Sunday, November 13, 2011

Sunday, November 13, 2011

Tonight's picture was taken in November of 2008. In this picture Mattie had just presented Peter with a birthday gift. Since today is Peter's birthday, I wanted to post a picture that captured Mattie celebrating this day. Despite the fact that Mattie was in the hospital, he created a cake for Peter made out of model magic. I remember that Mattie worked on this project with Jenny, Jessie, and Linda (Mattie's art therapists and Childlife Specialist). I wasn't involved in the process because I think he wanted us both to be surprised. Peter still has this cake, it sits on his dresser in our bedroom. It is very hard to celebrate holidays and special occasions without Mattie, which is why Peter elected not to do anything today on his birthday.


Quote of the day: In deep sadness there is no place for sentimentality. ~ William S. Burroughs


Each Fall, Georgetown University Hospital hosts a Remembrance Service for all the children who have died at the facility. This is the third year we have attended this service, and this year, unlike the past two years, we left asking ourselves.... would we do this again next year? As the name implies there is a religious component to the service, but it is more than that because during the event, each of us light a candle for the child we lost, we hear stories and reflections from fellow parents, as well as hospital personnel. Each time we return to this service, we see various staff members who knew us and cared for Mattie. So in a way, this event gives us an opportunity to reconnect with our hospital family.

As we were heading to the hospital to attend the service, I realized I walked out of the house without my framed picture of Mattie. Parents are asked to bring pictures of their child to the ceremony, and for the past two years, I had mine in tow. Today, by the time I remembered, it was too late. As I was sitting in the chapel, I was feeling absolutely horrible for forgetting, and this was making me feel very guilty. As if I disrespected Mattie. It is the little things that can set me off. Denise, Mattie's social worker, was in attendance and she came up to me before the ceremony started and asked if I brought a picture of Mattie because she did not see one on the table. Denise knows I am a picture person, and snap pictures of just about everything, so the fact that there wasn't a picture of Mattie on the table meant something. I am glad she asked me, because when I told her I forgot one, she went to her office and brought her framed picture of Mattie (the one I love with him holding a pumpkin), along with a rock she has with Mattie's name painted on it. She placed both items on the chapel display table. I was deeply touched and that kind and beautiful gesture won't be forgotten.

In the past I have always gotten something out of listening to the readings or the homily delivered by Mattie's chaplain at the hospital. However, today, 15 minutes into the ceremony a family of 10 people, including a baby, walked into the service late. Instead of sitting in the back of the chapel, they sat in the second pew. As they found their way to the pew, they were making a racket, and then once they sat the baby started crying. I am not talking a wimper, I am talking a full blown blood curdling type of cry. This was all happening while the homily was going on. Honestly I have no idea what was being said, because I was more concerned about the baby crying and was thoroughly distracted by the family. Somehow this clouded my whole experience. The baby was finally removed from the chapel, which helped, but that did not seem to help me.

At the ceremony two parents shared their reflections. They both lost their children this year. One woman got up and spoke and then preached to us about getting counseling and why each one of us needs this. I understand her point, but this is not helpful to ALL of us. In fact, I found her very judgmental and I was thrilled when the chaplain got up and thanked her and nicely ended her from talking. The second mom, presented us psalm 23 (the Lord is my shepherd...) and wanted us to understand why it is so meaningful and beautiful. By the time both of them finished, I felt different. I felt as if I couldn't relate to either of them, which only builds up my level of frustration and anger. If people in the "normal" world don't always get me and then people in this "special club" don't get me either, then what? Who gets me?!!!

I was moved by a reflection shared by a medical resident today. She told us she wasn't good at speaking in public, but was better reading her script. So she proceeded to read. At first, her tone appeared arrogant in the sense that she wanted her audience to know that only a small percentage of people can become doctors. My initial reaction in my head was..... SO what, where is this going?............... As she continued talking she then wanted us to know how pediatric patients have changed how she performs medicine. She says instead of memorizing charts and facts, she now remembers Jane, Bobby, or Sue who had a particular issue or disease. In essence what she was saying is that she has humanized medicine. Treating cancer is not just about the protocols and the medicine, it is about the children and their unique personalities and perspectives that they bring into the battle. I was impressed with this resident and I could hear how several of her patients have taught her the true art of being a good physician.

The main highlight of the service for us was hearing one of Mattie's nurses, and a big Mattie Miracle Cancer Foundation supporter, sing a piece entitled, "Who can fly away." Jenny had emailed me ahead of time and shared the lyrics with me, which I posted below. Jenny has a beautiful and angelic voice and sang this song acappella. The lyrics are deeply moving and many of us in attendance were crying while she was singing. The words hit close to home. It is a powerful song, that has NEVER been recorded, but it gives you insight into a child's perspective while battling a life threatening disease. In so many ways, children know when they are dying, and yet we as adults can't accept this reality. Mattie knew he was dying before we did, even before the scans revealed the cancer spread everywhere. What caught my attention about this song is it hauntingly tells you that children with life threatening illnesses want you present with them today (they want you to talk to them, play with them, and be their friend today and to not be treated differently).


Who Can Fly Away? (music by Linda Nolan)

I'll race you to the slide

I'll push you on the swing
The jungle gym's a castle
Where we clap and sing

We like the swinging bridge

We play with Barbie and Ken
We pretend we're getting married
Though I know, I never can

Will you be my friend?

Will you hold my hand?
Who can swing the highest?
Who can fly, fly away?
Remember me tomorrow
But play, play with me today

I think I understand

Why some people are afraid
I don't like being sick,
I'm glad for my friend Faye

Did you take your medication?

She's always asking me
And when you grow up,
What will you want to be?
Remember me tomorrow
But talk, talk to me today

It's true, if you only knew

I have dreams like you!
Maybe I'll be a teacher
Maybe I'll draw and sing
Maybe a nurse or doctor
May be comforting

I might become your angel

If I don't get well
I don't like being different
The way that I'm different
But I want to make a difference
And I will if I get the chance

So I read a lot of books

And I do good in school
I get a lot of presents
And I get a lot of pills

This wasn't my idea

I was born this way
I don't mean to scare you,
I just want to hear you say:

Will you be my friend?

Will you hold my hand?
Who can swing the highest?
Who can fly, fly away?
Will I have tomorrow?

Will I have you today?

After the ceremony, the hospital had a reception for the families. While at the reception, Peter went into the Lombardi clinic and took a picture of Mattie's first ceiling tile that he created in the clinic. The tile is of Scooby Doo, and I remember painting this tile right along side Mattie! As if it were yesterday.

Despite it being Peter's birthday, he chose to go to the Remembrance Service today. We did not celebrate his birthday because he was not in the mood to do this. That may sound odd, but I understand it perfectly. However, I would like to end tonight's posting with a beautiful letter my mom wrote Peter for his birthday. It is entitled, What Makes a Great Father!

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What Makes a Great Father by Virginia R. Sardi

Peter, you are a remarkable man and have an enviable track record to be proud of not only for your allegiance and dedication to Mattie when he was alive but also for the way you honor his memory now that he is gone. From the day he was born, you were a nurturing and ever present role model to guide him through the baby phase of life who later gave him confidence in his toddler years to reach his full potential. You then witnessed your little boy with wonder in his eyes and so much promise go on to St. Stephen's as an excited kindergartner. Those were Mattie's golden years and your fatherly love were a precious part of what made them so special. You gave him a beautiful foundation upon which to build his trust and to develop an appreciation for the world of nature that so inspired the young artist within his soul. You were always there to nurture that creative spirit in him that sought expression. When he was stricken with cancer, he had other resources with which to compensate for the loneliness of isolation from school, buddies, and the normal flow of activities by refocusing on the intrinsic interests in art, nature, and building that the two of you had cultivated together in happier times.

With the creation of the Mattie Miracle Cancer Foundation two years ago that has as its mission the desire to improve and expand the psychosocial services available to pediatric cancer patients, Mattie's heroic battle against cancer has been memorialized in good works for other children stricken with cancer. The success of the Foundation's fund raising efforts this year are further evidence of the seriousness of purpose that both you and Vicki have devoted to achieving a lasting legacy for Mattie through the Foundation.

There can be no better tribute to Mattie, a boy who still lives in the hearts of all who witnessed his bravery against the relentless destructive cancer that was to claim his life in the end, than what you have accomplished in his name! Your dedication to the preservation of his life story through the Foundation is what puts you in that elite class of men who can be called great fathers! Happy Birthday and many more!!!