that he can string those 4 words together.

Dayenu that we all share a bedroom so that he can climb from his bed into ours for 1:30am snuggling (and that it's not us sharing a hospital room together.)

Dayenu, that his medications are administered through his g-tube and not a central intravenous line.

Dayenu that we've had the last 3 years and 3 months not wondering if we need to head back down to Stanford for another heart transplant consult.

Dayenu that Jaime and I can still find love for each other in this time of parenting plus
Dayenu
Dayenu that we are moving from his braces to simple orthotics. Yes he will wear high top sneakers with his dress suit at the Passover  Seder, but he will rock that look and no doubt trends will be set.
Dayenu that he took 5 bites of food at lunch. Dayenu that those bites are the size of one spaghetti O or a grain of rice- they ARE being chewed and swallowed.

I could keep going on but the reality is that it's still hard. When Simon is done eating and throws his food across the room, it's not the same as your typical food throwing pre-schooler. There's the food that I've carefully chosen and prepared for him/us to eat during a therapeutic meal, there's the food that I've prepared for him that I know he'll enjoy playing with, there's the food that I know is appropriate for him to be able to chew and swallow (that he may not like as much as the chicken bone slathered in bbq sauce), and then there's the blended organic whole foods that I have carefully measured out in terms of volume to calories that I have the benefit of pushing through his G-tube and not worrying if he likes the texture and flavor of but is a bitch and a half to monitor (and smells so foul when it gets brought back up.)  So when that tiny little handful of mac and cheese goes flying and the low toned arm lashes out to hit my face, it hits the frustration button a little harder than it might for most.
Dayenu that he is expressing himself right? .............right?
I know it is. I pray/ know it's just a phase and an essential one at that. I do my best to take a deep breath and tell him over and over, time and time again that it's not ok to hit. I don't like it. It hurts me ( I don't go in to the emotional pain versus the physical pain, that will be for when he's 4- besides I don't want him to get a complex about his low muscle tone- that's for when he's 4 too).

Still, it sucks. It hurts so much more than I can express when we're sitting watching TV and I have to turn it off because the tube feeding is done and it's time to get to the dr/therapy/special Ed class and I get a tantrum that brings on a barf..
When we're sitting down for our therapeutic meal and I have actually chosen everything that has been asked for and don't even get to the table before hearing "I'm done" and pushes himself back from the table, swatting at my hands while I'm not fighting him but simply trying to unbuckle him from the high chair so that he doesn't get his feeding tube  pulled when he gets down...
 When we're walking down the street, he wants to stop for something, can't express it in words, and simply throws my hand away/pushes me aside/ says "I don't want you Mommy"....
I breathe it in. Try to separate the smoke from ash, work on not letting it burn and figure out the next step in getting to Trader Joe's to pick up more snack foods for the child.

It's what we do, we moms and dads and aunts and uncles and grandmas and grandpas and all other form of caregivers to little ones. For those of us with Littles that have that 'little' something else going on, those of us that wait months and years to hear our names spoken, take that first walk, enjoy that first shared meal...it's just that much harder.

I have wished and prayed and cried for Simon to have 'normal'. All I want for him is to get to go through life with the same chances and choices that anyone else might.

Is it so much to ask to have that happen without him ever questioning anything I say to or ask of him. I don't think so. Dayenu.................right?

A boy and his dog

A boy and his GG

A boy and his new bike trailer

A boy and his band

A boy and his extended family

 A boy, his Mama, and some tall trees

A boy and his new friends

A boy sleeping

So grateful for this boy