Tuesday, Jul 31 2007 - Lenny
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As some of you already know today is the anniversary of my brother’s death. Lenny was one of identical twins, both diagnosed as mentally retarded when they were 4 years old. I was 7 at the time and their disability changed my life and the rest of my family’s lives forever.
Talking about Lenny’s death is very difficult for me. Instead of writing something new, I have decided to share a few excerpts from the book I am writing. The book is really about my life as a pioneer within the internet dating scene (that’s how I met my husband) but what was happening in my dating life back in 2000 was insignificant compared to Lenny’s death. I could not write my story without talking about him.
This will be a bit longer blog than usual. I think I am doing this more for me than the collective CK community. It was written with great love and through great pain. If you can take the time to read this all, I thank you in advance. If you don’t, I understand that too. It has nothing to do with dieting or losing weight. It is simply about love, loss and life.
Exerpts from “Grace Under Pressure. The Cyberspace Adventures of a True Romantic”
… By Christmas 1999, I decided to try and spend more time with Lenny. I had let life and my own selfish needs get in the way of taking an occasional few minutes to spend time with him. Of course I had been angry for many years too. But all the time away from Lenny (and Stevie too) didn’t make me feel any better. Out of sight, was never out of mind. I really loved my brothers, but hated that I couldn’t make their lives any better; or so I thought.
I made plans with the caretakers at Lenny’s group home to bring pizza and feed all the clients living there every once in awhile. It was the least I could do and the most I could handle. And so I went a couple of times during the first ½ of 2000. There was exuberance in the eyes of most of clients in the residence and the staff cared. They ate the pizza with abandon. I had to help Lenny as he tended to gulp his food in large bites. He loved to eat and I loved to see him enjoy the pizza.
After lunch, I would sit with him for awhile. He knew my name (Dase to him) and rocked gently back and forth as we sat on the couch in the den. I tried to talk to him, but the only response I would get was his giant grin and a few of his high pitched “I knows”. But he was speaking volumes without really talking. Somewhere inside his head I know it made a difference to him that I was there. I loved him deeply and I think he knew that. I felt that each time I left the house; crying for most of the drive home. The tears were for many reasons; for what might have been, for not always being there for him and well, mostly because life was just not fair.
As it turns out I was the last one in my family to see him alive before we got the call on July 26, 2000. “Lenny is in a coma and on a respirator. He is in grave condition”.
I was at work when my sister called me just before 2 PM. It was a miserable, rainy day and an overwhelming sadness enveloped me as I ran out of my office. I needed to get home to get my parents. It was a long drive to the hospital and I didn’t want them to go alone. I needed to get to the hospital and see him. I needed to find out what happened to him. I needed to find out how this could have possibly happened.
We got to the hospital just before 4 PM and found Lenny just as he had been described; in a coma, on a respirator and close to death. I can not tell you how awful it was to see him there. He was a helpless child in a man’s body now and as he always had been. The doctor told us the chances of his coming out of the coma were absolutely minuscule. The only thing keeping him alive was the respirator and we might want to consider turning the respirator off at some point. We were only delaying the inevitable. He was clinically brain dead.
My God, those words were so hard to hear. They are just about the worse words I had ever heard in my life. I watched as the life faded from my mother’s and father’s eyes. This was their son whom they loved with every fiber of their being. Up until then it was the most devastating moment of my life.
The events surrounding what lead to Lenny’s condition are sketchy, but we have enough details to know how horrible his last lucid moments most have been. It was lunch time at the workshop where he “worked” everyday for the past 10 years. There were many clients in the workshop, but never enough supervision. Part of lunch was a roast beef sandwich. Apparently one of the other clients took Lenny’s sandwich and a struggle ensued. Someone from the staff broke up the fight and sat Lenny and the other client down to eat. Lenny, in his fear that someone might take his sandwich again, stuffed half of the sandwich in his mouth. He sat there silently as he tried to chew and quickly began to choke.
But no one noticed. He was quiet and that was all that mattered to them. Lenny didn’t understand what was happening to him and didn’t know enough to reach for help or make any noises. By the time anyone realized he was choking, he was blue and had fallen off the chair. And here is the most remarkable information of all. Not one of the staff knew how to perform CPR or the Heimlich maneuver. He lay on the floor lifeless until an ambulance arrived. By then, it was too late. Lenny’s brain had been deprived of oxygen for way too long; He was clinically dead and there was nothing anyone could do for him.
During the following 5 days we struggled with the decision to let Lenny go. To take him off the respirator meant giving up hope. I remember going to the hospital every day just to sit with him. Crying; stroking his face; praying for some reaction from him. On the Saturday before he died I thought I saw some eye movement. His eyes weren’t always closed tightly. One of the nurses (who were all very kind to us) assured me that it was just involuntary. But I wanted to believe he knew I was there.
It was a Catholic Hospital and that same Saturday afternoon I had a conversation with one of the nuns who worked ministering to family and patients. She had a special place in her heart for Lenny she told me. She knew he was really just a child and God would welcome him in heaven always. But I couldn’t bear the thought of the pain this boy had suffered all his life and for him to die in pain and live such a short life; it was all just too much. The Sister stayed with me for awhile; she held me as I sobbed. I was comforted by her words, but my grief was stronger than anything I had ever imagined. Was this really how Lenny’s life would end?
By Monday afternoon we made the decision to turn off the respirator. Any hard decisions I had been a part of before then paled in the gravity of this moment. I was inconsolable and for the most part so was the rest of my family. And knowing we didn’t really have a choice didn’t make our decision easy. As devastating as his handicap had been, this was a tragedy beyond comprehension.
At one point, one of the doctors approached my parents asking if they would consider donating Lenny’s eyes for a transplant. It may sound selfish, but it was more than my parents could bear. My father answered vehemently with a broken heart resounding through his thick Italian accent: “The poor kid is mentally retarded and now you want me to send him to heaven blind?” My dad’s simple thinking, perhaps; but understandable, absolutely. Lenny hadn’t had a break his entire life. My parents wanted him to rest in peace just as he was with his beautiful blue eyes for the Lord to see.
And so we said our goodbyes, one by one; no one even tried to be stoic. We all stood by helpless and cried; my parents; my brother and sister; their spouses and my eldest niece and nephew. My heart felt as if it was being ripped from my chest as they closed the curtain around him. There are no words to describe our grief.
They pulled the curtain and all we saw were the shadows as the staff prepared to remove the tube; his lifeline would be gone in a few minutes. I wanted to pull the curtain back and stop them. Please don’t let my brother die, the words screaming in my head. Just because he was handicapped doesn’t mean his life was not of value.
And then there were the sounds. There was nothing to mask the awful, gut-wrenching sounds we heard as they removed the tube from Lenny’s delicate throat. He gagged, he gurgled gasping sounds; horrible, loud, painful sounds. The nurses assured us he was not suffering, but I thought how can you be sure? It certainly sounded like suffering to me. This child had suffered his whole life; robbed of living a full life. What made you think he wasn’t suffering now?
And then I thought did Lenny ever even realized or think he was different. Did he feel deprived in anyway? Maybe being deprived of intelligence guaranteed his happiness. If he didn’t understand what he was missing, maybe he was happier than us all. Maybe what he was missing were just the things that no one really needs; stress, worry, hateful thoughts to name a few. My mind was racing; images and questions, propelled by rage and grief.
I craved answers to help me cope. I wasn’t there enough for him when he was alive. I wanted to give him everything possible at his death. I tried to concentrate on the good things; his smile; his sense of humor; as he was taking his last breathes I wanted to fill the room with good thoughts. This was such an ugly death; I wanted him die surrounded with love; to let him know that his life mattered and so many people cared about him. He was not an insignificant person. It was the only thing I could do for him now.
And then it was over. The respirator was turned off at approximately 5:00 PM, Monday, July 31, 2000. None of us could bear to watch him die as he continued to gasp for air. Eventually he would be calmer they told us. The morphine would ensure a painless end. They told us not to stay; there was nothing more any of us could do.
So we left the hospital, clutching drenched tissues and numb with a loss nothing had prepared us for. This was a senseless death that none of us could comprehend. We could barely speak to each other as we all headed our separate ways. We prayed the end would come soon. Mercifully, he died less than 6 hours later. Peacefully, they say. No pain, they say. I pray every night they were right. I wonder every day if we made the right decision.
As we prepared to bury Lenny, the next few days were tumultuous. How do you plan for something you never saw coming? Sure death is inevitable, but this was a young man dying 40 years before he should have. Every parent’s worse nightmare is to bury a child; the greatest heartbreak in the world. The fact that Lenny was disabled almost made the grief more intolerable for all of us. Why did everything about this baby’s life (for that is what he still was), including his death, have to be so tragic? Questions none of us could answer; mysteries none of us could justify.
…I decided to write a eulogy for Lenny. I didn’t want his funeral to consist of some non-descript words read by a priest with good intentions but who didn’t know him. I didn’t want his memorial filled with generalities and “his time on earth has come to an end”. I wanted to celebrate his life and put my recollections and my grief into words.
And so on August 3, 2000 we said goodbye to Lenny. It was a beautiful ceremony, if funerals can be described as such. I sat next to my brother Frank. We have never been very close, another dividend of a dysfunctional childhood. At one point though, despite years of unsettled differences I reached for his hand. It was an instant of bonding; for a moment we shared a common grief. We were both crying; for that minute nothing else mattered. I guess Lenny was beginning to work his magic on all of us.
My nephew Spencer spoke a few words about his Uncle Lenny. He was all of 10 but read his own beautiful and simple homage. His small stature stood tall as his cracking voice demonstrated the love he felt for my brother. Then my sister Mary Ellen reminded us of why she had chosen medicine as a career; about how Lenny and his brother Stevie inspired her to do good things.
Then it was my turn. I wasn’t quite sure if I would make it through my readings without breaking down, but I was determined to do so. First I wanted to honor my parents and the sacrifices they had made for all of us. I wasted many years angry at them for not loving me enough or at least that is what I thought. I never gave them the credit for doing the best they could with one of life’s most complex situations. And I never acknowledged how hard it must have been to raise these 2 beautiful babies knowing their lives would always be so difficult.
Year’s earlier I had found an inspirational poem that helped me realized the gift that Lenny and Stevie were meant to be. I hoped my parents would find respect and comfort in the beautiful words. I took license with some of the words to honor twins instead of one child:
HEAVEN'S VERY SPECIAL CHILDREN
A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
These Special Children will need much love.
Their progress may be very slow,
Accomplishments they may not show.
And they’ll require extra care
From the folks they’ll meets down there.
They may not run or laugh or play,
Their thoughts may seem quite far away,
In many ways they won't adapt,
And they’ll be known as handicapped.
So let's be careful where they’re sent,
We want their life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with these children sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charges, so meek and mild,
Each, HEAVEN'S VERY SPECIAL CHILD.
by Edna Massionilla
The Optomist- newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.
Then I read the following eulogy as my final tribute to my sweet brother:
Many of you did not know the Lenny my family did, so I would like to share a few memories of him with you today.
When I think of Lenny, I think of watching TV; of Bowling for Dollars and Batman. I think of him dancing and singing to music; how he loved playing his records; over and over. Sounds like many people though, come to think of it? I picture Lenny riding his bike through the neighborhood friendly to everyone, eating his meals with complete abandon and then I see his smiling face on the happy day when he received his first communion with his brother.
I also think of some very difficult times when it was hard to accept the reality of his handicap along with his brother's and its sometimes devastating effect on our entire family. From the moment they were born, all our lives changed.
But Lenny was special. He could drive you crazy and at the same time make you laugh. He was such a giggler. He loved a practical joke and in his own little world those jokes included turning off the lights , turning on the washing machine without clothes in it and putting the timer on for the oven. And when the buzzer would go off, he would laugh hysterically and often times we did too.
During the last few years, his ability to communicate verbally greatly deteriorated. But his capacity to giggle and smile always remained. I can still see his giant grin and hear his voice, with its high pitched inflection repeating the words "I know". I would laugh and think to myself "What do you know Lenny”?
Well Lenny, I hope you know how much you are loved and were loved always. How your gentle presence in our lives gave all of us a greater capacity to love. And today I hope you know that many truly mourn your death, not just because of the terrible circumstances surrounding, but because of the profound loss we feel deep in our hearts.
You are with God now, one of his special angels. And ultimately we know you are finally in peace. Free to be Lenny and shine your innocence on all of us.
Goodbye Lenny. I will miss you always. These tears are for you.
I made it through both readings. My voice cracked many times and tears streamed down my face, but I read every last word.
As I struggled to write this chapter, I tried to find words to describe how losing Lenny felt without trivializing or sounding clichéd. How many different ways can you describe mourning and loss and the unbearable pain you feel when you lose someone? Is there a new or better way to describe the ache in one’s heart or the knot in your stomach? When you feel that you have cried your last tear, a memory creeps up and grief overcomes you again and again. A quote from Les Miserables perhaps says it best; A grief that can’t be spoken.
.For many months after Lenny’s death and to this day, I still feel that way; 6 years later as I struggled to write this chapter, it was agonizing to recall those days without crying. I often had to close the file and take a break. It was that unbearable at times; a grief that can’t be spoken, but even more difficult to write of.
…And then Lenny came to me. It was early Sunday morning October 22, 2000. I was sound asleep and suddenly something woke me. I don’t remember exactly what time it was. but I know it was just past sunrise, so I would say approximately 6:30 AM . I could hear a buzzing in the distance. It shouldn’t have been loud enough to really wake me, but somehow it did. I got out of bed and walked closer to the bedroom door to listen. I realized that the sound was coming from the kitchen. I was still half asleep as I started to walk down the hall when suddenly I knew exactly where the sound was coming from; it was the oven timer. A chill rushed through my body!
It was Lenny! Lenny was here! There wasn’t a doubt in my mind that my little brother was paying me a visit. Setting the oven time was one of the things he had always loved to do. He would laugh and laugh whenever the buzzer went off unexpectedly; startling the rest of us, but completely entertaining himself. Using the oven timer to get my attention made so much sense. It was such a vivid memory for me that I had even referenced it in his eulogy. He had a terrific sense of humor and this was his way of expressing it. There is absolutely no other explanation as to why that oven timer went off that morning. I hadn’t used the oven in months and hadn’t touched it for just as long. It was him and I felt it in every fiber of my being.
As I walked to the oven, I felt a whisper of a breeze brush by me; nothing intense and nothing frightening. Actually it is hard to explain what it really felt like. But I knew he was there in my apartment and no one will ever convince me otherwise. Lenny wanted my attention and he certainly had it!
I turned off the oven timer and stood by the oven in the silence for a minute or two. I am not sure exactly what I expected or why I stood there, but I did. Within seconds I was sure Lenny was gone. As strongly as I knew he had been there, now I knew he was gone. This was an incredible event and I needed a few minutes for everything to sink in. I needed time to absorb the calmness I felt, but there were other feelings too. Sadness, perhaps; fear, not at all; confused, certainly. Why did he come to me? Was he trying to tell me something? Why did he leave so quickly? There was barely enough time to acknowledge his presence and then he was gone.
After a few minutes I headed back to bed, but I couldn’t sleep. My mind was racing as I tried to appreciate the amazement of what had just happened and to figure out why it happened at all. This was not imagined. The buzzer woke me and its sound was loud and clear. But there had to be a reason for Lenny to come to me. He had to be trying to tell me something. There absolutely was a message for me in Lenny’s visit. It wasn’t a random occurrence.
I lay there trying to picture Lenny’s face and I imagined the mischief that was going on in his head. Finally, it dawned on me why he had come to me! I realized just what he was trying to tell me; Lenny was OK. He was happy; he was up in heaven right where he belonged. He was making everyone smile and everything was as it should be. That’s why he used the oven timer to talk to me. He knew I would know it was him and he knew it would make me smile! “Please Dase, don’t cry anymore. Can’t you hear me laughing? Everything will be OK”. That’s what he wanted me to hear in the buzz of that oven timer. Although he could have never annunciated those words so clearly when he was alive, I could hear him distinctly now! What a beautiful boy he was!
Tears welled in my eyes, but in some way these were happy tears. I realized Lenny was safe. All the pain and suffering of his life was gone. I was still mourning my brother, but I could accept that he truly was in a better place now. I closed my eyes and slept peacefully for a few more hours more. It was the best sleep I had in a long time.
Later that day I went down to visit with my parents. My mom was still in bed and my father was beside her watching TV. Between my mom’s pain killers and their combined grief, that’s about all they did anymore. When I shared my story with my parents, they both began to cry. Turns out, I wasn’t the only one who Lenny paid a visit to that day.
My mom proceeded to tell me about her restless night of sleep. She had many of those lately, but this was different. She dreamt of Lenny often, but that night she kept seeing Lenny at the foot of her bed wearing his brown suit. As she described him to me I could picture him in that suit; the same suit he often worn when we visited him at Deveroux. . He was trying to tell her something but each time she couldn’t understand him. It was frustrating him and kept my mom tossing and turning all night long. Then he was there again one last time, just around dawn wearing the same brown suit. But this time he was holding a little girl’s hand and spoke clearly to my mother; “Mommy, I am OK, please stop crying. You can let me go”. She said he spoke beautifully and looked like an angel. She had prayed to hear her son speak eloquently his entire life; his voice strong and his words clear. In her dream, her prayers were answered.
She didn’t recognize the little girl. I believe that she represented all children and it meant that he was probably with children, for Lenny was really just a child at 42; it was the innocence that he really embodied. She told me how happy they both looked and how she tried to reach for him; the image was so vivid. But as quickly as he came to her, he was gone; just as Lenny had been with me.
I think Lenny was smiling and happy and making mischief that day. He had come to us both so we could be at peace. What a wonderful thing for him to do! In death, Lenny was kind, sweet and considerate; just like the person he would have been had he been born without his handicap. Up until then I wasn’t quite sure about life in the hereafter, but now I have no doubt. I will see Lenny again someday.