Ride in memory of Liam

My Spin For Kids campaign. Thank you.

This October, like every year, I will be riding my bike at the Spin For Kids ride.  This campaign is to raise money to enable kids with special needs to attend very expensive [and unaffordable otherwise] summer camps.  Liam used to enjoy these camps.  If you donated to my campaign already, thank you.  If you haven't, please consider doing so.  While I'm riding in memory of Liam, I'm really riding to help other kids, those who still can, enjoy the summer.  And thanks.

(P.S.  If it's a 'ride in memory of Liam' shouldn't I be doing the 50 miles laying on a bed in an ambulance with an oxygen mask?  Just a thought...)

First Anniversary

Today, September 4th, was Liam's first anniversary.  Yes, it has been one year since she gave her last breath.  It might be really extreme, stupid, even inappropriate - if I mention any positive terms with regard to this date.  After all, we're mentioning a loss here.  And we miss her, oh so very much.  But, if we go back one year, we made a decision to stop Liam's suffering.  And, once you make a decision and work together to achieve a goal, and when that goal is achieved, you should have a sense of accomplishment, right? 

In life what we do is help our loved ones live.  That's what we, living creatures, do.  Our instinct as human is to provide to our offspring, to see to their well being.  Even though Liam was with many special needs, this was no different.  What is different is that in the last year of her life, as you all remember, we tried mostly to keep her alive.  But when we made the decision to let her go, what did our mission become?  Well, just that.  To help her die as quickly as possible and with least suffering.  Yes, that was our new goal.  So when we achieved it - when she died - we accomplished our mission, right?  So that was positive, right?  (Because when you accomplish a goal it's always positive, right?) She suffered no more; the burden has been lifted.  Just simple logic of one-plus-one. 
Needless to say, nobody felt any sense of accomplishment.  But, accomplishment aside, Liam did stop suffering (at least we think so....because humanity still doesn't know what's on the other side....if you really leave all your trouble behind).  She got relief - finally.

And now, a year later, there's definitely no sense of accomplishment.  Just the loss.  At the same time, we're a positive family that don't live the loss and grief every day.  Rather, we remember the happy Liam, the good memories.  I will be lying if I said that we only talk about the good times.  We remember the difficult last year of Liam's life very vividly.  Rachel even keeps in touch with the hospital staff.  But that's what positive people do:  they can handle the positive and the less positive all in the same salad bowl.

So that pretty much sums the first year.  It was a difficult year, but not all grief.  And really, the one-year mark makes no difference.  It probably will continue to be a mix of laugh and tears for us.  When I look at Liam's pictures, when I'm editing videos of her, when I write about her here - I laugh and I cry.  And then I laugh again because that's who I am.  It's a bit hard for me to believe that I had such a special person in my life, that she was part of out everyday life.  At the same time, it's hard to believe she's not here any more.  Go figure.


Saints only, please

While we visited the cemetery and walked between the graves, I noticed something interesting.  If you go by what's written on the headstones, only good people are buried there.  "To our beloved, modest mom", one grave said; "My dear and special husband", said another; "To my wife, who was loved by all", said a third; and so on and so forth.  I didn't find any grave that said something like "my greedy husband" or "our abusive mother" or "our son who was shot while robbing a bank".  Nope, this cemetery is only for perfect people.  (I would imagine that even a Jewish upper class has some non-perfect people.)  Which raises the questions:  where do they bury the less-than-perfect and what do they write on their headstones?  Or, do they all turn to saints when they die?  Hmm.....
One  sleazy wonderful car saleswomen

Remember the last time you bought a car, especially a used one?  It's almost always a somewhat stressful experience.  The salesman, either at a business or if private, always glorifies the car.  You always have doubts. And you often feel exploited.  And when you try to sell your own car to an individual, chances are you too are not telling the entire story to the buyer.

Well, last week (coincidentally or not around Liam's anniversary), we sold the minivan that carried her.  This minivan was modified to carry a wheelchair.  It has a lowered floor, a power ramp, and a few other necessary accessories to allow for the mobility of a disabled person.  I'm telling all that to explain that the market for such a vehicle is very limited.  Combined with the weak economy, it didn't look very hopeful for us.  Indeed, the van was listed in several places and we hardly got any bites.  So when we got a phone call from this lady (Meggie), we got pretty excited. 

Now usually, when it comes to cars in our household, I'm the buyer, the seller, and the mechanic.  When it comes to buying/selling, I'm ready for the battle (that doesn't mean I like it any - only that I become very militant about it).  But when Meggie called, I left it all in Rachel's hands.  I mean, I was still involved with all the technical stuff (you don't want Rachel to handle that, do you???), but otherwise I checked myself out - until I was asked to take part.  (I don't think that golf or the return of football has anything to do with it.  Do you?)  Anyway, Meggie was helping this poor Hispanic family, with a special needs boy and no money, get an accessible van.  She was raising the money.  Don't ask me everything how the deal came about, because I really don't know.  It was all between Meggie, Rachel, and the Fragile Kids Foundation.  I just sat on the sidelines and was happy to do so.

Now, if it was me making the deal, I probably would have been a bit impatient and maybe nervous.  I would talk bolts and nuts and tires and belts - and money, of course.  I would be short and to the point in my answers.  And, I would have probably failed the deal with this approach.  Call it business disability (since we're talking about disabilities, I want a piece of the pie to).

Well, not Rachel.  The conversations between Meggie and her were all but about the technical stuff.  It was mostly about, well, what ladies from the "disability world" are often talk about:  about the actual kids and their families.  Needless to say, all the conversations were done in a Rachel-patient-and-pleasant-and-understanding style.  Not in the pushy style I would have conducted this business.

First the family came to see the van - with a translator.  While we worried about every paint scratch and broken tail light, they couldn't have cared less.  You could see how excited they were about the van.  About the possibilities and freedom and safety it would provide them.  This is a very poor family.  To have a kid with severe disabilities on top of that is really heartbreaking.  I don't know how they feel about their tough luck, but it seems that Johnathon, the boy, doesn't feel sorry for himself - much like Liam.  He's smart and funny and very cute.  We all went for a short "test drive" in the neighborhood.  They were ecstatic. 

When the deal was nearly sealed Rachel send this note around:

The time has come for us to part from our big white minivan. Truth be told i am having mixed emotions about it. Liam and I spent a lot of time and miles in there. And occasionally she just liked to sit inside and listen to the radio.
The exciting news is that a really cool family, with some great kids are going to receive the minivan. The little boy's name is Jonathon, he is 7 and has some crazy awful condition that I can't remember the name of. His sister is 11 and reminds me a lot of Meitav. The family is Hispanic and dad has been out of work for 2 years, but works as a house painter when he gets jobs.
People have been donating $ to allow them to get this van, which will be a safe way to allow Jonathon to travel with his power chair. I have rotated the tires and filled the tank with gasoline and if all goes well we will transfer ownership this Sunday.

Sooooo. Why am I telling you this story? The family is on food stamps and struggles to pay rent. Wouldn't it be fun to help them with the cost of gas? If we each bought 2 gallons that would be about $7.00 and we could give them an awesome gas card! So I am asking if you feel inclined to help out and buy a gallon or 10. I will be collecting $ thru Saturday evening or if you prefer you can by a gas card for anywhere and drop if off by Sunday at 9:00 am.
Thank you all.

Wasn't that smart and thoughtful of her?  Within a short while our wonderful community responded with donations.  So there it is, at the end, everybody won:

• People who donated money to buy the car (through Meggie).
• Meggie herself, who helped a family who otherwise wouldn't have been able to get such car in this lifetime.
• We finally sold the van.
• The recipient family.
• Johnathon, the boy, who can now travel safely with his family in his own wheelchair.

On the day they came to pick it up, the whole ownership transfer was done in such a good and pleasant atmosphere.  There was no price haggling, no hiding of technical "ailments" and stuff.  Instead, there was information sharing:  how to operate the ramp, how to strap the wheelchair safely, how to make it safe specifically for Johnathon (since he is a different size of Liam and rides a different wheelchair), etc., etc., etc.  In the process, I was almost a dad of a special need child myself - all over again.  And I realized how much I miss it.  Does it sound sane to you?

But the reward in seeing the look in their eyes when they got in the car and drove away was - priceless.  In the most expensive meaning of the word.  Being a part of it all was such a privilege (glancing quickly at the check too...)

And now, it's time to move on.  Rachel will now inherit my toolbox, filter rings, ranches.  And I will do what I do best (and if you guessed beer and football you don't get any credit.  I've been giving it away throughout the blog).  



But, it's just a car, right?

The time of selling the car was interesting in itself - in the weekend just before her anniversary.  Before you make anything out of it, let me assure you:  it was a pure coincidence.  Has no significance whatsoever.  What was significant, however, was the farewell from the van.  Huh?  Farewell you said?  From a bunch of bolts and metal and rubber and what glues them altogether?  Yup, that's exactly what I said.  Here's why:

• This van was part of us for 12 years for the good and the bad.  We took vacations in it; we were singing out-loud while driving - both girls giggling; and we also had night drives to the ER; and puking; and Eema-I'm-hungry; and so many other memories.
• It's yet another farewell-ing to Liam.  Every piece of equipment we get rid of leaves a little hole in our lives (and sometimes a big space in the house).  But it's also a part of a new beginning.  Many people asked us in this past year if we "returned to our routine" or if we "recovered".  And how many times did I have to explain over and over again that there was no routine and there's no recovery.  What there is is a new beginning.  A new beginning with strong ties to the past.  Usually a new beginning is a good thing.  For us it's not that clear cut.  A new beginning means leaving the past behind.  When it comes to a piece of furniture and even a car (with laugh and puke residues) it's a fact that you have to recognize and move on.  But when it comes to a loss, let alone your own daughter, a part of you - it's much tougher. 

(But, before we get too sentimental, let's just remember that if Liam was still here, we would have getting rid of this piece of junk anyway.  It was time for us for a new van.  This does not take away anything from what the other family got.  Our piece of junk was a treasure for them.  If they maintain it the way I did, it will last them anther 100K miles.)

It's just interesting that this lifeless piece of junk was able to generate so many emotions with so many people:  us over the years and now the new family who owns it.  It's interesting because it's just a car, right?


So we know what to do about sharing death, right?

In response to my "Death" post, our good friend Joy, who lost a also daughter, wrote me this (among others):

To Asher, I say, “Break the taboos!!!”  When folks ask, I always say, “Two kids!”  If they know Rebekah and press for more information, I give them what they are asking for.  In fact, you might say that I am somewhat militant about acknowledging my daughter Rachel.  Just this morning I filled out information on a Dekalb County Jury summons and said I had two kids.  So, Asher, go for it; I know you have a militant spirit too!

What an excellent letter!  To my credit, I was gonna do just that anyway.  Really.  Because that's who I am.  I can't keep things inside.  (Thank goodness the Israeli army days are over...)  I like to be free.  And freedom means to lay it all out.  Unfortunately, and despite Joy's kind and wise words, it's not that simple in my world.  I too, can be militant about it.  Military I know well.  I know how to handle hand grenades and mines and RPG's and all that ugly "goodies" I'm happy not to be part of any more.  I guess that if I'm in a non-work related social situation I can be militant, blunt about it.  But in the office it's still a different story.  I was thinking just about that as a bunch of us had lunch together recently.  And I was thinking "what will happen if right now someone asks me about my kids and I would say two, one 14 years old; the other passed away...etc., etc."  That would be a hand grenade in the middle of the table any way you cut it. 
I'm lucky that I'm currently working at a place that I think would be very understanding if I throw such a bombshell (whatever "very understanding" really means....who the hell can really understand what it means to lose your daughter - and in the most painful way?)  But, why throw a bombshell in the first place?  I prefer to stay patient and see if I can somehow make it infiltrate slowly. Sneak behind the enemy lines.  I'm going for a guerrilla war rather than heavy artillery.


Platelets

I'm a regular platelets donor.  Every 2-3 weeks they stick a big needle in my arm and I'm hooked to the apheresis machine for 2 hours.  No biggie.  So when, during my last visit, they asked me about scheduling the next one, September 4th was a natural choice.  (Maybe this is where I should mention that I'm not an easy stick.  They have hard time finding my vein.  And while they search for blood, I'm in pain.  If you read the old blog, you'd see that Liam was very much the same.)  Well, I didn't choose this day to feel Liam's suffering.  I chose this date because it was time for me to donate anyway and because cancer patients really need my donation.  And it just seemed like the right thing to do on this day.  To give life to somebody else.

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So there, that's how I spent Liam's anniversary.  I visited her grave, I thought about her, I exchanged notes about her, I wrote about her life and about her death and about her car which now continues to help somebody with special needs to get around, and I donated platelets.  Oh, and I watched some sports and I drank some good beer - naturally.  I consider this as a pretty good anniversary.  Liam would have liked it.