What Life is This?

I was getting out of the car after having dropped Simon off for his afternoon program and I realized, halfway out of the driver seat, that I hadn't grabbed his backpack. I turned around to get it and had one of those moments.
It was less than a second pause on my part or maybe it was the way the 3:47pm light was hitting the passenger side of the car but there it was. A small black backpack, certainly not my size, with blended food stains on it, what looks like an IV bag with purple green liquid remnants, a tube long enough to reach the back seat, and a pump machine that looks more like a 1980's portable video game than the small but lifesaving machine that puts food directly into my son's stomach via a surgically placed port that makes him slightly robotic. Also in that bag there are diapers and wipes for a 4.5 year old. There are extra syringes, hand sanitizer wipes, an extra mic-key button for emergencies and more medical history information for said 4.5 year old than I have for myself in 39 years.
I saw that bag and those tubes and thought "what life is this?"
I don't think it very often anymore. That's probably why I haven't written in so long but I thought it just now.

Simon and I have been in some sort of 'normal' groove. We've had almost 4 months of the same schedule, the same appointments, and the same status quo. It's been good.
Since September he's gone to school in the morning, come home for lunch, and then gone to Temple Sinai's aftercare program in the afternoon. I've gone to yoga, come home and prepared lunch, shared a therapeutic meal with him, gotten him to Temple Sinai and then taken care of household business in the afternoon. We've had weekly appointments on Tuesdays (Hippotherapy) and Wednesdays (feeding therapy in SF). We've had  one GI appointment and one cardiology appointment and the very rare and random sick day but really it's been a good solid run of same same.  It's been good.

So why did that question pop into my head. What life is this? It's felt normal for quite a while but right there in that instance it felt so odd to see a feeding bag and pump on the passenger seat of my car. Who carries that around? What mature (and I use that word sparingly) woman (besides my very hip mother) carries around a mini backpack let alone one that carries all that crap that's not even for myself.

I think about other mothers of pre-school age kids and I realize I have no sense of what their lives are like. I think about it like the time before I was a parent and thought I had a sense of what it was like to care for someone. You can't really know unless you sign on for the lifelong position. I don't really understand what parenting without tube feeding, medication administration, gross motor, fine motor, speech delays is about?
What do you do all day? I know my sister parents and she does it brutifully with grace and bumps. I know that the parents that I worked with when I was a camp person or school social worker really seemed like they were wholeheartedly invested in parenting (mostly- there were a few ragamuffins that needed some pants kicking) but really....what do you do with your time?
It's not a real question but mostly just feeling a little green today that I can't even comprehend it. I really have the utmost respect for any single or multiple of persons that invite a little being into their lives with the intention of growing them.
...and  I'm feeling more than just a little separate from those of you that get to do it without long hospital stays, feeding tubes, critical illnesses, and/or the parenting plus experience however it may show up for my sisters and brothers that are nodding their heads up and down right now.

It's this life.

On a different but certainly connected note. This life of mine is just days away from changing dramatically. On Monday I will start a part time Chaplaincy program. I will work 21 hours a week outside my home in a capacity that has nothing to do with Simon and/or me caring for him. I will be a chaplaincy student. I will be ministering to patients. The hospital setting is now like another home for me but this will be all about other people and not me or my son. I get to offer myself up for comfort, for connection, and not just to the little being that I love to do that for but need some space from. I'm so frikkin' excited
I'm so excited and scared. It's mostly like 90%- 10% but that 10% is starting to feel more real.

What if it can't work out right now logistically? What if it's so much build up and excitement for nothing. I feel this calling to it and really want to get started and it seems like it might happen. What if it can't right now?
What if it feels like a 'calling' but I get to orientation on Monday and the reality of the job does not match the call?
What if I'm older/younger/smarter/dumber/funnier looking than my other cohort members?
Where can I get a copy of the old/new testament/Qur'an/most perfect thing ever to read to a patient?

It's going to happen. Monday is coming. It's only been 4 years and 10 months since I've been home being a mom to Simon. That's a long time to be doing the same thing.
Ok, one month of that he was still in utero and I spent most of my time taking the dog for long walks but still.
A change is gonna come. It might just be momentous.
I'll let you know.

Big love

LF

Simon in his new Berber coat from Algeria (Thank you Djaffar!!)

 Simon in the latest boxing attire

I do it myself!

Ok Moses, you can help while I eat a Turkey Wing

Checking out the Holiday Lights in SF

 With my G'Paw and GG

It's not real, I'm just practicing

Checking out the world wide webs with Mamaw

A little curious George with Chris

What is he thinking?

A little Mama love

At Fentons Ice Cream Shop

Getting ready for our last riding lesson of the year

Simon and Maya (his look is totally- "can we have some privacy please?"

 Tossing rings is so much better than tossing his cookies right?

New Years day outing to Dolores Park

I might be in SF but I'm gonna find the only Oakland A's fan and jam with him

Superman pajamas- T-Rex stance

Yes, I'm superman, what else is nu?

New Pajamas, new hand drum, new year!

2013- Bring it!

Bah Humbug

Disclaimer: I am writing this on 4 hours of sleep.

It's Christmas Day.  *sigh*  It was the hardest one I've ever had.  Nothing catastropic, nothing awful, nothing even really HAPPENED.  Just a lot of things came into focus all at once.

I guess I'll start with Sunday (3 days ago).  Laura was bed-ridden with a nasty cold and it was raining, so after a morning of entertaining Simon inside, I decided to take him to Ikea to let him run around.

*gross content warning*

About 10 minutes into our visit, I notice that he has "poop face".  We're doing a sort of half-assed (pun intended) potty training regiment so I pick him up and practically run him to the bathroom to try to poop on the potty.  He's pretty pissed about it, but gets down to business after I pulled out my phone to distract him with photos.  He finished, and I've just taken him off the potty to wipe him, when he starts to barf.  And barf.  And barf.  All over himself, all over me, all over the floor, all over the toilet.  It's epic.  I then realize I did not bring the diaper bag, so no clean diaper (this one is barfed on), no wet wipes, nothing.

I'm trying to get him to barf in the toilet (painfully aware we are NOT alone in the bathroom) and realize that I'm asking him to bend over his own poop and that the smell of that is actually what started him barfing in the first place. Awesome.  My kid's own poop makes him barf.  I have known this and we have had minor versions of this incident at home, but this...this is what I like to call a shit show.  Oh, I forgot, speaking of shit-shows, when I get him off the potty, he still has poop attached and a nice big turd hits the ground, close to the stall next to us.  I was busy trying to frantically clean that up when the barfing started.

I stand up to get us out of the stall to look for paper towels when I realize the tile floor is now the equivalent of sheet ice.  Praying we don't have a Three Stooges-style wipe out, I get Simon to the sinks and desperately start looking for paper towels.

None.  Not one. Not a single goddamn paper towel in the entire bathroom.  Just endless rows of energy efficient air dryers. Freaking eco-Swedes. 

I clean him up to the best of my ability, splash water on my face to rinse off the barf that has splattered onto my cheeks and herd him out the door to go look for an employee to notify about the carnage we have just left.  Just outside the door is the woman we saw by the sinks (whom I assume witnessed our whole show via various senses). She is now giving us incredible stink eye. I was tempted to run up and give her a huge bear hug just to get her in on the party but I ignore her and found a staffer who was incredibly gracious about the whole thing.

We go over to the kids section and play there for close to an hour.  I finally get him interested in moving on (I'm getting a little bored) and we move about 4 sections down the winding yellow brick road.  We stop in a section that joins with 4 other sections (including some doorways).I look at something for a few seconds and look up to realize Simon is gone.  Like...gone.  I scan for his little dark head of hair, but don't see it.  I go back the way we came, looking for him but I don't see him. I  realize that this is like being lost in the woods and that I shouldn't wander around or I'll miss him. 

One person wandering through a giant maze is not the most effective way to find a lost child so I walk up to a group of 4 employees hanging out.  One of them smiles at me and says, "Hi there, can I help you find something".  I reply very calmly, "well, so, um, I think I sort of lost my 4 1/2 year old son".  You would have thought I just told him I saw a bomb.

He snapped to attention and immediately called his manager.  He asked me for a description and then asked me two more times because he was so anxious.  While he was talking to his boss, I look out to see his 3 coworkers plus 4 others spreading out on the mission.  He assured me that they block all the exits immediately and just then they called a "code 99" (ie, lost child)  over the loudspeaker.  Within another minute, the manager walked up to me and before we could even really say much, he got the message via his headset that they had a match.  We walked back to the area where we had first been and Simon was playing on the floor with a half circle of charmed female employee entertaining him.  There were another 3-4 employees sort of standing guard around them.  It was an incredible protocol and a totally uneventful experience for him.

For me, it was a really, really painful wake up call.

This was the first time I had ever lost Simon in a public place. (As an aside, I think going four and a half years without losing your kid should get you a medal or something)  What I hadn't really ever thought about before Sunday was that Simon's pragmatic language delay is kind of dangerous.

He can't ask for help or give useful information.  Especially  under pressure.  I'm not sure he would have even been able to tell them his name.  He is pretty reliable with this question, but he might throw out one of the names of his classmates- Eduardo perhaps, or Delilah.  It's like a Vegas Slot Machine every time you ask him anything- you could win big or you could get garbage.  No telling.

I also realized that he had no idea or cares about being separated from me, so he wouldn't be looking for me and it would never occur to him, nor would he have the skills to ask for help.  In some ways it's like he's an 18 month old running around in a 4 1/2 year old body.  There are times when that is super charming and cute, but on Sunday, it terrified me.

I was up until 2 am last night spinning about all this, as we slept over at my Mom's house on Christmas Eve.  When is he going to catch up?  Is he EVER going to catch up?  Will I have an 18 month old in a 14 year old body?  Will he ever go to college?  Can he ever be independent?  We have to get him a medic alert bracelet.  We have to start to talk to him about being separated and asking for help.  How old will he be before he can remember our phone number and give it out appropriately and on command? 

Then, just when I was starting to panic about not falling asleep, Simon woke up. When I leaned down, he clung to me like a tree monkey and demanded that I "LIE DOWN!".  I obliged, cramming myself on his slowly deflating twin air mattress.  Then he demanded I play "Sh'ma Israel", his current jam on the iPod.  So I spent the next hour and a half of Christmas eve trying not to roll off a janky air mattress and listening to the same Hebrew song over and over and OVER again. Needless to say, by the time we all woke up 4 hours later, I was ready to kick Santa Claus in the nuts.

We had put out treats for Santa and his entourage so when my Mom came down, she led Simon over to go check and see if the treats had gotten eaten (they had).  Then we tried to start opening presents.  Again, a little like a knife to the heart.  Simon was not having it. The kid had zero interest in opening boxes full of toys.  Whaaa?

Almost every other typical kid his age would have been begging to open presents since 5 a.m.  They would have been able to identify things they liked and ask for them in the weeks and months leading up to Christmas. Not Simon.  Every time an aquaintance or co-worker has asked me what Simon asked Santa to bring him, I had to explain that "he's still a little to young to get it".

My coworker with a kid a little younger than Simon gave me a blank stare when I gave her that answer.  She was right to be confused.  He's not too young.  He has some serious freaking delays and his wires are sort of crossed and he doesn't "get" stuff like other kids "get" stuff.  He can recite the name of someone he met once 3 months ago or sing in the ancient Aztec language he picked up from a youtube video or spell "b-l-a-c-k" but there is so much stuff that does not appear to compute.

I really can't tell what happens to information that goes into his brain.  I can tell it's all there.  It's just like things aren't filed in the right places or he hasn't learned the code yet to retrieve them or read the cues for when to retrieve them.  He wanted to put out carrots for Santa's reindeer tonight.  He doesn't get that it only  happens on Christmas eve, even though we've explained it about 20 times.  He's got the file "carrot for the reindeer" but can't pull it out at the right time or place it where it needs to go.  It's simultaneously fascinating and maddening.

Laura was sick and I was exhausted and it was raining, so my blessed mother entertained Simon most of the day while we lay around like lumps. It seriously takes a village, people.

On this Christmas Day, I'm sad to report that instead of a warm and cozy glow, I'm left with an anxious, exhausted, slightly dread-filled heart about what is to come. 

Merry Freaking Christmas.

(Please review disclaimer at the top of this email. I'm pretty sure life is really not as bad as I made it out to be. )

Can't find the camera, so here's what we have since the last post:

Looking dapper for a holiday party!

Laura snuggling with our old lady.

And this is a video of Simon and Laura doing the "Robot" to that dig dag doggone song.

No News Is Good News

Things have been busy but relatively quiet over at the Fitch-Jenett household. We like this.  No medical drama, no children in our social circles dying, routine sniffles coming and going.  It's a pretty sweet life these days.

Simon is changing every day-even the staff at his preschool comments on it!  As is pretty typical, there seems to be a direct correlation between him doing new things and how mad/frustrated/maddening he is.  Laura and I are practicing daily "step away from the child" and doing LOTS of time outs.  It's all so very...typical in the best and the worst ways. And we're kinda ready for the hitting/throwing things phase to be over.  Like, actually, really ready.

I'm not sure I can safely say we're making progress in potty training but we've had a few spotty successes with going diaper free for a few hours.  We suspect that he will do potty training like he's doing everything else so far- on his timeline and in his own way.  We both keep imagining that one day he will just decide he wants to be done with diapers and that will be it.  Hopefully that will be before he's 8.

He got his school photos from Temple Sinai and...well...they're gorgeous.

We're gearing up for all the holidays and hoping our heads don't explode from the ever growing list of social commitments with all our loved ones.

And, saving the biggest news for last, last week Laura was accepted at a Clinical Pastoral Education program at Alta Bates Summit Medical Center!  Starting January 15th, she will spend 20 hours a week learning how to become a chaplain. She's a little terrified and we're not sure how this will all work out logistically, but honestly I can't think of a more right path for my magnificent wife.  She will get to merge her Jewish education (8+ years of Yeshiva) with her Social Work skills plus all the things she has learned on her own via motorcycle accidents and horse-throwing and kid-almost-dying to usher people through the hardest times of their lives. 

Every time Laura freaks out about this career change and starting something outside the home, something  that is NOT about Simon and his care, I just keep saying, "Let's try it.  Let's just try it".  It's a little like when we first became romantically involved. As we moved, a little uncertainly, from being friends to being more, we kept saying, "let's just keep doing this for as long as it works and if it doesn't work anymore, we'll just go back to what we were doing before".  That worked out pretty well, so I think we'll approach this the same way.

She can always postpone it if it's too crazy, but we both think it's worth at least trying. If this goes well, next year she could apply for the more involved program which would be 40 hours a week and include a salary!  She could be a chaplain in a few years if this all goes as planned. 

 I do so love the idea of being the Rebbi's wife :-)

Another Photo update

Because we've been too busy to write...

 Some sword play

Some questioning

Simon meet Jack O Lantern

First look at his Sam-I-Am costume

I think the hat needs a little more stuffing

Haaaay, do you want some Green Eggs and Ham?

Does this costume make my butt look big

Trick or Treat!

 I make this look goooood

I know it's Simon's blog but c'mon, we look good too

Heading to Little Farm with G'Paw

That's quite a tongue you have!

Checking out goats with Mama

Is G'paw trying to steal some of my brain cells or transferring some to me?

Love me some Mama

Love me some Auntie Dre too!

Uncle Mike is teaching me about the speed bag

 and the heavy bag

 Me and my half sister Emily

Swingin' with Auntie V and my big 1/2 Bro Daniel

 He's a good guy

So's this guy but he's not as talkative

Can someone teach me how to use this thing?

Dude, we're golfing!

A family is a family is a bunch of mini golfers

...and last but not least, a quick view into the progress we are making when it comes to mini star pasta and apple juice!! 

 That's right, I do it myself!

 Check out the size of the bite!

 I prefer a dry Chablis but this will do.

Love!