Dear Person In Charge...A Few Questions

Dear god or goddess or person-in charge,

       While I know that you are quite busy orchestrating many world and extraterrestrial happenings and spending time being serenaded by choirs of angels and cherubim, I have several pressing questions and concerns that I need to pass on.  I do not mean to be presumptuous because I am told that you know everything and can do anything.   I am sure you had a hand in having George W. Bush being "kind of elected" as President of the U.S. by the Supreme Court instead of by the popular vote as is custom.  Only you could have pulled that one off!

       So, anyway, I was awake at 3 a.m. thinking about these heavy questions.  I am sure that you were awake too because you never sleep and always listen to my secret thought (hopefully, there are some that don't make it onto your celestial radar).  So here are my questions:

        Knowing that you know and see all, why did you allow my son to nearly drown and be trapped underwater for 25 minutes when he was 12 years old.  I am sure you know that could kill someone or pretty well screw up their brain and body.  Did you not intervene to teach me something?  Did you want to prove to me that we are only given what we can handle? (Well, sir or madam, all I can handle at my age is a beer on the sun deck.)  Did you not save him because he needed to be punished? (Hadn't reached puberty yet, so punished for what?)  After all, you could have chosen a murderer or rapist?  Why pick on an innocent, beautiful child?  Perhaps you were busy with some event and this situation slipped pass you?  I'd like to know.

       Also a lot of people believe that miracles happen.  What do I have to do to have you work your magic?  An all powerful person who raised some guy in rags from the dead could certainly heal a brain injury.  I have always been interested in this miracle thing and I would like to share my observation with you.  People have been cured of cancer, tumors, inability to walk (all those crutches and canes hanging at shrines) by a miracle.  So, you do pay attention...I will not use the word placebo effect.  I have been searching for a miracle where some amputee who gave his soul for his country and for freedom re-grew an arm or leg or both.  These guys are certainly people of faith.  Or I have yet to see a miracle where someone lost an eye had one grow back by miraculous intervention.  After praying to your virgins to intercede for me, I'm still waiting and it's been over 12 years.  Sometime you try a good guy's patience!  And please address the lost limbs question; it's been really bugging me.

         Also, I'd like to know why bad stuff happens to good people?  I know that you can turn this trend around.  Why can't all kids be born healthy?  Why can't all people have what they need to live life?  Why can't there be  enough resources and help for all people?  Why don't serial murderers, rapists and socio-paths just get zapped by a thunderbolt?   You know, justice and equality for all.  I would like an answer as an unwilling participant in this creation.  I hope this mess was not simply ascribable to Eve, the snake and the apple? Remember it wasn't us guys (Adam and I) that took a bite of the damned apple.

    

     You know, because you can read my mind, that I think that life should not be so hard for us good guys.  You know that I believe that little children shouldn't be suffering and dying.  You know that I believe that good people should be rewarded (by the gift of 100 virgins) and that bad ones should simply be stoned.  It's pretty clear what I stand for.  Do you think we could trade places for a few days?  I think it would make a difference in both of our lives, or so I hope.

        Please respond as soon as possible; e-mail would be ok, in person would be better!  You know where I live.

Your friend,

Phil (Adam's dad)

"Extreme Caregiving" . . . defining the undefinable or not

       Various bloggers, as well as yours truly, have recently bandied about the words "extreme caregiving"   (a word which my precious spell checker refuses to acknowledge).  We use the term to differentiate ourselves  as parents of severely disabled kids from those who provide care for typical kids or typical elderly parents, whatever typical connotes.  The words are difficult to define and perhaps more difficult for others to comprehend.
       Certainly, "extreme caregiving" cannot be defined how many hours are committed daily, nor by how many years are committed over a life time.  Could it be defined by the severity of need of the recipient or by the numerous medical complications.  Perhaps, the level of assistance provided, the amount and nature of resources required or the depth of abandonment by family and friends?  Or could the ability to take a break, a vacation, go on a shopping spree or sleep a full night without disruption be factors that could be calculated in determining "extreme caregiving".  Could it be defined by the depth of love, by the support or by the absence of a spouse or by some religious overtone which places our care for our severely disabled in the realm of the extreme.  None of these or all of these?
       Once again, I find myself with many questions and an inability to answer,  The closest that I could come to a possible definition is:
        "A master in the art of living draws no sharp distinction between his work and his play; his labor and his leisure; his education and his recreation.  He hardly knows which is which.  He simply pursues his vision of excellence through whatever he is doing, and leaves to others to determine whether he is working or playing.  To himself, he always appears to be doing both."  Francois Rene Auguste Chateaubriand (1768-1848)
       Extreme need gives us (male/female ... excusing the 18th century paradigm) the opportunity to unite our play and our work into a definition of extreme caregiving.  Maybe the words should be left undefined, but then how would the world understand?

The Inferno Redux...three new circles

              The inferno is a place of fire, a place of suffering on earth.  Suffering is not bad, certainly suffering is not good...it simply is what it is in the moment.  People can stoically embrace suffering, reject and deny it, find a deeply religious significance in it, pray that it passes suddenly or conclude that it is a meaningless construct to divert our attention from what is real and what is possible.

       I blog a bit and follow numerous fellow cyberspace friends'
blogs, I lurk on chat groups for parents of the disabled and comment when useful, I read much online.  Despite our levity, our moments of being morose, our sense of compassion and unity, we all suffer in a way distinct from the common person, the "normal" ones.

       What I have learned or what my reality has created, is the belief that there are three circles of suffering in a place between heaven and hell, a limbo of sorts.  I call it a limbo because both the children with disability and their parents exist in a place between the vision of joy and the view of dread...a place between living and dying.

       To me, there appear to be three layers in this inferno (perhaps more), types of human conditions in which parents and children of the disabled reside.

       First, and perhaps the  optimum circle, includes parents with severely disabled children who have the resources to thrive.  Often they blog, they exude hope, they see humor in a humorless world.  Often they are able to care for their children at home with some assistance and above all, they are able to mobilize the resources to explore all the alternative therapies which benefit the children.  In most cases, their family unit is stable, although they also suffer from the disappearing friends and family syndrome.  They reside in the circle closest to Paradiso.
       Second, distant from the former circle, exist a group of parents of severely disabled children who can't maintain the level of sanity provided by blogging.  They survive in the chat groups and support groups for parents of disabled children.  They have few resources, many times without a significant other (usually because the Man can't cope), and cannot speak strongly enough to navigate the support systems.  They are allotted few hours of respite or assistance, beg on the support groups for an extra mic key set or trach setup, are denied school and health services without the ability or knowledge to appeal.  They have no access to alternative therapies and constantly plead for even the most minuscule of resources.  They live on the verge, give more than their all, and relentlessly love their children.  They exist in the belly of limbo.
         Third, and farthest removed from Paradiso and teetering on the edge of Inferno, are parents of disabled kids who simply could not do it.   You find them neither blogging nor on chat groups.  They cannot even support themselves let alone their children.  They have nothing: no resources, no energy, battered by life, little education and do not survive.  They place their children in institutions, in pediatric nursing homes or other care facilities.  The energy to visit their children diminishes over time, they are devoid of the lust for life.  Children in these situations fail to survive. "Abandon all hope, ye who enter here."
         My hearts bleeds for this group, my heart bleeds for the second circle.  It is only the first circle that the universe has provided what is needed.  I often wonder why society and humanity cannot look at those who have been totally beaten down by life and why humanity cannot provide an equal opportunity to parents and kids at each level of suffering.  We bailout banks and insurance companies, subsidize energy conglomerates and pay unconscionable salaries to government bureaucrats, yet deny (as in Massachusetts) dental care for severely disabled adults.
         I am thankful that I live in the first circle, I love to philosophize about the nature of disability, alternative treatments, provide verbal support to fellow parents of disabled kids.  There is a bigger issue, perhaps as the existentialist, Albert Camus, stated : "I refuse to live in a world where little children suffer and die each day."  That's my problem; I have no solution.

HAPPY BIRTHDAY, ADAM !!!!!!!! January 14, 2011

     Well, my son, today or tomorrow (depending on which part of the world you're in) you are 25 years old!!  Actually, it's 12 1/2 years  since that day that you were under water for 25 minutes.  So today is a celebration of your birth and your re-birth.  You were a hockey star and now you are a rehab star...always, always each moment of each day working at getting better, at healing and at enjoying life.  Your eyes sparkle, your smile melts the coldest of hearts and your spirit is indomitable.  You have never given up on anything nor will you ever concede to adversity in the future.  So this blog post celebrates your first quarter of a century and allows the world to see the gifts that we are giving you this year.  I hope you like, or at least tolerate these presents.

Those were the days!

Yup, he stopped the puck, as usual!

 
    Just to remind you, that we were all young once, a family of four circa 1989, a AAA goalie for the Springfield Jr, Indians in the mid nineties. Something changed, fate moved us all in a new direction.  You knew long ago that life altering events were evolving and we as a family would evolve to a higher plane of living, loving and understanding with you.  We all grow on a daily basis and learn about the intimate nature of reality, life and people.  This learning is not always a pleasant experience, but always enlightening.  So here are our gifts to you on this day.

ABR targeting the pelvic floor

   The remainder of this post contains adolescent humor of which I would not deprive my son.  If adolescence and it's innate perversity offends you, this might be a good place to stop reading.
    Gift one:  this is not what it appears, then nothing really is.  We have learned that ABR helps to strengthen your core, normalize your structure, move you from here to mobility and function.  Sorry, but you're stuck with this therapy for 4-5 hours a day.  By the way, we are working to normalize your pelvic floor, the exercise has nothing to do with scatological stuff, so just relax and enjoy.  This is only one of four or five daily prescriptions.  Most of the other exercise allow you to enjoy pretty blond chicks on TV.

ABR machines, bladders, wrapping and Ollie

       I know, if the day time manual ABR isn't annoying enough, we strap you with inflating bladders, foam, wraps and hook you up to two machines for 10 night hours to help with the process of eliminating that damned spasticity.  Actually, it also strengthens your lungs and digestive system.  So you have Ollie and your TV until you pass into restful slumber.  Remember we are doing these awful things to you because we love you, not to annoy you.

One cold laser point to release Moro Reflex

       As if the indignity of ABR isn't enough, we also give you the gift of 45 minutes of daily cold laser to integrate the primitive reflexes which all popped up to the surface during the accident.  The cold laser helps to extinguish and integrate those no longer useful reflexes which hinder healing.  Please note that the picture is intended to preserve your modesty and my aging.  It does relax you and  you can watch TV unless you turn to look at me with a scowl.

      I could also write pages on all the other indignities to which we subject you: sucky pureed meals, non-alcoholic drinks, yucky supplements and unmentionable procedures.  We do this to you because we love you...really!!!

       Now for the real gifts:  You love nothing more than movies with scantily dressed blonds. And yes, I know that only blonds need apply.  What upstanding handsome 25 year old wouldn't want one of these!  So here you are:

Your guess is as good as mine

      And finally, you laugh...all the time.  Some time you smile at people, some time you laugh at TV shows or your favorite movies, usually Jim Carrey or Adam Sandler.  Some times you laugh at your favorite movies like Home Alone or the Mighty Ducks.  But, Adam, I know there is one time that you howl with the heartiest of laughs...there is nothing which makes you laugh so irreverently as when you see very fat people squeezed into tight, polyester clothes.  This laughter is embarrassing to me, but I allow it because I know that you are my son, so alike me. Your mom wouldn't let me post the pictures I wanted to, so I showed them to you privately.  So here is my gift to you (against my better, but poor judgement): your all time hero...Jim Carrey!!

Adam's all-time hero: Jim Carrey

       Happy birthday, my hero!  While I apologize for all the indignity to which we subject you...it is because we really love you!

Opening Pandora's Box...

       In ancient Greek mythology, Pandora, the first woman on earth, was given a jar which was not to be opened under any circumstance.   Well, Pandora, much like the biblical Eve who ate the forbidden fruit provided by the friendly snake, opened the jar which supposedly released all the types of evil on the world, except Hope which was still trapped inside.  Could this be the explanation why most bloggers are women who do what they aren't supposed to and challenge mankind to think and reflect?  Regardless of this sexist innuendo, I am ready to open Pandora's mythical box or perhaps take a bite out of the forbidden fruit.

       The opening of the jar releases my greatest fear and perhaps the greatest fear of all parents of quite severely disabled children:  when I pass on, check out, am gone, sealed in a water-tight coffin or reduced to ashes with my urn placed on someones mantle, who will take the same dedicated, loving care of my child.  Given our belief in caring full time for our son, in our home, and given the ever growing repertoire of therapies, the probably of Adam outliving us all is extremely high.  Despite the severity of his injuries, his need for 24 hour a day care and his aesthetically imperfect hands and feet, all body systems are pretty operational and his spiritual system optimal.  With loving care, his life expectancy far surpasses ours.

       Of course, our daughter is charged with the supervision and execution of his care plan and well-being when we are dust.  Of course, he will be cared for in our home.  Of course, I can never guarantee the level of dedication and commitment that parents provide.  So this is the fear  which has erupted from the opened jar.  Unfortunately, we all have to take a bite out of that damn apple and release this plague,.

       One not so amazing observation is that no one has ever said, "If something ever happened to you and Sharon, we would be honored to step in and care for Adam, for however long it takes."  The issue is not money for his care, in our case, as we have taken care of that; the issue is compassionate, consistent, loving care.  I often ask where is that saint that will step up to the plate and make an offering...probably won't happen!

        So, all you can do is live in the very present moment, give your utmost and trust in the universe to provide as it always has.  Opening the jar, biting the fruit...you can never really stuff that dread back into the jar or make believe like you haven't tasted the apple.  At least, Pandora didn't let hope escape!

Angels and Demons, Gods and Goddesses....A Rant and A Resolution

       It is rather inconceivable that in the course of our human evolution on planet earth,  disability has yet to be accepted for what its is...simply a human accident.  This blog is my crude attempt to frame my beliefs about the nature of disability, severe disability and handicap.  It contains my sincere beliefs about my son and about others like him.  This is not the work of a theologian,  ethicist or an historical scholar.  It is a reflection about the nature of the disabled's inability to meet the expectations of other people and society in general.  While the thinking may appear to be arrogant, it is written humbly.  I am constantly grounded by the words of House, M.D (my TV mentor and televangelist).; that if my DNA were off by a percentage point, I would be a dolphin.
       From early time and into the present day, the severely disabled are regarded as demons by some, and angels by others.  Either belief  deprives the disabled person of their genuine humanity and denies them the requisite efforts at maximizing their potential.  All handicapping conditions are the result of accident (by way of fate or karmic choice); a genetic accident, a birth accident, a bio-chemical accident or a real life accident which deprives a human of some perceived ability.  Not the way it's supposed to be, but the reality of what is. Accidents are simply accidents.  They are not punishments from gods, nor gifts from gods...gods and goddesses have no role in accidents.
        Throughout the ages, it has been  quite easy to demonize the disabled; they have no voice.  In early Grecian times, the law dictated that a newborn was not a person until after seven days of birth which legitimized  the discarding and genocide of infants.  Nazi Germany was led to believe that the disabled were a "life unworthy of life". The trends continued in modern time with the sterilization of the disabled and "feeble" so as to interrupt this troubling and increasing  genetic trend.  Institutionalization was the more recent standard bearer of the belief in demonization..keep "them" away from the general society.  The history of man has been littered with demonization of people for a disturbing variety of reasons.
       Likewise, an equally troubling trend has been the deification of the severely disabled.  This is an equally heinous trend.  The "pillow angel", the "victim soul", the living examples of the suffering christ are characterizations affixed to some.  Perhaps, it is a feeble attempt to make relevant the experience of suffering; perhaps, it is a sordid attempt to provide only custodial care and rationalize a lack of intense and life long effort at maximizing potential through whatever therapies work; or, perhaps, it is an attempt by people to justify their care-taking because they are minding the suffering of those who are more godlike that the rest of society.  The extreme of deification paves the path to  the creation of cults around the "victim souls" to pay homage to a belief that they are direct intercessors between our petty needs and the above.
       In either extreme case of the angels and demons syndrome, I am again recalling the words of House:  "Everyone lies..."  Everyone creates a story to justify the marginalization of disability.  These stories often provide excuse for the minimal efforts and services society provides.
       I suppose that there exists a middle ground: indifference.  When one espouses a belief of "no difference", you negate the reality of a person's existence.  I am unsure which of these fates is is worse: angels, demons, or nothing?
       Perhaps truth lies in the simple personhood of the disabled.  They are people who have encountered an accident, by fate or choice.  Our response has to be to provide loving care at a level which will maximize their being and their potential, by doing whatever it takes.  Often we, as individuals or a society do not do whatever it takes because our belief in either demonization or deification or sheer indifference precludes those needed efforts and even justifies this absence of effort.
       The disabled are human beings, nothing more and nothing less.  They have an absolute right to bodily integrity and a respect of their rights as humans.  They are different only in the level of care and love required by us.  Our children and adults, no matter how severely impaired, can intuit and feel the level of care, expectation and effort provided by us to them.  Without this active attempt at healing on an ongoing basis, people die.  The institutionally disabled die because there is an absence of loving care and simple touch.  The severely disabled are really no different than us.  In fact, if I look at my son and if I look at myself in a mirror, I truly wonder who is really impaired.  He always smiles and has a glow in his eyes. while I do not.
       In the intervening moments, my son just coughed a mouthful of lovingly prepared and pureed penne chicken picatta at my freshly cleaned fleece vest.  I'm rethinking my comments on demonization... My New Year Resolution...yes, to care a bit more deeply and generously.  This one I can do!