Thursday, November 29, 2018


Life is never as it is supposed to be when you are a parent of a child with developmental disabilities, beginning at their birth and your life changes forever.

As a young disabled child, the only issues one would face is colds that normally arise with any child, and perhaps something to do with their disability. But as they grow older they become more susceptible illnesses that can involve hospitalization. Along with illness comes physical disability that can cause accidents and additional hospitalization. Some take copious amounts of medications that start to negate each other gradually, and the doctor will not realize it until something serious happens.

Since August, my daughter Ellen, who is 46-years old, has been hospitalized for falling and causing a brain bleed, then a second fall that resulted in a hip replacement. In that time she was in a rehab after her hip replacement. She has responded by stopping eating or drinking. It is so bad now that her home for people with disabilities once more rushed her to the hospital a day after her release. She is extremely thin and sleepy, responding to life by putting her blankets over her face and head and fall off to sleep.

It was mid-afternoon yesterday as I was about to sit down on a cold winder raw day to have a cup of tea when my phone rang. Having ‘Caller ID’ I could see who was calling, it was her home. She hadn’t been home 24 hours yet and so I suspected something was wrong. The party on the other end was a nurse informing me that she sent to the hospital ER because she was still not eating or drinking.

Cursing my daughter’s luck I drive off to the hospital. In my mind, I imagine all kinds of future situations occurring. I get to the hospital ER and am directed to where she is, and in her bed, I see a body with a blanket draped over her head. For the next four hours, blood was taken and a test was done and after 4 hours of this they were going to do more tests, so I knew it would be a long haul so I left, expecting to come back today. As I get home I receive a phone call advising me that all the test are coming up negative so the hospital staff thinks I should send her home with a name of a suggested gastroenterologist, would I agree with this. I ask what she suggests and going home is the best thing.

At midnight we get a call from a male nurse informing us that she is on her way home. And so like a whirlwind, it goes, from hospitals to rehabs, just to keep this sweet child of mine alive and happy.

Say a prayer for her.

Wednesday, November 28, 2018


I woke up this morning a little later than usual. Being a person of habit I didn’t want to get out of bed but felt guilty that I did sleep later than usual for me.

There are many difficulties when I arise at a later time than I am accustomed to, for instance, TLW (The Little Woman) who immediately questions my health. As she was putting away my life insurance policy, she asked: “Are you OK? You slept late.” As a dying man anyway I agreed that I slept late but just did, that my health is fine and that she should wait until I’m officially dead before taking out the policy, that there is no point in wearing it out.

Getting started in my day becomes a nuisance since I am trying to catch up, I still have my morning nap, my afternoon nap and have to eat all three squares. I try to make it up at noon but it gets confusing falling asleep in my sandwich or soup.

Then, of course, there are the emails, phone, and texts that need to be answered, meeting dates and lunches I like to schedule with friends.

Cooking is a passion of mine, I love to cook and willfully improvise and as proof of my prowess, my wife and children are still alive. But I need the inspiration to don the apron and muster up the pots and pans and search for suitable ingredients to marry together in one big plan to feed the multitudes (mainly TLW).

So I will go through the day trying to catch up and get back on EDST.

Tuesday, November 27, 2018


People sometimes complain that I make fun of my Italian relatives and Italian-Americans and that I shouldn’t. They don’t understand.

My grandparents had a cellar, an interesting place as any I’ve known in my life. Down in this cellar was a treasure of antiquity and mystery, history and tradition, as ever there was in any such a place. The cellar ran the length and width of the house, and it was broken into three main sections. There was the majority of the cellar, and two small separate rooms, one housing a wine press and one for canning.

It had just 2 overhead exposed light bulbs with a string hanging from them to pull on and off the light. The floors, cast in cement offered no comfort or welcome, as did the surrounding atmosphere of darkness and mystery.

As you entered the cellar from the long hallway that had this almost visible portrait of a devil from the harsh paint strokes that dried on the outer door, (It was my imagination) telling you to tread cautiously and don’t wake up the demons you descended the steps and immediately things started to happen. You came to an old Victrola, with the dog looking into the sound system: “His Masters Voice.” label on the grammar phone or speaker with the big knob-like needle holder that you manually placed on a record. On the sides, it had moveable slats that looked like large vents to direct the music.
His Master's Voice
As you moved past the Victrola, there was a free-standing room with doors making up the walls of this room, and I wondered if my grandfather kept a monster in the room, as I gently pressed my ears against one of the doors. I would hear these noises coming out of it and would back away, my knees shaking and the urge was to run. (It was the furnace!)

There were used oxygen tanks from before the war and after when Dad made glass novelties and other things that had an interest to me, but the thing I always went to look at was, my grandfather Joseph, fresh off the boat when the picture was taken. He is in a black pressed suit, black bow-tie, a stiffly starched shirt, and black shiny shoes topped off with a boutonnière on his lapel. This picture amazed me as it had him standing in front of this grayish background from an almost Draconian set, next to a table that stood on three legs, as it was a small table. The picture must have been about 30’ x 40”, and although I was named after him, I never met him. His sharp black mustache trimmed to a pencil thickness dominated his face, and his eyes seemed to tell so many mystic stories. Here was the cradle of American life born from the “other side.”

There were two long factory tables, probably where all the glass novelties were placed and sorted before being shipped to customers. Flags, American in kind stood in one corner of the room and pictures of haunting poses of saints occupied the other walls, and as you walked the length of the cellar you could almost hear the echo of days past, each object with its own tale to tell.

Then there was Grandmas gas stove and the wonderful steaks she would make on it. She had what best can be described as an iron wired contraption with a long handle that you lifted to place a piece of meat in, you closed the handle and placed the steak on one of the burners and there you roasted or bar-b-q the steak, leaving a mouth-watering smell that drove you crazy if you were in the least bit hungry!

The canning room had shelves lining it, with jar after jar of tomatoes, eggplant and other canned delights that once extracted from the darkness of its home and placed on the plate created all the sunlight you needed in your life.

When Grandma cooked, she reduced things down to the simplest of terms, she cut her garlic over the pan, she tossed her spices by the pinches and stirred her magic to perfection and completion, leaving the dinner totally satisfied. When the canning room came alive while processing the tomatoes, in particular, there were flies everywhere, but grandpa rigged a big fan that kept them out of the room.

There were weddings and parties with relatives with accents. These accents were the poetry of these wonderful peoples lives. They and their accents were accepted finally into the mainstream of America, making it possible for me to be who I am and do what I want. Their accents meant to me a calling from home and the heart. Yes, the accents were but identification of their hearts and souls, warm and loving. To tell my stories is to tell how much I loved and missed them all.

Oh, I would give anything to once again see my grandparents, to feel the special love that came from them, in their zest for life, their kindness, and generosity, their love of food and family, because it was family and love that fueled the engine they drove.

I can cry that I miss them, but laugh at the memories and take comfort in their lives touching mine.

So what lurked in that cellar?

Memories of love.

Monday, November 26, 2018


THIS is what it will look like after January 15!
Everything comes to an end; the tallest buildings, long spans and even centuries-old monuments will come to an end someday. Take my wife… please. Oops, couldn’t let that Henny Youngman line go by. But seriously folks, she is a prime example of what I speak of. On January 15, she will be officially retired and will perform strictly at home.

No longer will I hear her regal in tales of unsuspecting members of her Wanna-Be-Bank and Truss Company entering her domain. This is a loss of monumental proportions, a cultural deprivation to my dinner hours: we will have nothing to talk about. For instance:

“I had a man come into today to borrow money for a car.” Then she tells me what happened, if the man was nice or not, spoke English or not or was maybe a little light in the loafers. But this is all fodder to the conversation; this is all-important feed to entertain me.

TLW (The Little Woman) is a ‘platform’ person, someone who helps people straighten out their accounts, sometimes even their lives, Lord knows, she straightened me out enough times. Soon my time will be reduced to discussing Trump or the kids or grandchildren.

And so, after January 15, 2019 I will be a man without a conversation, I’ll have to shut up and eat.

Friday, November 23, 2018


November 23rd has so much meaning in my life it is hard to fathom the depth and broadness of it all. Back in 1971, on the day after Thanksgiving, after I took my girlfriend at the time home to meet my mamma and poppa, I asked her to marry me. I really don’t know where her head was as she said yes to my proposal. I didn’t have to offer her money or special tributes, she just said yes. Shame on me, for taking advantage of her kindness and fortunately she never took it back.

We have spent all these past years together, seeking out more happiness, giving to each other and never looking back. I guess life has been amazing in that respect. In spite of all the things that have happened to us, we have held together, she has me under my right arm and I have her under her left arm.

But this date has not been good to us either, for it was on this date that our second son Joseph, at the about 1½ years of age was put in North Shore University Hospital after suffering seizures the night before. It would be mostly his home until he died the following January after a heroic fight.

All this came to me today as I sat in my daughter’s room waiting to speak to a nurse about her mysterious malady, battered and bruised by the past 5 months we as a family have had, and wondering if the nightmares will end. I guess it all came back to me because it feels eerily familiar as I stood in the threshold of her hospital room. Her sweet little face is no longer bloated from the medications they are feeding her from the IV, her head resting soundly on her pillow, her mind far away from the realities of her suffering. Her body is but a shell of herself as she lays almost in a contorted yet serene way, her sheets over her face and unaware that her brother and father are standing over her, fretting.

As we left the hospital, we surmised quietly and reflectively about what is happening, and what will happen. Thinking about how much she has been through since August when she fell and caused a brain bleed, then her hip, she was one tired and unhappy person who can’t express or demonstrate her discomforts.

Later today the doctor called me, and as I saw who it was on phone window my heart skipped all the way back to my childhood. The news I got was good, her numbers are getting better and they were able to get her to have a bowel movement for more tests, but they are concerned about her not eating.  I called TLW (The Little Woman) to tell her and she asked me to find out what time breakfast is so we could go up there and see if we could get her to eat.

Dealing with people on the phone lately has become a frustrating chore, communication can be tricky as the party of the other end is usually ready to say no to anything and anyone to exert power, just ask their mothers.

Me: “Hello? Hi, my name is Joe Del and I need to speak to the nurse’s station on the second floor.”

Her: Where’s that?”

Me: “Well, the building has three floors, the second floor is between the first floor and the third floor!”


I am having too many crises about now.


Tuesday, November 20, 2018


Since June and the sadness that has followed, I think I am in a state of mind that is not positive. I have lost interest in many of the things I enjoyed in life, and find no reason to want to chase them.

I used to play Santa for people with disabilities at their annual Holiday dance, but this year I tried to do it and I am dreading it. I just don’t want to anymore. I want the holidays to go away and I want to close up my life and move somewhere where there are no reminders. But that won’t solve the problem, my memories are too vivid and saddened by the losses and setbacks I have suffered along with my family. It seems that watching it all evolve has taken a toll on me, but not for myself but for my children and especially my grandchildren. I am grateful that I will at least be spending the holiday with them as I keep beating myself over their loss.

I just finished a major project and am not happy that it even occurred. What I did was a work of love, but like tired lovers, I am just going through the motions of doing it. It was something I was eager to do when I started it I was, then June came around and like everything else, I lost interest and just did what I had to do to finish it, meanwhile being distracted by the constant bad news.

There is great disappointment in people I thought I loved and they loved me, but that is not true so I will move on from there as I do from Santa and everything else that I loved. I don’t know if I’m depressed or just disappointed in life and all that has happened.

Having a Christmas tree or decorations is out of the question, I don’t want any, and especially after the perfect Christmas, I had last year. Maybe that Christmas will be my lasting memories of Christmas and I will only recall that time in years to come during the holiday seasons.

I do wish you all a great holiday and I hope you prosper through the years and live a stress-free life.

Monday, November 19, 2018


Many years ago when I was a young dad, my #1 Son (Anthony) gave me the hat you see me wearing. The hat has to be about 39 years old. His mom helped him to buy it and it became his gift for me on Christmas. There is a very good reason why I have kept the hat and will continue to do so.

I was not used to wearing a hat, as a rule, so this was a novelty and I loved it. Apparently, I did not love it enough that I lost it one day on the Long Island Railroad. Feeling bad I came home from work that day and told him I was sad I lost my hat. He was about 4 years of age and was quickly learning how much of a bonehead dad he had. (This would become a reoccurring theme).

Then one day lo and behold there was #1 Son with a replacement hat. This was a wonderful surprise and I was overjoyed, expressing delight and glad to know he thought of me so much as to forgive my bone-headedness! So, one day we get in the car to go somewhere and he is sitting in his car seat in the back seat of my car.

Me: “Gee, Anthony, I really love this hat!”

Anthony: “Good, don’t lose it this time.”

Thursday, November 15, 2018


Life has certainly changed since the 20th Century. Communications are improving and instant information is now at our disposal, making knowledge all the easier to attain.

With the invention of things like the GPS and the ‘Smart Phone’ or ‘I-phone’, one can now get anywhere, learn anything and be spoken to by robotic voices. Go to a supermarket and check out with the help of the scanner as she instructs you on the steps to purchase groceries or hardware in a giant hardware store. You can check-in at a kiosk to fly somewhere, or order a hamburger and fries at a Burger King. Can life get any easier?

Glad you asked that question.

I have problems with it all. Siri, the lady that resides in my office computer must have had a stroke since she slurs her words like a drunk. Who knows, she may have downloaded some booze off the Internet without my knowing it. When she responds it sounds like she is annoyed that I even ask her a question.

My GPS and I have been at odds ever since I got it since the lady in that thing sounds like a bitch! If I deviate slightly from her directions she yells at me telling me to ‘PLEASE FOLLOW HER INSTRUCTED ROUTE’ as she now has to re-route to my destination, telling me not once but three times.

Supermarkets with their self-checkouts have some very demanding broads. They sound like my third-grade teacher, Mrs. Walsh, who never smiled or was in the least bit pleasant unless she was about to smack your open hand with her ruler! I wonder how that voice can go home to her husband with that attitude? It must be difficult being crammed inside those scanners I guess.

Airline kiosks are friendlier since they don’t have to talk to you, spitting out instructions and leading you by the fingers. Some even greet you, ask for your blood type and toilet schedule and immediately find you in the ‘system’

While you mention it, ‘the system’ is that vast array of info in cyberspace that contains everything about you including how much earwax you produce in a year’s time. Go to your friendly browser and type I anything and anything comes up, in multiple forms all ready for you to assimilate.

Want to bank, go online and do it, never dirty your hands with money or catch a cold from the man or woman behind you online. If you are daring and brave or brave and daring, you can actually go into a bank and still not talk to anyone as you approach the hidden teller’s window.

Before we know it Catholics will be able to go to confession on-line with megabytes of absolution, and for penance have to ask Siri for forgiveness.

Tuesday, November 13, 2018


Every Italian family in Brooklyn back in the 1940’s and 50’s had a friend or friends who came from the same hometown back in the old country. It was just like a regular family and intimacy was one of family. You laughed or cried with each other and you broke bread because of it. Secrets might be held back but on the whole usually weren’t.

Sunday was a ritual day, a day of part fasting, part praying and mostly eating, drinking and conversations. It was a day of paying your respects to the elders and dressing up. It was the OFF day, and toward evenings the bluest time because you had to go back to work or school in the coming morning.

Sunday began by fasting because you had to go to ‘Holy Communion’ on Sunday morning, sit through a children’s Mass that was policed by the nuns, I think they were the Sisters of Agony, since every once in a while in church a whack went out for some poor soul who was not kneeling straight.

Walking back home after church, you could smell all the pasta sauce, the aroma of tomatoes and meat mixing together slowly in a massive pot, the underlying menu enhancer for the day. We would get home, hungry and Mom would put out buns or buttered Italian bread from the grocery store and I would get a little coffee and dunk away.

Then came the resurrection, that is, Dad finally getting out of bed where I find him at the kitchen table, a cup of coffee, the Daily News sports pages opened and his ever-present cigarette, leaving a haze so thick we needed to call out to each other to find ourselves.

Mom had a habit of running out of parsley sometimes, so she sent her little 6-year old son over to a Gummada to ask for some. I would walk over the few doors, enter the vestibule and ring their second-floor bell. The mamma would answer: “Who isa it?” knowing who it was and I would yell out: “My mother needs some parsley.” “OO parseleee, comer onna hup.” There she stood, a giant grin on her face as she greeted me. Before I got any parsley, I had to sit down and eat a pastry with a little coffee. Each member would greet me pleasantly and talk to me a little, I’d get the parsley and off I went.

We lived a few doors away from our Gummada, who had hailed from my Grandmother’s hometown kept us in their loop as well. There was Mamma, a sweet and wonderful woman who loved children and loved to squeeze my cheeks, muss up my hair, cowlick and all. There was her husband, a giant of a man who was hurt on the job working for the Pennsylvania Rail Road and relied on a cane. He would hobble with that cane and still worked because there was no insurance or benefits on the job in those days like there is today.

The children were all grown up, there were two sons, one called Tony and one Mike, there was a daughter named Catherine who married and I was her ‘Flower Boy’, and all of these wonderful people stayed in my heart long after I last saw them over 63 years ago.

Mom, like every Italian lady, made gravy on a Sunday morning. Your whole neighborhood did it, the slow cooking sauce percolating in the giant pot with meatballs and sausages, along with both beef and pork braccioli.

As a matter of course, around 11:00 am, Ah Gummbada would arrive, slowly climbing the steps with his cane, be greeted by mom and dad and dad would go into the closet, reach the high shelf and pour his guest a shot of whiskey, they would talk over his cigar and dad’s cigarette.

Then after ‘Pop’ had left, up would come to Mike, a jovial sort who had ideas to do all kinds of things, mostly piped in by his angels. He would advance to mom’s sauce pop, get himself a fork and dig deep into the pot and pull out a meatball, which he put in his mouth… whole.

If Brooklyn is known for its churches, parks, and trees, it was also known for its knick-names and Mike’s brother Tony had one. It was ‘Pineapple’ and that is how I knew him. Then one day Dad sent me to the corner candy store to get a newspaper for him and who shows up? Tony! What do I say? “HI, pineapple!” Old Pineapple isn’t too happy about the greeting and says: “WHYN do people call me pineapple, my name is Tony!” That is how I found out his real name.

Monday, November 12, 2018


I had the good fortune to meet someone too late in life. He was looking for me for four years and finally, we met. We met through a mutual friend named Michelle, an old friend of mine from high school. The gentleman is named Frank, and I won’t give his last name because frankly (pun?) I can’t spell it.

It was last year in a Starbucks that we sat over a coffee and he explained why he was looking for me. It seems he had an idea about a book and needed some help to rewrite and produce the book. He had my attention because his subject matter was something near and dear to my heart. The subject matter of Frank’s book was all about growing up in Brooklyn, or, a place called Brooklyn.

As I read his idea it struck me how wonderful it was in his own words and that I would just edit a little and bring childhood experiences to a new life that would tell not only his story but mine too.

Soon I found myself adding to the book in terms of the information he was relating and the history behind so much of what we took for granted as children on the streets of Brooklyn. Suddenly I was weaving his personal life and mine into the book, it was more than just a Brooklyn book, it was a childhood book for adults, telling historical facts from many years ago about the games we played on the streets, the struggles of survival living in the 1940’s and 50’s. Family crises and family love, tears and joy and suffering when as children, we hardly knew it the love was so strong within the family.

There is a weaving of an Italian flavor with Italian feelings growing into the American culture that slowly accepted Italian immigrants into the mainstream. But don’t kid yourself, it could be a Polish or Irish or German flavoring, it was a diversified Brooklyn we are talking about.

It took me back to the days of playing in the streets and on rainy days the halls of the tenements we lived in. The knick-names we had, the speech patterns we used and the loyalty to the neighborhood we all revered. The games were endless and the people beautiful, we just didn’t have the time in those days to notice.

The book is called: ‘A PLACE CALLED BROOKLYN’. I hope you will seek it out and read it. To me, it is like a song by Simon and Garfunkle’s song, Just Over the Brooklyn Bridge.

Sunday, November 11, 2018


Photo from the book: A Place Called Brooklyn

"The eleventh hour of the eleventh day of the eleventh month"

The armistice signed by the Allies and Germany came into effect and World War I hostilities ended at precisely that time. Too bad no one was told. Since that day the proclamation that WWI was the war to end all wars we have seen WWII, The Korean War, The Viet Nam War, and the various struggles in the Middle East since the end of the Second World War.

We see looking back to the last 100 years the changes and challenges we have faced this past century. The rise of Nationalism, Fascism, Communism, and all the conflicts of the Middle East, and Africa, the rise of Arab states and the demise of colonialism, all shaping, reshaping and evolving this complex world.

The Catholic Church has been proven to be fallible and all too human in its policies of cover-ups and yet ironically their humanitarian and Herculean efforts to help the poor. We now kill each other in the name of God, just look up the holy wars now being fought, yet religion has been the fomenter of conflict with the first sect ever organized.

The past is past, or is that prologue? Are we waiting for the next conflict or are we still in conflict. Antagonism is masked in religious and tribal prejudice, we now hate with conflicted reasons that allow us to take up sides. Who is it we direct our anger and fear at? How can so educated a civilization be so ignorant of understanding as a tool for reconciliation and peace? Why do we continue to abuse the innocent, children and men and women whose only crime is their faith in God and seek only peace?

Maybe someday we will melt our swords and into plow shears and seek to feed, house, and comfort one another with healing our own hearts and embracing all for what they are, brothers and sisters, and not for what they believe.

For these past one hundred years, we have learned nothing.

Saturday, November 10, 2018


What is being sold
I'm opening my own warehouse
Today is Saturday and I decided to wear my rotting old jeans, and accessorizing where needed. All week long I go to meetings at the agency and put on nice slacks or jeans. I put on my good shoes and best shirts, and frankly, I’m sick of it.

I retired for a good reason… to avoid having to wear suits with ties and hard shoes. I still find myself sitting around conference tables, but I lean back more often, even cross my leg of one side over the knee of the other!

Now my jeans are cutting edge, or may be worn out, depending on whether you see the glass as half washed or half dirty. (I thought it needed some revising) As my clothes get older their value increases according to the jean marketplace. People are actually paying good money for ripped jeans, faded colors notwithstanding and if they hang on by the grace of your fat ass, hang at the hips. People now see me and think: “There goes a well-dressed man!” a man of distinction.

Some people wait to see if their old clothes will come back in style, I wait until they are worn out and then walk with pride. I… am cutting edge!

Tuesday, November 06, 2018


My polling place
I went to my polling place to vote for a mixed bag of candidates. I hate all politicians and vote for the lesser of the evils presented. As I scanned the list of evilness, I noticed a lot of candidates I never heard of and are running for things that probably we could do without.

The list included a lot of the same old evil and some newer evilness. I vote my considerable weight behind a lot of women; they can do a better job and on the whole are the lesser of the evils.

There were hard choices to make, one gubernatorial candidate I can’t stand but did something I did like, but in the end, he got a thumbs down. Of course, the unknown evils left me with a dilemma, so I created criteria for voting, if they were Italian and Irish surnames, they got my vote, after all my kids are half an half. Sometimes a Pole ran and I voted for him or her because of my nieces and nephews being half Polish. I consider this criterion on the run when you have never heard of the candidates before. (Pretty sad) I think if you are committing to run for an office you should be given a minimum of exposure at least to the voters before Election Day.

Usually, mid-term elections are ho-hum, especially on rainy days, but with the Donald in office, it seems to be an emergency and necessity to get out their and vote. The polarization is extreme these days.

So get out there and vote, hee-hee and vote often.

Sunday, November 04, 2018


With every life come the pair, the joys, and sorrows of our singular existence, like life and death it is inevitable and complete. We try to live within the safety margins of life and joy and sometimes find ourselves falling over the precipice of sorrows, deep valleys of sadness and hopelessness. The days can dawn bright and sunny or they can dawn dark and foreboding, unfairly unleashing the heavy heart of tears and despair.

Today as I look around I see both and realize this is what life will always be. There is no tomorrow to speak of, life seems to have passed by and the hope for tomorrow falls to the next generation.

I can remember my grandmother as she visited or when we went to her house. She was a walking history of why I am, and her history like my parents and mine is filled with the joy and sorrow that comes with life.

There is too much sorrow in this world to pay attention to it and allow it to take over one’s life, for the darkness scars my soul so I avoid the prolonged psychological exposure that I could fall to. Instead, I look forward to the next moments, the new day and sunrise, accept the clouds and put one foot in front of the other and renew my resolve to carry on.

This past year has been a year filled with sorrows, deep and troubling one for which I cannot easily escape from. As a father I have to be there at all times, as a husband, I have to be there every time, as a friend I must always find the time and as an advocate, I must step up, speak my mind and risk the slings and arrows that will bring on anther dark new day. In spite of all that I need to preserve my own gyroscope of emotional stability and stay the course.

Death, injury, shock, and despair will be there tomorrow, hopefully, as I travel, so will personal joy. Joy in marriage, children and my new found happiness: my grandchildren.

Saturday, November 03, 2018


After over 7 weeks of rehabbing (not really), of days all by herself and stuck in a bed or recliner in a strange place, my daughter Ellen is finally coming home.

It seems that the rules of Medicaid seem to be in abundance and must be followed by all who take the assistance from it. This is sensible and makes for a better source of funding for the people who need it. Corruption and dishonesty being what it is, the innocent have to suffer too. Medicaid is a wonderful program and along with Medicare can really help people who suffer physically.

When someone rehabs who has developmental disabilities they live under procedures and laws that are designed to protect the system and the individual. The need to exam physically, to determine the safety of transporting that someone from a bed to a wheelchair and the assistance to do so is paramount to Medicaid and the state to allow such things for the individual.

There will be a meeting of the minds, nurses, physical therapist, her agency AHRC Suffolk and of course the guardians. There are medical opinions that are needed and advocacy such as caseworkers who are her advocates as well as parents are.

But all that will be over by Monday, and Ellen will be home once again, home to her friends, friends who are family to her.

Friday, November 02, 2018


One tough customer
My daughter is in rehab and has been for a while. When she had her hip replacement, she was released to recovery and then afterward with a rubber foam separator that she needed to keep between her knees to keep her from crossing her legs and causing damage to her healing process.

Once she went to the rehab, every morning I would show up and find the rubber foam off, in which I then asked to have it put on. This went on all this time. The rehab house felt that she didn’t need it anymore. Every morning the same story, GET THAT DAMNED FOAM ON ELLEN!

I walk in and as usual, hear the same pointless excuses for it not being on. “She kicks it off, she gives us a hard time, she won’t let us put it on”, and for the sake of accuracy, it was true.

After 5 or 6 weeks I decided to call the surgeon to inquire if she could indeed do without it and lo and behold (What does that mean?) they said yes, you can now take it away!

So off to the rehab to make the announcement, posted a full-page ad in the NTY announcing it, that ‘NO LONGER, AND I MEAN NO LONGER DO WE NEED TO TORCHER ELLEN WITH THE RUBBER FOAM!’


The next morning I come to visit Ellen and sure enough, she is wearing the rubber foam. I remind them and they say: “Oh, nobody told me!”

The next day the same thing, she is wearing the rubber foam, I remind them again. “Maybe we will get in touch with the surgeon to make sure. Obviously, I look like a liar.

Not only does she have the rubber foam on, but she also is not fighting it anymore. Go figure.