Live Like You're Dying

Jaime here:

I had a good cry on my work today. No apparent reason. Just feeling a little melancholy, and really glad Simon is alive and just letting go of or saying hi to the fear that's still there. There's been a thread on our listserv about how a lot of us fall apart when things are calm and quiet and "good". It's a little unnerving sometimes but I also know it's good. The hard feelings are there whether or not I am aware of them, so I figure it's better for them to come to the surface than stay locked up in the "I'm fine, I'm okay, everything is under control" place I often live in.

One of my pet projects has been to put together a slideshow of pics of Simon from the last year with snippets from different songs (go Windows Moviemaker!). This is one that I definitely want to have in the piece. The lyrics pretty much sum up how I'm trying to live my life these days. It's what I see Simon doing and it's amazing to watch.

Live Like You're Dying
By Lenka

One of these days you'll be
under the covers you'll be
under the table and you'll realize
all of your days are numbered;
all of them one to one hundred.
All of them millions.
All of them trillions.
So what are you gonna do with them all?
You can not trade them in for more.
no no
Chorus 1:
Take every moment; you know that you own them.
It's all you can do, use what's been given to you.
Give me a reason
to fight the feeling
that there's nothing here for me.
Cause none of its easy,
I know it wasn't meant to be.
I know it's all up to me, I know it's all up to me,
So what am I gonna do with my time?
oh
Chorus 2:
Ill take every moment, I know that I own them.
It's all up to you to do whatever you choose.
Chorus 3:
Live like you're dying and never stop trying.
It's all you can do, use what's been given to you.
All of the moments you didn't notice;
gone in the blink of an eye.
All of the feelings you couldn't feel
no matter how you try.
oh oh
Chorus 1
Chorus 3 x2
oh oh

Simon has been really into a new game where I plug his ears with my fingers or cover them with my hands. He makes a funny little squeak and grabs my hands to pull them away and push them back in. It's very, very cute.

Here's a picture of Simon trying to tune into his home planet (those are blocks on his ears, for those of you who are wondering):

New Week

It's a new week.

We had a lovely weekend. Simon slept and napped like a champ (huge shocker there- read sarcasm here- see last post)

We went for lovely swim with Auntie Dre and while it wasn't the longest nap in the history of Shimmy- we both got a nice break this afternoon.

Simon is 15 months old! He hit that milestone month last Thursday and while I for sure wasn't in a place to appreciate it that day, today I am in awe that we have once again beat most odds and are still trucking along.

And, we're not just trucking. We are miracle-ing it along. Simon is one of those kids surviving cardiomyopathy in that miraculous manner where they don't show that they have this very serious life threatening disease. I've said it before that it's a blessing and a curse so I won't go into that again. What I will say however is that it's a huge, in your face, "you must live this lesson or I'll punch you in the face with it"- teaching that I am working hard at really learning.
What lesson you say? My Rebbes from Hebrew School are laughing their asses off right now because it comes from the bible. Deuteronomy chapter 28 verse 47. Live with joy in your heart and see the abundance in all things (or else all these terrible things will come to pass that we've just mentioned and are about to expand on).


Gettin' Biblical :
I'm working with my cousin on her Bat Mitzvah and her portion of the Torah is a doozie. It's a completely overbearing and dry like the Kalahari chapter with the give thanks to god stuff and "here's all the dastardly things that will happen to you if you don't" kind of chapter.

Both Sophie and I were having quite the time getting our biblical teeth into it (her's just getting cut and mine about to fall out for lack of use) when a bright light spotted on one particular verse nestled deep in the swamp muck of "here's how you will suffer" and if you blink, you miss it. (Thank you Rebbe Jhos 'bright light' Singer.)

There we were walking down the street talking about how easy/hard it really is to live with joy in your heart (coming to the conclusion that it is in fact really frikkin hard) when it hit me. Simon demands that of me each moment of each day. I know I am not aware of it all the time but I gotta, it's sure is more 'up' for me given the fact that I spend most of my time thinking and feeling, and interacting with a 15 month old wonderkin that:
a) Might not make it to his next birthday
b) Could end up living with severe impairment and disability
c) Might need to live his life in a wheelchair with O2 administered
d) Could require a heart transplant later in life
and/or
e) Drop dead of sudden cardiac arrest at any minute

{ All of these, and more, are possibilities for people living with Cardiomyopathy}

While these are less likely given his current state, they are by no means off the table yet with Mr. Shimmy and in fact are still close to his place setting at the table given he has yet to start walking and asking his heart to exert that kind of energy on a regular basis.

And what I have no control over (among the mondo laundry list of things) is savoring each smile, each new giggle, each sweet baby breath in my face, new sound, new frustration at not quite being able to master something yet, each grasp, each falling asleep heavy baby in my arms moment.

99% of my day I cannot help myself and I am overcome with Joy filling my heart and spilling over that I get this. I get to have this. Because almost a year ago, and for several months after, it was continually threatening to go away.

Yes, there's that one percent of the time when I am your typical new parent about to lose their shit when their kid skips napping two days in a row or maybe in a year or so when the tantrum in the supermarket threatens to topple the grapefruit display.

But really, I am not your typical parent. There are those of us out there, walking mostly invisibly among you, that are not typical parents.

We are the students of incredible teachers that demand of us to live out Chapter 28 verse 47 in heartbreaking (pun intended) ways.

It's the hardest thing I've ever done.

Thank you Simon Lev Fitch-Jenett
Thank you.

Just for me

Day two


It's like he saves it just for me. I don't understand it and it makes me just want to cry. We have another morning just like a typical morning. Not as bad as yesterday but still with puking and a change of clothes for both of us. We go to visit Jaime for lunch and he's a dream. Standing and smiling and playing shy but really flirting with folks. Then when we get into the car he falls asleep for the last five minutes of the drive.

And that's his nap.

No more sleeping.

That's it.

No Nap.

I'm really about to lose my shit. It's just the two of us though and nobody else gets to witness the "love". Add to that that there's still no obvious preference for his primary caretaker and I'm wondering if he's trying out new forms of torture for some covert gov't operation that we don't know about.

I know he's cutting three molars and hitting that huge development marker (they say 15months is often called the 'milestone' month). He's wanting so badly to have started walking yesterday. And, in general still the happiest jabbering-est baby on the block.

AND

It still feels like all the crap is just reserved for me.

He lights up when Jaime gets home.
He's done with all his feeding so there's very little chance to puke on her.
It seems to be his most active time of day with the most incredible babbling happening between 6pm and 7pm.
Weekends are also his time to be 'on' it seems with less puking, and great napping (no doubt from all the stimulation and activity that easier with two parents versus one).

Maybe he just loves Jaime more. Wishes she were the stay at home Mom

I know. You don't have to say all those rational things to me.
I'm not in a rational place right now.

I need a good weekend. I need a reset.

Stick a fork in me

Three poops
Six vomit sessions- Two projectile
Three outfit changes
One OT session
One shower
Six hard boiled eggs ruined
and no nap yet.
It's not even 2:00

I'm cooked.

It's been a time

I was born in 1973.

The phone we had in the 500 Kappock Street apartment throughout my childhood in the Bronx had a rotary dial. My mother did work for IBM though and by the time I was in High School we had a computer and were even among the first folk that got to experiment with this new thing called the internet...I can't even remember the name of the program but it doesn't exist now.

In college it was so exciting that there was this thing called electronic mail where you could send a message to another student at the school. You had to go to one specific computer lab but it was still way cool.

So when our internet went out last week you would think that having lived half my life without it, I should be fine.

I was just barely ok.

When our land-line went out too, our cell phones were running out of minutes, Roxie scratched her eye and was requiring more medical care than Simon, and Simon was having a couple of days with either a really short nap and/or it was non-existent, I almost lost my mind.

Really. I haven't been that close to the edge in a while. To have all that happening AND not be able to be in touch with folks the way that I am used to being in touch, sucked. I felt so isolated and for someone that's working hard at not being isolated anyway given everything else that we've been dealing with, well, let's just say that there was a straw and a camel and need for a chiropractor.

Then there was the getting ready and actual travel down to L.A. to see family for the 4th of July weekend. There was all the typical getting packed and stuff but add in all the calls to our Dr's here to get referrals for Dr's there, making actual contact with Dr's down there, the special medication needs (3 out of six are refrigerated AND we had just enough to get us through Monday and therefore needed to make a special refill trip to the CHO pharmacy), dropping the dog off at the Pet Hospital (way too reminiscent of Roxie's time at Animal Control - Jaime and I were both sobbing as we left her shivering in a cage) and then Jaime told you about the drive...once again I nearly lost my sh*t.

Every 20 minutes.

Every 20 minutes my entire body would go tense.

Every 20 minutes I would twist around from the front seat to wipe vomit and check for choking.

Every 20 minutes Simon would heave and hork and spit up and/or Vomit.

Every 20 minutes.

That sucked.

AND....then we got down there and he slept and partied like a champ. We swam, we played, we had family meals. We managed the heat ok. I got to hang with my sister who I love love love. Maya (my niece) and Simon were a delight to watch together and the little man blessed us with 11-12 hour nights of sleep. He clearly appreciates the seedy Motel. Even the drive home was relatively uneventful with just one wake up when we stopped for gas. Otherwise, sleeping like a baby.

I love being with my sister and Maya and Frank.

But Holy Cow, I love being home. And, it only took two days of wrangling with AT&T to get back online and have a phone again. And, those two days are over so it's all good.

Roxie may need to go to a Doggie Opthamologist for surgery and/or a doggie contact lens but that's a bridge that's a little ways away. Now that other things are back in order I can almost laugh at that. Then three out of the four of us will have required major medical intervention in the recent past. Ridiculous.

We had a rough blood draw on Monday to check Simon's clotting factor. Two weeks ago his INR was a little low (blood too thick) and they upped his dose of Coumadin (that's the medication that he takes that's also found in rat poison- gotta love it).

They wanted to check it in two weeks and now have found that it's too high (blood too thin). So we have another dosing regiment of switching doses every night to see if it will balance out. I'm ok with managing that new level of detail but what I hate is the having to go back for another blood draw in two weeks. Simon is a hard 'stick' and this last time it took almost 30 minutes of poking and restraining and blood curdling screaming for them to get a draw. Jaime did it this time and I don't know what was worse, having to hear the screams from the waiting room (I eventually left and walked down the hall- no good, he's got quite the set of lungs- Opera singer for sure like his PopPop) or being in there with him.

I'll tell you in another 2 weeks when we go back, dang it. I hate blood draws. I was so excited to have them spread out to once every four months. I hope that the next one says that we've struck a balance and can get back to that schedule.

Otherwise, so much to look forward to in the coming weeks. County Fairs, MM and PopPop coming for a visit, the Fitch-Dipanes coming up from L.A., walks around the lake, swimming time at the Y, Aunties everywhere, getting back to a groove, etc etc. I feel it already with a lovely morning meet up with our friends Wowlven and Elka Rose before swim time. An easy going down for a nap and some mellow time for Mommy- Yay!

I missed blogging. I'm glad to be back to it and sharing and not feeling so isolated. Plus there are fabulous pictures to be shared from Pride weekend and our LA trip.

Enjoy and thanks for coming along this nutty nutty ride.

Laura

Simon takes his Pride seriously.

Check out the thoughtful

"I'm working so hard at this flag waving I have to stick my tongue out"

Some one loves their Gay Mama-

A very rare mouth kiss from Shimmy

Simon and his 1st cousin Maya sharing the slinky. Such a wonderful toy...

"Dude, southern California is awesome.

You go and swim in the warm pool and then come back to central air in the apartment. Plus, I look Abercromie&Fitch-good in a scarf."

"My Mommy dunks me sometimes and I'm ok with that."

Travellin' Man

Jaime here (DSL is still down at home, so I thought I’d throw y’all a bone with a little update).

Well, Simon just survived his 2nd trip to L.A. since he was born (the first was when he was 2 months old). We drove down Thursday night and drove back up Sunday night. Holy hellaroni was it a crappy drive down! We didn't hit the road until 8 p.m. and didn't get into our hotel until almost 2 a.m. Simon was puking every 20 minutes for the last 2 hours which was really awful for everyone.

We had a decent night’s sleep in our hotel and then walked over to Jen and Frank’s house (Laura’s sister and brother in law) to hang out with them and our 3 1/2 yr old niece Maya. We had a great weekend overall- swimming, eating, walking through the really fancy malls that are near them and some good sleep, actually. Simon was a little trooper- he’s really the easiest baby (minus the heart failure). He was pretty much content wherever we went, except when he got hot. His poor heart function makes the heat really unpleasant for him. We got a spritz bottle with a fan that he liked a lot but we managed to break it day 2. We may consider getting him something called a cooling vest that a lot of folks on our listserv have. It doesn’t get that hot that often up here though, so maybe next summer.

We also had a revelation on Saturday. Simon had been off his game for a week or so which had us really worried- busting a sweat a few times, not napping, puking more, just generally being off. Well, it turns out that the little man was busting THREE molars through at the same time. That would make me throw up too!

He’s really, really close to walking and generally is Mr. Independent. He hardly wants to be held these days- he wants to be on the ground, exploring, crawling, opening, tearing, standing, etc. It’s really cool to see and also sad because I just want to squeeze and snuggle and generally eat him up and he’s not having it.

It’s coming up on the anniversary of Simon’s admission to the hospital (August 1st). It’s hard to believe it’s already been a year and that it’s only been a year. We’re planning a little quiet time to reflect that day, I think.

We’ll post pics of the little guy once we get DSL back up (hopefully Sat at the latest). He’s due for a haircut, I’m sad to say. I guess we could go with the celebrity trend of letting him grow his hair into a long and flowing mane, but really, who wants to wash barf out of his hair all the time? Not me and I know not Laura, so a little trim may be in order.

Hugs all around

Photos and more

I know it's been a while but we've been really busy.

Some of us have been cutting a new molar (among other teeth!), scaring mommies with some fevers, working out how to manage the heat, going to Gay Pride Weekend activities, swimming, making new sounds, pulling up to standing (unsupported twice!), and generally just working it out.

And that's just Jaime ;-)

Really though, Simon has had an incredible time as of late and has been working hard at being one of the most joyful babies. He's funny too!

Look.

Simon, looking very guilty after sucking the bubble wand dry

I couldn't quite capture the bubble beard in time.

Check out that hair (all natural, no product)

Simon meet Salsa

And she's back

It's been a lovely Saturday here complete with sweet family time on a blanket at the farmers market and Simon has just gone down for his afternoon nap.

Jaime was shopping at Trader Joe's and Simon was just at the beginning of his feed. He and I were nestled comfortably in the rocker and it seemed like he was just about to close his eyes. He was playing with my fingers, touching the pads of his to the pads of mine. Playing gently with the pressure of digging a nail in versus just finger pad to finger pad. So frikkin' sweet.

I leaned over to smell his head, which I often do, appreciating that smell, and there it was.
A visceral memory of another time. Another time when I was smelling Simon's head where I remember thinking this might be the last time that I get to do that.

That first night in the hospital when Jaime and I would take turns holding him as we waited to see/understand what was going on. Holding him in our arms while hour after hour, his little heart and body became more and more exhausted. Holding him in my arms smelling his head while they wheeled us from admitting to the ICU. Breathing him in.

There I was in our bedroom with him after a lovely happy morning, nothing that different, smelling that same sweet Simon head smell.

And there she was. She was back. Standing right across the room from me. Death was back.

Not in a scary way. She was just there. Of course she'd been around all morning...I remembered that I had woken up from dreams that were all about death. Not scary ones but just crazy dreams that included Jack Black and a friend from the not so long ago but distant past that had died, showing up and dying again but in this very matter of fact- you just gotta be with me while it happens- kind of way.

So there she was. Looking a lot like Georgia O'Keefe but with long flowing grey hair and a kind of dusty rose summer dress on. She was barefoot and looking so sweetly at us that I couldn't help but feel kind of comforted.
I know it's weird but Jaime, Simon and I have a very special relationship with her and I think it's fitting that she come around every once in a while.

I am so aware of being in that cycle with Simon. And I believe it is a cycle. From just before that moment that you come into being (and you sweet reader, you get to decide when that moment is) until just after that moment of your last breath. I don't know really if you go back to that same place but it feels like a cycle to me. From before you were 'being' to after you're done 'being', at least this being that you are right now.

None of us know where we are on the ride, only that at some point it's going to come to an end. With cardiomyopathy and with Simon it just feels like we are called to think about it a little more than I normally would.

Sure, it's fun to pontificate on death occasionally. Over a dinner with close friends on a random night when the conversation runs it's crazy course. We've all had too much of some inebriating substance and gone down those crazy conversation roads right?

Being Simon's Mommy, travelling his road with him, having a close and regular relationship with death, it's just different.

So, she's back.
Well, actually she's gone right now. Just a short visit today. Fine by me.

Jaime's making strawberry ice cream. Had she stayed we might have offered her some... but in a to-go cup if you know what I mean.

Frodo Fitch-Jenett

Straight from the Shire...

One ring...err baby, to rule us all.


Oh yeah I almost forgot. His BNP was 494. Still going down. Right on Little Man, right on.

Stepping up in the world

well, he's not really stepping yet but we are moving up.

We just had our monthly cardiology visit and as I suspected/feared/hoped for, Rosenfeld said that he's fine to see Simon every two months now.

Makes me a little nuts just thinking about it but I know we can call anytime and CHO is just 5 minutes away and all that. Still...

As for the visit itself, Simon is doing just fine. His Echo doesn't look that much different but the "that much" is actually his heart doing a little better.

During the last two visits HunkyPants had said that there was some concern with the left ventricle looking just a tad bigger and the shortening fraction had dropped just a hair. This visit showed that the left ventricle had gone down some and his SF was back to where it had been three visits ago and even a little stronger (from %18 to in the 18-20 range). Everything else looks good, but Simon looks "great, with great energy!"


We even got the go ahead to try out some homeopathy, Rosenfeld is going to look at some herbal recommendations and even try and get us a 2nd opinion phone consultation with the leading cardiomyopathy specialist in the world today (Dr Towbin). All in all I would say that it was a really good visit.

Yes, we had to do a blood draw (BNP on Friday if all goes according to plan) and it sucked but I have to say this little man has incredible bounceback. Simon has showing us over and over again that he has an uncanny ability to be present in the moment. He lets me (and the world) know when something really sucks for him and then when it's over, for the most part, so are his feelings about it. It will be interesting to include talking into that equation once the little man gets more verbal. I love the 'Fshhhh' sound we get in the waiting room as we stand by large fish tank.

I also love having a pediatric cardiologist that will 'ok' homeopathy where other doctors will poo poo it right off the bat. Rosenfeld also said that he would look into the four herbal remedies that were recommended to us to see if we can do more for the little man as he's so stable right now.

It's exciting to think about complementing his traditional medications that have a strong handle on keeping his symptoms in check with something that might even get to the underlying issue.

So, Simon's meds keep his blood pressure and heart rate in check but something homeopathic or herbal might touch on actually strengthening the heart muscle. What's nice is that we don't seem to have to actually give the former up to begin working with the latter.

I actually feel really hopeful about it. We have an appointment with a pediatric homeopath (a former MD no less) in late July. We had a great phone consultation today and I'm excited to work with him and have Rosenfeld talk with him as well.

Can I just say once again that I am so grateful to have a team (Rosenfeld, Gleghorn, Winokur) that are willing to try or at least support different modalities than the ones they were trained in. Thank you team.

Other than that we are chugging right along with the little man clearly understanding more and more, standing on his own for a few seconds here and there, two more new teeth (8 now total!), and crazy wonderful games and facial expressions throughout the day.
Enjoy...

"Ech..look at me...I'm an old man...no I'm a baby....Nu? Laugh already....this is some of my best work"

"Hey, whose that good lookin' baby over there?"

"A little privacy please...?"

You saw this one coming didn't you?

"What? What could you say to me that I haven't already heard?"

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.