Sunday, October 18, 2009

Sunday, October 18, 2009

Tonight's picture features Mattie dressed as a clown. The Lombardi Cancer Center at Georgetown arranged for private box seats at the Verizon Center in Washington, DC, in order for Mattie to see the circus. This was Mattie's first and last visit to the circus. He went with Peter, myself, and his grandparents. In addition, we met up with Brandon (Mattie's big buddy) and Toni (Brandon's mom) at the circus, and Brandon gave Mattie the red clown nose. This was a night to remember for Mattie. He had a glorious time, and I can still recall his smiles and laughs from that night.

Poem of the day: Tears and Rain
I look out
On tears of gray
Falling throughout
Another long day
The hissing sounds
Of falling rain
Call to me and
Reflect my pain
I miss you
With every breath
And fear that nothing
Will fill the emptiness
I cannot move
I will not see
Those empty days
Stretched in front of me
Take my hand
And help me ride
Out the waves
Of sorrow inside
Until I can stand
And see some joy
In the memories of
My beloved boy.

I want to begin tonight's posting by thanking all of our faithful blog readers. I am very well aware of the fact that you continue to check in with us, and I am amazed that Mattie's blog is visited 500 times or more in any given day. Mattie's gift of community is still alive and present, so much so, that even in his death, we are all still bonded together. That to me speaks volumes about Mattie and about all of you. I also appreciate all the supportive e-mails and the offers to meet for a meal and chat. I realize for the most part I am turning down most of these lovely offers because I am just not ready for them. It is my hope however, when I can start letting people back in (and I have no idea when I will be able to do this), these offers will still stand. As I am sure you can imagine, I don't know if I am coming or going on most days, and some days I wonder if I will ever feel the same, or simply FEEL anything.

As I sit tonight and write this blog, I am very aware of the fact that Peter heads back to work tomorrow. Peter has taken two and a half months off from work. What an amazing and loving company Voxiva has been, and I feel somewhat comforted to know that we have no regrets in the amount of family time we were able to spend with Mattie up until the end of his life. Mattie really needed Peter's presence, and the three of us really needed this time to say good-bye. The time away Peter has had from work, has helped us to begin to grieve, but grieving the loss of a child is not easy. It isn't resolved in a week or two. In fact, I beg to say that it may not even be resolved in a year or two. We have a lifetime of grieving ahead of us, of which now I would imagine will be the most painful. I try to put myself in Peter's shoes, and I just admire the fact that he can pull himself together and go back to work tomorrow. I know this is NOT easy for him either!

Working is a fact of life, but I am so far from accepting any reality right now, so much so, that I continue to isolate myself. I have yet to do things that I once did prior to Mattie's illness. Such things that connect us with the outside world, such as reading a newspaper, watching TV, talking on the phone, etc...... In fact, I have no interest in what is happening in the world around me. For example, tonight, Peter was on the phone with his brother and they were talking about the baseball playoffs. Now I admit I was never a sports person to begin with, but tonight hearing this conversation made me just shake my head. The dialogue in my head was, "who really cares how the Yankees are doing, or any other frivilous team for that matter!" In fact, unless you chat to me about serious life issues, a part of me seems to just shut down. I do listen, I do care what others are saying, and I am trying to feel impassioned about things that matter to others around me, but that is just it, my passion has been extinguished.

Tonight, Peter and I went over to Ann's house for dinner. Abigail was proud to show us her Lego train that she has been working so diligently on. She feels that Mattie would have been happy with her selection and thrilled with her skills. I agree! It is interesting to see how Abigail is processing her grief through her connections with Legos. It amazes me just how therapeutic Legos have been. I know they were Mattie's saving grace. Peter and I are very thankful to have Ann and her family in our lives, because they are helping to draw us out, but also are allowing us to feel whatever we need to feel at any point in time. It is very special to be included in Ann's family, and at the same time, it also illustrates to me what I am missing in my life. I am missing Mattie, my child. When you lose your child, nothing makes sense anymore, and there are times when I tell Ann that I feel not necessarily jealous, because I don't want to ever feel this way about something that brings my friend love and joy, but I do feel like I wish I had what so many of you have. The luxury of having a child in my life, not any child, but Mattie. I realize the daily grind and schedule of parenthood are impossible, I lived it! But having a child is not only a responsibility of great proportion but it is a luxury. A luxury, because at any point in time it can be taken away from you, and then like so many luxuries in life, you have to figure out how to live without it. Unlike other luxuries which are expendable, a child isn't. So my message tonight is, get yourself out of bed, or shut off the TV, stop surfing the net, put down your book, or whatever is applicable in your world and go peek in on your child. Give him/her a hug or kiss, and if your child doesn't live in your house, then send him/her a text message or e-mail. If you think I am joking, then let me assure you, I wish I had the luxury of Mattie down the hallway from me right now.

I would like to share the Mattie tribute that Kim Messinger (Mattie's preschool director) delivered at Mattie's funeral last week. Kim delivered a beautiful and meaningful message, which will remain with us always.

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Kim's Tribute to Mattie

Hello. I’m Kim Messinger, and I’m the Director of Resurrection Children’s Center.

Four years ago, at our annual Open House where we open up our school to parents who are interested in enrolling, one of the teachers from the three year old classroom came and found me. “There’s a mom down in the Pretend Room with a lot of questions,” the teacher said. “Could you come talk with her?” Well, I’m sure it comes as no surprise to any of you that the mom with all the questions was Vicki. I talked with her a great deal that afternoon, she came back another day with Mattie for a visit, and apparently we passed muster. Because the following fall, three year old Mattie joined us. And, happily, he thrived in our school -- a place where he was cherished for the incredible little guy that he was.

But we didn’t get just Mattie. No, Mattie’s family was a package deal and Vicki and Peter wove themselves – tightly – into the RCC community as well. And they made it a better, stronger place for children and families to be. Vicki became a forceful and proactive member of our Advisory Board. She advocated for and participated in our weekly visits to Goodwin House, our next door retirement community. If you needed help, advice, counsel, Vicki was there.

And Peter, too. He led our school through a much needed strategic planning process. And he loved to be a parent helper in Mattie’s classroom. One of my favorite photographs, one that made it into our most recent brochure, is of Peter, outside in the courtyard, surrounded by children, cracking open coconuts so everyone could feel, and smell, and taste something new and different.

Like all of you, over the past year and most especially over the past weeks, my thoughts have dwelled with Mattie and with Vicki and with Peter. And when Vicki asked me to share some of those thoughts at this service, I was equally honored – and terrified. Terrified of not getting it right. Of not finding the right words.

But eventually, I shared with Vicki that I had come to appreciate the very hard task of speaking today. Preparing helped me focus my thoughts – helped me better understand what I was feeling – and begin to come to come to grips with this tremendous loss in all our lives.

Because what happened to Mattie simply isn’t fair. Folks in early childhood education talk a lot about just what the “work” of children is. Well, the work of young children is to play, and to learn, and to live. Not to die.

Folks that work with young children always wonder what a child will be like 5 or 10 or 15 years down the road. We laugh and make guesses. What will he accomplish? Who will he become? And it just isn’t fair that we can no longer wonder what the future holds for Mattie.

For some of us, this might be the first real brush with life-changing tragedy. Others of us may already have felt the loss of innocence that comes with the knowledge that there are some things we simply do not have any control over. The knowledge that bad things can, and sometimes do, sneak up on us.

So how do we deal with all this? I’m sure most of us have cried. I suspect some of us have howled with anger, or retreated into ourselves to nurse the hurt.

But today, we deal with it -- like this.

We come together. We come together and we coax the joyous memories hiding behind the disbelief and pain – out of each other. Memories of a little boy who could be so stubborn – and so sweet. Who loved to race across a playground – and to sit quietly and listen to a story. Who loved to build pirate ships, paint pictures, and tell horrendous “knock knock” jokes. A boy who could drive his teachers a little crazy one moment – and enchant them the next.

Yesterday afternoon, Mattie’s first teacher at Resurrection Children’s Center, emailed me the words she has struggled to write about Mattie over the past couple of weeks – the words Margaret plans to share with you at the celebration of his life later this afternoon. And as I read, I cried. But even with the tears streaming down my face, I realized that I was smiling, too. Because Margaret’s words helped me remember some things I had forgotten. They helped me “see” Mattie again. And that made me happy.

My youngest daughter was one of Mattie’s teachers during summer camp. And late last night, Caitlin drove home from college because she felt such a strong need to be here today. We sat together on my bed and talked about Mattie. And we ended up laughing. I remember, so clearly, how Mattie loved to build pirate ships. But until she shared it with me, I hadn’t known that every day for two straight weeks, he had “forced” Caitlin to “walk the plank!”

We often hear, and many of us say, that it takes a village – a community – to raise a child.

Yes.

But perhaps it is even more important to understand that it takes a village to care for a dying child and his family. It takes a village to grieve for that child. And it takes a village to shape, hold and share the memories that bring hope, and eventually, peace.

I am awestruck, and humbled, to be standing before such a village.

At Resurrection Children’s Center, the children sing a special song just about every day.

(Note: Kim actually sang this portion!) Oh Mr. Sun, Sun, Resurrection Sun
Please Shine Down On Me…

I believe that Mattie is now a part of the Resurrection sun – and all the suns that fill all the skies everywhere.

Mattie, because we knew you, you will always be a part of us. May you shine down on us, help light our way, and warm us – forever.

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I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "Dr Snyder's tribute to Mattie was beautiful and inspiring. Her respect for who Mattie was as a person, beyond his status as a patient speaks to how we all hope those who treat our illnesses will see us. Mattie made us all see him as a unique individual, full of life, passion, courage and warmth. How difficult it must be on this day that seems so gray and lifeless to be without your Mattie sun/son to warm the moments. I carry Mattie's sun picture in my mind's eye and in my heart and I find it helps dispel some of the heaviness of a day like today. For today, find some space to reflect on how so many people carry pieces of Mattie that they will share with you when you have trouble finding your own positive memories."

The second message is from one of Mattie's favorite babysitters. Emily wrote, "I just wanted to let you know that I have been thinking of you. The funeral mass and reception were absolutely beautiful. I was so glad that I was able to get the chance to give you and Peter a hug because I have been unable to do so for so long. My eyes did not fully dry until hours after we had left D.C. The picture slideshow really touched me and I was weeping throughout the entire show. I was not surprised that there was barely standing room at the reception as the amount of people there were only a small sample of the population of people touched by Mattie. You and Peter created a loving community through bringing Mattie into this world, and although he is not physically here with us, he lives on in the hearts of this loving community brought together because of him."

The final message is from one of Mattie's outstanding HEM/ONC nurses. Miki wrote, "What a beautiful mass it was last Saturday. Every single moment of it was so beautiful and holy that it brought me to tears. It was truly the mass for Mattie, for beautiful Mattie and I definitely felt his presence. Although we could not see him, he was definitely there during the mass. You two looked absolutely beautiful and glowing as well and I again felt the unbreakable tie among the three of you. It was so special... The reception after the mass was very enjoyable as well. It made me realize again how talented and creative Mattie was. I remember his art work always amazed me. He had such a unique perception on even the little things, and expressed them in his own unique ways. I was always impressed by that. They were truly amazing to me. I recognized a lot of his works that he did during his stay at Georgetown. Each one of these pieces made me flash back to the day that he made them in the hospital. I clearly remember those days. They were just like yesterday... Vicki and Peter.... again, thank you for giving me the opportunity to take care of your amazing boy, Mattie. It was such a honor to be in some part of his life, and thank you very much for the opportunity to get to know two of you. You two are amazing parents of which I don't come across every day. You two made such a big impact and caused me to think twice about life itself. Please take care of yourself. I know you will face some challenges in your lives for a while, but it won't be forever. You two together definitely will clear those challenges."