EmmasPapa
01-11-2008, 12:55 AM
My family has gone through a lot - especially over the last few years. Emma's T1 diagnosis was the exclamation point for us. She warms our hearts and breaks our hearts. I know that all of you on this forum understand exactly what I am saying and I know that all of you are going through the same trials. The past few weeks have been hard because little Emma after some real good times started suffering again. Emmasmom took some pictures on my camera of Emma on Christmas morning - she was curled up in a little ball with her blanket and her binky, even while surrounded by new toys. When I saw the picture my heart broke.
I get through things by thinking them through and by putting my thoughts into words. I posted several days ago about my "survivor's guilt." Your responses helped me to realize that yes, I am fortunate to be healthy and able to help out with Emma, and I began to feel better.
Tonight there was the little "flap" over PC speech. No big deal. The writer was upset, emotional and made a mistake. But the thread caused me to think about my oldest son and the picture that Brensdad posted. I cried. That day, so long ago, had slipped from my memory. Billy clapping his hands in joy at his little brother's wedding, pink shades and all. Precious moments. We all need to savor those precious moments.
I dealt with Billy's passing by writing about him. I want all of you to know that young man and to use "A Father's Eulogy" as a reminder that every person has worth, and even bad times can be good.
A Father’s Eulogy
I’ve always known that someday I would be standing up here trying to articulate my feelings about my first-born. I knew it would be hard, but I also knew that it was something I just had to do – something my special bond with him demands - so please bear with me – this is very difficult. I only hope I can maintain some semblance of composure – just a tiny bit of the dignity that Billy has shown throughout his life.
I speak from the heart when I tell you that the folks at the State School are as much a part of his family as any of us. I cannot even begin to express our gratitude for the love and caring the staff and management of the school has given him over the past 15 years. Many of them have stood by our side all night in cramped hospital rooms full of little blinking lights, snaking tubes and frightening alarms. Thank you Jackie and Carla and Vicki and Carol and Janie & Connie & Sharon & James & Billy’s foster-grandmother and so many more – too many to name. We thank you and will never forget you. I’m certain that Billy won’t either.
Until Saturday morning I had planned to draw an analogy of Billy as an athlete. To talk about the huge heart – the heart of an all-pro – that beat in his crooked little chest. I was going to talk about the desire most parents – and especially fathers – have that their sons will be strong and athletic – score touchdowns & hit home runs - and how over time I came to see that Billy really was an athlete despite his crippled legs and frail body. To tell how he even managed to smile up at us through a ventilator tube, and grin his beautiful little grin even after a paroxysm of coughing to clear his ravaged lungs had drained his energy. I wanted you to know that he had the heart of a champion. I wanted you to see that Billy was a fighter – because in his daddy’s eyes he was the flyweight champion of the world.
But Saturday morning Judi sat down beside me and asked me to be sure that I said something about how much Billy had given to others – how he had affected the lives of so many – and how he asked for so little in return. She told me that she was sure he was given to Pam and me for a reason. I know that he affected the lives of his brothers – Nick & Joey & Nathan – they are better men for knowing him. Among other things they learned to treat the less fortunate with the respect they deserve – they did that through school, and they do that today – and I am proud of them. He also brought joy to those of you who were around him here at the school. His playful, humorous, stubborn, manipulative, and yes, cantankerous streaks were up front and always on display. And so was his love. I don’t think any of you will ever forget his smile, his unique way of communication, and his big hugs.
As usual, Judi was right. Billy was as pure as the driven snow and he was a gift. Material things meant nothing to him. Clothes, cars, a cabin in the mountains, money --- none of that had any meaning or worth in his world. What mattered to him were the little things in life. To eat when he was hungry, to drink when he was thirsty, to watch and laugh as Bob Barker yelled “come on down”, but most of all he liked to be with people. He liked to have his head scratched and he loved playing a little form of hide and seek. We called the game pee-pie. Covering those big brown eyes with my hand – then suddenly pulling it away, saying pee-pie would invariably cause him to laugh delightedly. Such simple things.
His dancing, laughing eyes said it all – they were so expressive and revealed an intelligence that IQ tests failed to detect. You are here, I love you, you love me, and I am happy. He spent a lot of time in a place I called Billyville – A place we can’t understand but judging by his ecstatic expression it must have really been something. We all – and I in particular - should learn from him. Judi said that when I was with Billy she saw a side of me that she didn’t know existed – a softer, less guarded, and infinitely more gentle side. I noticed that too when he and Nick were together. Billy’s eyes would light up and Nick would melt. His hard edges would disappear – replaced by a gentleness and calm – even vulnerability. That was Billy’s gift. In retrospect, I think he brought out the best in everyone he was around and made them more thoughtful about their lot in life and more appreciative of the things they may have taken for granted. Let us all try to remember that as we go forward. Let’s accept that gift in the selfless spirit in which it was given. That – not home runs or touchdowns or the number and length of fish caught – is Billy’s legacy.
On his last evening on this earth Billy was more responsive and expressive than he had been in days. We were all there with him – and he made eye contact with each of us, searching us out around the room – as if to tell us he knew we were there and he knew we loved him. He gripped his brother’s hand with his left hand and mine with his right as he struggled to breathe. We knew that he was slipping away. The monitors beeped and shrieked, his fingers loosened their grip on our hands, and those beautiful eyes closed. He shed the bonds of the earth and the shell that was his body. We could feel the love and I know that he felt ours.
Goodbye little guy. We will miss you terribly but are comforted by the thought that you are finally free of your handicaps – free to run and jump and do all of the things you were denied here on earth. You were so very special and I am so proud to be your father.
As Brenden said to me in a quiet voice the other night after returning from the funeral home with his mom and dad – “Papa – Uncle Billy is with Jesus.” Indeed he is.
I get through things by thinking them through and by putting my thoughts into words. I posted several days ago about my "survivor's guilt." Your responses helped me to realize that yes, I am fortunate to be healthy and able to help out with Emma, and I began to feel better.
Tonight there was the little "flap" over PC speech. No big deal. The writer was upset, emotional and made a mistake. But the thread caused me to think about my oldest son and the picture that Brensdad posted. I cried. That day, so long ago, had slipped from my memory. Billy clapping his hands in joy at his little brother's wedding, pink shades and all. Precious moments. We all need to savor those precious moments.
I dealt with Billy's passing by writing about him. I want all of you to know that young man and to use "A Father's Eulogy" as a reminder that every person has worth, and even bad times can be good.
A Father’s Eulogy
I’ve always known that someday I would be standing up here trying to articulate my feelings about my first-born. I knew it would be hard, but I also knew that it was something I just had to do – something my special bond with him demands - so please bear with me – this is very difficult. I only hope I can maintain some semblance of composure – just a tiny bit of the dignity that Billy has shown throughout his life.
I speak from the heart when I tell you that the folks at the State School are as much a part of his family as any of us. I cannot even begin to express our gratitude for the love and caring the staff and management of the school has given him over the past 15 years. Many of them have stood by our side all night in cramped hospital rooms full of little blinking lights, snaking tubes and frightening alarms. Thank you Jackie and Carla and Vicki and Carol and Janie & Connie & Sharon & James & Billy’s foster-grandmother and so many more – too many to name. We thank you and will never forget you. I’m certain that Billy won’t either.
Until Saturday morning I had planned to draw an analogy of Billy as an athlete. To talk about the huge heart – the heart of an all-pro – that beat in his crooked little chest. I was going to talk about the desire most parents – and especially fathers – have that their sons will be strong and athletic – score touchdowns & hit home runs - and how over time I came to see that Billy really was an athlete despite his crippled legs and frail body. To tell how he even managed to smile up at us through a ventilator tube, and grin his beautiful little grin even after a paroxysm of coughing to clear his ravaged lungs had drained his energy. I wanted you to know that he had the heart of a champion. I wanted you to see that Billy was a fighter – because in his daddy’s eyes he was the flyweight champion of the world.
But Saturday morning Judi sat down beside me and asked me to be sure that I said something about how much Billy had given to others – how he had affected the lives of so many – and how he asked for so little in return. She told me that she was sure he was given to Pam and me for a reason. I know that he affected the lives of his brothers – Nick & Joey & Nathan – they are better men for knowing him. Among other things they learned to treat the less fortunate with the respect they deserve – they did that through school, and they do that today – and I am proud of them. He also brought joy to those of you who were around him here at the school. His playful, humorous, stubborn, manipulative, and yes, cantankerous streaks were up front and always on display. And so was his love. I don’t think any of you will ever forget his smile, his unique way of communication, and his big hugs.
As usual, Judi was right. Billy was as pure as the driven snow and he was a gift. Material things meant nothing to him. Clothes, cars, a cabin in the mountains, money --- none of that had any meaning or worth in his world. What mattered to him were the little things in life. To eat when he was hungry, to drink when he was thirsty, to watch and laugh as Bob Barker yelled “come on down”, but most of all he liked to be with people. He liked to have his head scratched and he loved playing a little form of hide and seek. We called the game pee-pie. Covering those big brown eyes with my hand – then suddenly pulling it away, saying pee-pie would invariably cause him to laugh delightedly. Such simple things.
His dancing, laughing eyes said it all – they were so expressive and revealed an intelligence that IQ tests failed to detect. You are here, I love you, you love me, and I am happy. He spent a lot of time in a place I called Billyville – A place we can’t understand but judging by his ecstatic expression it must have really been something. We all – and I in particular - should learn from him. Judi said that when I was with Billy she saw a side of me that she didn’t know existed – a softer, less guarded, and infinitely more gentle side. I noticed that too when he and Nick were together. Billy’s eyes would light up and Nick would melt. His hard edges would disappear – replaced by a gentleness and calm – even vulnerability. That was Billy’s gift. In retrospect, I think he brought out the best in everyone he was around and made them more thoughtful about their lot in life and more appreciative of the things they may have taken for granted. Let us all try to remember that as we go forward. Let’s accept that gift in the selfless spirit in which it was given. That – not home runs or touchdowns or the number and length of fish caught – is Billy’s legacy.
On his last evening on this earth Billy was more responsive and expressive than he had been in days. We were all there with him – and he made eye contact with each of us, searching us out around the room – as if to tell us he knew we were there and he knew we loved him. He gripped his brother’s hand with his left hand and mine with his right as he struggled to breathe. We knew that he was slipping away. The monitors beeped and shrieked, his fingers loosened their grip on our hands, and those beautiful eyes closed. He shed the bonds of the earth and the shell that was his body. We could feel the love and I know that he felt ours.
Goodbye little guy. We will miss you terribly but are comforted by the thought that you are finally free of your handicaps – free to run and jump and do all of the things you were denied here on earth. You were so very special and I am so proud to be your father.
As Brenden said to me in a quiet voice the other night after returning from the funeral home with his mom and dad – “Papa – Uncle Billy is with Jesus.” Indeed he is.