CLAP!

We have some older tapes of Liam, but we could not find the 8mm video camera we took them on - the only way to play them back.  Recently we were able to borrow one and I tried to connect it to the TV yesterday.  But none of the cables I tried worked. My patience was running out and I was just ready to give up when I found one more cable.  I hooked it up, hit play and.....

"CLAP!" .....and a huge smile and a stinky giggle, were the first pictures and sound I saw and heard.  And all of the sudden Liam came alive again. 

In this clip Liam was sitting at her reading tutor.  She just accomplished a little task he asked from her and she was working the crowd, the little rat. 
Tutor (teasing her):  Liam, do one more and then you can have a carrot.
Liam (getting the joke and right back at him):  ohhhh, I thought there's candy...
.......
.......
Tutor:  One more word problem and the we'll do math.
9 years old Liam:  ohhhh (as if she's in high school and hates algebra)

All caught on tape!  We laughed - and wiped a small tear that made its way somehow to the corner of the eye.  You can just sense her special personality via the picture.

It's so good to see her laughing, talking, interacting.  This is so much more than she did in the last 2-3 years of her life - especially the very last one.  With all that happened in our life since Liam's 2006 difficult surgery - the one she never returned to being herself after - we forgot how lively she was.  Yesterday we saw her walking (WALKING!!!!) in her walker, driving her wheelchair, riding horses...and much much more.  Her speech was so much better too.  She talked in full sentences, asked questions, made eye contact.  Bunch of old tapes, WHAT A GIFT!

Another clip

The Buffalo Theory

Remember I said I don't like theories (about our existence)?  But I'm very interested in theories about our evolution.  Here's my favorite.  Just a little middle of the week treat.

Random, annoying thoughts

Contemporary Slavery
The Jewish story of the exodus from Egypt (you know, Pharaoh, Moses, Charlton Heston....) main scheme is how the Hebrews freed themselves from slavery. One of the most famous songs of the Passover night is "We were slaves" (and now we're free, etc.)  Let's leave the discussion if this is a historical truth or not for another occasion.  Today, since I can't wait for Passover, I'll ask the question:  (Assuming we were indeed enslaved) Are we really not enslaved any more?  And just to clarify, by "we" I mean the human race, not just the Jews.  And just to clarify a little more, this discussion has nothing to do with neither religion nor the old testament.  It has, however, everything to do with slavery.  Self inflicted slavery:

• We carry cell phones at all times.  We make ourselves available to anybody at any time (during driving too, DUH!).  We keep checking it all the time as if the world is coming to an end.
• We jump to every ring, every chat, every tweet.  (Why do we do that?  Why people can call us whenever THEY want?  When it's not the ring of a phone, do we let people interrupt what we do?  Why are we allowing ourselves to be enslaved by a phone ring?)  We're all little Pavlov dogs, aren't we?
  
• We're enslaving ourselves to drinks and cigarettes and drugs and...well, anything that WE THINK will make us feel good.
• Some of us spend more time at work as if we're married to it.

These are just a few examples from our daily lives.  The list is long, but you get the idea.  We're enslaving ourselves to these and many more - out of our own will.  And we're forgetting ourselves.  We forget how to set ourselves free again, don't we?  And we completely forgot how to to be enslaved in the first place. 


Condoms
And almost on the same subject:  Why are we keep walking into a brick wall?  Why are we:

• Eating so unhealthy as to harm ourselves, only to realize years later what we did to our bodies  and try to "correct" it with medication?  Wouldn't make more sense to eat healthier to begin with?
• Similarly, abusing our bodies with inappropriate (not to say dangerous and stupid) activities, break our own backs and knees, only to start taking care of ourselves AFTER the body is already injured?  Wouldn't it make more sense to start yoga and gentle exercise in a younger age?  Wouldn't it make sense to take care of our body rather than abuse it? 
  
• Going out to wars, kill, get killed - only to come to an agreement after much hostility?  Wouldn't it make more sense to talk it out in the first place?  (I know, I know:  what if we tried to talk and it didn't work?  Ah, of course: let's kill them all.)
• Getting sick - since we live so unhealthy - and then take medication to try and make things better?  Wouldn't it make more sense to strengthen the immune system to begin with?
• Putting ourselves through all the possible stress in the world?  Wouldn't it make more sense....complete on your own...
• Going into debt just to work the rest of our life to get out of?  Wouldn't it make more sense....complete on your own...
• Pollute the world and then try to clean it up?  Wouldn't it make more sense....complete on your own...

The list is long.  Again, you get the idea.  We, humans, are doing so many things that, looking back at them, make absolutely no sense.  And then we try to change things and sometimes, I mean more often than not, it's too late to roll the wheel back.  The damage was done.  And the incredible thing is that we don't learn from our experience.  We keep walking into the brick wall.

Isn't it so?  When we're young, we think we know better, nah?  We eat, we drink, we party.  It'll be ok, we say, we know what we're doing.  You live only once.  You've gotta enjoy every minute of it.  Whatever happens happens.  Off course, we don't have the slightest clue what we say at the time.  Suddenly we wake up at age 40-50-60 with high cholesterol and a bad back and a beer belly.  And suddenly this sentence, you live only once, looks too remote, not applicable.  Now we have a family that we love.  We're not prepared (I mean, careless) to leave this world like we were when we were young.  In the best case scenario we "wake up" from our childish illusions an try to take care of ourselves.  But it is often too late.  Or at least we convince ourselves it's too late.  (Because really, I don't think it's EVER too late.  With enough will power one we can change our lives at any age.)

It's true that sometimes we don't have a choice.  Sometime a certain illness if falling on us or we get into financial difficulties - none of which is in our control.  (And sometimes your child is born with severe disabilities.) I'm not talking about such cases.  Only on these cases that we neglect to prevent in the first place.
So you can relax.  This paragraph is not really about condoms.  Sorry for the disappointment.  No juicy, sexy stuff here. This is a mostly PG rated blog, with occasional spikes to PG-17.5.   I just used it as a metaphor for many of the things in life we should [maybe] try to prevent and we don't.

I know:  I sound like a cheap preacher.  Oh well, I'm a lousy author.  But down below the used and beat-down words lies the truth.  Each one of us knows his/her own little truth.  And really, I'm not here to preach.  As far as I'm concern feel free to send your life straight down the drain.  Feel free to eat unhealthy and talk while driving and stress yourself out.  I'm ok with that.  No need to change anything, really.  Disregard everything you read.  Sorry for the waste of time.

Something's missing

The day before Halloween was my birthday - the first one without Liam.  Most people build "grave yards" and hang skeletons in their front yard.  We went for the real thing.  We sat on a blanket next to her grave, read Frog & Toad to her, took out a few tissues, and made them wet.  As expected, no skeletons came out, but I could hear her lough to my "Toad voice".

Today is Halloween - one of Liam's favorite evenings of the year.  People are outside on the porch.  The atmosphere is halloween-ish, as expected.  I'm looking at the picture of Liam smiling at me.  And I'm sad.  I'm just sad.


An Imaginary Conversation
"So Asher, got any plans for the weekend?"
Oh I don't know.  Maybe rake the leaves, ride my bike.  Visit Liam's grave.  Watch football, drink beer.  But the last two are unlikely  to be absorbed.  The "grave" bomb killed the imaginary conversation.  (Of course, when I'm being asked this question for real, I don't mention the grave.  I'm swallowing it - even though it's floating on my tongue.)

Purpose

Readers wrote

This post is a loose translation from Hebrew.  Recently I received the following blue text from a loyal reader of this blog:

Different philosophies/theories/thoughts claim that we arrived into this world for a certain reason.  That each and every one of us supposed to leave some sort of mark on this world (during his/her lifetime). 

And I was wondering:
Why did Liam had to go through this specific track in life, with all the associated suffering?

When you see how many people she touched;
What kind of change she made in their hearts;
The marks that she left on them;
Something becomes clear to me:  Things did not happen randomly.  It's all for a reason.

And if there's any consolation, maybe it is what Liam left here before moving on to a different world:
Simple joy.
Unconditional acceptance.
Love.
An incredible "instinct" or sense for life.    (Sorry, no good translation here...)
(The writer referred more to Liam's 14 years prior to the last, most difficult year of her life.)
My reply went something like this:

As you know, I'm not a big fan of such philosophies.  I think that since the [prehistoric] days that humanity just started people tried to find answers to the questions:
How did we come here?
Why are we here?
Where are we going when we die?
Etc., etc., etc.
And we will continue to ask those questions until, well, forever.  And, just like we didn't get anywhere with the answer in all those millions of years we're on earth, it's most unlikely, in my opinion, that we will never find answers any for them.  Definitely not in our lifetime.  (Well, never say never, but you get the idea.)  Thus, this is just a waste of time to bring those philosophies up and discuss them.  Just my opinion.

On the other hand, I realize that those who discuss such outlooks are completely equal to me both in their opinion and their knowledge.  We're equally all in the darkness of the unknown.  I don't have the right (and neither the wish) to criticize others' thoughts.  I realize that some of us "have to" feel "something" regarding our existence and find a reason for everything.  I'm not one of those.  Thus, I don't really care for these philosophies.  I simply live my life ignoring them.  And this, by the way, is MY entire philosophy about life:  I simply live them.  Period.  There's nothing to add here.  And when die, I'll simply die.  End of story.

(And in parenthesis and really not meant as criticism:   Maybe, just maybe this is how god, The God, you know, is being created?  We - human beings in general, not myself - feel or sense things that we don't understand completely or can't explain and have no way of finding out anything about them.  We make up answers and explanations and interpretations to things clearly beyond our grip.  And then we get used to our own creations and we pass them on generation to generation.  And on the way, throughout the thousands of years, some original meaning is getting lost and some new interpretations are being introduced.  And there you have it:  A new belief system, a religion. And I'm sure, oh yeah, I'm sure, that your rabbi or guru or bishop or imam (etc.) has the full explanation of what's happening in the "afterlife".  But, do they really know more than you and I?  How so?  Do you really believe so?  But, we're getting off track here.)

Back to Liam and the blue text above:
There are many people who leave an incredible mark on this world:  Napoleon, Muhammad Ali, Mahatma Gandhi, Kennedy....the list is long.  We don't have any answers where they came from, how they become who they were, or where they have gone (not including Ali, yet...)  Or, what ever happened to their soul (if there's is such a thing - their soul).  This all has to do with how I started this reply:  We have no idea where, what, why.  And that's the way it will stay forever. 
All that is left for me is to feel fortunate, incredibly fortunate, that I had Liam.  I leave the reasons why she came into this world and where she went to the philosophers among us.  Except for straight forward, scientific, medical explanations, I can't explain why she "had to" go through all the suffering.  It is what it is.  I don't spend time thinking about it.  I remember the good and happy Liam, not the suffering Liam of the past several months.  And I hope that this is the way it will stay and that the rest [of the bad stuff] will blow away with the wind.

Maybe what helps me to think of her as such, is because I was there, right next to her, in many of those suffering moments.  I mean, long hours.  I tried my best to help.  In the few moments that she was relieved of the pain, we took a breath.  We didn't ask why or what or how.  We just took a breath.  At some point, it was clear that there was little we could do to help beyond sedative medication.  When we decided to enter hospice - or, in blunt words: to end her life - our only wish was that she will never experience suffering again.  Not even for one thousandth of a second.  When she gave her last breath in this world, the suffering died too and for me there's no reason to look back.  For the entire last year we looked for a reason for the suffering.  We never found any.  Now it's time to move on and remember just the good times.  Enough with the bad stuff.

But, since we're already on the subject,  I don't see any  connection between the lesson she taught us all  and the suffering she went through.  In other words, she would have left the same incredible mark on us even without the suffering.  She was a special person.  Special people don't have to go through stuff in order to shine their light on the rest of us.  That's part of what makes them so special.

 There are those who are still looking for [other] answers:  What did Liam had?  Why did she went from a healthy, happy child to being really sick?  How suddenly she had blood and kidney problems?  What did she dies of?  Etc., etc., etc.  I don't give a damn about any of these questions.  Water under the bridge.  Had they performed autopsy on her, maybe it would have been interesting to know.  But they didn't (and we never talked about it and I'm glad we didn't.  I don't think it would have revealed anything.  And even if they did, what then?  She's gone, why is it important to know?)  When Liam was just born and arrived an NICU, somebody started a research of why she was born the way she did.  While I completely support the scientific aspect of such research, as a dad I didn't want or need it.  It already belonged to the past at that time.  She was already here.  All that was left was to see that she stays here.

To me the question is not "what happened" to Liam but quite the opposite:  With a malformed brain to begin with, which was additionally being attacked by tens of seizures a day, and after numerous difficult surgeries and other illnesses - after all of that (and really, much more) - how come Liam was still the positive, loving, laughing person that she was?  In the very last few months of her life, or maybe after she passed, I think that the medical field started also realizing we have something special here.  Nobody has an answer to the above for it cannot be measured in the lab, or viewed in an X-ray or MRI images, neither can it be listen to or smelled.  But really, it's not that important.  What IS important is the incredible presence she gave us and the memories she left.  What a gift.  I wouldn't want it to be any different (less her suffering, of course). 

A few months after Liam was born and the magnitude of her problems was known, somebody said how lucky she was to be born to parents like Rachel and myself.  Over the year I started feeling the same, just opposite:  How lucky we are to had her.

The Queen of Bicycle

Back in 2004 and 2005, a year before a major orthopedic surgery, which changed her life for ever, Liam was a very active rider.  When we went to the track on Saturday mornings, she used to go 2-3 full rounds.  That's nearly 1 kilometer.  Most of it was her pedaling by herself.  She would need some help here and there.  
In spring of 2005 Mery Lin Elementary had their annual Linapalooza talent show.  When we asked Liam if she wanted to perform, there was no hesitation.  "YES" with a big smile.  We rehearsed maybe once - because it was just too difficult to get the bike and Liam on the stage with no ramp.  There was also the question of timing:  how could she wait for her exact show time behind the stage, if we could not get her wheelchair there?  Crucial details that "typical" people are never aware of.  Anyway, these are all details which made it just most difficult and challenging - like most other things in her life. 

But when we finally made it up on the stage for showtime, all those concerns melted away (except for the thought of how to keep her safe, how we would take her off the stage, etc.)  The following video clip is not of a great quality, sorry.  I don't know if the viewer can sense the atmosphere in the school auditorium.  It was electrifying. I was on stage with Liam so I couldn't see much, but I was told that people in the crowd cried.  You have to understand:  Prior to this performance most kids and parents saw Liam in her wheelchair, saying hello to everybody, but not very active otherwise.  In the playground, after school, she would be tired.  Her head would start falling, she would drool.  That's the picture most of the people had of Liam.  And all of the sudden they see her on stage, pedaling like crazy to the beat of catchy music.  The place went crazy!
It might be a bit hard to tell because of the poor quality of the clip, but try to observe the expression on Liam's face.  It was priceless.



  

Liam montage

Produced by Giana Perrone and Meitav Vilensky.  Thank you girls.  Great job.

A mound of dirt

Back Blogging

After Liam passed away and after we sat Shiv`ah, I didn't lose appetite for writing, but I did lose appetite for thinking.  And when I don't think, I don't think I can write.  Well, the well is not completely dry, so every now and then I'm hoping to post something.  This blog will stay alive, although maybe not as frequent a when Liam was still here.  So here we go again.


A mound of dirt

My first ever visit to a cemetery, if you can really call it a visit, was when I was in 5th grade or so.  Well, maybe it wasn't my first visit, just the first visit worth remembering.  Eh, I meant the visit that was difficult to forget.

It was a dark night in the northern Israeli valley where I grew up, like most nights in this agricultural region.  We
made our way through the alfalfa field.  Night activity was something we did as young kids on a regular basis.  Parts of it was fun and interesting - like identifying other settlements in the area based on their lights or learning the stars, sitting by the bonfire and singing songs.  But other activities were scary and in retrospect, plain stupid.  They tried to make soldiers of us at a young age and prepare us for never-ending war situation.  Anyway, I'm getting off the subject here.  On that specific night we made our way through the alfalfa field (which was full of snakes) to the edge of the cemetery.  The assignment was to enter the cemetery, two by two, and "observe the ghosts".  I'm pretty sure that no ghosts showed up that night.  While we were scared as hell, nothing really happened (DOH!).  Just a bunch of boring graves.
In later years I passed in or next to the cemetery many many time.  I was there either to bury someone from the community or simply because I passed there on my tractor as I was working in a nearby field. Even though I knew most of the people buried there, I could never feel any emotions when visiting there. The tombs were always the same, silent, boring.

Even before Liam left us, we started discussing the funeral.  I was for cremation.  Liam is in my heart, I said.  I don't need a meaningless, cold, slab of stone.  And on top of that, in a Jewish cemetery.  (Which begs the question:  Why us, the still living, "paste" our religion to the dead?  Why put a cross or a Magen David on the tomb?  When somebody picks a religion, he/she does it from a point of belief.  And belief is a matter of the heart.  Well, what if the heart is not pumping any more?  Who gave us the right to make a choice for the deceased? And, what if the deceased was not following a certain religion in the first place?  Wait, I think I got it:  the rabbis, priests, imams, etc. can only lure you into their religion if you believe them.  If you don't believe, nothing would help them.  But the dead, they don't argue about the religion any more.  They're too tired.  So the religious preachers get a freebie. In other words, when my time comes, go ahead and cremate me.  I don't want to give the religion "pasters" this pleasure.)  The number one reason I'm happy with Liam's new residency is that just outside the cemetery gate is the location of Nuevo Laredo.  (Poor girl, taco was one of her favorite foods...now all she can do is smell smell smell.)   Are you still following?  The subject was burial versus cremation.
But thoughts and reality are two different things.  Recently I visited Liam's grave - just a small mound of dirt at this point - for the first time since the funeral.  As soon as I entered that section of the cemetery, I was taken by emotions.  It was as if I was right there at the funeral.  Gone was the one month of "recovery" and all the dry-by-now Kleenex's.  Just a mound of dirt.  Strange.


A cup of coffee
A piece of cake.  A glass of beer.  A football game.  Gathering with friends.  All represent enjoyable things.  Things that bring us pleasure and costs us no effort.  Many of them we just take for granted. Liam, too, loved the good life and enjoyed food and friends like the rest of us.  The difference is that for Liam, even the most elementary things took a huge toll of effort on her side:  feeding herself with a utensil, playing on the computer, driving her wheelchair, baseball - just to name a few.  If you think about it, Liam's life was one big effort - from her first breath to the last.  No exaggeration.  Liam, however, despite the fact that she invested huge amounts of energy in every small hand movement that the rest of us take for granted, did not see it that way.  She simply enjoyed the minute, the food, the bite, the song.  She didn't think about the future or the past; she made no comparisons; she lived the moment - every moment. It's an important perspective to all of us as we stir the coffee.  One sugar, a lot of milk, please.
   

Buddy Baseball

Every now and then I intend to write something about Liam's life - prior to the last year.  Here's the first one.

 

Saturday in the spring, 7 AM.  "Liam, wake up."  The only person I know, who wakes up with a smile, opens her eyes - and smiles.  "Baseball", she says.  "SHHHHHH, let's be quite.  Meitav's still sleeping".  "BASEBALL", she repeats.  "Liam, SHHHHHH".  But she has her own agenda: "Abba, we go to baseball today".  Oh well, let her speak.  She's too excited.

So I roll her back (like you roll a log), change her diaper, put on her baseball uniform, put on her splints, pick her up and put her in her wheelchair.  After 20 minutes we're ready for breakfast.  Liam was never big about breakfast, but she already talks about lunch:  "Wendy's".  She knows what comes after baseball.

We eat breakfast on the porch and then I load the wheelchair into the minivan.  And off we go.  We're heading to buddy-baseball.  That's where many disable kids have a buddy who helps them (some play without the assistance of a buddy).  The buddies are typical kids who play baseball in little league.  They volunteer to help the disabled kids.  From what I heard from parents of buddies, there's a waiting list to get in.  This is amazing - and wonderful - that these young lads want so much to help kids with  disabilities.  And what do the buddies do?  It depends on the specific disability of the kids they are paired with.  Liam, for example, can do very little on the field, so her buddy drives her chair, picks balls up for her, helps her throw the ball, helps her bat, gave her water (good buddies even wipes her drool!)

The conversation on the way to the ballpark is of few words.  Liam was never a big talker. She repeats the same words over and over again. 
"Glen" (that's her baseball buddy)
Yes, Glenn.  Are you excited to see him?
"Glen"  (she LOVES boys)
Yes, Glen.  Do you want a snack?
"Mayim" (water, in Hebrew....I think we taught that word, along with some other elementary Hebrew, to half the city)
Are you excited about the game?
"Wendy's"
Yeah, yeah, you and your Wendy's...what about baseball?
"I'm hungry".

And so it goes like that for the next two hours or so.  Glen (or whoever the buddy is), not knowing Liam very well, is trying to keep her mind on the game.  I intentionally step aside.  Let them interact.  Every now and then the buddy looks for me:  something goes wrong with the chair or with the water or with Liam's drool (!) or with Liam herself - she's too tired or too hot or too something.

The baseball "game" is not really a game.  There are no 3 outs.  For a matter of fact, there are no outs at all.  Everybody gets a hit, everybody gets on base, everybody round the vases back to home plate.  Everybody gets to do that twice.  The same goes to the "opponent" team - a similar team from another part of town.  We have home and away games, which are all the same.

Liam's favorite parts are:
Warm up - throwing the ball (if you can call that...more of a weak toss) just to see her buddy bends down....smartie...did I mention she LOVES boys?
Hitting off the Tee.  Coach let her hit several times just to see her pleasure.
"Running" the bases - buddy is driving.

Her least favorite:  "Standing up" in the heat (or chill, games were in March and April) of the outfield, waiting for a fly ball (which never came, since very few kids could hit that well, and which she could not catch anyway).  She would get bored and the buddy would have to entertain her until it's time to go bat again.

At the end of the game, all players and buddies high-five all the players and buddies of the other team.  This is Liam's most favorite part of the morning.

And then we're off to the land of chicken nuggets and fries.

It sounds like a lot, but in reality it was always very little.  There's only so much you could do with Liam and she never had too much patience for the non-action parts.  Nevertheless, she would talk about the game for the rest of the day as if she hit for a cycle!  And in a sense, she did - every time she was on the field.

Walking down a steep slope

I'm walking down the mountain.  There's no path - you just try the best you can to find a place to put your foot down.  The walk is extremely difficult.  There are many boulders, rocks, big stones, smaller stones on the way.  There's no way to avoid them.  You must step  or climb on most of them to continue.  There's no way to turn back and climb up - you must continue down, down, down.  Any rock you step awkwardly on can send you tumbling down the slope.  Even when you're trying to just rest for a minute, things are shaky and dangerous.  All the while, I'm carrying a heavy, clumsy, backpack. It makes it so much more difficult to walk and puts pressure on my back. But somehow it also feels "good" to know that all my "stuff" is still with me.
I don't know what to expect at the bottom - is there an end point?  What would the bottom of the hill look like?  Would it be flat and easy or would it turn into a sharp cliff?
Eventually I reach the bottom and take the load off my back. But somehow it's not a relief.  All I find is.....nothing.  One big empty space.  A vacuum, maybe.  I already miss the down slope and the weight on my back.

How does one cope with the loss, with the mourning?

For me, it's helpful to look up-hill at the dangerous slope we walked for the past year.  I'm analyzing each and every boulder, rock, pebble.  I realize and recognize that indeed we had no choice:  there was no climbing back up and we HAD TO stumble on each rock.  And somehow this analysis bridges between the down-slope and the "now".  My annoying engineer brain is trying to find logical explanation for everything.  And this process somehow works for me - I think.  Everything is explained.  For months, while in-and-out of the hospital I've been saying "the writing is on the wall".  Looking back at it from the bottom of the hill up, I can see the unavoidable path now - the same path that I could not see walking down the hill.  And now, that it's all explained, all that is left are the longings.  How much I miss Liam.  Oh, how much....

Another thing that helps me is to be out and about:  to go to work, be around people (who are not involved), ride my bike to the park, go to ball games.  Some would call it denial; I prefer to call it healing.  At the same time, I fully recognize and respect that people grieve in different ways and that what works for me works JUST for me. 

I'm reading about the 5 stages of grief and trying to map at which stage I am.  And I think, just think, that I'm doing pretty good.  Too good, for a matter of fact.  Sometimes I hate myself for moving so fast.  Some would call it denial (here we go again).  Maybe it is, what do I know?  But when I went through an extremely fast similar process with both my parents, it worked out for me.  I don't intend it to be fast - it just happens that way.  The problem with moving so fast is that the people close to me (and society in general) don't move that fast in the mourning process.  That requires extra sensitivity on my side and sometimes to step back into the mourning process, into the grief - just out of respect to others - even though I moved on already. 

But don't take all this the wrong way.  At the same time I'm moving fast, I miss Liam soooooooo, so much, I don't have words to describe it.  And I'm crying occasionally - especially when I'm writing her name - LIAM.  

Missing them hoses

No more oxygen hoses.
No more G and J tubes.
No more drain leads.
No more million medicines.
No more diapers.
No more vomiting. 
No more ICU.
No more ER in the middle of the night.
No more ambulances. 
No more wheelchair. 
No more oxygen machine.
No more therapeutic standers. 
No more therapies. 
No more Dr visits.
No more car ramp. 
No more lift systems. 
No more feeding one teaspoon at a time.
No more walks with Liam in the `hood. 
No more OOOOOOWWWWWWies into the night. 
No more bad back lifting a heavy, floppy body.
No more Frog & Toad. 
No more Curious George. 
No more Poppleton.
No more Templeton. 
No more hospital parking passes. 
No more sharing the TV (it's all mine!!!)
No more "Abba, Abba, Abba" waiting for me on the porch. 
No more Ar-Chu. 
No more Hello-Hip.
Broken sidewalks are no longer a problem.
Similarly are houses with stairs.
And any other non-accessible location. 
No more water honey-bears with a straw.
No more "Mayim" (water). 
No more special utensils.
The special school bus will never stop by the house again, open the ramp, hold traffic, and let Liam down and....."I'm hungry".

I already miss her.


Where did Liam disappear?

Many people spoke during and after the funeral about the legacy that Liam left behind, about her aurora, about the lessons she taught us how to cope with a million hardships and keep on moving forward with a smile on her face; how she loved unconditionally; how to enjoy the moment - not dwelling about the past, not worrying about the future; how to live life to its fullest with a damaged brain and a poorly functional body, but with a healthy, strong soul; and we could go on and on and on....
Liam taught all of us, no exceptions.  Whoever got it, gt it.  Whoever missed the lesson, oh well.  There will be no tutoring sessions, no recorded broadcast.  Our teacher finished her lecture, packed her briefcase, and left the classroom for the last time.


Anatomy of grief
Each one of us grieve differently.  I'm writing here only about myself.
While I appreciate all the people who showed up to condole us, I personally don't feel any need to be condoled, to be hugged, for people to say how sorry they are.  They don't do anything t me.  Maybe I'm an insensitive SOB, but that's how I feel.  Comes to think of it, I'm not really sure I'm even sad.  Nah, that's not right and it came out bad.  Of course I'm sad, but I'm also happy:  I'm happy Liam was part of my life, happy about everything I was able to learn from her, happy of how much I was able to give her, happy she's not suffering any more, happy I have many pictures, happy, happy, happy.  At the bottom line there are a lot more "happy" than a momentary sadness.  I'm sure that I will experience many sad moments in the future, when I'll be thinking about Liam and tears overtake me.  But this will not be grief. 
I don't want to hurt anybody's feelings, but I really don't get this whole grief process.  Is it man-made or is it something built-into us?  (Similar to elephants, who grieve next to a dead member of their family; or baboons, who don't let go of their dead baby for a few days?)
It wasn't easy for us to see Liam's body taken from the house.  Only a few hours earlier her heart was still beating.  But in reality Liam wasn't with us for the past several weeks.  When I'm looking at her picture now, I'm in peace with the separation.  Liam tried her best to stick around; we did our best to keep her.  She left because it was time to go.  End of story.


Thus, perspective
About a year ago, during one of the early hospitalizations, Liam had an MRI done on her brain.  When the Dr came to talk to us about the image, she said something to the effect of:
There's no medical explanation to Liam's brain.  A girl with such brain "should not" be able to live that long, to drive a wheelchair, to go to school, to play on the computer, etc.  Many of the things Liam did was due to her strong character, despite her damaged brain.  To me, this just emphasize more how happy I am about the time I was able to spend with her and further minimizes any attempts sadness throws at me. 

Those who made it possible

TICU

TICU stands for Touch and Incredible Compassion Unit (don't believe the sign above the door, intensive care something.  Somebody who doesn't know the real character of the place designed it).  It is where we spent most of the last year with Liam.  I can't say enough good things about this place, which felt like home for so many nights. 

The beginning wasn't easy for any of us.  We "tried" other floors in the hospital until we ended there.   I'm not gonna pretend that we loved each and every professional we ever met there, but in the big scheme, things smoothed out over time.  Word of who Liam is finally made it through the computer system (I don't know how many times we had to answer the same ____ questions over and over and over again.  H-E-L-L-O, look it up BEFORE you come in, Dr.)  They learned who we are and we learned who the-many-they are. 

Trust and working relationships were built.  But with the nurses it evolved to much more than that.  You see, the Drs you see every so often.  The nurse is right there on the floor, in the room with you.  day and night.  It evolved to REAL care - both ways.  Liam nurses, like the rest of the world, got magically attached to her (I think she's like a spider.  Just laying there quietly, motionless, yet she's able to lure people to er web.)  And we got attached to them. 
 
The one thing I'm sorry about, and it's nobody's fault, is that the TICU folks never got to meet the REAL Liam.  The happy, loves to eat, loves to joke, loves to laugh, loves to love.  They only saw her at her worst.

The goodbye hugs and the tears shed when we left the floor for the last time were genuine.  They were not just sad tears because Liam will never be back there, but care tears for each other.  We feel like they are part of our family - no exaggeration.  

Our door is always open and welcoming, you TICU folks.  Any time. 


Happy new year?
Today is the Jewish new year.  The common blessing or greeting is Happy New Year (how genuine!).  How happy will be our year?  What will life without Liam be like?  Is it even "right" to wish us to be happy without Liam?
I think that in the long run we'll be ok.  We will be happy.  We're happy people by choice.  But ,I'm not sure that the new year will be very happy.

Anyway, this may be a good time to look at the year past and thank all the people who were involved.  Without your help Liam's last year in this world would have been a lot worse.  So big THANKS!


   
        

Sisters

Ever since we returned from the hospital and started the hospice, Liam magically became "good".  While she was masked with the oxygen machine, she did not desat (i.e., her level of oxygenation stayed normal) - strange.  She did not have any infections.  Everything looked so peaceful, perfect.  That was a deceiving picture.  Liam's body was in a bad shape internally.  It was just a matter of weeks/days/hours/who-knows and we decided to end it pleasantly (sorry for that terribly misused word) at home.

Wed, Thu, & Fri (Sept 1-3) nothing was moving.  Liam continued to be very comfortable.  We didn't run out of patience, but at the same time we saw no reason to prolong it - especially since Liam was non-responsive and the decision was made (to let her go).  So on Friday, September 3rd, at 8 PM, we pulled Liam's oxygen mask off and replaced it with the nose-thingy - the way Liam was getting oxygen for several years now - low oxygen flow into the nose.  The difference is that the mask forces oxygen into the body whereas the nose-thingy just encourages breathing and adds moisture (but it won't breathe for you).

Before we made the switch we explained to Meitav what we are doing and what to expect.  Naturally, there were a lot of emotions in the room.  When we made the switch we expected a big drama.  We surrounded ourselves with a few supportive people.  But in reality, nothing happened.  Liam continued to breathe just the same.  What DID change was that now we could see her entire face (for the first time in two weeks); and we could hear her heavy, moist, difficult breathing.  Meitav laid next to her, hugging her, petting her.  And this is how she fell asleep - hugging her dying sister.

Liam breathed fine all night long and into Saturday, Sept 4th.  In late afternoon things changed.  her breathing became slower with more and longer breaks in between difficult intakes.  We and Mr. Morphine just made sure she is comfortable.  it was not easy to watch.  We asked Meitav several times if she wants to go to the other room, but she kept declining.  She hugged her sister and cried, and said goodbye, and petted her, and.....

At 6:40 PM, Saturday, September 4th, 2010, Liam passed away. 
I apologize to the reader, but it seems that my words are failing to describe the moment.  Meitav's love and courage to stay with her sister throughout this difficult, unnatural, impossible minutes - well, I'm not even sure how to complete this sentence....  (dam)

There are many adults who will never experience in a life time what Meitav already knows - and feels.  She's a smart, sensitive, courageous, generous and considerate girl.  She gave a lot to her sister - and received a lot, like the rest of us.  While this is an unfortunate situation, she made the best out of it.  


Meitav didn't prepare any written material for the funeral.  But after a few speakers she got up and spoke spontaneously.  I can't remember everything she said, but I do remember the punch line: "Liam was not a special need child.  Liam was special."  Well Meitav, I think you're special too. I'm so proud of my girls. Oh, the hell with proud.  I'm simply addicted to them.


 

Kashi

Kashi is a yoga studio and much more.  Those who attended Liam's funeral witnessed the Kashi folks leading the non-Jewish part.  Our family life is closely intertwined with either Kashi itself or with the Kashi people. Each one of us have a different level of involvement - some large, others minimal. 

In the past 10 years and especially in the past year, Kashi took care of our family.  They provided care (or just companionship) for Liam, meals, babysitting. rides for Meitav, and many more types of help.  You read in Chuck's speech how Jason-Rudra became part of our family.  Rudra was equal to us in the hospital.  He knows all the nurses and Drs and medications and....well, more than me, that's for sure.  (And, the relationships is a two-way street:  we're taking care of a few Kashi folks or Kashi needs here and there.)

What's with all these weird names?   I can't tell you for I'm asking the same question myself.  Most Kashi people have spiritual names on top of their birth given names.   So I decided to give myself a "spiritual" name too:  Menohug.
So what with the spirituality?  That too, I can't tell you since I'm not a participant myself.  (I simply take occasional yoga classes for the physical benefits only.)
I heard people accuse Kashi for being a cult.  Maybe, what do I know?  But if it is, it's a very good cult.  A cult that is caring and kind and respectful and and not forceful and helping people in need and spreading only good.  I think that after being next to Kashi and taking yoga classes myself there for the past 10 years, I can safely say they are not dangerous.  :-)  While I may not participate in any of the spiritual stuff that's going on in Kashi, I recognize the value of this place to people and to the community.  Well, this is really not an advertisement section.  If you want to know more, you'd have to find out for yourself.  I'm just here to tell how helpful Kashi was - wait, still is, I hear people taking out the trash - in our family's life.  A wonderful place with some wonderful people.

Here's Maha Tara's - another family friend - speech read near Liam's open grave: 


I am Maha Tara
My involvement w/ the Wittenberg/Velinsky family was 1st w/Emma  at a women’s intensive, at Kashi FLA. During intensive it was revealed she needed help w/her kid who had special needs.
Ma requested all the women from Atlanta get involved w/ this kid. And to help out anyway we could.
I was extremely fearful to help due to my lack of exposure to children, let alone a KID w/special needs.
My thoughts were:
I’m gonna help-out with this “kid” I don’t even know?
So I Signed up anyway for visits and general hanging out time w/ Liam.
I showed up on my appointed Saturday, not sure what to expect and thinking Geez…..
What could I possibly have in common, with this “kid”??
Her family was very welcoming, as if I was part of their family. On that 1st day we just hung out and talked, simply getting to know one another.
Somehow the topic of food was one of the 1st things that we talked about and how much we both love food, and especially Pizza, tater-tots and chocolate.
To the best of my knowledge Liam never met a Pizza she didn’t like!
In 2003, she and Meitav walked down the isle as Flower-girls in my Wedding! It was the most endearing event I have ever witnessed.

As our visits progressed… so did my “involvement” with this “KID”!
I got to go to her performances at dance recitals, where she wore an adorable pink leotard and tutu’ with these little ‘mary-jane’, type black dancing shoes…. Cute as ALL get out! SO PRECIOUS!
She once appeared in a talent show were she displayed her strength and agility riding her beautiful –sparkling Purple- Bicycle!  Blasting in the background was the song by Queen, “I like to ride my Bicycle”. She was laughing so hard as rode round-n-round the stage.

It always amazed me how active she was…whether she was Horseback riding, bicycling, swimming or playing baseball, there wasn’t much she couldn’t do.
She and Emma would show up for Saturday YOGA and during it she usually found down-dog incrediblly funny. She would start laughing, in the most contagious manner. It would crack me up every time!


On our visits, we would read, listen to her music, play with the computer, do art projects, enjoy eating foods and walk-n-talk.
My favorite was walking and talking. We would talk about school, friends and her teachers at Mary Lin.
We would talk about her ‘boy crushes’, which sometimes would change after a few weeks.
We would talk the way of her sensitive heart, and sometimes we would not talk at all. Just ‘Be’.
We sang songs as we walked around the neighborhood.
One song was ‘All around the Mulberry bush, and when we got to her favorite line, “POP goes the Weasel”. She would shout it as loud as she could! That nick-name stuck for me. “Weasel”.
She had many nick-names…..Monkey, Noodle, Little, Liami-Salami, Turkey Buzzard and Baby-girl.
All her endearments well- suited, from her simple, funny easy-going self to her feisty, multifaceted persistent-self.
She was a huge presence packed into a small body.

Liam’s sensitivity and keen perceptions were uncanny.
I remember walking in one day feeling pretty low but thinking I was hiding it well…. she took one look at me, and said, ‘aawww, sad’.

So I did find, what commonality I had w/this   
  “Kid.”
It is love and our ability to share it.
I feel incredible gratitude to have been part of her life.
Liam the artist, performer , hardy-eater, confidant, and my Friend.
I love and respect my ‘little family’. They did a great job, with her action-packed, fun-filled life of incredible LOVE.

And….For the rest of my days, whenever I hear the word ‘TOMORROW’……
“TOAD”, will rapidly follow.
I love you Liam- Jaya Darshana-my Weasel!
Thank you and Namaste!
9/5/10

Take me to the river

How NOT to build a dam

I almost made it.  Really.  All the way to the cemetery I was dry.  Most of the ceremony I only had small leaks.  Nothing serious.  But when our friend Chuck performed with his guitar in front of the open grave, the dam was broken wide open.  Not sure why. (Then, the water management engineer that's in me saw all the wasted water, got his shit together, and turned the wheel shut.)

The funeral, in case you missed it, was an "interesting" combination between Jewish tradition and Rachel's line of teaching in yoga.  So there we were, Liam and I, on top of the hill, being attacked by gods from the east and from the further east.  And all we want is pizza [non-dairy, off course] and beer.  But don't be mistaken.  The dam did not break open thanks to neither Elohim not Shiva and Kali and their friends.  It did because 2-3 days earlier, when Liam was already dying, I went for a bike ride.  And I heard three of Liam's songs coming up one after another:
Take me to the river
Bicycles
And some Jack Johnson song that I can't recall.

When I returned home, our good friend Chuck, who Liam loved hearing perform Take me to the river, was on the porch and I told him what I just heard.  So when I heard the modified words in front of the open grave, all dams broke loose.  I cried like a baby.

There were tons of people in the funeral, especially considering the quick sequence of events and the short notice.  While there were many tears, I don't think that the atmosphere was sad.  I, at least, cried out of huge mix of emotions - loss (but not sadness), love, care, seeing the so many people Liam somehow touched in her life, etc.  It's amazing how a girl, which was so disabled physically, was able to infiltrate so many hearts.  A quite infiltration, which did not insist, but also never gave up.  And in pleasant and soft ways.  And these, my friend, are the best ways to conquer.

Sadness
Comes to think about it, I'm not sure what sadness is or how it applies to us.  Sure, I'm not happy that Liam's gone so you may say that if I'm not happy I must be sad.  Maybe.  But I prefer to look at it in a different way:  Liam struggled with her health in the last year.  The writing was on the wall.  We got used to it and somewhere inside knew what to expect.  This does not take away from the sadness, but it sorts of redefines it.  Liam no longer suffers (dam).  She gave it everything she had - literally.  We gave her everything in our power to keep her alive or to keep her comfortable.  What else could you ask for?   She's free now (whatever that means) and she left a HUGE legacy and teaching behind her (we'll get into that sometimes later in this blog, I'm pretty sure).  I think that  all the people who were directly involved in Liam's life were amazed by her personality, her positive and happy attitude, her humor, the light and inspiration she spread without ever knowing it.  All she did was ask for pizza.

Clarification
I have a weird built-in characteristic (some would call it a character flaw, I suspect):  it's not that I don't know how to mourn, it's only that somehow I move forward right away.  Some people might find that offensive.  So if you see me happy, please understand.  Maybe I'm in denial (I don't think so, but if it helps you accept me as such, hey, what the hell...)  don't misunderstand me: I have my moments of tears.  At the same time, I don't dwell on the past or the loss.  I'm happy with the gift I received in Liam (a small dam) and I'm moving forward with what she left me.

Compromise
The funeral itself was a collaboration, a compromise if you will.  I did not want a traditional Jewish funeral.  I could not find the link between Liam's life and a bunch of birded rabbis, who don't even know her, say a bunch of archaic prays in the name of the Jewish faith, not Liam (there's more to the story of my relationships with Judaism in specific and religions in general, but that will come in a later post).  I wanted a ceremony that will represent Liam's life carried by people who knew her first hand.  However, there was a case of miscommunication and I ended up compromising for a mix of Jewish tradition with our wishes.  I'm not sure I'm happy about the role that religion DID play in the funeral, however, I was very happy with the compromise.  Not just the compromise I personally made (for the family, by-the-way, not for the religion), but the fact that Jews and Christians and Hindu and who-know-what-else all stood together and respected one another. 
Such a thing could not have happen in Israel, for example, where the ceremony HAVE TO be Jewish (by law) and where the orthodox rabbi probably won't approve gays and lesbians and Yogi masters to take part in such ceremony.  Compromise, that's the secret to world peace.  I ain't joking.  I'm very proud and thankful to all the organizers and participants who simply accepted and respected each other.  Sounds simple, right?  Well, if it's so simple, why do we have all the wars in the world?
I know I diverted from the subject you came here for.  But Liam was part of me and this is who I am.

Chuck's speech and song

When Rachel asked me to speak about Liam, I thought about sharing one of the great stories we have had over the years, like the day Liam ran away and had Rachel and I running all over the neighborhood looking for her, but I kept coming back to a profound statement that Rachel had made at Liam's Bat Mitzvah.  The tradition of the Bat Mitzvah required Liam to do some type of social project.  Rachel said that Liam's project had been all of us all these years.   It made me think about Liam's great purpose in life.

I met Liam when we moved to Hardendorf in 1998.  You know how when you meet someone, you can look in to their eyes and see either their lightness or darkness.  Liam was this spectacular little girl you had ever met -  not because of the wheelchair or the physical limitations, but because she had the brightest light you had ever seen.  This glow, not her wheelchair, attracted everyone to her.  Even the kids surrounded themselves around her.  I had to great pleasure of watching Liam and her sister grow up over the years.

But what was Liam's great purpose in life?

Let me digress.  I have always seen the god's in heaven with this big jigsaw puzzle, piecing them together, each puzzle being our lives.  We never know what the picture is going to be until they have finished with the puzzle.  They connect the pieces over the years and we just fall in to place.  Here's a piece where Chris and I move to Hardendorf.  Here's a piece where we bond with Asher and Rachel and become friends.  Here's a piece here, and a piece there.  The god's try to put a piece in where Chris and I moving away, but the piece doesn't quite fit just yet.  Here's a piece where I meet a guy named Jason at the gym who has so much darkness in his eyes.  I get him to come to my yoga class.  Here's the piece where he connects with the Kashi community.  Here's the piece where Jason, now Rudra, meets Liam at Kashi.  Here's the piece where Chris and I move from Hardendorf leaving this space for Rudra to fit in to the family's life.  Here is a piece where Rudra becomes Liam's best friend.  

Rudra once said that I had probably saved his life when I got him to come to that first yoga class.  He was wrong.  I was just part of the puzzle that was putting him with Liam.  Liam saved his life.  When you look in to his eyes, you now see a piece of Liam's light.  In fact, look around, you will see a piece of Liam's light in every one of us.  

Liam's  puzzle is now complete.  We see the full picture.  Liam's greatest purpose in life was to share her light.  We were her great project.

And a small part he wrote but didn't speak out (dam):

We have all learned from Liam.  She didn't live in the past.  She didn't live in the future.  She lived in the present.  You can't live fully unless you live in the present.  How are you going to use that part of Liam's light that she has shared with you today to live fully?

And then he played the guitar and sang (while I....dam):

Don't know why, nothing I can do

All the things, that you put me through

Love is a notion, I can't forget

My sweet Liam, I can't forget

I wanna know, can you tell me?

I want to know!

Take me to the river

Wash me in the water

Take me to the river

Wash me in the water

A dam

I was born and raised right next to where the Jordan river starts in northern Israel.  Right next to where I used to live there's a small dam that helps diverting the flow of the river between two routs (the natural one and a man-made canal).  It's a manual dam with a big wheel that opens and closes the shutters.  

Whenever I feel emotional and that tears are about to wet my eyes, I'm imagining myself at the big wheel, turning it to close the dam.  Many times, I found, it really works.  I'm holding the wheel and the tears are kept in bay.  (Not that I'm afraid of crying, but I hate to keep boasting CVS` tissue sales.)  But sometimes even when I'm turning the wheel, tears are still flowing down my cheeks.  It's like those thorny blackberry shrubs, or a dead nutria, that used to get stuck inside the dam's shutters, preventing it from closing completely.  So if I will refer to the wheel every now and then, you know what I'm talkin` about.  I will say (dam) and that means that I'm holding the tears at bay - have a Clean-ex handy.

Shiv`ah

Before you go screaming "what, another Hindu god?"  the word simply means the feminine seven in Hebrew.  It is also the Jewish tradition of sitting and mourning for 7 days after a funeral.  We, however, will not sit for 7 days.  Three will be enough, we feel.  We sat together with friends and family during Liam's last days.  It was sort of a Shiv`ah.

Schedule:

The shiv`ah with the family will be on Monday & Tuesday from 1:30pm - 3:00pm and then also from 5:00 ending promptly at 8:00pm.   Also on Wednesday from 5:00pm until promptly at 7:00pm.

Rachel wrote:

For people unfamiliar with the tradition, typically, come in, greet the family, and then sit quietly.  This is a quiet, almost meditative space (it's not meditation.)  If the family starts to talk to you about Liam, feel free to share with them your memories.

...but I have to disagree, since I'm her husband:  I hope you will find us NOT sitting quietly.  I hope you will find us eating and loughing loudly - just as Liam would like.  

Also, please don't come with the intention to be sad or to cry on my shoulder.  The purpose of the shiv`ah is for people to support the family, not to be supported BY the family.  

Lastly but most importantly:  do NOT, let me repeat that, do NOT, hug me.

Where to come to:  here