HOW I FEEL

Watching my daughter Ellen’s agony as she lies in the hospital bed I am starting to wonder about how I see things. I wonder if all my years on Earth seem to be miscalculated, that perception of things is slightly off center by the influence of what others have told me.

Driving home from the hospital one afternoon I saw this old church on Medford Avenue in Port Jefferson. I thought about all the people who will go in there on Sunday morning, putting on their best pious face and sacred demeanor, then leave and be the hypocrites they are capable of being. This does not mean everyone who walks through the portals of “The Lord’s House” but a good many of them. They will be contented to play the game to ease their conscience, to invoke the name of God to calm their nerves and think if they can fool God he will go easy on them. Their mindset is to say to themselves: “I better not say out loud what I think, or God will strike me dead and deposit my soul in Hell for eternity.”

Then I thought about all the nurses and doctors I just witnessed who come into my daughter Ellen’s room with gentleness and care, soothingly talking to her to calm her fears and pleading forgiveness that they will pinch or poke her to bleed, all in the name of saving her life.

And, I wonder.

Where would I rather go to worship God? Where is truly His house? Is it the place where everything is ritualized, played out Sunday after Sunday, or where there are no rituals just the healing power of God at work moment after moment?

An individual can get up on a pulpit and tell me how to live my life like he is an authority on my feelings, a caretaker of my soul and the true captain of my destiny. Yet he is so unconnected to me, so void of understanding of what and who I am that what he says is simply meaningless. He can make the rules and influence your life while he makes other rules for himself, breaking the rules he set forth for me.

But when I sit next to my daughter, I see and feel the sacred vow of comparison the pervades the whole building called a hospital. I hear the love and the joy that abounds from the people that administer not only healing but relief and hope for tomorrow, this is truly God’s house.

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A SPECIAL BOND!

She doesn’t speak, yet she says “Mama” or “Mumma” and “Appy” for Happy. Both words are expressions of happiness for my developmentally disabled daughter Ellen and yet they are the only words she knows. Forty-seven years ago we met when I stepped out of an elevator at South Shore Hospital in Bay Shore and she was on her way to be cleaned up by her nurse, having just been born. I was on my way to see her Mamma who had just stepped into the world as my personal hero as she is: today! She became the mother of my child.

What struck me was that I was a father now, to a beautiful little girl who stole my heart and I never realized it until she sat in my arms for the first time that day.

Since the magical day she was born, we have become like one with my need to make up for the life she has, one I am responsible for as her father. When I retired I was able to attend all her doctor’s appointment and evaluations, learning about her and getting to know this little girl inside and out. I dedicated almost 33 years to her wellbeing by becoming a member of the Board of Directors that housed her daily program and residence. I traveled all over the State of New York representing her agency on a statewide basis, advocating for not only her but also those who were at a disadvantage like she is.

When my wife Ellen and I were told she was a ‘special child’ it was devastating and took us to a new world, one that few people shared. It was a world of frustration, heartbreak, and despair, yet the little things that she did accomplish made us proud of her tenacity and fight.

Both family and friends often ostracized us when she did not act normal and people would become silent or look away or offer some kind embarrassed reaction. You see, when you have a special child you must try very hard to educate her and those who stare at her or avoid the reality of it all!

Stepping out in public with a child who can’t speak, can communicate minimally and doesn’t really know how to express herself causing people to stare at the abnormal child, become harsh and not understanding what cruelty they show, makes a parent of that child withdraw into the safety of the family unit. There is no social life, extended members of the family are grateful they don’t have the burden and to exact some sense of understanding that you really do not wish to hear: “God only gives you what you can handle.” That is supposed to make you feel better yet no one ever thinks of the child, what is she given by God? I guess she can handle a life of sadness; one of feeling left out in the world or one of physical pain, social rejection and sometimes fear.

THE CHANGING OF THE GARB!

Yesterday, I visited my daughter Ellen at the ICU in St. Charles Hospital. As is customary, I usually walk into the room and greet Ellen who ignores my cheerfulness and looks at me like she wants to kill me for looking so happy.

As I ventured to the room entry I read the new rules that TLW (The Little Woman) spoke of the night before when she came home after visiting Ellen.

“You have to now don a gown and gloves when you visit Ellen!” she stated so authoritatively, as she does so well.

So, I look at the sign posted on the wall outside her room. I was clear, gowns and gloves… FOR THE STAFF! Visitors need only clean their hands! What a relief! If you ever wore one of those gowns you know how they can stick to your bare arms and the plastic does not breathe so it makes one sweat! Good thing I read the sign, no sense making Mr. Del Bloggolo unhappy!

Then, just like that, my good fortune turned sour! Yes, TLW showed up while I was away in the toilet and when I returned there she was, in gown and gloves! “You have to wear a gown and gloves!” she once again instructed me. This, of course, was my chance to explain, NO! I read the sign carefully and it does not require MY wearing of a gown or gloves! We went back and forth until I realized after all these years of being married to a former Catholic Elementary and High School student who follows all rules that it is pointless to argue with her when it comes to obedience. (Wish she would do that for me.)

After a while, a respiratory Technician came by to check my daughter’s oxygen level and complained about how hot it was in the room and how the gowns are uncomfortable. As she spoke I was busy peeling off the gown from my arms and finding new places to peel away as she spoke. But the lab tech agreed with me that I needn’t wear the gown and I ripped it off! There went 12 years of obedience for Sister TLW who looked at my sinfulness bemused. Torturing one’s husband must have been one of her courses at Seton Hall.

HAPPY MEMORIAL DAY

INDEED!

I hope you all can enjoy your day today in memory of those that gave or risked their all for the cause of freedom. And as I think about it, how about those other than American, soldiers who stood side-by-side with our troops for the same reasons.

Today I am resting a little easier, my daughter is coming back to her normal health and is feeling better. The last couple of days she has tried to communicate with us, and even smile. I suspect that she knows that she is feeling better and wants to express it.

So…

BUONGIORNO, FACE-A-BOOK!

Maria: "Eh, a whatta are you a doing?"

Aldo: "Nothing."

Maria: "A whattta you mean a nothing? You staring atta our a marriager certificate for over an hour!"

Aldo: "Yea, I checker the expiration date."

TODAY SEEMS TO BE A GOOD DAY!

As I walked into my daughter Ellen’s Intensive Care Unit room all seemed as I left it yesterday. She was quietly lying in her bed attached to the tubes that sustain her and she was sleeping away. The ICU floor was deserted mostly except for a few nurses and the mood was one set from the overnight darkness. It was 6:57 AM and I am ready to sit with my daughter to reassure her that someone is with her that she can trust and not to be afraid. I will spend a great part of my day here with her and it is worth it, attention is all I have left to give her.

Her collapsed lung is starting to come back and her breathing is getting there. They have introduced nutrients through her belly for the first time, a gradual process to see if she can tolerate it and so far, so good.

The news I can give is that she recognized me, smiled and teased me in her own way, something Daddy and Ellen does when she is happy to see me. She hasn’t smiled in so long I am afraid that we are having to teach her to when we teach her how to walk again!

Most importantly, she is resting comfortably and that is so very important! The infectious disease doctor came by and said she is going upward steadily good news!

Thank you all for your prayers, they are taking hold, your good wishes and graces have already helped my resolve and I know I see Ellen’s resolve for my model.

SOMETIMES THE SUN SHINES

With all the misery and heartache my wife and I have experienced these past few weeks with my daughter, something jumps out that is special and welcomed.

My son Anthony who is mom and dad to his kids has just passed a milestone with his beautiful daughter, Darby. As you can see Darby graduated from her preschool and will now move on to kindergarten.

Anthony has been the motivator to have her have a normal as possible life for a 5-year old without her mom. This means making sure his daughter is going to school and mingling with her peers. She is and always was creative, and he fosters and supports her creativity. This is from a kid who only knew baseball, basketball, and football, but read the Kings and Queens of England at the tender age of six. He was always correcting his dad and competing with me in nerf basketball, wrestling and playing baseball. He is a great father and does the mamma routine as well.

As I look at the pictures I see how much he loves his Darby and she loves him, and that makes me very proud to be his dad. This is but one of many things I feel proud about when it comes to him, he has been a great son and will always be one.

If you look at my header picture yo see the happiness and contentment of those two beautiful kids with their dad, this makes me very happy and grateful.

Congratulations Darby, you take after both your great mom and dad, you take care of your brother Bobby Muscles Marinara and to daddy, congratulations, you should hold your head very high.

Love you all.

AND THE BAND PLAYS ON

Yesterday was another horror story, with the same old song and dance and the band played on. This tiny little woman, not over 100 pounds anymore is fighting for her life giving it everything she has. She beat back cancer of her colon and is still fighting pneumonia. As my wife says when things seem to be settling down: “When will the next shoe drop?”

As a miserable morning started in the early hours I arrived at the hospital filled with hope, trying to steady myself that something new happens to my little girl and I would want to crawl into a deep hole and pour the dirt over me. I wasn’t disappointed.

“Ellen has a partially collapsed lung!” This was after the immediate need to give her painkiller morphine that is too strong for her weak and frail body and she spiraled into extreme pain shaking and struggling in the bed with her hands tied down so she doesn’t pull out the tubes. More meds and changing of the apparatus to help her shallow breathing as things spiraled out of control.

The amount of phlegm and mucus they withdrew from her lungs was as thick as a vanilla pudding as her nurse described it.

They now have her resting in her room, the key here is ‘resting’. The hospital cleared her lungs and she is breathing now with the help of a machine, a good sign for a change. Hang on as I walk out to the floor and choose a new dance partner.

WATCHING THE AGONY

As I sit here in her ICU room, she looks about and then stares blankly into space, not noticing her surroundings or me just the pain that is starting to build once again. It is like traveling down a dark alley in a bad neighborhood at night where you were jumped once before, the dread of each step intensifies beyond your willingness to endure it.

I can only watch the agony she is suffering wanting to assure her that help is on the way, yet the only help is the unseen element of time, an element that should heal.

Going to her bedside, I lean in to whisper to her that I will find help, as she looks down and away seemingly accusing me of betraying her in her most time of need. Little does she know of the countless hours her mom and I have spent in hospital rooms on her behalf in support.

I rush out to the nurse station and inform them that she is crying, they all overhear me and react with sadness and cries of non-words in sympathy for her. They the nurses have grown to love Ellen, they are working very hard on her behalf and it assures me that Ellen is going to win this battle no matter what with their aid.

Suddenly her nurse rushes up to the entry of her room to assure me she hasn’t forgotten Ellen and shows me a needle she will use to inject morphine into a port attached to Ellen’s body.

But the agony of the pain Ellen is experiencing is ruling the day, her body, and spirit, it is causing me to agonize in empathy and cause me great anguish, wishing the pain was mine and not hers. But God has chosen the actors and the audience, the script is pre-ordained and the outcome is His secret.

What is comforting is the knowledge that she IS getting better in spite of her outcries, pain, sadness, and despair.

I WONDER WHOM IT IS HARDER ON?

There are a lot of people with a stake in my daughter Ellen’s current crisis. My wife and I are truly worried and deeply concerned, scared and maybe even a little frightened. There are the doctors and nurses that are so diligent and concerned, looking for every possibility to stem the tide of disaster, they too seem perplexed and can’t understand it all.

But with all these concerns the one most concerned and least informed is my daughter Ellen. She is the one who is suffering and causing all the concerns, she withers in deep pain and suffers, looking for relief from all the pain and the poking, stabbing and intrusions on her peace. As the pain intensifies, she looks at me and pleads, her eyes saying: “Please Daddy, make it stop! Why is this happening to me?”

I think when I see this I see all the cruelty of man that has been inflicted on all the innocent of the world. I see the small children and adults, led to their slaughter by the animals of the world that kill because of their skin or religion. This factor hits home a lot. I feel the senseless pain that all those Jews went through, lifted from lives of peace and devotion to God, the many healers, and teachers, the musicians who brought peace and joy and spewed love as an output of their talents and instruments, so cruel and senseless that they are silenced.

I hear the whimpering of my child and it echoes through the ages all those prosecuted because they are black, the hatred for those who seek a better life in this country and because they can’t get away soon enough form the terrors that they live in, try to sneak into this country.

My daughter tells me a lot. She tells me that I need to be there for her like the doctors and nurses are. She needs me to be here so I can function knowing where she is and how she is doing, she needs to know that someone who does love her is there for her in her pain and fright. My daughter tells me she is fighting and that I need to supply her weapons, help her aim and stand her ground. She is suffering mightily and so she fights.

GOD TAKETH AWAY AND GIVETH!

Just as the reality of the cancer scare was over another thing is taking its place.

Ellen has been inactive for over 6 months lying in a jerry chair because of the hip replacement operation and Urinary Tract Infections that occurred continuously since then. She has lost her ability to stand and we thought it was the pain from her operation that prevented this.

After her latest operation, she has developed pneumonia and is struggling. She can’t or doesn’t understand she needs to cough up the mucus that has formed anis still forming in her lungs. She is still under great stress and pain so severe she is moaning and morphine has to be dispensed in heavy doses. It takes a while for the morphine that nurses say should work immediately to partially take effect. We, the hospital staff and parents, are not sure if the pain is from the operation or pneumonia. Ellen is incapable of talking so the pain is reaching her parents profoundly as we watch her agony. Her eyes search our faces begging us to do something that we do not understand.

So, once again she is on the ride of her life and as the doctor said, “She is in critical condition!”

OH, HAPPY DAYS!!!

It was a week to the day, eight days in all and each one was filled with anticipation of the worst possible scenario we could imagine. Sitting day after day in the hospital room wondering what lay in store for my poor daughter occupied my mind.

Having a friend of mine from high school lose his daughter to cystic fibrosis and the ensuing funeral weighted heavily in my heart and soul, the devastation that leaves the landscape of a parents life shattered, burning, and hurtful scared me, as I sat in the church and watched the rituals for the dead, imagining my daughter may be in that coffin one day soon.

The next morning, yesterday, I went to the hospital and arrived at 7:30 AM with my I-pad and laptop ready to spend my time to soothe and comfort and perhaps help the great staff at St. Charles Hospital deal with a very difficult patient.

As I sat there next to her bed, my daughter seemed to be suffering yet was totally unaware of my presence, awakened once, saw me and drifted back to her listlessness and pain-filled existence.

Suddenly a house doctor entered and looked in on her, introducing himself to me I explained my fear and wondered when I would get the results of the pathologists to report on Ellen. Sympathetically he asked me some questions and like everyone else said the same, the report usually takes a few days after the operation to give results. He promised me he would see if he could get something for me.

About fifteen minutes later the good doctor reappeared and gave me the news, there are no signs in the lymph nodes of any cancer anywhere! The large mass was removed in total and the surrounding areas were not affected, meaning she would not need chemotherapy! This was the news I was not accustomed to, this was the news I didn’t imagine, this was the news I never get!

I spent 47 years protecting my family of children, sometimes things are good and sometimes they are terrible and heartbreaking, but every time I stand next to them whether they want me there or not, I am there! I want to spend the rest of my life doing the same thing, caring for my kids! They may be adults, but they are my kids!

I am on a high as I write this, I am grateful to all who cared and prayed and asked about Ellen, thank you, you are all good and I love you all.

PAIN OF FEAR

It starts out as a routine procedure and grows steadily into a major crisis. You look for one thing and something else unexpectedly appears. You are always on alert but never prepared. You only know disappointment and when something does go right, you wait for the other shoe to drop as it always has in the past.

As I sit in my daughter Ellen’s room in the ICU at St. Charles Hospital, I try to steady myself for what will be the inevitable I know is coming from the pathologist’s office on what was found in terms of cancer that might still be in her body.

Many years ago I had a child that was a lot like his sister. He was the third of my four children and developed a series of illnesses that finally took him at the age of 20-months. From the day after Thanksgiving until the day he died in late January we watched the horror show that left us empty and bereft with silent pains that we suffer every day, knowing that my child is lying in the ground in a cemetery too soon.

Back then as I do now every day was a trip to North Shore University Hospital for the two months that ensued trying to save him. The doctors would tell us they just needed to do this and then that and as they accomplished one thing another would occur.

Nothing in life is a warranty on happiness when you have children. All my kids had their days of pain, but the pain is felt most acutely in the parent’s hearts and psyche as we witness the distress and wish with all our hearts that it would be one not our child who suffers of us. I would lay me down now for a resolution that would solve her life-long problems and condition.

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AS I SIT HERE

Having my daughter in an ICU at the hospital means long hours of waiting for answers, needing questions answered and trying to occupy my time in some fashion. Sometimes I reflect on events of the past to help me get through the boredom. My daughter Ellen doesn’t talk and if my wife is not around, there are no conversations with anyone but doctors and nurses.

So, this morning as I was heading to the hospital I pulled out into the main road from my street and there was no one in sight except for an SUV about a half-mile down the road. The individual, an idiot with a license, was speeding and sped up behind me. I stopped for a red light and this moron decided he was mad because he had to slow down behind me. This was an affront to his manhood and being stupid decided he could not live with himself if he didn’t do something. So, Tinkerbelle decided to pull up next to me in a left hand turning lane and when the light turned green raced ahead of me to be in front. Well, I don’t know if that restored his feminine genitalia back to manhood but it did confirm my diagnosis of stupidity and moronic tendencies.

Stupid got stuck behind slow-moving traffic as I joined a highway and watched him sit there. Sometimes, revenge requires little action on my part.

SHARING PAIN

It was a beautiful spring afternoon with sun and soft breezes that made you want to forget your mission. It was early as the cars that would fill the parking lot were yet to arrive. I sat and surveyed the lot, watching people arrive slowly and find their own place in the lot at the funeral parlor.

I could feel the tension that consumed my body for the last few weeks as I viewed my daughter fighting for her life with the able allies called the St. Charles Hospital staff.

The many phone calls and text messages I was answering, the impossible request to: “Keep me posted” ending in many of the calls. The imposition of all this overtaking me as I tried to deal with my daughter’s cancer, something I feared for months but was too stupid to rip the blinders off until finally I got disgusted with everybody, including myself.

But, sitting in the parking lot was not about me, but about another, someone who won my admiration and support when he unquestioningly supported my request to help my son find employment. We had met previously for lunch as we compared our lives after 50-years of separation, and keeping in touch.

His name is Joe, and like me, he has a daughter who suffered greatly but was always hopeful and radiant in her joy, this I know because I know her dad. God called Kristy home and with great sadness for Joe and his lovely wife they met their community to share the grief that was so profound and touching.

Sitting apart from the crowds as they entered to pay their respects to Joe and his family, I couldn’t help but admire the love that came from these people, people who only wished to hold and hug one another in this time of deep sadness.

Joe Conley has lost much a part of his life was taken but will never be forgotten. God has chosen that beautiful young mother, Kristy, to reside among the chosen because she was all good and worthy of such a position under God’s shadow, forever. She was chosen for who she is and always will be, Joe and his wife’s child because she was infused with the goodness of love that came from loving people.

Those parents now have a friend for life who shares empathetically all the pain they are suffering. Tomorrow the sun will shine again, life will go on and the strength of those parents will prevail for all of us as they show us what class is all about.

Pray for Joe and his family, I know I will.

PAIN OF FEAR

It starts out as a routine procedure and grows steadily into a major crisis. You look for one thing and something else unexpectedly appears. You are always on alert but never prepared. You only know disappointment and when someth9ng does go right, you wait for the other shoe to drop as it always has in the past.

As I sit in my daughter Ellen’s room in the ICU at St. Charles Hospital, I try to steady myself for what will be the inevitable I know is coming from the pathologist’s office on what was found in terms of cancer that might still be in her body.

Many years ago I had a child that was a lot like his sister. He was the third of my four children and developed a series of illnesses that finally took him at the age of 20-months. From the day after Thanksgiving until the day he died in late January we watched the horror show that left us empty and bereft with silent pains that we suffer every day, knowing that my child is lying in the ground in a cemetery too soon.

Back then as I do now every day was a trip to North Shore University Hospital for the two months that ensued trying to save him. The doctors would tell us they just needed to do this and then that and as they accomplished one thing another would occur.

Nothing in life is a warranty on happiness when you have children. All my kids had their days of pain, but the pain is felt most acutely in the parent’s hearts and psyche as we witness the distress and wish with all our hearts that it would be not one our child who suffers but us. I would lay me down now for a resolution that would solve her life-long problems and condition.

I know her life expectancy is not that of an ordinary healthy adult that we must prepare ourselves to say goodbye. But loving a child like Ellen with all her imperfections, my advocacy on her behalf all of her 47 plus years, the unrequited love she gave me and I her, I just can’t let go.

IT GETS COMPLICATED

Like everything in my life, my daughter Ellen’s situation is getting complicated. Gone is the optimism we had just a day or so ago and replacing it is cautious monitoring of what the situation really is.

The hematologist came by and we discussed the fact that the pathologist report was not ready yet but that it looks like it might have spread. He asked if I would agree to chemotherapy for the future. I asked my usual questions about the pain factor involved and where or what was left and how that would impact the treatment of chemotherapy.

One of the biggest questions on my mind is how will all this leave Ellen? Will, it caused a lot of suffering or pain that reduces further he life as it already is? Will she ever be the same? Will the disease leave her totally incapacitated and shorten an already short life expectancy?

One of the horrors I have lived through was the death of one of my children way back in 1981, and the emptiness that dwells in my heart for him all these past years. After spending almost 47 years of trying to keep my daughter alive, keeping her safe and happy, advocating for her and fighting her battles, is there any room for more of this sadness and sense of despair?

Sitting in the hospital room with Ellen, I see a lot of women her age attending patients and wonder if she might have been one to help rather than one who is receiving help. I know her life is unproductive in the sense that she has no trade and never will, nor will she ever reach the high plateau of motherhood.

So, what is the point of all this and what was the point all these past years? We can for selfish reasons fight to keep her alive because I think the point is I love my daughter, want her near me and wish only that life improve for her, in spite of a life that does nothing for anyone else except her family.

As always, again my family is being tested to the point of uncertainty and on the brink of despair, pain seeping into the core of our beings, wreaking havoc on our hearts and minds.

TENDER LOVE, TRUE LOVE

He entered the room with a look on his face that said: “How is she doing?” He marched to her bedside and carefully looked in on her. He asked questions in a gruff way, almost demanding she responds. His frustration built as he waited for a response from her. He continued to ask until he got an answer.

Calling the nurses he respectfully asked more questions and seemed to be chained to his cell phone, as his children would call him asking how their mom was. He gave them answers and bade them go to work since he had it all under control.

He wondered out loud how he would do this a seventy-seven-year-old man and that and where he would find the time, then sharply turned his attention to his wife once again, lovingly inquiring in his gruff way how she slept or was she hungry, then he would order her breakfast.

When he fed his wife, you could see the respect that was implanted in his soul, a recognized sense of who she once was, not this one or two-word answer that she gave him. He asked her: “DO YOU KNOW WHO I AM?” She didn’t but followed his orders as best she could.

When he was done, he plopped his weary body in his chair staring at me on occasion and not wanting to intrude on his heartache I avoided asking questions. But I could see he wanted to talk but like me felt maybe it was better to not talk. Finally, I surrendered my prerogative to remain silent and asked how it was going.

“She doesn’t know me!” Holding his index finger over his thumb he said: “She has NEVER even this much hurt ANYONE! How unfair is this?”

Sitting quietly he watched the TV hanging from the hospital wall, staring without looking, quietly holding her hand. True love, a good man, she must have been a good woman.

HAPPY MOTHER’S DAY!

Every year I write about my mom and all she was and did for me. I never appreciated it while she was doing these things for me. After she passed I missed her very much and understood what she was all about me.

But today I wish to honor someone else, the mother of my children, someone who deserves honor and love and gets it from her children. When one of her chicks is down Mamma comes alive leaving no stones unturned and questions everything in her path.

That her children love and adore her there is no question for each is tendered love she tailors for each personality. She worries about her children, makes plans and oversees what we plan for them. She is unrelenting in her attention to the offspring.

As we passed through the crisis we have faced this year in our beautiful daughter-in-law Courtney passing and now the cancer scare for my daughter Ellen, she has faced it all with grace and good sense. Sometimes I have to calm her down to so she can catch her breath, yet she can be calm. There are times the tears fall and I have to suggest she turn her heart and mind somewhere else for the moment.

But she is a mother one who has been tested far too often and still stands strong. She is a mother with a broken heart, losing a child to death and one to disabilities. She holds onto her sons with determination and deep devotion. Above all, she is my wife, a woman who cares deeply for her children and wishes only to see them happy.

HAPPY MOTHER’S DAY, TOOTS, YOU ARE THE BEST MOM AND WIFE I KNOW.

THE LONG ROAD WE TRAVEL

Life can be funny, as we go along the path of life, we realize the end is never in sight but we know it will end someday. As we travel we carry our luggage with us, and the more steps we take the more the luggage becomes packed. Then one day something happens: the luggage tells us this is the last stop, we are finished, and the road has ended.

It really doesn’t matter who we are or where we stand in the scheme of things, we all travel and become burdened then we come to the end of our roads. God planned it that way, become, travel and finally rest.

The problem is that when he puts us on our journey, we expect something from him, after all, we hear about a loving God, a compassionate God, and a healing God, some of us lose out on the attributes we associate with God.

Our lives are of our own free will, we go and do, God does not carry a torch for us to light the way, he does not determine what we become or even who we become, he sets us on our way. If we choose to believe in Him, we must be willing to accept that fact that he only watches, he only listens and speaks to us in our minds and souls, leaving our hearts to ourselves. He does not affect the outcomes with prayers from us, and reason would suggest for good reasons. He is not a tool of ours.

Today is Mom’s birthday. She first introduced me to God a long time ago and taught me plenty with love and the business end of a wooden spoon. When she wasn’t crafting a beautiful simple dinner from the love she was teaching me that love has to be earned and the concept should be practiced as well as received.

God gave Mom life, and a road and as she traveled that road she gathered children along the way and taught her life lessons to us. What she taught me was to be as compassionate as possible, not be judgmental to the point of not understanding, but to try to walk in their shoes those we judge. She like me was never faultless in her life, but she tried and so do I.

As I watch my daughter Ellen lie suffering, I question God why? I ask what she did that she deserves all the pain and hardships she has endured all her life. Where is the justice? How can I love God or even believe when these things happen. Then I think of mom and dad who showed me by their examples that it is not a god of control but a god of judgment in the end. That millions of babies that suffered and died through the centuries including my son, are all the fault of no one but the course of a natural life, a life we spend on the rod, and that the journey may not be an equal or fair one for all of us, but in the end God will judge us on how we lived with it.

So, how do we determine God’s presence, His work and our place in the scheme of things? I look around the hospital as I write this and notice the many suffering, the many near death, the many families that wait in despair and I realize that his presence is within the hands of the doctors and nurses that supply the chance for healing, the opportunity to travel to little further. They, the doctors and nurses do God’s work, they are the result of the loving God, the compassionate God, and the healing God, the one we seek and beseech.

Today Ellen goes under the knife as the surgeon tries to remove an aggressive mass of cancer that is threatening her life, on her grandmother’s birthday. Maybe Mom will help me one more time.

 

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Happy birthday Mom and thanks.

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I CLOSE MY EYES AND I PRAY

We finally got the news I was waiting for and it isn’t pleasant! My daughter Ellen has colon cancer! It is like whistling past the graveyard and getting a ghost, a cold severe shiver and a cold blast of air that consumes your heart and soul.

With all the physical problems Ellen has, to add this to her seems a bit unfair and cruel. Why? What did she do to deserve such suffering?

When they did the colonoscopy they discovered the large mass at the end of her colon. They stuffed a tube down her nose to feed her the liquid that was supposed to cause her to clean her bowels and instead, because of the mass they discovered, it backed up and will not get by. They did it a second time and succeeded. So, the surgeon will cut her open and remove this mass by hand and explore around and see if there is any more that needs to be dealt with or not.

She has not eaten in almost a week, she is sleeping and in severe pain, so they will do the operation on Friday morning first thing. I got what I wanted and now I fear for what I’ve gotten, what I will be putting her through and all I have is hope.

Ironically, when Ellen was born, we became parents that did not consider ourselves like everyone else, and for 47-years we feel the distinction and wished we didn’t have to, and now we are fighting tooth and nail to retain that distinction so that she will live.

With all this misery, tell me where is God? Does he know that an innocent person has suffered so much for all of her 47 years? Whatever the crime, she must have committed it before she was born, and is paying for that crime even until Friday and later.

A DAY OF RECKONING!

Today, I will find out what is really wrong with my daughter, Ellen. For the past nine months we witnessed my daughter being constantly sick, so sick she could stay awake or hold her head up. She smiled little and was aware of even less.

Four times her residence sent her to the hospital with a urinary infection, each time they treated it and sent her home. After the third time, I got very angry because I realized that the hospital and staff were dealing with the infection without looking for the cause.

Angrily I demanded a meeting with the staff and told them to stop treating and releasing and start looking for the root cause! A whole bunch of tests was arranged for this coming week and before she could go to the second consultation, she is back in the hospital once again!

Last Thursday I met with a gastroenterologist to find the man arrogant and without an understanding of the mission I was on, so now he knows, because when I left this idiots office I informed him and now we are on the same page. He seemed to want to convey that HE was the doctor and I might not know anything! Now he knows he is a doctor of suspect credentials and indeed I am right.

The very next night Ellen was rushed to the emergency room at St. Charles. Overnight they did a CAT-scan and made a report of the results. It is not encouraging. The report goes over every aspect of the scan and came to a conclusion, a nasty one! I will find out today as they do a colonoscopy if what was reported is true and can be verified.

I don’t know what I will do if the professional suspicions are real. I do know I have to hold this fort together for all of us concerned, and one more fight looms on the horizon. I do know that the real combatant will stand tall and she will fight all the way, win or lose.

She can really use some prayers and moral support.

IT’S NURSE WEEK!

Do you have a nurse you love? If you do you should celebrate nurse week along with me. I have a niece and nephew who are both nurses, doing the work of God Himself, kind of an extension of God’s office.

As I sat in the hospital this morning visiting my daughter I asked the nurse if the hospital was doing anything special for the nurses and they didn’t even know it was nurse week! So, I started some trouble as they started to ask one another if the hospital WAS doing anything for them.

Then I wondered if there is a doctor’s week and realized it wouldn’t make any sense since they are never answering a call anyway, or they are on the golf course.

I love nurses because they are so good to my daughter, and to their charges as a whole, doing the things that a mother would do with the same amount of tenderness and love. They are like the immigrants that take on the menial jobs because they need to pay their bills, love their families and hold the value of work sacred. Nurses take the same ethic and apply it to healing people, no menial task, yet it is so difficult to perform. The things they do I would never want to do, but someone has to and they do it and do it well. The amount of abuse they get from patients is deplorable and that is unforgivable. They work under some bad conditions caring for their patients as they are often understaffed as well as underpaid.

I would rather hate to see a nurse overlooked, so, when you see one, thank them for doing God’s work. One may very well save your life as they did my grandson’s.

WHATEVER WE DO TO THE LEAST OF OUR BROTHERS

My daughter Ellen is a person with a physical and mental disability. She cannot speak, nor can she make any decisions of consequence, yet she has impacted my life beyond my imagination. With her simplicity, she has dominated and influenced my decisions, my wife’s decisions and her life. She has impacted her brother's lives and she probably will for the rest of their lives. She has shown them both that tolerance within the heart and mind, when coupled with love, is above all.

All her life my daughter Ellen has been a challenge, one my wife Ellen and I accept with the realization that she is our child. All children are challenges and it depends on who and what child it is. One son is easy going and one is questioning, one is accepting and one challenge. This is what makes life interesting and worth living, for, without both, I am not who I am now and would be less than I am.

But the ‘special needs’ tag is not a misnomer, instead, it clarifies who we are as a family, for my daughter is special and she has needs that go beyond those of a ‘normal’ child. My wife and I are the couple with the special child, the retarded child, the child that thank God the observer doesn’t have. Her brothers thank God love her.

My wife and I have suffered more than you can imagine, we have endured the death of a child, the discovery of a child with retardation and numerous bouts of depression that have affected my family. We have had to deal with the death of a beautiful daughter-in-law that still lingers and well beyond my years on this Earth.

But we know and remember that whatever we do for the least of our brothers, that we do unto to God himself, for each of us has the spirit of God within us and so we love our daughter, and whatever she endures, she will endure in the shadow we cast over her.

If you can, pray for her and for her family as out knees buckle but do not fold.

CRONES DISEASE?

For way too long we have been experiencing issues where my daughter Ellen has been suffering from UTIs, not eating and now vomiting.

She was sent to the hospital last night and is currently in there as I write this.

Tests were conducted and are now suggesting Crone's disease as a possibility.

Upon further evaluation overnight in the hospital they also found two masses in her intestines, this could be one of two things, the results of the Crones disease or my biggest fear.

It seems she is losing a lot of weight she is very pale and has days when she will not eat or drink, causing dehydration.

Please think of her if you will this morning.

BIG BROTHERS AND SISTERS

Recently, I got a phone call from the Big Brothers and Sisters organization asking if I would donate articles of practical use to their great organization. They do a lot of good and I once was a ‘Big Brother’ myself for a little guy named Joey.

He was a smart kid and very handsome and we hit it off great! This was around 1978 and my oldest boy was starting to need attention from his old man, so I had to quit and devote more of my limited time to him. I felt bad about it but there are others out there, single and who don’t have commitments like family I felt, so, let them do it.

Joey I’m sure turned out OK, and probably I should look him up sometime. I even got involved in the organization doing things for them promoting the cause, as I would naturally do anyway.

The call itself was fortunate since I am getting rid of a lot of things that someone else could use so I will do that. It bothers me that with all this stuff I accumulated over the years would be tossed.

THE INSANITY OF IT ALL

Having computers and cell phones, I-pads and the constant need for passwords. There are bastards out there who look to breach you protection to steal your identity to clean out your bank account.

So, all the experts say you should change your password periodically, just to protect yourself and your systems. I have a laptop, a desktop computer, an I-phone, an I-pad and I find that idea almost impossible, you tend to run out of ideas for new passwords. Like myself, most people don’t bother and they really don’t have the time to do this every month.

I thought of a progressive password that would be logical to help me keep up with it all, I think I’m close to something but there is so much that I have to do first. Like trying to remember all the damned passwords. My wife has her little book for her passwords, but she operates an I-pad only, and her I-phone is not active.

On my devices, there are many passwords for many areas such as programs and websites and codes that I need, but this is getting all too cumbersome. My email accounts are all in need of passwords and frankly, I’m having too much trouble remembering them all!

I will now use only one password for all my devices and that word is ‘Idontknow’ If you plan to get into my system though, be advised that it triggers a virus to infect your system. The ones that are aleady are in my system! It is binary in that it either recognizes the source or infects if unknown or outside my devices. I paid a good price for this to be installed, so come on baby, make my day!

CALIFORNIA DREAMING

One of the things I did to facilitate a smooth transition to California is to investigate the availability of housing in the Burbank area.

Now I have a preconceived vision of what I want. I want an open area, light and sunny that reminds me I will never see the snow and sleet, the drabness of the East anymore. I would like a place with many windows, large enough to give me sunshine all day. I want to see flowers, colorful flowers with trees and particularly palm trees from all those windows. I want enough room for my grandchildren to visit me and run about freely. Nothing like the happy squealing and laughter of little grandchildren as far as I’m concerned.

If there is a place for a simple bar-b-q that I can turn a steak on with a cocktail in hand on a sunny evening, feeling the warm breezes of the day, the azure or cerulean blues that Mother Nature paints the sky, all the better.

Waking up in the morning on my way to visit my grandkids, I want and know I will feel the warmth of the sun on my face. It reminds me that I am in a good pace, near my grandkids, as I plan to take them to the LA Zoo, or the parks and playgrounds, maybe a ride out to Anaheim to entertain those little munchkins at Disneyland.

I may be getting old, but I want to play catch with my grandson, just like I did with his dad, and watch the enthusiasm grow for a sport I always loved grow within him. I want to watch my beautiful granddaughter grow into a stunning woman with all the brains and guts in the World to make a difference in it.

The very first day I awaken from my sleep and realize I am in Burbank, the sun will be shinning both inside and out, on my face and in my heart.

SYMBOLISM AT ITS BEST!

Way back in 1931, President Herbert Hoover officially dedicated the Empire State Building in New York City. Pressing a button from the White House that turns on the building's lights, Hoover's symbolic action did it while he remained in Washington, D.C. ruining the economy.

Hoover in spite of his failings as President did represent all married men in a way that affected us all deeply and profoundly. I can assure you that whoever it was that did switch on the lights had to be a woman.

They have been doing this for years, as my mother used to say to my dad when he thought he was in charge:

“You may think you are the head, but I’m the neck that turns the head!”

Wow, pretty heady stuff, yet true! I would ask my father for something and he would say:

“Go ask your mother.”

He was you might say: AHEAD of the curve.

As I got older, if I needed something and my father was standing there I would eliminate the middleman and go to the real head of the government by asking:

“Where’s Mom?”

But it gets worst. I got married and married my own neck. Just like Dad, I became a quivering shell of a man, following orders that were planted in my head making me think I thought of them.

The kids call home and I answer:

“Yejellow?”

“Where’s Mom?”

“She went out to spend down our treasury before taxes.”

“When is she coming home?”

Sometimes they are really talkative and this happens:

“Yejellow?”

“Eh! Is Mom home?”

This adequately covers the conversation because I can then go back to checking the inside of my eyelids.