Tonight's picture was taken in March of 2005. Mattie was three years old and we captured him doing something he RARELY did, which was taking a nap. In fact, this was so HIGHLY unusual for Mattie, that I can safely assume that Mattie had to have been sick at the time. What I like about this picture is it seems to capture the innocence of Mattie, the beauty of being three, his sweet face, and the peacefulness of that moment.
Poem of the day: Mattie Moon by Charlie Brown
Every month
I watch the moon
It reminds me
That you left too soon
Last night I saw
That moon so bright
I hoped it would dispel
Grief's shadows with its light
But as always
It simply shone
And reminded me
I am alone.
The poem "Mattie Moon," or so I have renamed it speaks to me. It reminds me how often I look to the night sky, stare up at the moon, and think of Mattie. Though this brings a smile to my face, it also is bittersweet. It is bittersweet, because it is a constant reminder of who is greatly missing in my life. Or as Charlie accurately states it, it reminds me that "I am alone."
I received a lovely e-mail today from Maya's mom. Some of my regular readers may remember Maya. Maya was one of Mattie's buddies at the Lombardi Cancer Clinic. Maya was Mattie's age, and in fact, she was the only friend that was in his age group that he spoke to in clinic. Mattie's other two close buddies, Brandon and Jocelyn, are older than Mattie. Maya has a spark about her. She is bright, creative, and knew how to handle herself with Mattie. In fact, they would create and act out plays together in clinic and design their own props. Adina, Maya's mom, told me today that Maya and Jocelyn still meet at clinic and play together. This made me very happy, since in some ways, I would like to think Mattie connected them together. Maya continues creating and acting out plays, and Jocelyn has filled Mattie's void. Together they have created the planet of Oogabalooga, in which Maya is the President and Jocelyn is the Vice President of the planet. The only ALLOWED visitor to the planet is Mattie. This would have been a game right up Mattie's alley! The name of the planet makes me smile, because it is a take off of Mattie's saying, Oogabooga! Which in Mattie language meant, "I love you." So in essence Maya and Jocelyn have created a planet of love, and I find it fascinating that only the three of them can inhabit it. It seems to be saying something to me about the power of friendship. Friendship transcends death. That you can still have a closeness with someone who you physically don't see and isn't present in your world anymore. Somehow I find Maya's play very thought provoking to me, which isn't unusual, since Maya like Mattie, is very intelligent and sensitive.
I am thrilled to learn that Brandon, Jocelyn, and Maya will all be at the Walk this year, and I know Mattie would be so happy to know his three Georgetown buddies continue to think of him, and support him and the cause of the Foundation.
Tonight, Peter and I were invited by Tamra (our friend, a SSSAS mom, and MMCF board member) to attend The National Coalition for Cancer Survivorship's (NCCS) 2010 Rays of Hope Gala. Tamra was the chair of the Gala committee as well as a member of NCCS' board. Tamra was a gracious host, and though she knew many people in attendance (about 400 people), she never left our sides. I can not tell you what an impression that made upon me. Going to public events is challenging for me, and somehow Tamra understood that, and supported us the entire way. The picture on the left was taken by Peter before we headed to the gala tonight.I learned tonight that NCCS can be credited for changing the nomenclature from cancer "victim" to cancer "survivor." The organization has changed the cancer community's definition of a survivor. A survivor is someone from the time of diagnosis, throughout the cancer process, and beyond. That was really a new way of thinking for me, since in my mind a cancer survivor, is just that, a person who has completed treatment and survived. But NCCS is indeed correct, having lived through the diagnosis and treatment stages, I can say Mattie was a survivor. A survivor who fought for his life, each and every day. A little boy with courage and determination to live. If that is not a survivor, I don't know what is! However, NCCS puts words to my feelings. In that they would consider Peter and I both survivors. As Mattie's caregivers, we too survived the diagnosis and the process. I truly believe that you might as well have diagnosed me with osteosarcoma in July of 2008, because I lived, breathed, and felt every chemo treatment, every surgery, and even felt what death must be like. I am indeed a cancer survivor, and I am happy to find an organization that effectively acknowledges the importance of the cancer caregiver! The visual for tonight's gala, was one yellow umbrella in a sea of blue umbrellas. The yellow umbrella symbolizes a ray of hope! However, caregivers were constantly referred to tonight as the cancer patient's umbrella. How well stated! Because like an umbrella, a caregiver protects one from the elements. It was a beautiful analogy, and as I heard many survivors talk tonight, several of them acknowledged the importance of having family members and friends shelter, love, and support them during their battles.
The irony is, I am a cancer survivor, and though I may have been Mattie's umbrella, I was blessed enough to have been given many wonderful friends who carried an umbrella over me. In fact, there would have been no way I could have managed being Mattie's umbrella, without having a network of people holding one for me. It is important to acknowledge Team Mattie. It is a Team I will never forget, and instead hold within my heart.
Tonight's gala was very powerful for me. I cried many times. I found what speakers were saying very moving. I was particularly in awe of how people struck with cancer, were able to rebuild themselves, into stronger and more passionate individuals. That caused me to take notice. In fact it was inspiring and daunting all at the same time. I think what upset me however, was I will never get to see Mattie being able to say "I had cancer, fought it, and you can too!" During dinner, I sat between Tamra and Rep. Patrick Kennedy (D-RI). Next to Patrick was his sister, and next to his sister was sitting Ted Kennedy, Jr. Patrick and I had a lovely conversation, and he is a huge advocate for mental health parity and for the importance of integrating mental health services in cancer care, so that a patient is treated holistically. Needless to say, we were talking the same language. After the event, we did speak with Ted Kennedy, Jr. We actually were connected by phone in 2008 to Mr. Kennedy, thanks to Danelle (a RCC mom and friend). Mr. Kennedy remembered talking to us, and was saddened to hear about Mattie. Mr. Kennedy is an osteosarcoma survivor, and he agreed with me, hearing stories from others tonight, was hard to listen to at times.
We received two books at the gala. The first one is entitled, True Compass. It is a memoir on Edward M. Kennedy's life. This book and the life of Senator Ted Kennedy were acknowledged tonight with an award. Before the award was given to his children in attendance, the audience got to see a video of Senator Kennedy before he died. The video was charming and touching, and Senator Kennedy mentioned in the clip that when he was growing up, his dad said to him he had two choices in life. One choice was to go out and do something with his life and have purpose, and the second choice, was basically to be unproductive and waste one's life. He said that night, as he was trying to fall asleep, he committed himself to the decision to live his life with purpose.
We also heard from Arch Campbell tonight as well. He is a well known broadcaster in the Washington, DC area. Mr. Campbell explained how he is a colon cancer survivor, and at the time of diagnosis was assigned a buddy, who had gone through the treatment process and was living proof that he too could do it. Mr. Campbell talked about the power of peer support. As a mental health professional I completely understand the importance of being heard, and to have the support from others who share your concerns and issues. However, as Vicki, Mattie's mom, this type of support did not work for me at all. I attended two support group meetings at the hospital (which I advocated to have established), but what I found was Mattie's cancer was very different from the stories I heard other parents reporting. This made me an outlier in the group. I found many times that I further depressed people in the group. Which of course was not hard to do, Mattie's situation was grim and his prognosis was poor at best. Perhaps in time, I may reconsider a support group, but the plain reality of the situation is I can talk to a group until the cows come home, it isn't going to change my circumstances. Mattie died, and my life is in shambles. No amount of talking is going to heal that wound. Sure it would be nice to know I am not alone, but from the other mom's I occasionally connect with through e-mail, who also lost their children this year, I see we are all having difficulties.
My mom sent me this beautiful message last night, and I wanted to share it with all of you. It is entitled, "I remember you."
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I Remember You By Virginia R. Sardi
When I think of your little hand holding mine,
I remember you,
And how you led the way to new adventures with every step in laughter and high spirits,
I remember you,
Takes me back to the day at Gymboree when you were just turning one and were fascinated by the teacher blowing bubbles in the air,
I remember you,
The teacher asked the class to say the word “bubble” and while you were multitasking focused on popping every bubble that came your way, your eyes lit up and loud and clear, you were the only one who yelled out “bubble” without skipping a beat to everyone’s amazement,
I remember you,
When you held my hand so tightly to calm my fear of heights up high in the Florida sky on that scary Ferris wheel,
I remember you
When I think about the hours at the window looking down on Route 66 watching traffic patterns on the highway and in the sky, it was very clear your passion for moving vehicles was basic instinct built right into your DNA so it came as no surprise that your natural talent as a driver behind the wheel of “Speedy Red” was awesome,
I remember you,
Whenever I see a stray penny on the ground, I reach down to pick it up and save it as a special treasure since you had the gift of the “eagle eye” and never failed to find one or two on every outing making it a tradition that I continue to this day,
I remember you,
So Mattie even if I can’t see your beautiful smile or hear the sound of your melodic voice, you will be alive in my heart each and every day, cause
I will always remember you!
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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I found this poem after seeing last night's Mattie Moon. I do so wish Mattie were still here to enjoy the sight of that moon with you. I know it was helpful to Mary to have you there yesterday to talk to; as you said, each new loss brings back memories and feelings of previous losses. Of course you are envious of those who still have their healthy children around them; that is quite natural.You don't want to take their happiness, you just wish you also had that opportunity, as we all wish for you. It seems the walk is coming along well; I can't wait to hear what the "tag line" for the foundation will be. As I practice today I will send you the energy for a day with some spaces of serenity and peace in it. I hold you gently in my thoughts."
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