Wednesday, October 14, 2009

Wednesday, October 14, 2009

Tonight's picture features Mattie in our hotel room near Sloan Kettering in NYC. Mattie is beaming from the care package that Linda, Georgetown's childlife specialist, sent him by mail. Linda always knew what Mattie enjoyed playing with and she kept him stimulated for over 13 months. I assure you that was NOT an easy feat. As a cancer patient, Mattie received many wonderful gifts from friends, family, and the hospital. At times I would pause and wonder if it was okay for Mattie to receive SO many things and whether it was also okay to motivate him to participate in physical therapy by offering up prizes and other material incentives. These issues are things parents naturally struggle with when raising a child. But here is my conclusion..... when you are caring for a child with cancer, everyday should be Christmas! I am happy that I allowed this to happen. Every gift made Mattie happy! The gifts brought a smile to his face, and my God if something was going to do this for him through all this torture, then I say bring on the gifts. Some times as a parent you have to weigh the circumstances and therefore make decisions based on those situations. I have no regrets, we denied Mattie nothing, and in the end, if I withheld these objects from him, I would have felt great remorse. I now reflect back on the amount of pain and suffering Mattie contended with, and I have no doubt that not only were the gifts well deserved, but he needed this stimulation of playing with something new each day. Mattie also needed to feel the love from others who generously supplied these items. So with that said, I THANK all of you who so generously brought or sent Mattie gifts throughout the year. Your gifts made a great deal of difference to his quality of life.

Poem of the day: It's Still a Blessing by Alma Malanyaon

Lost in the sea of grief,
Pained by a tragedy uniquely mine,
Hope and meaning seem all gone.
Dark clouds hover each morning,
Speaking of the same heartaches and pains.
Struggling and questioning each passing day
Hundreds of questions to God were asked,
Why God? Oh God,my son,
Whom I love so much!
Then somehow led by the spirit,
To pathways never trod before,
With renewed aware of the breaking dawn.
Live one day at a time they say.
For the journey is indeed long,
And filled with painful memories all along.
Mysteriously, in the secret of time,
Tears and smiles become one;
Pains and joys bring calm.
Shadows of hope taking form,
Strength and willingness to reckon,
To search and no longer to reason.
For somewhere beyond the obvious,
God's love abounds to bring
Peace and comfort, and stillness of heart.
To look at suffering with deeper understanding.
That my own and those of others,
In this world are purifying.
Greater realization of the shortness of life.
Life's so precious, life's so fragile,
Only in love will we find it's true meaning.
Loving and giving, our reason for living.
In generously serving others,
We gain wisdom, strength and healing.
Go on with your life, so to love and to care
For there are thousands of others,
With whom you can share.
Truly in death, there is life
Life for those who continue to make love
The very core of our human act.
When suffering begets such meaning,
It's time to be grateful; For this is a blessing.

Peter and I had the delightful opportunity to meet with Peter Keefe today. Peter K. and his family are huge Mattie supporters and our sons were in the same kindergarten class together at the St. Stephen's/St. Agnes School. Peter devoted over four hours of his time today to us to discuss the creation of Mattie's foundation in depth. I am not sure how you thank someone who so freely gives of his professional time and skills, but what I also love and admire about Peter is passion and commitment to Mattie and to other children who suffer with Osteosarcoma. I felt that we accomplished a great deal in the meeting, and are on our way to completing the necessary paperwork needed to become a non-profit corporation. In terms of our progress, our next step is that we will meet with the lawyers again on Friday to discuss the paperwork in more detail. We want to thank Peter for lunch today, and in the midst of talking about the Foundation, we landed up talking about Mattie. However, it was the nature of our conversation today that truly struck a chord in my heart. I landed up welling up with tears, and I guess I am deeply moved by hearing how Mattie's life has affected others. I am also very appreciative that Peter has the courage to talk so openly with us and is comfortable with me reacting any way that I must at this point to express myself.

In our conversation today, we determined that I should be the president of Mattie's Miracle Foundation. I must admit I am excited and yet very nervous at the same time. I believe with all my heart that something must be done about pediatric Osteosarcoma in our Country, and that Mattie's suffering and death must have a purpose and a meaning. After all this is what motivates me to do this in the first place. But I also realize I have a huge learning curve ahead of me. I am not a trained fundraiser or a business person. I am not saying I can't learn these skills, but I also am aware that I am exhausted and also haven't even begun to grieve. Mostly though what makes this so daunting to me is that I feel the success of Mattie's Foundation is a direct reflection on my love for him. As if my great love for him will naturally make this Foundation successful. Rationally I know this makes no sense, but when dealing with a grieving mom, not much makes sense. I also feel as if the Foundation is a direct link to keeping Mattie's memory and legacy alive. The idea of the Foundation not being successful would represent to me a failure on my behalf. It is almost as if the success of the Foundation is the one tangible thing I have to being Mattie's mom on this earth. When all these overwhelming thoughts float around inside my head, I realize just like with grieving, I have to take this one step at a time, and to be a little kinder to myself.

My parents are leaving Washington, DC on Thursday and are headed back to Los Angeles. Peter and I have appreciated their visit and support. We all went out tonight for dinner, and of course had a some wonderful reflections about Mattie's life and discussed the formation of the Foundation. I will be sharing several tributes with you this week that were made during Mattie's Celebration of Life ceremony. I would like to begin this series with the tribute given by my parents at the ceremony.

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Mattie Celebration Tribute from Vicki's Parents

PopPop’s (what Mattie called Vicki's dad) Introduction:

Good evening to all you beautiful and wonderful family and friends of Mattie. My wife will make the opening comments and I will make the closing remarks. So here’s Grammie.


Grammie’s (what Mattie called Vicki's mom) Part:

When I was asked to speak about my darling, dearly beloved grandson, Mattie, a part of me refused to accept the reality that Mattie died and was never coming back. Grandparents are not expected to outlive their grandson. That is not supposed to happen! It is a violation of the natural order of life. I felt the circumstances of his death were so profoundly painful that I would NOT be up to the task and could NEVER do justice to Mattie’s memory!!

But, then I heard a familiar little voice inside my head say: Grammie, You can do this, I know you can do this! I’ll hold your hand and be right there with you all the way.

Where had I heard those words before? On many occasions, but two events stand out in my mind, had a profound effect on me and so I would like to share them with you this evening. We were on a family vacation visiting Sea World in San Diego. Mattie had a ball visiting all the exhibits, laughed his heart out at the antics of Shamu, enjoyed seeing the animals, the park and all the other lively events. It had been a very good day but as were leaving the park, we came upon the famous Sea World Space Ship sitting on its launching pad. It was ready to be lifted way up into the air where it would revolve 360 degrees so that its passengers could get an awesome bird’s eye view of beautiful San Diego. Mattie was intrigued and wanted to go on it. I urged him to go with his parents but I refused to join them because as I explained to him, I feel very queasy in high places. He agreed but when he came back down, he ran over to me and insisted that I should not miss a wonderful experience like this. He used all of his considerable charm and was quite persuasive. I wanted to say NO but how could I resist him when he said:

Grammie, You can do this. I know you can do this! I’ll hold your hand and be right there with you all the way.

I heard this same appeal in Florida at a zoo for wild animals that had an amusement park. He asked me to join him on the Ferris wheel. I told him the one and only time I ever went on a Ferris wheel, I demanded that the operator stop the ride and get me down because it made me so sick. But he could be a very persistent little fellow, would NOT take NO for an answer, and how could I resist him anyway when he said:

Grammie, You can do this. I know you can do this! I’ll hold your hand and be right there with you all the way.

He won, I lost on both occasions. I ended up on the Sea World Space Ship and took my first Ferris wheel ride after many years. Yes, Mattie introduced me to a world of adventures I might never have experienced without him. He made me confront my fears, and helped me to overcome them with a little bit of good-natured prodding. On our flight to DC on Thursday, we hit a bit of nasty unexpected turbulence that was so bad, the Captain announced that people standing in the aisle should immediately sit on the floor because of the danger of hitting their heads on the ceiling of the aircraft. Although seated I took no comfort in being buckled in, because the plane was acting like an out of control roller coaster, and I could tell that I was on the brink of behaving very badly, and was about to lose “my cool.” Suddenly, but not unexpectedly that little voice echoed the now famous Mattie Mantra once again in my head:

Grammie, You can do this. I know you can do this! I’ll hold your hand and be right there with you all the way

I calmed down and actually did not panic. Mattie would have been proud of me because he would have admired the courage I displayed in handling a frightening experience. I for my part confess that any courage that I have shown on the airplane pales in comparison to what I have witnessed first hand by watching the courage Mattie manifested daily in confronting the torture that cancer put him through for over a year. Mattie in his own way prepared me to be strong enough to cope with the hard times ahead and in some ways knew that there were storm clouds gathering whose ominous threat could not be overlooked. He knew I was a softie and wanted to strengthen me for what he sensed was yet to come. In essence, he knew me better than I knew myself and had an uncanny way of figuring out most people he came in contact with. That was one of his most extraordinary qualities. He could assess character instinctively like a worldly-wise adult, though only a child, and often understood others better than they understood themselves.

Now we must come to the part about his illness. We received an unexpected call from Vicki with the shocking news that Mattie had bone cancer. Mattie was to wage a long hard fight for his life over the course of the next 13 months. Two communities came to their rescue. They are RCC and SSSAS, both schools that Mattie attended. The two school communities along with Team Mattie, headed by Ann and Alison helped Vicki, Peter and Mattie through the stress and trauma of dealing with the hardships of cancer with unstinting support, commitment and unfailing devotion to their cause. I also want to thank the doctors, nurses, child life staff, art and physical therapists, techs and the social worker at GUH who were all united in their efforts to make Mattie as happy as possible during his time in the PICU. It was not an easy task but they were motivated by Mattie’s spunk, energy and love of life to give him every chance to win his battle against the deadly “bone bugs.”

My husband and I also want to thank Tamra, Ellen, Christine, and Susan for making our visits to Washington as enjoyable as possible. All of you provided us with important time-outs that relieved our stress when our hearts were breaking. Thank you all so much.

One last thought: When Mattie attended Resurrection during his first term as a preschooler, he was called “Mattie Moon,” moon for M, the first letter of his name. He identified with the moon from that day forward. One of our favorite games was to look for the moon when night began to fall. Whenever we traveled by car, we’d all look out the windows hoping to be the first to spot the moon in the sky and shout out “Mattie Moon.” Mattie would get so excited he would jump for joy and reward us with that beautiful incandescent smile of his! The moon fascinated Mattie so we never tired of playing the game and because of it we were all moonstruck too! As a celestial body, the moon’s ultimate significance was in its ability to light up our darkened skies like Mattie’s life lit up our world, bringing joy and happiness to all lucky enough to enter his orbit, Is it any wonder that just like the moon lives permanently in the heavens, that smile of his will live forever in my heart?

So it seems only fitting that my husband in his closing comments should reflect on Mattie’s connection to the moon and what it means to both of us now.

PopPop’s Part:

I want to recite a portion of the lyrics from a song that came out in 1938. It’s entitled, “I’ll Be Seeing You”

I’ll be seeing you in every lovely summer’s day,
In everything that’s light and gay
I’ll always think of you that way

I’ll find you in the morning sun
And when the night is new
We’ll be looking at the MOON
But we’ll be SEEING YOU

I want to close with a quote by Carl Sagan. He was a brilliant, famous scientist and astronomer and a man of great intellect. He was born in Brooklyn, N.Y. to a Russian Jewish family and died in 1996 at age 62. He conveyed in his words the impact Mattie will forever have on our lives. He said:

“To live in the hearts we leave behind is never to die.”

Ciao, Captain Mattie. One day we will all be together again and when we are, our game will go on as before with you as our leader.
God Bless Mattie
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I would like to end tonight's posting with four messages. The first message is from Mattie's art teacher. Debbie wrote, "Your precious Mattie was my very first discovery and protégé. No matter what he decided to do in the future, one thing I knew for sure was that he was already an artist, a fine artist."

The second message is from my friend, Charlie. Charlie wrote, "I don't know how you "make meaning" of what's happened. I do know you have to go on without Mattie. Your life is altered, you are on a road you would never have chosen to travel but knowing you and Peter, together you will make something positive happen. You can't rush it though, you have to give yourself time and space to grieve, however your mind/body/soul chooses to acknowledge the loss of Mattie in your life. Someone described early grief as a march through the desert, with few colors and no idea where the oasis is but you keep going with faith that it is there to be found. Today I wish you a space in which to seek where your first oasis might be."

The third message is from a former student of mine. Shari wrote, "Hi, Dr. Sardi. My husband and I came to Mattie's funeral on Saturday, but did not get a chance to offer our personal condolences to you and your husband. From the time I heard about Mattie's cancer, I was touched and fascinated that something so horrible could happen to such a wonderful and caring teacher and mother. I knew that no matter what, you would stop at nothing to get him the best care possible. Clearly you did and that was evident in your blog posts, efforts to raise money and especially awareness about osteosarcoma. My heart goes out to you as you continue to grieve such a huge loss."

The final message is from a colleague of Peter's. Sharon wrote, "Thank you so much for inviting us all to share in Mattie’s beautiful services and tributes on Saturday. I think I speak for many in saying that I wish I could find words to express how immeasurably sad I am that you and your family have had to endure such suffering and loss. But I’m also grateful that you have been so generous in sharing your journey over the past 13 months with your communities. What to you may have been at times a joyful sharing of happy experiences, at others a more difficult and painful reporting of physical and emotional pain, to us it has been a learning experience that we will take with us through our entire lives. We have grown as human beings, as parents, and as a community because of the way you have let us into your lives. This is part of Mattie’s legacy, and we are so grateful to you for sharing it with us. As parents, we know that we are changed profoundly when that little bundle of joy is handed to us and we start out on the journey of learning to be parents. Never again will we see the world without that lens. When we hear of world events we think about their impact on the children of the world. When we hear a happy story about a stranger’s child we laugh and smile with them. When we hear a sad and tragic story about a child we feel an immediate empathy and cry along with that child’s parents. And now you are profoundly changed by the loss of your precious Mattie. Never again will you see the world without wishing he were there to see the good times, wishing you had him to protect from the bad times. This is a new world you now find yourself in, and I hope that the love of your family and your community will help you navigate through it. Although Mattie’s physical presence is no longer in your lives, your role as Mattie’s parents is not over, and I look forward to seeing how it develops in years to come as you work on his foundation and continue the work you have started to educate about and advocate for research into cures for childhood cancers. Mattie truly does live on in all of us: you, his family, the communities that knew him, and those that have come to know him through you."