Mike's Tribute
Father Kilbridge said if I get choked up I just need to STOP and let it subside. I’ll keep that it mind.
Thank you Father Kilbridge for being here today. Sunday when we met with you and you told us you remembered baptizing Max, it meant a lot to us. After that day, the only other time Max met a priest was in the hospital in October when the Blessing of the Sick was performed on him. Life in between these two events was pretty good for Max, but life after the second one was very hard. Thank you for remembering us and for remembering that with a name like Max Alexander it was like Alexander the Great. We certainly thought so.
Thank you also to my wife, my bride, my life, Margaret. No one loved our son more and no one could better speak of his life. It speaks your love and his life that Max could only say two words, “Mama” and “Bye-Bye.”
But my task is not to look backwards, it is to look forward.
The death of a loved one leaves many questions, and the death of a child even more. But we know that “Why Us?” is a trap and that lingering in the past leaves us powerless to seize the moment. And what a moment today is. We will not be able to celebrate our son’s Preschool, Kindergarten, Elementary, High School or College graduations. We will not see him score a goal or win a science ribbon or paint a picture.
We have today. And Max has today. We know what it is to live life day to day. We know what it is like to live like every day might be the last for our son. We know that every day, and in fact, every moment of every day is special. Today is our day to remember and to celebrate our son. We have this time, with these people for whom Max meant so much. Yesterday so many of you saw the boy you only knew in pictures or online. As Margaret said, however, he was real and we loved him deeply. He is gone to this earth but his spirit remains. We hope you saw that last night. We hope that the pictures and the slideshow made clear that while there was great pain, there was also great joy. We hope that we didn’t look too sad. We were too proud to be sad. We cried together before you all arrived and we cried after you left. But in front of all of you, we were proud to show off our son. Our champion.
But all of us who have been touched by Max or by his struggle have the same problem – how best to recall his spirit.
Many people might feel that Max was so chemically controlled that he didn’t even know what was happening to him. Or you may feel that Max lived so long and fought so hard because he was a baby and what else was he going to do? But anyone who ever tried to feed Max a food he didn’t like or made him stop walking around the dining room table knows that Max was determined and in control of his choices. And Max chose life. Again and again. When letting go would have made so much sense, Max chose life. He chose pain and suffering for the chance to live another day. Even with his body rotting from the inside out, he chose to fight from within.
What for? For a mother’s love? For a sister’s hope? For a father’s dreams? We’ll never know. We just know for certain that his will was indomitable, and his heart enormous. Even when the doctors told us that Max’s body would not heal – that his disease and injuries were not reversible, we struggled to say no to such spirit. It was the kind words of an intensive care doctor that helped ease our minds. When we said we wished we didn’t have to make the decision, he said, “Oh no, don’t feel like you have to make a decision, the decision has already been made.” And it was then that we were reminded that there is medicine, there is determination, and there is something else – something untouchable and invisible and in control of the unexplainable.
So it’s what comes next that matters most. Because his choices, and our choices, and his efforts, and the doctors and nurses efforts all have to add up to something.
We received such kindness and charity in our time of need that we have a new understanding of those two words. There is more kindness in an hour of nursing than a lifetime of “good intentions”. There is more charity in a shoulder to cry on than in a lifetime of writing checks.
We lived in a Ronald McDonald House – a house for families of terminally ill children. We imagined that there would be a pall in the air of immense sadness. But the reality was much much different. Instead we felt like we were part of the most loving and caring family imaginable. We were living in the depths of despair but looked around and saw hope. Always. Always hope. For every parent of a terminally ill child there is hope until the very end. You never give up hope, you just change what you hope for.
Today we hope for Max’s impact to last past his death.
We received many emails and notes that Max’s struggle had made people look at their own lives differently. Many people found out they had unknown fundraising abilities. Many people found out how easy it was to send a package or write an email. Many people found that there are great rewards to getting over the “I just don’t know what to say” hurdle. But as Grace told me, “It’s OK, Dad, you don’t have to cry. Bubba’s not sick anymore.” So for the parents who said they are looking at their own children differently and they are appreciating them more, I have to ask, can you do it today? Can you do it with Max above and not sick here on earth?
For people with illness or disease, there is a need for contact. When reaching out there are only two reactions, COMPASSION and PITY. Compassion is love followed by action. Pity is sorrow followed by inaction. Compassion comes from the belief that people live with a disease while Pity comes from believing that they are dying from it. It is our sincere hope that you Max’s death grants us the wisdom to recognize this important difference and to always act with compassion in the face of illness and disease.’ Can you follow example of our daughter, who saw children disfigured and diseased and never asked a question of them except, “Do you want to play?”
Can you never, ever, say to yourself, “I’m sure they don’t want to talk about it”?
The lessons we learned by caring for our son will stay with us the rest of our lives. We will try to be better people, better parents and better friends. We ask today that while the memory of Max will fade for so many of you, the actions he helped you do will stay with you forever. It will be up to us to find permanent and lasting ways to remember and honor our son, and we will reach out to all of you at times to reach this goal. But we ask of you some simple things that are sensible, can be done everyday, and in their own small ways honor our gentle son’s life:
Hug your kids each day. Tight. Take a day off just to be with them. If you are a father, acknowledge the importance of the mother and vice versa. Kiss your wife or your husband in front of your kids. Visit them at school. Thank all of their teachers. Show them love. Show them compassion. Teach them that there are children for whom today is not a guarantee, it is a privilege.
Life is precious. Even one day.
Thank you for this day, Max. Thank you for your lessons. You have all my love. I will miss you forever. Please look down on us from above and help us to live in love.
Thank you Father Kilbridge for being here today. Sunday when we met with you and you told us you remembered baptizing Max, it meant a lot to us. After that day, the only other time Max met a priest was in the hospital in October when the Blessing of the Sick was performed on him. Life in between these two events was pretty good for Max, but life after the second one was very hard. Thank you for remembering us and for remembering that with a name like Max Alexander it was like Alexander the Great. We certainly thought so.
Thank you also to my wife, my bride, my life, Margaret. No one loved our son more and no one could better speak of his life. It speaks your love and his life that Max could only say two words, “Mama” and “Bye-Bye.”
But my task is not to look backwards, it is to look forward.
The death of a loved one leaves many questions, and the death of a child even more. But we know that “Why Us?” is a trap and that lingering in the past leaves us powerless to seize the moment. And what a moment today is. We will not be able to celebrate our son’s Preschool, Kindergarten, Elementary, High School or College graduations. We will not see him score a goal or win a science ribbon or paint a picture.
We have today. And Max has today. We know what it is to live life day to day. We know what it is like to live like every day might be the last for our son. We know that every day, and in fact, every moment of every day is special. Today is our day to remember and to celebrate our son. We have this time, with these people for whom Max meant so much. Yesterday so many of you saw the boy you only knew in pictures or online. As Margaret said, however, he was real and we loved him deeply. He is gone to this earth but his spirit remains. We hope you saw that last night. We hope that the pictures and the slideshow made clear that while there was great pain, there was also great joy. We hope that we didn’t look too sad. We were too proud to be sad. We cried together before you all arrived and we cried after you left. But in front of all of you, we were proud to show off our son. Our champion.
But all of us who have been touched by Max or by his struggle have the same problem – how best to recall his spirit.
Many people might feel that Max was so chemically controlled that he didn’t even know what was happening to him. Or you may feel that Max lived so long and fought so hard because he was a baby and what else was he going to do? But anyone who ever tried to feed Max a food he didn’t like or made him stop walking around the dining room table knows that Max was determined and in control of his choices. And Max chose life. Again and again. When letting go would have made so much sense, Max chose life. He chose pain and suffering for the chance to live another day. Even with his body rotting from the inside out, he chose to fight from within.
What for? For a mother’s love? For a sister’s hope? For a father’s dreams? We’ll never know. We just know for certain that his will was indomitable, and his heart enormous. Even when the doctors told us that Max’s body would not heal – that his disease and injuries were not reversible, we struggled to say no to such spirit. It was the kind words of an intensive care doctor that helped ease our minds. When we said we wished we didn’t have to make the decision, he said, “Oh no, don’t feel like you have to make a decision, the decision has already been made.” And it was then that we were reminded that there is medicine, there is determination, and there is something else – something untouchable and invisible and in control of the unexplainable.
So it’s what comes next that matters most. Because his choices, and our choices, and his efforts, and the doctors and nurses efforts all have to add up to something.
We received such kindness and charity in our time of need that we have a new understanding of those two words. There is more kindness in an hour of nursing than a lifetime of “good intentions”. There is more charity in a shoulder to cry on than in a lifetime of writing checks.
We lived in a Ronald McDonald House – a house for families of terminally ill children. We imagined that there would be a pall in the air of immense sadness. But the reality was much much different. Instead we felt like we were part of the most loving and caring family imaginable. We were living in the depths of despair but looked around and saw hope. Always. Always hope. For every parent of a terminally ill child there is hope until the very end. You never give up hope, you just change what you hope for.
Today we hope for Max’s impact to last past his death.
We received many emails and notes that Max’s struggle had made people look at their own lives differently. Many people found out they had unknown fundraising abilities. Many people found out how easy it was to send a package or write an email. Many people found that there are great rewards to getting over the “I just don’t know what to say” hurdle. But as Grace told me, “It’s OK, Dad, you don’t have to cry. Bubba’s not sick anymore.” So for the parents who said they are looking at their own children differently and they are appreciating them more, I have to ask, can you do it today? Can you do it with Max above and not sick here on earth?
For people with illness or disease, there is a need for contact. When reaching out there are only two reactions, COMPASSION and PITY. Compassion is love followed by action. Pity is sorrow followed by inaction. Compassion comes from the belief that people live with a disease while Pity comes from believing that they are dying from it. It is our sincere hope that you Max’s death grants us the wisdom to recognize this important difference and to always act with compassion in the face of illness and disease.’ Can you follow example of our daughter, who saw children disfigured and diseased and never asked a question of them except, “Do you want to play?”
Can you never, ever, say to yourself, “I’m sure they don’t want to talk about it”?
The lessons we learned by caring for our son will stay with us the rest of our lives. We will try to be better people, better parents and better friends. We ask today that while the memory of Max will fade for so many of you, the actions he helped you do will stay with you forever. It will be up to us to find permanent and lasting ways to remember and honor our son, and we will reach out to all of you at times to reach this goal. But we ask of you some simple things that are sensible, can be done everyday, and in their own small ways honor our gentle son’s life:
Hug your kids each day. Tight. Take a day off just to be with them. If you are a father, acknowledge the importance of the mother and vice versa. Kiss your wife or your husband in front of your kids. Visit them at school. Thank all of their teachers. Show them love. Show them compassion. Teach them that there are children for whom today is not a guarantee, it is a privilege.
Life is precious. Even one day.
Thank you for this day, Max. Thank you for your lessons. You have all my love. I will miss you forever. Please look down on us from above and help us to live in love.
posted by Mike Ciacciarelli
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