Hard, Ham, and Holy

It's been quite a week here at Team Shimmy headquarters. We've had one public speech display (Jaime), one of the busiest weekends I can remember (all three of us), a meet and greet roundabout (Shimmy), and some of the most awesome displays and timing of urination (again, Simon). But really what I want to talk about are three things.


Let's talk Ham first.

Simon is an incredible ham. It's truly amazing to watch. Sunday night we went to a family dinner at Karen & Alicia's where Simon seemed quite out of sorts. He'd woken just an hour and half into what is usually a two to three hour nap and was not happy about it. It was hot in the city and there were no smiles or peekaboo games to be had and this was around a number of his favorite peeps. Little man was just pissed.


With another social engagement to go we toyed with the thought of just going home and calling it a night. Instead we loaded up on Infant Tylenol, and hoped that Simon would sleep on the 45 minute drive down to Palo Alto.

No sleep but some serious dozing and when we arrived at the Mamaw's end of the semester potluck (full of people that have been following the blog, sending love and prayer, and supporting Dianne through all this), the little man not only woke up but he was the light and love of the party. He literally made his way (on his own) around a 50x50 room greeting, pulling up to standing on, and generally flirting with about 20 different women that are a part of the Women's Spirituality program that Dianne runs at the Institute of Transpersonal Psychology. He was amazing to watch 'work a room' barely glancing back to see if either of his mom's were around. He did but barely. Total Ham.


Here's the Hard.

We did a lot of socializing this past week with both people that we've never met, people that are one or even two circles out from the first tier, and of course lots of wonderful dear friends.

It's hard when folks from the first two types meet us and/or see Shimmy and go on and on about how healthy he looks. Or, ask us how he's doing and don't quite wait or even hear the very careful and thought out "he's stable" answer. Instead there's the "it's so amazing that he's better" and "it's so great he's so healthy."

It's hard. How do you explain that Simon's heart is still operating at 1/3 or less of what it's supposed to. How do you say "yes, but with Cardiomyopathy there's still the reality of sudden cardiac arrest at any second." Folks just don't seem to be able to hear that and/or neither Jaime or I can get it out in such a way that make folks understand. How do you explain compensatory heart failure to someone that really is just wanting to tell you that Simon looks so good but when they do it brings up all the "yes buts" that tear your heart just a little.

So why not just let it go and take statement for what it is? I don't know why but I can't. I want people to understand that as good as Simon looks and seem to be....he's not. I want people to get it. I want people to understand Cardiomyopathy the way that I've had to. It's not fair but I want them to.


I know people want so desperately to believe that what they see is what they get or (lovingly) that's what Laura and Jaime get. That's the harsh joke of Cardiomyopathy or at least Simon's version. Not to mention that there are so few that get to see the syringes, the Echos, the random sweats, the medication, the puking and the pump.

What's hard too is that every "it's so great he's better" is a sharp reminder to me at least that he's not. He's far from it. His looking good, amazing energy, and sweet sweet life's force are really paper thin. They're real but they're barely there.

It's hard to be reminded of that. And I would never ask people to stop saying the truth of what they see. Simon is a bright light.


The Holy.

Sometimes in life there are things that just happen that are so sweet and full of what feels 'right'. My life feels full of the sacred and silly. It's amazing even in that when something stands out.

Here's the back story:

At least a year ago I had an interaction with one the 'regular' folk in our neighborhood. He's a man that I'd seen several times around Lakeshore and because of his knit hat that he always wears, he was just one of those recognizable neighborhood folk.

Once, we were walking towards each other and I was on the outside of the sidewalk. As we neared I assumed that he would move over so that as we passed we wouldn't walk into each other. I couldn't move over since there was the edge. He didn't budge and we bumped shoulders. It was just one of those awkward moments that was just outside of our cultural comfort zone. "Normally" we don't touch people as we walk by them. I was just a little perturbed.

Several weeks later Roxie and I were out for a walk, again coming down Lakeshore heading home. Roxie tends to move over to the outside of the sidewalk so that she can sniff the various bushes and garbage cans that are spotted along the block.

Again, we're walking and I see our 'friend' walking towards us. Again on the outside of the sidewalk. Again, I assume that he'll move over a little bit to his left given that I would have to either step into the street or move all the way across the sidewalk quickly with Roxie to get out of his line of step.

Again...no such luck. We bumped shoulders.

I couldn't help myself "it would be nice if you moved over a little sometimes" I said.

What followed was a most unpleasant exchange. It was downright ugly and left me shaken.

More than anything I was confused and felt righteously wronged. What was even worse was that I knew we would continue to see each other as we both clearly lived nearby.

So there I was the next morning, walking Roxie, when of course I saw him from half a block away. I immediately went through all the things I wanted to say to him about our interaction and his wrongdoing.

As I got closer I felt my whole body tense up for yet another altercation. Less than five feet away from him something happened. I had a flash and knew exactly what I needed to do.

I walked right up to him and apologized. I said that I was sorry for our interaction the other day and that mostly I was concerned about Roxie not acting out. But mostly that I was just sorry.

He apologized right away as well and let me know that he's usually not that quick to anger but it had been a rough day. He went on to explain that he has a vision problem and that he's been trained to walk along the outside of the sidewalk following the line. He also apologized again for his reaction to me. We exchanged names and since then Stephan and I always greet each other warmly whenever we see each other (which is about every 3rd or 4th day). I always look for him in his regular spots (Noah's bagels or the Donut shop across the street) and he always asks how "the baby" is (knowing a little of Simon's story). It's been a very sweet relationship born out of a very sour moment.

Yesterday as Simon and I made our way around the Lakeshore strip, saying hi to all our folk, we passed the Donut shop spotting Stephan in the window, we stopped to wave hello. He motioned that he wanted us to wait and come to the door as he clearly wanted to say something to us.

"I've been looking for you for a couple of days."

We exchanged simple pleasantries and then Stephan asked if we wouldn't mind waiting a minute while he went out to his car to get something.

In a few minutes he returned with a not so small wrapped gift from Babies R' Us and handed it to Simon.

We ripped the paper together to find a really cute pink beanie baby tiger.

I couldn't believe it. He had actually gone out of his way to not only think of us but actually buy Simon a present.

My heart felt so full of love in that moment. That kind of Agape love that is just about as pure as you can get. Like a baby's first laugh or spontaneous hug.

Something so ugly turned into something so beautiful. That's Holy time right there.

We made a pact right there and then (after hugging a lot!) that Stephan would be Simon's Chess teacher. Neither Jaime or I know the game and it's one of Stephan's passions. (He plays for hours at the Donut Shop, reads books on it, and said that he has a child's board at home).

I love thinking about Simon learning chess from Stephan. Love it.


Ham is awesome. Hard is what it is. And Holy....well Holy is what changes your life and makes it full of delight and wonder.

"I'm training to be blues man"

Grrrrrr

I love me some (whatever this is on my hand)

Sorry So Long

I've heard now from several people "it's been a while,eh?" (and I don't just mean the Canadians).

Here we are one day into Simon's new diet and so far so good, on so many levels. At our last GI visit we got the go-ahead to switch Simon from his infant formula to something more age-appropriate and got a prescription for Pediasure. On Thursday we found out that it would in fact be covered by insurance (that's a little more $$ that we don't have to spend...so it can go towards a YMCA membership-yeeehaw!), and on Friday night we began the month long process of switching over. We change 25% a week so his little tumm can get used to it.

*warning- poop talk coming up*

And it's so amazing but Simon's poop is changing. This has been happening since about a week ago but the little man has started pooping turds rather than the usual diaper-fill-'em-up baby poops. I can't believe I'm going to say this but...it was so exciting to see his first turd!

*sniff* my baby's growing up. I had to make Jaime change his diaper today just so she could get a first hand (literally. Hah!) feeling for what I was talking about.

Poop talk done.

He really is growing and changing day by day. He crawls at a fairly rapid clip when he really wants to get somewhere. He pulls himself up on just about anything-including Roxie. He has clear likes and dislikes with books, stuffed animals, etc. He will instigate playing certain games, like 'Peekaboo" and fake-yawning or coughing. He's bringing more and more things to his mouth for tasting and playing. He is hugging and kissing inanimate objects on command and hugging and nuzzling his Mommy and Mama with delicious abandon.

It's been a sweet and exhausting time as of late. Jaime and I are hitting new and deeper levels of co-parenting (that's a cake walk right?). And there are some new and completely open ended questions that have come up in the medical department (that's another post coming soon).

So I'm sorry for the gap between posts and not sorry at all to have so many of you ask when the next one's coming. It just means that the Fitch-Jenett family is three strong but so so many more.

Love love love

Laura

Busted playing with a Cheese Puff

Mr. Longhair practicing walking with his little cart & baby doll

A boy and his dog

GI update

I don't consider myself a huge "worrier". I don't carry my stress over Simon for too long. I feel pretty good about how well I am handling all this.
And Doctor Gleghorn makes me feel like a worry wart.
I think that's awesome!
Simon got winning marks for his GI visit. Here are some highlights

• We are no where near talking about a Nissen for him. He would need to be vomiting up blood, in terrible pain while barfing, and/or failing to thrive. Simon has never spit up anything other than formula (occasionally a little neon green bile), he has around a three second bounce back after blowing chunks, and failing to thrive...? Please. Have you seen the little chunker lately. Dr Gleghorn actually put him a slightly lower calorie daily intake plan.

• We are switching over to an age appropriate formula that, by all accounts, should be covered by our insurance. We'll see if they go for it without a fight and a ton of red tape (that's just what I've heard from a couple of other families- thinking optimistically though)

• We are cleared for swimming!! I just finished writing what I think is a heck of an application for financial aid to the Downtown Berkeley YMCA. I included two pictures to really work their purse/heart strings. One from August 2nd and one from his birthday. I'm thinking they might actually pay us to come to the Y. Naaaah, but I'd take a nice scholarship so that we could go swimming a couple of times a week :-)

I feel light as a feather.

Simon's beautiful beating heart

It's hot today.
During the afternoon we (meaning Simon) stripped down to just a diaper and spent most of the post nap afternoon hanging out as such. At one point Simon is across from me playing with his singing cube. He's standing at it and I can only see him from his belly button up.

I see my son's chest. I see the small amoeba looking scar from his broviac line. I see his blue varicose veins from who knows what. I see his beautiful chunky little baby/man boobs.

And I see his heart.

No, I have not developed x-ray vision (that would not be my super power of choice anyway) and no, Simon is not breathing or working so hard that I can see his chest heaving or heart beating.

But I see it. I see it in my mommy/minds eye. It's big and red and beating faster than it should but it's there. I see it. It fills his chest cavity. I see it working for him. It's vibrant and shiny and it's his heart. I love that little but too big organ.

I love it with all my heart.

Oh yeah, and I'm so frikkin' tired of vomit.

We go to see the GI doctor tomorrow and will hopefully have some sort of 'next step' for Simon in regards to his throwing up. It's not about weight gain anymore. The little chunker has more than enough to lose.

It's about what all the throwing up is doing to his poor esophagus. He's clearly conquered any sort of oral aversion, even his swallowing is getting better and better. Even while simply playing with food, a gag/heave won't deter him from bringing whatever it was that he was just playing with back to his mouth.
So what will it be. More medication. Are we at the Nissen stage?
(a nissen is a surgical procedure where a part of the stomach known as the gastric fundus is wrapped around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily.)
What!? I don't know. More surgery?!! Hard to think about.

Otherwise he's doing so well. He's put on more than enough weight. He's making great strides with food orally. He's pulling himself up on just about anything (including Roxie!) and he's starting to make new and exciting sounds (Fsshhhhh anyone?)
The other morning he actually pulled a book out and started turning pages on his own.

He is amazing. Doesn't let you forget it either.

Jaime here:
This weekend was so mixed for me. I was very grumpy for the first 2 days and then we had a great Monday with a BBQ with a bunch of friends. I was grumpy until I had an epiphany on Sunday evening.

This Memorial Day weekend was the 4th anniversary of Laura's traumatic brain injury.

The actual day is May 31st, but it was Memorial Day 4 years ago. Laura and I talked about my bad attitude Sunday night. I remembered that my predominant emotion about the accident, after the fear mostly subsided, was anger. I was so angry to have to be going through something so traumatic by myself.

It never occurred to me, prior to her accident, that her not being "present" was a possibility. I'd been so proud of myself for not picking another depressed substance abuser, as had often been my pattern. I had finally picked an incredibly present, caring, emotionally healthy woman, finally. And then, I had the most traumatic event of my life and she wasn't there for me.

Intellectually, obviously, I knew it wasn't her fault, but goddamn was I angry! Our friends were incredibly helpful, supportive and loving, but my root system was suddenly gone. My very best friend, the one I could tell anything, the one I could be vulnerable with, was M.I.A. And, not only was she not "present", she was helpless (for a while, anyway). She couldn't be left alone, she couldn't drive, she couldn't work and she had no affect. No anger or sadness, and also no interest in or excitement about anything. Oh yeah, and we were due to get married in 5 months. How romantic.

Laura slowly recovered, returning to work 9 months after the injury and was *mostly* back by a year post injury. Our wedding was amazing. Still, our first year of marriage, that was supposed to be this blissful, easy, fun year...in a word...sucked. I was traumatized, my wife was slightly depressed and frustrated and our power dynamic was all out of whack from me having to take care of her. It took me to the end of that year to realize how angry I was, about all of it.

I have mostly worked it out but evidently the emotions come back now and then to remind me how hard that year was. I often pretend that hard stuff is water off my ducky back, but really, some of it really sticks. As it should.

I say this all to say...on Sunday I realized why my experience with Simon's illness feels more bearable than I would have imagined. Because I have Laura at my side, 100% present and going through the same hell, in the same sort of way that I am. I felt SO alone when she had her head injury, but I don't think I've ever felt alone with Simon's illness. Part of it is our incredible network. (Thank you!!!)

But a very large part is that I have my roots back. We are two strong trees standing tall in the face of the absurd, roots touching beneath the ground, instead of one lonely, spindly, dazed sapling bent over looking at her life's love sticking out of the ground, parts going this way and that, in disarray.

Laura's love, support, listening ear, ability to express emotion and ability to be present has made the unbearable bearable. Unconditional love by a healthy person is seriously the best medicine. You should go out and get you some. Seriously.

No News is..no news (& good)

We had our regular monthly Cardio visit yesterday (always makes me think of cardio as in exercise- Jane Fonda anyone?) and well...there's absolutely no change. That's a good thing, right?

I had to remember that we're running the super iron man marathon and while even though a month feels like a million miles ran, we have so much longer to go and there won't be changes that we'll be able to see for months maybe even years at a time.

Pace yourself Laura.
Pace yourself.

That doesn't mean that I didn't have a little fantasy daydream while we were post Echo but pre HunkyPants visit.

There Simon and I were. Waiting for Rosenfeld to come in and tell us the results of the Echo Simon sat (beautifully) through. It was taking a little bit longer than usual and I saw him walk by our room a couple of times giving me the one finger "one second" motion.

In my fantasy he was going around trying to corral Patel, Casey, and Newkhumet so that they all could be there to share the news that Simon's function had drastically improved this time.

It was such a nice fantasy.

Not this time.

Everything's the same. Exactly the same. Simon's still in heart failure. No increase in function but no decrease either.
He's gained weight really well and once again we just had it confirmed, "look at the boy not the numbers".

Well, when you look at the boy he looks pretty damn good. Incredible in fact. His eyes sparkle. His smile reveals a sparkly set of teeth (we're at 6 now!). His cheeks are round and pink like his mommy's. He'll pull himself up on just about anything. He's lookin' gooooood.

Still, it's a nice fantasy to hold on to.

It's not like I was crushed that it didn't happen. I just felt like "ok, it's not this visit. Probably not even the next. But, some visit...." I can really see it going down like that. Made me feel good.

Also, we got another month's reprieve from lab tests. Sorry folks, that means no BNP this month.

Rosenfeld asked if I was ok not doing them again this month since really he would only be testing for the INR (tests the effectiveness of blood thinning meds- in this case his Cumiden) and he's not that worried about it so would every three months be ok?

Hmmm. Getting the BNP # or not having to hold Simon down for a blood draw?

Guess how long it took me to choose.

So for those of you hankering for a # to focus on...how 'bout one of these:

8
The number of ICU Dr's and nurses that came out to see Simon right away when they heard he was visiting after his clinic appointment.

0
The number of times I needed to change his clothes today from almost no throwing up.

22/5.7
How much the little porker weights (twenty two pounds 5.7 ounces)

4
How many nights in a row that he's slept 9+ hours straight without waking up at all (Alhamdulillah!!!)

1
Roll of toilet paper that Simon learned to unravel during a brief solo excursion to the bathroom.


Yes, that boy can crawl rather fast now. Either that or I think he's mastered the science of instant teleport. Either way I think he's amazing.

Know what else is amazing?.... The continued support and love. I don't think I'll ever be able to express what it's meant to all of us.

Thank you. Thank you. Thank you.

Tired

Tonight I am tired.
I am tired of drawing meds.
I am tired of "hooking my son up" to feed him.
I am tired that there are #'s to be waited on, labs to be drawn and Echo cardiograms to look at.
I am tired of waiting for OT to start..
I am tired of hospital bills, co-pays, and insurance companies that can't get a damn thing right.
I am tired of extra shots and immunizations.
I am tired of counting every one of Simon's calories.
I am tired of never getting to wear the same clothes at night that I put on in the morning because of vomit.
I am tired of doing laundry.
I am tired of having to ask for help to pay the bills.
I am tired of not just getting to blog about milestones and cute moments.
I am tired of dreaming and planning for trips and visits that most likely won't happen for years,
I am tired of not being able to make play dates because of colds, fevers, whatever.
I am tired of worrying about how the weather will affect my son's heart.
I am tired of having to think about "training" people to babysit.
I am tired of sometimes feeling my life as a sliver compared to my life as a medical caretaker.

Tonight I am tired.
Tomorrow starts the weekend and time for Farmer's Markets and time with Jaime and friends, and many hands to make light things that are sometimes heavy.

Tonight I am tired and my heart is weighted down with how much I love my son, my family.

Late Night Comedy Show

Better than Conan, cuter than Leno, with better hair than Jimmy Fallon...It's the comedy stylings of Simon Fitch-Jenett after dark!!

Holy crap dude.
Simon was up until 11:10 last night (and that's just the time that I laid him down wide awake but at least quiet)
He was in rare form and we're not quite sure why.
The one reason we can think of is actually a great story to tell.

Simon had an amazing dinner time with us. He ate more than he's ever eaten and there was a marked decrease in his gagging and throwing up. He even opened his mouth and moved towards food that was being held a couple of inches away. It was a beautiful thing!!!
One of the new things he was enjoying were these Gerber food yogurt melts ("freeze dried whipped yogurt"). Total crap (the 2nd ingredient is sugar) but they melt quickly and he was enjoying them in a way that he hadn't other things. I think the sensation of it melting so quickly was 'safe' for him.

So Jaime puts Simon down for bed around 8:00 and at 9:00 we can still hear him talking to himself in the bedroom. He seems quite content so we just let him keep squawking thinking that he'll put himself to sleep eventually like he'll often do.
At 10:00 as we're getting ready for bed we finally hear quite and head into the bedroom. Simon is standing in his crib eyes wide open and just two steps into the room he greets me with a smile rich "Hiiiiii".
Jaime's on round one. She gets him quite again and lays him down. We brush teeth and get ready for bed. 20 minutes later we are lying down and thinking that it's late but not the latest that we've ever been up with Mr. Shimmy.
Another few minutes of hearing him rustle around in his bed and finally stillness. Then 30 seconds later I turn over feeling something not quite right.
There he is again. Standing up looking at us in the dark....pausing for dramatic effect before issuing forth a resounding "Hi" followed by an immediate "buh bwaaa bwaaa bye biiiiiiiyye bye".
Jaime and I cannot help but start laughing which of course only feeds his inner performer.
I take him out of bed and we settle into the rocking chair for what has been the "big gun" for sleep in the past. Essentially starting the bedtime ritual over again with an elongated James Taylor 'You can close your eyes'.
He's not having it. In between each verse he chimes in with a tirade of "bah bah shveeeshveeee bwaaaaa buh byeeee byeeeee".
(Little shit won't ever say bye bye to people in the moment but will say it over and over again now that it's close to 11pm at night. What the hell is going on?)
This goes on for another 20 minutes and he finally stops babbling and mellows out some. Jaime has also stopped shaking the bed with her silent laughter and I think 'ok, maybe now he'll fall asleep and we can be done for the night. I get up from the rocker and take the three steps over to the crib and as I lay him down he turns to me (a little exorcist like) and with eyes wide open, smiles at me and whispers short sweet "hi" and turn himself back over. I hear rustling for a little while longer but then he seems to settle into some kind of stillness.

What?!! Jaime and I can only come up with one reason for the evening.
The sugar.
I know that he probably only ingested 2+ but it could happen right?
Simon could have had his first sugar high.
I think that AND he's really starting to show us that he has a sense of humor are why we had such a night. Hopefully tonight will be a little more about sleep than shenanigans.
So far he's been asleep since 8:15 and it's now 10:02
Please, no more late night comedy.
Mommy needs to rest.

That's all folks.

Mother's day weekend

We have just returned from Gualala (in Mendocino County) where we spent a sweet Birthday/Mothers day/ Birthday weekend. Friday was my birthday, Sunday was Mothers Day, and Monday was Dianne's birthday. There was a lot to celebrate. I think I'm still full from all the special celebratory meals that we had.

Simon is still working his way through his cold. Days have been full of coughing and sneezing but still really good spirits but the nights...oh lordy be..the nights have been wicked. And not the kind of wicked since Simon was first born. I know that when I can't breathe through my nose night's are hard enough but when you are just 13(!) months old, not being able to breath through the place that you think you should be able to breathe out of...SUCKS!!

Simon Sez:

OF course lying down doesn't help and since I've just discovered that I love to sleep on my belly, I can't understand why my mommies keep flipping me over so I'm on my back. They think they're helping but really nothing does so why not let me sleep on my belly.

It's hard though when my mommies have also propped me up on two big pillows so that I'm not likely to choke on my chest phlegm that I am really good at coughing up into my mouth. Mmmmm. This is not a great way to get over my gag/swallowing thing. I'm working on it though. I'm getting good sleep during the day though cuz my mommies and Mamaw hold me upright while I nap. That is very nice of them.

It's also really nice when Mommy holds me upright at night. I can get some better sleep then. I don't think she does but developmentally I can't take that in right now. Like my bib says "It's all about me."

Dig it.

So there you have our long weekend in a nutshell. It was fantastic to be with family, so wonderful to breathe that ocean air, introduce Simon to the wonderful world of river rocks (an awesome and never ending supply of teethers), and just be together with very few distractions.

It was a great recharge.

We're home now and Simon is still snotty but last night only woke once and was able to put himself back to sleep in less than 20 seconds. It's still scary to see him struggling with a cold. It means so much more than when anyone else is working through a bug.

I just keep hoping/ having faith that even though his ECHO and EKGs and blood tests tell us he has no reserves, Simon actually has more strength and life working in his little body that his doctors or I can imagine.

Go little man, go.

Highway 1 does not agree with me.

Highway 1 might not but this sure does!!

So does this

Picture window? Or picture perfect?

My heart moves around

In 36 years I've really put my body through it. I've broken important bones, bruised organs, lost a few brain cells, and had almost every system in my body be out of commission or fairly damaged for some time (long and short periods). However, except for a very tiny tear (very tiny) in my aorta, I have never had any heart problems.

That is until I birthed a baby. And while it might look like Simon is his own person, complete with working arms, legs, eyes, nose, mouth, etc, he is in fact exactly what my sister said he would be, my heart living outside my body. So how ironic is it that it took me letting my heart go and live outside my body for it to also incur some truly difficult times.

Today is my birthday and I get to wax metaphorical and emotional.

I also find it funny that on my birthday most of what I'm thinking about is my mom. Certainly my mom and Dad but really all I know about is what a mom goes through on her child's birth day. Sure, there are an infinite number of experiences that moms have on their children's actual birthdays, because there are an infinite number of birth stories out there.

I know that my birth story is different than Simon's birth story. But, it was birth and I know that I was changed forever in that moment that he was lain on my chest, and then again when I thought that his time in this life was going to end too quickly after it seemed like it had just started.

Birthdays are changed for me forever. I guess that's what I'm trying to say. I think I know what they're really like now. Since we can't remember our own, it's as close as we can get. I am so grateful for the two that I got to be a part of; my own and my son's.

A bug was bound to happen

So it's here. Simon's first real bug. It was bound to happen eventually. I was feeling it starting for me Sunday evening, and by Monday I was really feeling crappy/achey but worked extra hard at drinking water, pounding echinacea and vitamin C and taking it easy. By Tuesday evening I was feeling much better and hoping that my washing my hands every five minutes maybe, just maybe, kept what ever I had from passing on to Simon.



No such luck.

Of course.



We live in the same house. I prepare his formula, his medications. I change his diapers, wipe up his spit ups, hold him close when he's upset, etc etc.



So by Tuesday afternoon when he had his first sweat going down for a nap I knew we were not in fact in the clear.



By the evening we were seeing his nose run (clear at least) and hearing a more regular cough.



F**K



Would this be the cold or virus that would send us back the hospital?



We called CHO to check in with the Cardiologist on call just to get more of a sense of what to look for in terms of Simon needing more care than we could provide at home. A spiking fever, respiratory distress and continuous vomiting.



Ok, we're nowhere near any of those so Jaime and I can both relax a little.

A little Tylenol and except for brief wake up at 4:30, Simon slept really well and showed no increase in symptoms this morning. Except for going to sleep 30 minutes after his 8 'clock feed he seems to be doing fine.

I hate how a simple cold means an avalanche of thoughts and feelings for Jaime and I.

It doesn't feel so much like anxiety but just this ticking down of all the things that it could bring and where our path might be turning. Could be an abrupt turn to a new (or old) state of care for Simon or simply a slowing down on the path that we've been on (more naps, less activity and outings), or something entirely different that we can't imagine because there are still so many unknowns with the way that cardiomyopathy works.

I'm breathing well.

So is Simon.

Yay for the little things.

I also like hearing from HunkyPants "oh, he'll likely motor through this the way that he has".

It was great that he was the cardiologist on call last night when we phoned in.

He also let us know that our next prescription refill for Carvedilol will be an increased dose.



That's exciting.



We didn't get a chance to go into it but I'm making the assumption that Rosenfeld called Rosenthal down at Stanford and they thought this might be beneficial to Simon's heart growing stronger.

I'll take it.

Just checked in on the little man. He looks and sounds like he's sleeping the deep and necessary sleep of someone fighting a bug. Comfortable and deep. Way to go Shimmy! I think he knows that we'd really like to get away this weekend and he's doing his best to be ready for it.



We have a long weekend with Jaime taking Monday off so that we can fully enjoy a Mother's Day/ Birthday weekend up in Gualala at Jaime's mom's cabin. I love it up there. Simon had a blast when we were last up there for the Winter Holidays. Roxie loves the beach. I love the Ocean and the quiet. It's sweet sweet family time. Kind of like agave sweet.



We just tried agave syrup for the first time (thanks for the recommendation Amira) and it's super yummy sweet but not rot your teeth kind of sweet. It's got a little bit of layering to it like a really good, not too heavy Creme Brulee' that leaves you with that hint of burnt caramel taste. It doesn't take over your mouth but instead leaves you feeling like you just woke up from a great dream and are ready to enjoy the next day of your life.



I feel like that a lot with Simon. I feel a lot of other things with Simon too and agave sweet is what I mostly feel with Mr Simon. I hope he does too.
Sure seems like it most of the time.
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.
.
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Heeeey

The Nature of Optimism

Jaime here:

We had Carol, one of Simon's primary nurses, over for dinner last night. We all had a great time, and, as we usually do when we see her, we reminisce a bit about our time in the hospital. Especially about how sick he was when he first came in and what a freaking miracle it is that he is as stable and happy as he is right now.

I think I always consciously or unconsciouly check in with her about how sick he really was because I often wonder if I was just being melodramatic and somehow exaggerated the seriousness of it all. Sometimes I need the validation of someone who has seen the worst, to confirm that, in fact, we were really damn close to losing him.


Confirmed.


At one point when we were talking about it she said very matter of factly, but not flippantly, "Oh yeah, we all really thought he would die. He'd get better and then he'd get SO sick again. It was horrible." These folks have seen so many kids die and so many kids get better and I suspect they're rarely wrong about which way things are going to go. Somehow we defied the odds, just by getting to where we are now, and it's still hard for me to believe.

Laura and I were telling Carol that actually most of our memories of the hospital are pretty good, oddly. I estimated that I remember about 80% pretty good times that mostly felt like hanging with new friends in a very strange place and about 20% the absolute worst moments of my life. Carol looked at us like we were from Mars.

"It's totally because of your attitude, you guys. You were so positive and so much fun to be around", she said. I realized that we had such a positive experience because we MADE it that. And then I started thinking about what made Laura and I different than other parents who were going through the same thing. Why were we optimistic in the face of what had the nurses thinking there was no hope? Why were we able to roll with what was happening and not split up, not fall completely apart and not wallow in misery, which in some ways would have been totally appropriate responses.

At it's root, I think , is optimism. To me, that means that in the face of the most horrible thing I can think of, I can still find something, even if it's minute, to be grateful for, to appreciate, to feel it brings meaning to the experience. And the reason we are still together, in part, is because we are both optimistic. I think discordance in that area or two pessimists together in that situation can be so so hard to work through..


I asked Laura if she thought she was raised to be optimistic or if she was born that way. She said she had not always been optimistic, that she had a period in her early teen years when she felt gloomy and dark. But really, since she was 9 and experienced community at Farm & Wilderness (the summer camp she was involved with until her early 30's) she was always on the lookout to recreate those good feelings. Then I thought about the same thing for myself.


I grew up always trying to make the best out of any given situation. I think some of that was my Southern Grandmother's "paste a smile on your face, grit your teeth and do it " training (that I have mixed feelings about). Also, there's a saying in 12 step programs that really played out sometimes over the last year- "fake it 'till you make it". The idea is that if you "act as if" something is possible- i.e. you really can stop drinking/torturing yourself with alcoholics (if that's your problem), you really *are* healthy, you really *are* happy, that will get you through until you really can do/be those things. It's a fine line between denial and positive thinking, but damn if it doesn't work a lot of the time.


I also think because I was an only child and because it was easier to take me than to not, I often had to go do things that I really didn't want to (boring adult events, etc). I would dread them and wail and gnash my teeth, but I soon discovered that it was never as bad as I thought it would be and, in fact, I could find something fun/good/enjoyable every time.


Also, when I was an adolescent and would freak out about an academic issue, my stepdad would sit me down and give me the "You Have a Choice" pep talk. He would see me veering dangerously close to panic, feeling backed into a corner with my intense self-generated pressure to be perfect and would remind me that I always have a choice, in any situation. I may not like the choices presented before me, but I have a choice.

For example, if I'm making myself crazy about an upcoming exam, I can choose to not study any more, take the test and fail. That may not be the best option, but it's there for me. Just knowing that I had another option, that I wasn't a prisoner, that I did have agency in some way, always helped me vent some of that pressure and make it through. I rarely chose to just give up, but knew it was there if I needed it.

I think I used a lot of that with Simon. Whether I realized it or not, I had to choose how I was going to handle what was happening. I could have chosen to think that the situation was hopeless, that my charmed life was over and this was the new story, that the only real response was despair.

But then my belief in what I call "the universe" would kick in. In my short 33 years, I've seen that I don't always get what I think I want, but I get what I need. It may not make sense at the time, but in the end, all the steps along the way happened for a reason and lead to a logical and good conclusion or at least make sense.

This is true of many things that seemed absolutely horrible at the time. When Simon got sick and each time he got worse, I really just surrendered and tried to wait to see what would happen. I really believed, and still do, that it would all make sense in the end. GOD FORBID he not make it, in the end there would have been some purpose. Even now, I think this experience brought a huge community together, inspired others, prepared me for something else later in life (what that is I don't know). That helps me let go and just be in the moment and pick up the little crumbs of goodness and tenderness that are being slipped to us under the gate.

Okay, enough pontification on this rainy Sunday morning. Just having a little "deep thoughts" moment and thought it had been a while...

Model material

It is a lovely rainy Saturday and Simon teething on some tupperware tops. The house is cozy with the smells of Jaime cooking and Roxie is tuckered out from a nice long beach romp with her friend Luna (Laura got to walk with her friend Wowlven and cutie patootie Elka Rose).

Simon is a marvel. He is marvelous. He is a weak hearted, marvelous, growing, drooling, baby boy.

Jaime really thinks we should get this boy into modelling. Your thoughts?

Shave and a haircut...two bits

Getting some Pilates instruction from MM

(gotta work off that whipped cream-)

Did you really think it was shaving cream in the above picture?!

Thanks MM. I'm feeling really fit now.

The Original Butz Keppelah (Head Bump in Yiddish)

More Bath Photos- Who can resist?

Yes that's a hospital bathing tub on his head. So what?

Big love to Team Shimmy out there

No words

Just enjoy a glimpse into a likely future

Courtesy of Fred

Thank you Fred.

Thank you.

Really, thank you.

The Curse of A Well Adjusted Child

Get ready for a completely irrational rant.

Simon doesn't think I'm special. He doesn't cry when I leave the room and/or go out for a few hours. He doesn't mind being passed to any number of people. He doesn't reach for me when he's upset (that doesn't mean I can't comfort him but...) and he can get shy when we're out and about but there's not much more than a head turn that happens.

It's sick but there's a part of me that wants that. As the primary caretaker shouldn't there be some sort of feeling of Mommy-short hair = home base and safety?

I know that might be there and Jaime and I are just not getting to see it since the little man might just be really well adjusted given all that he's been through.

Maybe we've done the job we wanted to do (not that we're done) with having Simon understand that there will be hard/painful times BUT that we wait for the next good time and when it comes we enjoy the heck out of it. And that there's almost always some kind of good time to be had almost immediately right after a hard time.

Maybe that's sunk in a little for Simon.

Big F***-ing deal!!!

It's sick but I want to feel that special burden of being the only one that can soothe or calm my son when he's upset. He's just 1 year old, is it so wrong that there's a part of me that resents that he seems to be able to do that for himself.

He did so well at his birthday party. He rocked the 4 hour Seder. He's been fabulous with so much family in town and all the dinners and brunches that we've been dragging him to. He's just been great. Happy as a clam.

Little f***er.

It's sick. I know it's sick, and that I'll be kicking my self in the head when all that changes and he can't let go of my pant leg when I really need to pee or get the phone or take the muffins out of the oven (like I'm the one ever baking muffins right?)
It's deranged, I know it is. Still, I want it. I want it bad. I want that clinging.

What is wrong with me?

Anyone have a tree monkey I could borrow for an hour or so?

Social Simon

Can't write much right now but wanted to share some recent photos of Simon gettin' around.

The Passover Seder was an incredible gathering and between that and his B-day party and family visiting, all three of us are plum tuckered out.

No BNP this month and his Echo looks pretty much the same. Here's to keepin' on.

Love to all.

Simon and his Big Boy Friend Morey sharing a laugh

Shimmy's first and probably last "pony" ride (Laura has bad luck with straddling things....)

Simon wearing Jaime's favorite shirt for him

On a play "date" with the lovely Elka Rose

Shimmy loves his PopPop

At the Seder, Simon thinks he spots Elijah

Where do we go from here?

That title refers to a lot but in particular two thoughts:


One

How do you come down from the amazing day we had Saturday with over a hundred (120?) celebrating the life and spirit of our amazing Shimmy La.
It was incredible to look out at the park and just see blanket after blanket, group after group, of people there to join in our celebration. People that I had never met before, or at most only once, there to share with us our gratitude and amazement at this little man who has taught/brought us so much.


It didn't even matter that I didn't get a cupcake or Vietnamese sandwich (you crazy, starved people you). It was all so wonder-full and so hard to come back from.

Simon is still trying out his new toys and outfits (many of which will be replacing older ones that we can pass on to the PICU at Children's Hospital- thank you).

I still can't believe it. The love was so intense, for Simon certainly, but also for Jaime and I. I said it at the party and I'll say it again. I really don't know how all three of us would have made it to this point in time if it weren't for all of you.

Unending gratitude.

Whatever will we do for his 2nd year party?!! ;-)

The other "where do we go from here?" is more of a 'back to the real world question for Mr Shimmy.

We had our full occupational therapy evaluation today to see how we can best proceed with getting our little Simon eating again.
I was so looking forward to this as it seems to be the last bastion of how Simon presents as sick.

How amazing would it be to have my son eat food with his mouth; experience the thrill of finding something so delicious that you can't get enough; or taste something so horrible that you know that you'll never ever put that in your mouth again (until you're in your mid twenties- that was beets for me). I cannot wait for Simon to begin clearly expressing likes and dislikes around food. I love food. I love what the mouth, tongue, and nose can do for you. It can take you so many different places and teach you so much about this ginormous world we live in. Eating something delicious in the presence of loved ones, or even sharing the worst meal ever, can bond you with family, friends, and lovers (potential and settled) in ways that I count as some of the best times in my life. I want to share that with my son.

Today was about getting our family one step closer to that.

Alas, not quite. I admit there was a small but very excited part of my brain that imagine that our OT person would come in, assess Simon and then give Jaime and I three or four concrete things to do and say "Simon will be eating in three weeks/months/whatever.

Nope.

She pretty much said that we were doing a great job and keep it up. He's a great candidate for learning to eat and there's not much (a few things) to do differently. She went on and on how great he looks and how we're really doing just about everything right for him.

I could feel the frustration begin to build and while I was happy to hear all of that (I'm always happy to hear how good he looks and well he's doing)...by the end of the visit and then on into the rest of my day, I felt the depression set down.

I'm tired. I'm tired of there being no outside answer, no medication, no procedure, no set of exercises...I'm tired of there being no cure or even quick fix.

I know I know. Don't say it. I'm just venting.

I love my time with Simon. I love our days. He is such a beautiful boy, living large and surviving in spite of his heart having gotten so sick. He is a miracle of the first degree. No doubt. I really wouldn't have it any other way.

Except for the way that I dream about sometimes where there's a miracle cure, clear steps and a finite timeline to getting him eating, and a coach/guide for me that would be there anytime I wanted for guidance, company, and to tell me "Laura, if you just did this, this would happen."

*sigh*

That would sure be nice.

Other than that it's a beautiful day. Simon's right at the end of a three hour nap (changed the timing of it on me again- little stinker), we're getting a new car seat today, and Jaime and I have a date tonight. It's all good. It really is. The car seat by the way is a gift from Jaime's former co-workers from the John Muir Women's Health Center. They all chipped in and got us (wholesale) one of the best on the market. Such a gift! Such a marker that our little man is no longer a baby 'little man' but becoming a toddler. Crazy.

I will end with a love letter to my wife (who is an exhibitionist and doesn't mind you reading long).

Jaime, you and I have been together almost 7 years. In the last year we've had more difficult moments, 'bumps', and yes let's say it, fights, than we've had in the previous 6. I think that's saying something to start with. Then there is the beauty in which we bounceback. I have no doubt where Simon is learning his 'bounceback' from, it's us.

Because being out of sync or having tension with you is so far from where I want to live, I think that we have this beautiful way of moving through those times. Definitely not letting the subject go, but clearly wanting to get back to loving, compassionate, humor-filled and passionate communication is a priority. There is no one that I can imagine doing this with and no one I can imagine doing this so well with.

You are my Bashert, my chosen one. I love you so completely but still in ways that I haven't discovered, as this last year has taught me. I miss you terribly on Monday mornings but love getting those calls from work where you share how you're kicking ass and loving your job. I love you. And I can't wait to see what kind of boy/man Simon grows into because he gets to live in that love every day.

Thank you Jaime. Thank you for making family with me. Thank you for making home with me. Thank you for growing Simon with me.
I heart you.

Laura

Best Birthday Party on the Block

Holy crap people. We counted over 115 people and we're pretty sure we're still missing a few. It was so beautiful! We had a song from our bard Cody, beautiful Hula dancing from Auntie Karen and friend, a crapload of cupcakes from various aunties, visits from some of Simon's lifesavers in the hospital (Dr. Williams, Dr. Rosenfeld, Nurse Megan and a group of other CHO rockstars!) as well as friends and loved ones from all our various circles.

We only caught a few pics, but know that there are some awesome ones coming in from others, so we'll post more when we have them. Here's a start:

Mmmmmmmmmmm cupcakes!

I swear I heard the table groan from all the food

Simon, looking quite adorable, with Mamaw

Simon, with his half sister Emily

HOLY PRESENTS!!!