Tuesday, December 25, 2012

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.

Tuesday, December 4, 2012

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 :-)

Wednesday, November 14, 2012

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.


Monday, November 5, 2012

The Full Story

I have recently become a permanent employee after almost four years of being at my job as a contracted employee.  This is a HUGE deal.  My health insurance will now cost one third of what it was, I get an extra week of vacation and three extra personal holidays.  I will also be represented by a union, a benefit that would have been invaluable four years ago.

Many of you read our extensive posts about Simon's ups and downs when he was in hospital and how we managed day-to-day as a family.  What I could not blog about then was the unimaginable nightmare that was unfolding behind the scenes at my job.  I feel like I can now publicly tell the full story of what was really happening.

I had been at my job at a hospital-based women’s health center for about a year and a half when Laura got pregnant.  I couldn’t imagine a better place to become a new mother. Our center focused primarily on programs, resources and classes to support pregnant women and new parents.  I was going to practice what we preached about life/work balance and creating supportive, healthy environments for new parents and their babies.

Like any mother, I wanted to bond with the new baby and support Laura for 4-6 weeks after he was born so I planned to take my legally-protected Family Medical Leave Act leave. When Laura hit the middle of her second trimester, I told my boss that I hoped to take time off. I explained that I wanted to take all 6 weeks that were available to me and hoped to take it in one block when the baby was born.

An odd, displeased look crossed over her face for a split second. Then she gathered herself and said it wouldn’t be a problem.  When I came home that night, I mentioned her slightly “off” response to Laura but neither of us thought much of it.  I had stellar marks on all my formal performance reviews, the leave was legally guaranteed and I worked at a WOMEN’S HEALTH CENTER.  What could possibly be the problem?

Soon after that conversation, my relationship with my boss began to sour.  Time and time again I finished a project, only to find her upset that it wasn’t the way she wanted it. She changed her mind constantly (sometimes without informing staff), would only discuss things verbally  and refused to clarify directions via email.  When I explained that I was having trouble keeping up with the rapidly changing directions, she replied, “What I want may change from the time you leave my desk to the time you get to your desk. That’s just the way things work around here.  Use your best judgment.”   I furiously scribbled her instructions in meetings and even considered surreptitiously recording our meetings to double check. Confused and frustrated, I just kept trying to do my best.

The week after Simon’s due date came and went, my boss she sent me a rare email.  It itemized concerns she had about minor tasks that were still pending. I was surprised to get an email, but was grateful for something concrete.  Looking back at the email, I realize I should have been more concerned than grateful.   An outside reader would have no perspective on the importance of the tasks being discussed so it looked like I was doing a horrible job.

A few days after getting that email, Simon was born. I took my leave and 6 weeks later, came back to work.  There were no major crises, everyone seemed happy to have me back and I slowly picked up the pieces that had been delegated out.  Things weren’t great with my boss, but everyone else seemed to be struggling with her too.  I had been back to work for approximately two and a half months when Simon got sick.

I took two weeks off while we assessed how serious his condition was. At the end of the two weeks, Simon had stabilized but it was clear that we were going to be in the hospital for a very long time.  Despite every cell in my body screaming that I belonged in the hospital with my family, it was time to go back to work. 
I negotiated a few weeks of coming back part-time until we had a sense of what was going to happen with Simon.  During that time, I repeatedly tried to get clarification about priorities for my work projects so that I could maximize the hours I was there. I was told that they were all priorities, nothing would be taken off my plate and that they all needed to get done.

As the end of my agreed upon part-time period approached, my boss and I met again.  I proposed a few options that might help me be present for my family and still produce at work.   They were rejected immediately- I would not be allowed to continue to work part time and I could not work remotely one day a week, even though a few other folks in the agency worked remotely. My boss earnestly added, “I think coming back to work full-time will be a good thing for you.  A few good successes at work will really help you feel better.”  Oh, right, I was hysterically sobbing in a hospital parking lot at the end of every day because I wasn’t kicking ass at work.  Silly me.

I realized now that that she thought she was hiring a workaholic who would sacrifice everything, including her family, for her career.   When I decided to take leave when Simon was born and again asked for accommodation when he got sick, she realized I was not the person who would sacrifice everything for my job.  I honestly think that if she had been in my shoes, a few good successes at work at the expense of her spouse and child WOULD have made her feel better.  In some strange way, it was comforting to know that I was disappointing her.  My biggest fear and question about becoming a parent and a wife was if I would be able to prioritize my family over my career.  I was getting a clearer answer to that question.

I’m pretty clear the email she sent me just before I went out on leave when Simon was born was to have “proof” for why she was getting rid of me. When I came back while Simon was in the hospital, she continued to create situations in which it was impossible to succeed. Evidently my having a critically ill child was not going to interrupt her plans to force me out.

When I returned full-time, the vice squeezed tighter and tighter. Finally, at my parent’s insistence, I contacted an employment attorney.  The lawyer agreed to work on my case immediately.  The best part was that she would work on contingency- i.e. she would only get paid if we went to court and we won.

A few days after engaging the attorney all hell broke loose. I was on a break in my office with the door closed and on the phone with my attorney.  Without warning or knocking, my boss swung the door wide open and started rifling through binders in cupboard next to my desk.  I paused my conversation to ask her if I could help her find anything.  She replied, “No”, and continued to slam cupboard doors and pull binders out and slam them on the counter.  Then, she turned to me abruptly and spat out, “Is there something going on that I should know about?”

Careful not to cover the receiver so the attorney could hear everything, I calmly replied, “No, I’m just on a break and on a call.  I will be off in just a minute and then I’d be happy to help you find whatever you were looking for.”  She glared at me and ordered, “Come into my office when you’re done. We need to talk!” and slammed the door on her way out.    With a shaking voice, I whispered to the attorney, “Did you hear all that?”  She had. She warned me to document everything as carefully as possible and to call her if anything else happened.

I sat down in front of my boss’s desk and she shoved a document at me. I was being put on probation for poor job performance.  When I asked how long she had had concerns about my performance she replied 6-12 months.  I had just sent the attorney my last performance review conducted less than a year before and it had been stellar.   I was too shocked to ask any questions and too angry to risk saying anything. Shaking, I left her office and stepped outside to call my attorney.  She advised me to send her a copy of the probation document and ask for a few days to review it.

The next day, my boss and I met with Human Resources.  I entered the meeting hopeful that a neutral, reasonable person would be able to see how insane this situation was.  Instead, the meeting started off with the HR rep telling me she hadn’t been sure that it was even legal to take my paid family leave when Simon got hospitalized since I was just providing “psychological support”.  My mouth literally dropped open as I realized what she was saying. In her eyes I wasn’t Simon’s real parent and was just providing “psychological support” to Laura.  She quickly added that her research showed that it was, in fact, a legal use of the Family Medical Leave Act (FMLA).  The fact that this high ranking HR agent didn’t know the basics about FMLA terrified me.

I sat back and tried to look confident but I was in a cold sweat and my legs were shivering uncontrollably under the table.  The rest of the meeting was a blur.  It was clear my boss had been planning this for a long time.  I left knowing that I had to leave my job and I had to do it quickly.  It didn’t matter that my son was in the ICU.  If I didn’t get out, I was going to get fired.

I searched for a few weeks until I saw a posting for a job at a health department.  It included that the position would report to someone whom I had worked with peripherally years before (and liked!).   My heart flooded with hope.      

I applied for the job and was scheduled for an interview on November 5th.   As the day approached, our lives began to look more and more hopeful.  We were given a tentative discharge date for a few days after the interview.  The election would take place the day after the interview and it looked like Obama might actually get elected.  I had decided to leave my job no matter what and stopped feeling so terrified.  Things were finally turning around.

On Monday November 3rd Simon started getting fussy. By the next day, he was diagnosed with gram-negative sepsis from an infection in his Broviac line (a really awful bacterial infection in the IV that was going into his central vein).  They started him on powerful antibiotics and told us he should start feeling better by the next day.   We were nervous but grateful that they had identified the bacteria and were starting treatment.  This was just a little bump in the road.

Two days later, on November 5th, the bottom dropped out. Dressed in my best suit for my interview, I walked into the ICU to see Simon before starting my day. It was quiet.  Way too quiet.  I peered into the crib to look at my son.  He was grey and still.  His lips were blue. If he hadn’t had a heart monitor on, I would have been very, very sure he was dead.

We could barely rouse him enough to open his eyes.  I tried not to panic.  I needed to reschedule my interview and face the consequences of missing another day of work.  There was no way I could leave with him looking like this.  Laura saw my expression and came over and gently took my face in both her hands.  “You have to go to this interview, Jaime.  The best thing you can do for this family is get out there and kick some ass and get that job”, she said firmly.

I knew she was right and I couldn’t imagine leaving him looking like this.  I lay over Simon’s little body and cried until I couldn’t cry anymore.  Even though I didn’t think he would understand me, I whispered my apologies into his tiny ear.   “Hold on, little boy”, I begged,  “Just hold on until I get back.”   I dried my tears, straightened my back and walked out of the ICU determined to do what I needed to do.
I have no idea how, but I made it through the interview.  I went back to work and pretended like everything was fine.  Laura called me in the mid-afternoon to tell me that I should come back to the hospital.  Afraid of the consequences of leaving work AGAIN but more afraid of the consequences of not getting to the hospital, I left.

As I greeted our nurse on my way to Simon’s bay, I stopped in my tracks.  She looked scared.  “How bad is it?” I asked?  She grimly said, “I don’t know what’s going on, but it’s not looking good.  I’ve have an urgent call into the resident.”

Within an hour of my arrival, Simon started vomiting and pooping what looked like reddish-black coffee grounds.  Our nurse visibly blanched and literally ran to get a doctor.   The doctor determined that the antibiotics being used to treat Simon’s sepsis had interacted with Coumadin, his blood thinner. The feeding tube threaded through his nose into his stomach had torn the stomach lining and he couldn’t clot.  He had been slowly bleeding to death since yesterday.

Within fifteen minutes a team moved Simon back into the main ICU and started a blood transfusion. His body responded immediately and within an hour, he was warm and pink and hungrily sucking on a bottle, something he hadn’t done in weeks.  By the next night, we were back in our regular spot in the step-down unit just in time to hear the cheers echoing throughout the hospital as Obama declared the winner of the presidential election.  I began to feel the faint flicker of hope again.  If Simon could bounce back from this so fast and we could get a black Democratic president elected, maybe there was a chance I could get this job. 

Evidently I pulled it together well enough for my first interview, because they brought me back for a second interview.  Things at work were horrendous but deciding that I wasn't going to take it anymore helped me make it through each day.  Simon kept improving and we waited with crossed fingers to get a release date.  After my second interview, I waited on pins and needles to find out whether or not I would need to stay on the job hunt.  

The week before Thanksgiving, we got everything we hoped for.   On Thursday November 20th Simon came home and the next day I was offered the job.  It was a 40% pay cut if you factored in the decrease in salary and increase in cost of benefits but it was a job in public health with a boss I could verify was not a crazy tyrant.

Four years ago today I made the hardest decision of my life when I left for that interview.  I didn’t know that I would end up with a great job and a boss that understands that in a crisis, family comes first.  I didn’t know that things were about to get better and that Simon would get out of the hospital in a matter of weeks.  All I could see was a still grey baby and hear my wife cheering for me amidst the chaos.  Laura, I am forever grateful to you for making me go to that interview that day.  We made the right decision.  

Post script: The attorney didn’t think our chances were good for winning a lawsuit so we asked for a settlement.  The company ignored the requests.  When that process was over, I filed a complaint with the Department of Fair Employment and Housing. They took my case, with four specific claims, but after a year of investigation, they determined there wasn’t enough evidence to make a determination. I was left with the option to sue but decided to just let it go.  Life is too short.

Written by:

Wednesday, October 17, 2012

Recap or the 500 Hats of Bartholomew Cubbins

We had a cardiology visit Monday. It had been 4 months. It snuck up on me and wasn't until the days before that I realized why I was moody, wanting to eat sweet things and generally just feeling on edge. It's better than it was 4 years ago but I still feel it.

Still, Simon was great. He was looking forward to seeing the puffer fish. He talked about saying Hi to Dr Rosenfeld and Dr Patel. He understood that we were going to check his heart and didn't balk when I mentioned the echo or the stickies (the EKG).

We are getting better and better at this. Simon laid down during his echo without me, he didn't fight the stickies going on. He wasn't happy about them coming off but there's 12 of them and they are STUCK so it's understandable.

He is a pro at moving from thing to another and waiting in between is even pleasurable when you have Clown fish, an Ipad, and people that are genuinely happy to see you again at each task. It's a 2 hour visit but it flies by.

And the news is good. Heart function is the same if not a little better (ejection fraction is 62 and shortening fraction is 34!) We are well within the normal range for function and that's even after reducing meds from last time!). The left ventricle is the same size which means that Simon is growing into it and certainly the heart is not in distress. AND here's the kicker....no visit for 6 months AND we're going down on medications again. One less dose of Lasix and discontinuing Aldactone!! That's mishuggeh.

I left the Dr's office in a kind of stupor. Like, I'm not sure what just happened but I think it's good. I wasn't quite sure how to feel.

There's always a build up to these appointments because there's always the chance to get bad news. There always will be. That's the nature of Cardiomyopathy. We live in the present, which is pretty darn good, and we know that the possibilities for something different exist in the same way that a change in hairstyle is likely to happen as you age. I for one have been very happy with my own since 1996. That said, I am very glad to have grown out of the mullet from 1986.

I would be very happy to have Simon stay in this phase of heart function AND also know that in about 10 years, around puberty, we may be in for some growth, change, who knows.

So we came home. I made the calls, posted to Facebook and got lunch ready.

Simon hunkered down for some audio book time and within 30 minutes of walking through the door he was asleep on the couch with the last lines of The Sneetches sending him into his nap.

I wasn't surprised he was napping. He seemed to be fighting some kind of bug from Sunday evening when he sported a fever (but nothing on Monday and in good spirits) plus whether he shows it or not, a cardiology visit is just as significant for him as it is for the more (but barely) cognitively mature me.

He slept for three and a half hours! Way to work it out Simon Lev.  I wish that I could do that. I wish that I could remember how to go through something hard and then almost immediately take the time and space to completely shut down and recharge.

He seemed in really good spirits when he woke up and we went about the rest of the day and even yesterday. I get lots of cuddles, we have some good laughs and even a Puss in Boots dance fight reenactment.

And then last night.

I came home from time with a friend to hear that Simon had just had a odd wake up. He had been asleep for at least two hours when Jaime told me that he had just woken up for about 10 minutes (unclear if he was totally awake) and was angry. He was frustrated and talking about 'not going anywhere' or just 'no no no'. He didn't want to be held, cuddled, or comforted. He was "pissed off" was the exact term that Jaime used.

An hour later as Jaime and I are finally settling into bed it begins again. It's different from his rough times a couple of months ago. Remember the "I'm gone. Simon's lost" rants (Sweet Child O Mine)? This is not one of them. This is angry, defiant, and very very clear. He will not go anywhere. He does not want it. No. No. No. I sat down next to his bed careful not to touch him as he was very clear he did "not want that!" He was sweaty and his heart was beating fast from all the kicking and punching he was doing in his bed. This boy was angry!

After about 10 minutes I brought him into bed with us and with eyes closed he continued this for about 20 minutes. We talked with him about the appointment. Jaime walked him through it all over again even encouraging his righteous rage. I told him how I heard him, saw him, was right here for him. He worked it O.  U. T. out!

We said all those things that are meant to encourage the feeling of feelings. Jaime and I are both practiced and committed to it. We want Simon to be able to have his feelings. Have them and move through them....however many times he needs to. We can do our damnedest  to provide a safe container for it but lordy if those feelings aren't big. They are huge.

I understand it or at least I think I do. He can tell me when he's twenty that I had/have no idea but right now....holy crapomoly. There is so much that has happened and been done to this boy that it makes just right sense that 24+ hours after a seemingly smooth cardiology visit, with no blood draw even, he should let his rage loose during that half conscious dream state we call some phase of sleep.

The 500 hats of bartholomew cubbins.jpg

He has every right. And just like Bartholomew Cubbins I suspect and hope that as Simon grows, he will keep taking off his hat. Bart had to take off 500 before his head could be bare. I could go on about the King and how Bartholomew needing to bare his head for him is a great metaphor for being humbled before life in all it's mystery and glory....I could, but not right now.

 At some point Bart's hats start to get more and more elaborate until the 500th one is the most feathered and bejeweled thing imaginable.  He ends up trading it for 500 gold pieces, a real treasure, but almost ends up beheaded and is pushed off a tower beforehand. It's a deep story.

Simon is working something out. I think as a parent of a 4 year old I am in good company when I say I have very little idea of what is going on in his little but perfectly shaped head. I know what I've been through with him but I know very little of how it sits in him. It's important that it have time and space to come out.

I think my job during these outpourings is just to be with him, let him take his hat off, be bare, whatever that hat might represent. However complicated that hat or those feelings might be.

I think he's working towards becoming himself and (here comes the cheese)....that is the best treasure of all.

Yes, yes I did.

Thank you Dr Suess

And here are some pics from the last couple of weeks

Simon and Mamaw swinging

At the Childrens Hospital 100th Birthday Party
 Lovin' up the Chipmunk

Culinary Adventures

The new obsession- Look at that form!

Long hair gel experiments

Post Haircut Ice Cream

New Year candles

Tashlich- Yom Kippur ritual of casting off 'yuck' from the past into the water

Green Eggs and Ham!

Looking good for Yom Kippur services- 
 ironic to come after Green Eggs and Ham photo


LOVE those Mamaw sleepovers

 Jaime made Simon a canopy/fort bed in honor of Sukkot


Written by: