Adam's New Toys . . .

    Everybody needs toys...big boys, little boys, boy doggies and boy fishies.  Dad has toys: big screen tv's, Wii, laptops, tablets, smart phones.  Ollie has his dead skunk, dead moose and a variety of other unstuffed animals with squeekers.  My boy koi (not sure if koi has a plural and I'm to lazy to research) have new plants and summer foods.
     Adam also has more toys than god.  He has a bigger flat screen, home theater system. loads of Jim Carrey, Adam Sandler, and Mighty Ducks DVD's, also all sorts of media players, two ABR machines, nebulizers, suction machines, wheelchairs, bath lifts, and on and on.  Certainly more stuff than god, but she probably doesn't need all this stuff, nor would she enjoy it.
       Well, we just got another cool toy on the heels of a week of respiratory distress...very distressing to mom and dad.  Adam collects mucous (yeah, that word!) in his throat and when he's tired or whatever, it stays there and migrates into his upper airways which in turns makes him feel like he can't breathe and then he hyperventilates.  So, his doctor says this makes sense.  If you almost drowned (25 minutes under water without breathing) and if you couldn't breathe well because your airways were full of junk, you would hyperventilate also (duh, she says).  The good news, she says, is that his heart won't burst from the strain, but that he probably will pass out.  After passing out, his CO2 will increase and he will come to....this is all very consoling to a set of PTSD'd parents.
        Not an acceptable scenario, so something needs to be fixed!!

       So, here is the new toy...The Vest: An Airway Clearance Device.  Given the fact that mucous is good, at least so I'm told and given the fact that retained mucous and secretions in the airways isn't good, there is an answer which is neither invasive nor time consuming.  A pulsing air generator, two hoses and a Vest.  Simple.  Pressure is created in the vest which then oscillates up to 25 times per second...no special breathing, nothing else.  And, you only need to do the therapy twice a day for 10 minutes at a time.  So. in a nutshell, it loosens old, sticky secretions, moves them up and out which produces an irritation and a good healthy cough.

So far, we have a boy with clear lungs, clear throat and mucous going in the right direction (down the throat to lubricate the olde bowel).

       I like the new toy.  Adam tolerates the new toy.  He breathes more deeply and more clearly all day long.  Hopefully, this will allow us to get rid of the nebulizer with the albuterol and symbicort.  My boy, again, all natural, organic and no drugs!!!  Love these toys and only $10,000.00.  Thank you Mr. Insurance Company.  Someone is making a hell of an effing profit on these kids.

       I'm not getting a promotional kick-back!!!  Just letting ya know!

       Also, he didn't get the pink vest!

The guy is an idiot...but you get the point..
"Cough it up, kid!"

Happy, Happy Birthday Sharon....

   
       June 3, 2011 and you are 39 once again!  Your secret is safe with me!!!  It's a great day to celebrate the birth of a very, very special person.  While you weren't born in stable with adoring baby animals, angels and wise men around who were guided by a star, your effect on the people whose life you have touched is remarkably similar.  You are wife, mother, ABR therapist, counselor, consoler of a periodically forlorn daughter, mainstay of a somewhat neurotic husband, unconditional care giver to a disabled son.  You also are a homemaker for a chihuahua who is more neurotic than your husband and a poochon who gives the word "dependent" new meaning.  I could make a long list, but later.....first a song which says it all on your birthday.  It's Iz and  "Over the Rainbow/It's a Wonderful World!"  Great lullaby to put your kids to sleep....among other things.

       Well, let me say that it's difficult to sing your praises on your birthday and Mother's Day which are less than 30 days apart.  I think that you could have planned better.  This is a drain on my limited reservoir of emotion and my wallet.  But what the hell, we have learned to take life together as it comes to us.  For 30 years we have been partners and soul mates on one f....ing incredible journey.  No smooth sailing by any means, but we have learned to depend on each other's wisdom.

       Together, we have spawned two beautiful children: an accomplished daughter and a son who is in the process of accomplishing.  I wish he would hurry up, don't you?  On the other hand, I wish she would hurry up too.  Notice how you have to fill in the blanks on these statements of our dreams?  Your role in their development is inexplicable and short of miraculous.  This selfless, unconditional love is what I admire most about you.  I probably fall short, but you know woman who are saints are often attracted to men who are sinners.  I am happy to have you along on this ride.

       Ollie and Chloe are also happy to have you along on their ride.  They, however, are in the driver's seat.  Finicky, demanding, neurotic, periodically incontinent (runs in the family), always hungry for a gourmet meal....and you cater to their every whim even to the point of allowing Chloe to sleep snoring in your ear all night.  Now, the ear plugs make sense.  My wife, for whom "no" is not a word in her vocabulary, is the ultimate care taker...even of the beasts, even of the children.

        You have accomplished a lot in .... years.  Completed several graduate degrees, worked as a teacher and counselor in education, continue to be great mother when time would dictate that retirement is sitting on the deck with a brew, cleaner,  carer of a handicapped kid, author of a book, learning the piano (again), and learning to be skilled in the fine art of blowing off indifferent people.  (The latter I taught you, but probably will not be given the credit.)  So much is such a short period of time, only....years.

        Anyways, it's your birthday to enjoy, but that doesn't mean that you get the day off...there are no days off in this house.  It does means that you get to know that you are loved, appreciated and admired by adults, children and beasts.  Happy, happy ...th birthday.  I am looking forward to our 30th anniversary (again)!  Oh, by the way, in our next lifetime in the world of normality, keep a reasonable spread between your birthday and Mother's Day.

And, Just Who Would Care? And, Just What Has Really Changed?

         "Indifference elicits no response. Indifference is not a response. Indifference is not a beginning; it is an end. And, therefore, indifference is always the friend of the enemy, for it benefits the aggressor - never his victim, whose pain is magnified when he or she feels forgotten."

- Elie Wiesel

Elie Wiesel

       I have been plagued and obsessed with the notion of human indifference for some weeks, to the point of losing a sense of moral compass.  When I see my disabled child treated with indifference by those who should evidence a modicum of care, I am filled with rage.  When I see people who believe that a short phone call on a sporadic basis to check on "how things are going" without a physical presence that demonstrates clear evidence of caring, I am filled with rage.  When I face people who refuse to respond to simple requests for kindness or help, I am filled with rage.  These actions, singly or collectively, reflect that depraved indifference which reduces the other to nothingness, to the mere status of an object.  It produces a visible pain which is elicited by an invisible response from the other.  We are all lessened by every single act of indifference.

       There is a commonly held belief that society has evolved and changed for the better, that there is an increased sense of acceptance and inclusion of diversity.  After all, women are now allowed to vote and guaranteed equal pay and access to reproductive options,  blacks are no longer restricted and oppressed by white supremacists, gays and lesbians are free be open and allowed the same rights as all, and the disabled have access to services which were hitherto relegated to the warehouses and boiler rooms in the bowels of society.  So much has changed and evolved, but has it really?  All these changes were changes prescribed by law and enforced by criminal and civil penalties.  Change was the result of advocacy, demonstration, protest and conflict as people battled for acknowledgement of basic human rights and entitlements.  Change was the result of good hearts forcefully united against discrimination and oppression.  But what changed except the LAW? What price was paid to change the LAW?

       I still see an abject refusal to embrace women and their right to choose, a refusal to embrace gays and lesbians as equals in a heterosexist world, a refusal to embrace minorities as friends and neighbors, a refusal to help immigrants integrate into our world, a refusal to warmly and compassionately enjoin the severely disabled in our lives and activities.  People of good heart do embrace, include and welcome people without respect to difference.  People of bad heart follow the letter of the law.  There is no societal and familial change without the heart open.  I have seen little change in the heart of man and an abundance of legislation.  Where is the real change?  While slurs are less overtly in evidence, while services for the handicapped are readily and reluctantly available, while fundamentalist religion poisons the rights of humanity to choose on issues dealing with human sexuality and reproductive choice, while the likes of Peter Singer echo the maladies of some "legitimated" contemporary ethics...what has changed?  Has the pool of people of good heart enlarged?

        As we become more indifferent we lose the trait that makes us human – compassion. And as Edmund Burke warned, “The only thing necessary for the triumph of evil is for good men to do nothing.”   I am so reminded of Paddy Chayevsky's screen play, "Network", as Howard Beale proclaims over and over, "I'm mad and hell and I'm not going to take it anymore..."   

Howard Beale (Peter Finch) delivering his "mad  as
hell" speech in "Network"

       When I view my world and my son's world, I am filled with rage.  I do know that rage does not produce change.  When I view our worlds, others often impart to me the need to forgive the indifference and shortcomings of others.  Forgiveness, I believe, does not produce change.  Forgiveness seems to be a construct that allows the other, without acknowledgement of wrong or apology or change, to continue their behavior and allows the aggrieved to move on by repressing the rage.  Slow breathing and meditation does not produce change.

      I would rather choose my rage than opt for human indifference.  I would rather have no friends than accept those who are indifferent.  I choose not to forgive that which is unforgivable.  If you treat my son with indifference, if you assume that he is less than a full person, if you turn the other way because you are uncomfortable, I am filled with rage.  And why should it be otherwise?  You have taken beauty and purity and made it "no difference"...as if he did not exist.  So people still tell me times have changed?  Really?

       And what produces the change I desire?  Very little has a long enduring effect on the minds and hearts of people who are closed.  My inability to effect that change fills me with rage....this can't go on because rage poisons the body and soul.  It immobilizes you as an agent of human difference and engagement.  How do you move on?  There are few choices.

       I believe that it is vital to confront every instance of indifference that you encounter with a calm, deliberate, pointed statement of how this behavior effects and produces an unseen diminution of the full humanity of the person.  I believe that a clear explanation must be given of what our children need to be embraced and warmly accepted by that person, that friend or that relative.  I believe that if a person accepts and opens his heart to having been  indifferent to my son or others, then an apology must be given which recognizes that indifference, the effects on the victim, and a resolution for change.  Forgiveness  is always the function of a genuine apology. (On Apology by Aaron Lazare is one of the most influential books I have read on this topic.)

       If this approach fails, and it often will, there is no choice but to walk away. The guilt and shame of the indifferent who are so confronted is often very short-lived and allows them a "story" which they can use to walk away first.  There is no room in my son's life for either my rage at others' indifference or shame, or the negative energy that those indifferent others bring into his life.  I will never allow him to be of "no difference."  Both need to be excised with direct kindness and bold confrontation.  The failure of kind confrontation must be met with a sharp scalpel which excises the tumor and the cancer which can kill us both. 

Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction.  Elie Wiesel 

Never again...

    

Coming Attractions......

    Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction.


 Elie Wiesel

My Mom Kicks Ass.....

Dear Mom,

    Today is our 25th Mother's Day together, the 13th since my little accident.  I hope you like the card on the left.  I'm not really sorry for swearing because I learned how to from you.  But, you really do kick ass.  Since my accident (trying to break a world record for being under water without breathing; I only lasted 25 minutes), I really can't speak with words and I can't write a few kind words, and I can't walk up and hug you,so  I have asked dad to channel my mental pictures to you in words so that you can understand how I feel.

       Dad will do his best, but you know him.  He freaks out at every little thing.  Like when I almost drowned...on the ride to the trauma center, he was planning my funeral when you knew everything would be ok...he worries about everything, must be his PTSD or something.  In a way, you are his and my rock.  You can calm each of us down.  I am actually easier to calm down than him.  So I hope he reads my thoughts right and does not screw  things up.  Maybe I'll envision a big beer before he starts writing...that's what I'm doing now...so go to it, dad.

       There are no other mothers like you in the world.  For 12 years you have lovingly taken care of me, no matter what personal price you had to pay.  You keep me clean (top to bottom); you get me ridiculously short haircuts; you feed me somewhat well (not enough ice cream, and screw the mucous problems associated with dairy); you entertain me and do hours of therapy every day.  I love it when you get pissed at dad when he says he's too tired to do laser or ABR and give him all sorts of attitude.  I guess that means that I'm important.  I suppose I also appreciate all the machines and foam and bladders that you strap on me in during the night...every night.  This kid rarely gets a break.  You ought to try and wrap yourself up from stomach to chest with whirling machines and see how well you sleep.  But, I know you believe it's for my good.
       By the way, you do realize that in caring for me it's the only place in the world that you can learn about unconditional love.  In loving me, you know that there is nothing that I can do in return but love you back.  No strings, no games, no ifs!  This learning is why we chose to be together in this life.  Those people who view me as "invisible" provide a stark contrast to that notion of unconditional love...that is why they are around, to provide a contrast, so that you know!  Enough of the heavy shit!

       I also appreciate how meticulous (dad's interpretation) you are with all my supplements and stuff.  They taste like crap by the way.  I put up with it because I know you do it because you love me.  You know, if we left this stuff up to dad, I'd smell and have long hair and have a beard and look like Jesus (quite cool).  On second thought,  a bad idea!

       But that's the silly stuff.  I know that you believe that I will be much, much better.  You know, believing is much more powerful than that hope and faith stuff.  Belief is knowing...hope and faith is like playing roulette.     You also believe that I am working hard while many people see me as just laying there with a shit-eating smile...you see beyond the smile and into the eyes...the windows to my soul.

       You know that before time, I chose you to be my mother for a very special reason.  I knew something would happen to me which would change my life and I knew that you would be there...always.  There are very few people that I can count on in that way.  You never waiver in your belief in me despite the periodic crankiness I experience....I know it's not directed at me, just that you're really tired, but never impatient.  I'm going as fast as I can which is slow.  This has been a good trip, I have no complaints.  Well, only one: when you let Ollie lick the inside of my mouth....dog tongue is quite gross for a priss like me.

       One of the greatest gifts that you give me is not allowing me to be invisible.  It seems to me that relatives, old friends, your old friends, and many people would like me to be in bed in my room with the door closed all of the time....that's where cripples belong, you know the old saying, "out of sight, out of mind"?  They don't like to look at me, they get embarrassed when I laugh inappropriately (actually it's quite appropriate and usually at them), they have a hard time with my stiff body and contracted arms and drool, and my inability to talk back on and on.  You embrace all those little idiosyncrasies about me and show me off to the world.  I know that is because you are proud of me.

        So I hope I covered most of the important stuff.  Remember that long ago I said "Love means being there when you don't have to....".   You have always been there and that what is what's special about you, my mother.  I don't even mind when you leave for a few days to go somewhere to mentally re-group.  Dad takes good care and we have fun...although hygiene has never been his strong point.  It's ok with me!"

        I want you to to know that I love you and that I honor the fact that you chose me to be your son.  We gotta long time together yet....so get used to it. At least I don't have to listen to you yelling my name at hockey games and stuff like that.    Happy mother's day!!

Your best boy,

Adam

PS  Oh, a gift?  Here ya go:  the hat's in the mail!

P.S. I'm making dad get a haircut today (as a M's day gift)