Friday, October 19, 2018


As a parent of a child with disabilities, often times her disabilities can do her in. Her inability to stand steadily or walk without tethering can become a catastrophe and cause her great pain as it has in the past.

Recently one such catastrophe occurred while she was home in her ICF in Shoreham. Somehow or another she fell, causing her to fracture her hip and need a partial hip replacement. With the replacement of her hip come to the pain and the rehabilitation it will take. The specter of having to see her in any pain is too much for her mom or me to bear. This fact alone about mom is hard for me to digest since it is her pain that I feel too.

When they close the lights in the operating room and wheel her out, her stay at the hospital is brief in comparison to what she will then need to endure of the rigors of rehabilitating her hip, and so a rehab center is of paramount importance.

When events such as your child fracturing a hip suddenly shroud over you as a parent, it leaves you feeling alone and helpless, and you tend to cede to some degree any hope as despair takes over.

But I learned that none of that is true this time. Since I enrolled my daughter Ellen into the Partners Health Plan, it comes with certain benefits no other HMO offers, it follows through on a human level and comforts your outlook.

But what is PHP? It is an insurance plan that is designed for people like Ellen. It is not an HMO in the ordinary sense, but a part of an individual's successful life plan since it caters to IDD. It has a human side to it that no other HMO does. It fits the hopes and dreams I have for my daughter long after I am gone. Let me tell you a little story that happened to me.

As I stood one day in despair at Mather Memorial Hospital, the walls seemed to be closing in on me as I watched my child in pain. The grey day seemed all but totally void of life. It was going to be a long haul of healing and rehabbing a child of mine who knows nothing of patience or calm, just the reality that she is in pain and someone is holding her down in a hospital bed. The prospects of rehabbing looked even bleaker as I pondered where she would be sent.

Suddenly a sweet voice came out of nowhere and introduced herself as Lynn Rudder, Care Manager of Suffolk Chapter assigned to Ellen. She asked me questions about Ellen and noted my responses. She explained to me that she was working to find a suitable rehab center that would work with PHP to place Ellen for the long road ahead and would assist me in this long, hard, journey. She and Pat Turner of PHP would do whatever it would take to help Ellen. There was a visit from Ellen’s House manager at AHRC Betsy Gibson and her case manager Eileen Pullmacher, punching holes in the darkness of despair, in visits and advocacy. This is what I wanted and my daughter needed, people who showed professionalism, and care for someone when I am gone.
Looming ahead was a trip that my wife Ellen and I needed to desperately take to assist my son who lives in California with his two small children who had just lost their mother while birthing my beautiful grandson. Daddy had a 4-year old and a three-month-old with no wife to help him, and a monumental amount of grief he needed to shield his children from. Both Lynn and Pat Turner assured me not to worry, that they would be there for my daughter in a great time of need. That meant they would be there for my son and my grandchildren and my wife and I and most importantly, my daughter Ellen, all in a time of this great need and crisis to get Ellen settled.

There is no measure of gratefulness I can explain or illustrate aside from these few insufficient words expressed here. The worry that was lifted from all of my family is immeasurable and truly valued.

On Lynn Ruder’s PHP business card is her email address that reads:

They really do!

Tuesday, October 16, 2018


Back in 1991, I was introduced to computers, mainly because my job was quickly becoming dependent upon computers and if I wanted to be on the cutting edge, I needed to go to computers also.

I was hearing about other companies that had transitioned to companies and how easy the process was, so I went to my boss and said my piece. Rather than throw me out on my sis he suggested I look into it closely. There was an Apple Mac convention at the Javits Center in NYC and I attended. It was an amazing revelation, that quickly took hold of my imagination and I pursued the acquisition of computers for the art department.

Amazing things occurred, for one we produced 12 times the amount of work causing us to make far more money than we ever did, for a company that was doing well anyway.

As I look back, I wish I hadn’t been so fascinated and had pursued instead, the course of my natural talents of painting and drawing, sculpturing and woodcarving I loved so much. The power of the Internet probably more than anything else swayed me to think that computers were the wave of the future.

Recently I watched the movie ‘The Agony and the Ecstasy’ starring Carlton Heston and Rex Harrison. I found the power of creativity be the thing I missed most. There are many programs on the computer that are called drawing or painting programs. They may be good but they cannot compare to holding chalk in your hands, the power of mixing paints to apply ever so subtlety as to be hardly noticed. You cannot vary the pressures of a pencil on paper to achieve certain effects, on a computer.

I have one more project that is about to be completed, then, I think I will trash all my graphics programs and keep only my writing programs, and return once again to nature and the natural ways of drawing.

Monday, October 15, 2018


Muscles Marinara
He’s got a head like a melon, a big melon, with this wonderful face that makes me so glad I’m his grandfather. He is a fat little guy that when he smiles, your insides fall out and you want to just squeeze him and take him home with you.

He is his own man, a little man of three-months who has electrified his family and all who know him. H4e is also doing one other thing, stealing some of the spotlight from his older sister, La Principessa.

If you hold him for any length of time, be prepared to have wrestled the little guy, holding him is not easy, he squirms and wiggles and soon you are trying to catch him.

He is strong, very strong and you need to hold on tight with him, his muscle tone giving the aura of “Muscles Marinara” as he is known.

He can do all the things of an infant older than he is, and do it well.

There is nothing left for me to want. I have an incredible grandson, a grandson that makes me proud, and a sister who should have her own apartment by the time she’s nine and out of graduate school.

Sunday, October 14, 2018


Or… why do I feel broke?

Recently, while visiting my grandchildren in Burbank, California I went to a store and purchased some donuts for my granddaughter Darby. If there is one thing that my granddaughter and I have in common, it is the love of donuts. As I was shopping I saw this display for a certain specialized cinnamon and spice donut and brought it home to my princess. She loved them so a few days later I went to the store with her to purchase more to win her over.

Never do that it can be costly.

As a grandpa with his granddaughter in the shopping cart, I went through the aisles as she ordered me to stop and selected different things she liked. A greeting card that said to hold your friends close to you, a couple of bags of donuts to cake and candy, rounding out the trip for about $20 worth of grandpa’s wallet. Kind of like a fall cleaning for the old leather money holder.

Someday, she will become an expensive date. I will be in a pauper’s grave and all will be well.  But is it not the prerogative of a grandpa to die poor? When you have beautiful grandchildren as I do, it is your duty.

Saturday, October 13, 2018


Bobby 'MUSCLES' Marinara Del Bloggolo!
After a few weeks away from my life as I know it, as a husband, father, and grandfather, I am back to the same old, “same old” of my life. Visiting my daughter at the rehab is taking away a big chunk of my day. Life doesn’t stop and goes on in spite of my presence.

I learned a lot from my visit to Burbank, California. The source of my lessons is from the most unlikely of sources, a 4-year old and a three-month-old. The 4-year old is struggling to make her life normal, understanding her mom’s disappearance and being the above normal child she really is. I look at her and can’t understand her courage, where she hides her grief and how she explains it to herself enough to cope with the transient road of childhood understanding. I can see the strain on her in that she is unwilling to do some things, is afraid of being alone and yet presents her self as a sweet and loving daughter, kind of a surrogate wife in a way with my son.

Then there is a 3-month old who takes no prisoners. He is always smiling and seems to be putting everyone he sees in a prison of love and the incredible need to bite his cheeks. Yet when I look at him I feel the pain that he will eventually go through without a mom. He has a wonderful influence on his nanny, a lovely woman who has taken the two children to her heart in the best way possible. He just smiles and smiles some more.

Of course, my life lessons don’t stop with Darby and Bobby, there is also my daughter Ellen, who is sitting in a rehab angry for what life hands her every day. I wonder what her crime is that she is condemned to her whole life of not understanding her life or why it needs to be this way. Hitler was treated in life better than my innocent daughter and I defy anyone to rationalize the reason. She has no idea what a dance is, a great meal, a moving painting, a story to hold her attention. Her joy is in seeing my wife or me.

My children have always been special to me for their own reasons. #1 Son is logical, caring just like his brother, #3 Son, who has made his own meritorious world of compassion and kindness. #2 Son did not live long to my satisfaction but left a legacy of bravery and love I will never forget.

They all seem to have the knack of facing adversity and placing one foot in front of the other, not in self-pity but in the realization that in the end, no one will care unless you do yourself. God bless them for a change.

Sunday, September 30, 2018


My lifeline of hope, my board
So often I sit in the rehab rooms and hospital rooms and wonder what will be when I’m gone. Maybe I shouldn’t think that far ahead since what happens after I leave this Earth I wouldn’t affect. My daughter Ellen has a most uncertain future at the least and an unpredictable few moments ahead. One never knows from moment to moment, be it a seizure that last as few minutes or a fall that affects her physical stability, taking a little away from her ability to freely and independently move about.

Sometimes as she lies in her bed I look at her and wonder what she is thinking about. Where does her mind go, does she understand what has happened, is she frightened?

Being overwhelmed is not hard to do when you have a child most of your life who has the title of mental and physical disabled. It means as a parent you need to plan, look ahead not for yourself but for the child. And what does this mean to all your other children? You have to shelter them from the disability by trying hard to free them from any responsibility for their disabled sibling when we as parents pass on.

All too often I hear these words: “God only gives us what we can handle.” THAT is a crock of BS, concocted from relief that they themselves won’t face it themselves, so they try to shore you up and hope you can believe it. They mean well, but they just don’t  understand.

I joined an agency, AHRC to provide for Ellen’s future. I felt that was one avenue I could use to help her be a human being with humanity embracing her as it would any normal person who is not disabled in its own way.

When she was born, I was full of hope, dreaming dreams only a parent could dream. I imagined her coming to my home with news she was marrying, I would then dance at her wedding with her, that she is pregnant and then bringing those children to their grandfather to play with, love and cherish. My wife too had those dreams. Shopping with her daughter, pictures of her graduations from high school and some university, just like other mothers.

There is no wedding, no dance and no shopping, just the sadness of a future of uncertainty and despair to a great degree.

Saturday, September 22, 2018


She is amazing, akin to a wounded battleship, rudderless and circling slowly as the enemy peppers away at her, her guns firing and blazing away in defiance! ‘She’ is my daughter Ellen.

It takes a crew of people to try to convince her to do anything she feels she shouldn’t do, from taking her blood pressure to a medication. Try to move her and you will be carried out on a stretcher as she pummels you to the edge of eternity.

She does not tolerate anyone who gets in her space and will strike out. It is amazing that she can be like this and yet be one of the sweetest people in the world when she wants to be. Usually, she is happy in fact the only two words in her vocabulary are Mamma and Happy. If she knows you she will hug you, pat you on the back and say happy to you, a smile a mile long.

But it is this very spirit that makes her so strong, so resilient and tough, as she has to deal in a world of uncertain futures and destinations. She has weathered broken legs brain bleeds and recently a hip replacement.

All her life with her disability she has made life accommodate her, not the other way around. The people who know her best love her the most. However, she has left every hospital with people relieved to see her go and yet sorry she is going.