64....I AM

       I am not a fan of birthdays, nor most holidays....must be the grinch gene that was passed on from my ancestors and kept replicating itself in my DNA (hope I'm not passing it on to my progeny).  But I guess that turning 64 today must mean something other than I'm old.   I minimally researched the significance of "64" and found the following list of stuff which should make me quite celebratory.  Wish someone would add my "64" to wiki-pedia.  How about it?

Sixty-four is:

• In some computer programming languages, the size in bits of certain data types
• In chess or draughts, the total number of black (dark) and white (light) squares on the game board
• 64 is the name of the premier Russian chess magazine
• The code for international direct dial calls to New Zealand
• The designation of US Interstate 64, a freeway from Missouri to Virginia
• The designation of U.S. Route 64, a highway from Arizona to North Carolina
• The subject of the Beatles song "When I'm Sixty-Four"
• The registry of the U.S. Navy's aircraft carrier USS Constellation (CV-64)
• The number of Braille characters in the old 6-dot system
• In 8-bit home computers, a common shorthand for the Commodore 64
• In video games, the Nintendo 64 video game console and (historically) the Commodore 64. Since 1996, the number 64 has been an abbreviation or slang for Nintendo 64 (though N64 is more common)
• The maximum number of strokes in any Chinese character
• Number of hexagrams in the I Ching
• Number of sexual positions in the Kama Sutra

                                                      When I'm 64  by the Beatles

• Number of demons in the Dictionnaire Infernal
• Slang term referring to a 1964 Chevrolet Impala, often configured as a lowrider, a popular subject among early-90's gangsta rap
• The number of classical arts listed in many Indian scriptures. They include: singing, dancing, painting, poetry, playing cards, making arguments, making flower garlands, etc.
• The number of the French department Pyrénées-Atlantiques
• The number of crayons in the popular Crayola 64 pack
• Base 64 is used for example with Base64 encoding.
• 64 (dog) is a character in the Donald Duck comics universe.
• Number of codons in the RNA codon table under genetic code.
• Number of golden disks in the myth of the Tower of Hanoi.
• A number referring to Tiananmen Square protests of 1989 (Chinese: 六四事件; literally "Six Four Incident") in Chinese

• Messier object M64, a magnitude 9.0 galaxy in the constellation Coma Berenices, also known as the Black Eye Galaxy.
• The New General Catalogue object NGC 64, a barred spiral galaxy in the constellation Cetus
• The Saros number of the solar eclipse series which began on -832 April 11 and ended on 430 May. The duration of Saros series 64 was 1262.1 years, and it contained 71 solar eclipses.
• The Saros number of the lunar eclipse series which began on -801 August 9 and ended on 714 February. The duration of Saros series 64 was 1514.5 years, and it contained 85 lunar eclipses.
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                                            FOR MATHEMATICIANS ONLY

Sixty-four is the square of 8, the cube of 4, and the sixth power of 2. It is the smallest number with exactly seven divisors. It is the lowest positive power of two that is adjacent to neither a Mersenne prime nor a Fermat prime. 64 is the sum of Euler's totient function for the first fourteen integers. It is also adodecagonal number and a centered triangular number.

Since it is possible to find sequences of 64 consecutive integers such that each inner member shares a factor with either the first or the last member, 64 is an Erdős–Woods number.

In base 10, no integer added up to its own digits yields 64, hence it is a self number.

64 is a superperfect number - a number such that σ(σ(n))=2n.

64 is the index of Graham's number in the rapidly growing sequence 3,27,7625597484987,....

• Phil's "64" today....yeah!  One year from Medicare....

Vacation...Getting Away From Life (A Sharon Dzialo Post)

Phil's Vacation Resort

 I needed a  retreat – also, knew that it would look very different from Phil’s recent get-away.  He checked into a hotel for three days, slept blissfully, wrote a blog, read a book, walked by the ocean, ate “sinfully” delicious food and had NO RESPONSIBILITY.  I want to mention here that Phil has NEVER done this before and I prodded, pleaded and eventually forced him to go.  I have, in the past, when Adam was in stable shape, taken days away, even a 12 day trip once to Hawaii to visit friends.  Adam was in school then and we had several  good people to help with his care.  This, unfortunately, is no longer our reality.   Phil, however,  could not leave his home, his son, his safety (the old PTSD STUFF. . . ) Until recently -  If you follow our story you will know that the last year has been very difficult – many, many challenges with Adam, ones that left us with that “special fatigue” only experienced by the extreme caretakers of the world.  We were both desperate for a break and, given that we have a gravely diminished support system in place, we needed to take our retreats separately.

Kripalu Retreat Center

I traveled to a yoga center in Western Ma., intending to sleep, walk, participate in some gentle yoga classes, eat healthy food, read, and “if the spirit moved me” connect with some other folks.  RUDE AWAKENING – I signed up for a dorm room with five roommates, all of whom had arrived and settled in before me.  Only a top bunk bed was left, with other people’s clothes scattered about – so welcoming (NOT).  I grabbed my book and tried to find a comfortable chair in one of the many sitting areas.  The Center was packed, people coming and going, chatting, chatting and more chatting.  I couldn’t read so I eventually found my way to a yoga class.  Relaxing? Peaceful? Comforting?  No, no and no.  My body was screaming – couldn’t turn my head to the left, had pain running down the middle of my back and this happened just because I was laying flat on the floor.  Wake-up Call!!!!  Hate it when that happens.  My body was talking to me – too much stress all bottled up.  I hobbled back to my room, met one roommate (nice enough) and then settled onto the top bunk worried about the night ahead because I ALWAYS have to get up in the night to use the bathroom. I was envisioning myself slipping down the ladder, crashing on the floor and further harming my fragile body.   As I was trying to drift off another woman entered the room, loudly announcing her presence, flossing her teeth with great drama, brushing her teeth in the sink while loudly spitting and then setting up a laptop on her bed with the lights on.  I could hear her typing.  Tossed and turned all night and, finally, in the wee hours fled the room, took a shower and made a plan.

Kripalu Center

I requested a private room – YES! And, was settled in within an hour.  I scheduled a therapeutic massage and it was perfect.  A tall, gentle man sat me down, listened to my story (which I told in two sentences) and kindly and compassionately talked with me about honoring mothers and, especially mothers in extreme circumstances.  I cried and he then proceeded to massage the stress from my body.  I must admit that I fantasized about taking him home with me – Phil and Adam would have loved him too.  And, my daughter – well, she loves massages. . .

So, I learned that I needed and wanted to be alone.  This seems like a contradiction when you know the circumstances of our life.  With the exception of one committed and loyal therapist who appears at our door every ten days for a four day stay AND visits from our daughter, her boyfriend and Tiki (the grandpuppy) we lead a very solitary life.  A few family visits each year, phone calls, casual conversations with the neighbors and one or two new friends – that’s it.  Being alone afforded me the luxury of NO CARETAKING, unless it was moving in my own direction.  I went to bed when I wanted, walked, read, took a nap.  I didn’t need much – the simple bliss of no responsibility for even a few days. . .  

Sounds like a new plan – every few months?   

Alone is OK!!!

Happy Anniversary to US!!

       Well, this was/is a match made in heaven...and as of August 29 (today), it's now 30 years...we have been through a lot together especially with the cute blond boy in this picture.  And yes, we were once young despite what we appear to be now.  I don't think life is short...this family picture seems about 10,000 eons ago.  But then, time is relative....

Aimee, Sharon, Adam, Phil Dzialo

       To demonstrate the intensity of our journey, we actually thought last year was number 30  and celebrated it with an "elegant dinner on the Cape Cod Mystery Train."  Big Mistake!  Dinner on an antique rail car is not really fun. 

       Love is not measured by time, or any single definable factor or moment or action.  As Adam has always communicated to all..."Love is being there, especially when you don't have to ..."    That's all there is to it folks, it's really that fundamentally simple.  You don't need a self-help book, novel or intense psychotherapy.  Definitions are meant to be simple.

       Here's to another 30; maybe we'll get the date right then!

     

To The Man of the Day...

 Well, the man couldn’t really be expected to write his own Father’s Day blog so I surreptitiously took it over for the day.  Phil has been a bit stuck on the whole concept of “indifference” lately and I certainly understand and do not want to be included with those who don’t bother to take notice of others – sad, sad statement about our culture.  So, today I want to express my deep appreciation for Philip, the father of the day.   I can’t count on our young man, dearest Adam, to help by channeling adulation and humor about his father because he is too tuckered out.  Big, big day yesterday – Adam went to a Red Sox game for the first time in thirteen years.  He had only been once before when he was twelve years old and declared it to be “the best night of his life.”  On that night he traveled with his baseball team and coaches sans parents.  He woke us up when he returned that evening, so excited to show us his trinkets – the Red Sox keychain and the signed baseball card.  He loved things like that.  Well, this trip was different and I just know that Phil will write an absolutely compelling and truthful blog about our recent experience at Fenway Park.  Phil brought a camera so stay tuned.

     Now the topic of the day is about honoring the father in the family.  To be perfectly honest, Philip deserves it many times over.  Adam, Aimee and I all understand his strengths and we know that life would be very different had he not stepped up to the plate (like the baseball analogy?) and shouldered this life challenge with such amazing competence.  A quick disclaimer – I am not saying nice things about Philip because he just wrote two loving (and funny) blogs for Mother’s Day and my birthday.  He honestly works hard every day.  He does hours of therapy with Adam and cooks wonderful soups.  He’s quite domesticated.    For fun he has been painting the exterior of the house (looks  lovely – I picked out the color) and grows vegetables on our deck which overlooks a pond filled with wildlife.  Just an aside – he loves to grow lettuce and I can’t figure out why the rabbits aren’t chewing away at it.  I think that Phil might have put a spell on them.  He tends to all of the plants and flowers, inside and out.  Every time I turn around another hanging plant or flower arrangement has appeared.  Maybe he conjures those up too.  Anyway he has lovingly created a beautiful home for us where we nest and take care of our handsome son.  Oh, and he  bakes bread!  We have been together for over 30 years and I don’t believe that I have prepared one meal.  I call it our “division of labor”. Our chores are evenly divided, trust me. Don’t want to give you the impression that I am a lady of leisure.  I won’t let him near the washing machine – he just doesn’t understand sorting clothes .  And, most importantly, he makes our life work financially by juggling, advocating, and, yes, sometimes bullying to help us get what we need.  He does not take “no” for an answer.

     Phil declared himself my business manager when I published my book  - CERAMIC TO CLAY – no , it’s not about arts and crafts.  The book which Phil painstakingly  listened to as I was writing it, chapter by chapter, with a nod and a “go for it” is,  OUR STORY – how we move through this big life challenge we were given and accepted.

He's not really this bad!!

     It’s hard to figure out what to buy this man who seems to have everything he needs and wants.  He loves Amazon and uses it frequently.  I try to replenish his wardrobe (he doesn’t care one bit about clothes) and they look nice for a bit but he always, and I mean always, manages to get paint, oil, floor polish and food stains on everything.  He also wears slippers everywhere. . .

     We really are true partners in this life we have created.  We adore both of our children, each so different in their needs and wants.  I could not have chosen a better father for my kids. He’s loyal, compassionate, a little quirky and, at times, very funny.    Happy Father’s Day, Philip!!!   Have a beer, water your flowers and plants, open your presents and know that you are loved and appreciated.

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!