Wednesday, October 28, 2009

Wednesday, October 28, 2009

Tonight's picture features Mattie's last admission to the Lombardi Cancer Center and to the PICU. Mattie was very sick and in a great deal of pain. You will notice a PCA pump on the bed next to Mattie (it looks like a black rectangular bag). In this black bag was IV pain medication, but you can see from Mattie's face that he was miserable. Jenny (one of Mattie's art therapists) worked hard that day to try to take his mind off his pain by giving him a remote controlled dinosaur. This dinosaur remains in our living room, and it is one of the last toys Mattie actually played with.

Poem of the day: The House is Empty Now By Reverend William E. Gramley


The house is empty now, and so am I.
The silence is all around me and penetrates my every step.
If I listen to music, it pierces my soul and brings up tears on its way out.
I see his picture on several walls, giving a momentary glow to days gone by,
filling those rooms with love’s reflections, as I pass through.
I go out and return,
but the routine and the voices beyond this place
cannot come back with me.
I am stripped and searched at the door,
humbled as I lean upon the entrance way.
I may only take the emptiness in.
That doesn’t seem necessary,
since it abides here anyway.
The house is empty now, and so am I.


Some days for me are better than others. Today was a day that I just felt lost and with an inability to understand or even have interest for what the future may hold. That may sound very depressing and grim, but dealing with death and dying issues isn't pretty. Which explains why our society shies about from these complex and heart wrenching issues.

I begin my day, as I do most days, in Mattie's room. I close his curtains each night and open them each morning. Almost as if he were still in the room, accept of course that he isn't there. After I open up the curtains, I usually look around his room and I can't help but see the total chaos of toys and clothes that surround me. Under normal circumstances this disorganization would highly bother me. But I am attached to all of Mattie's things, and right now, they are exactly where they need to be. Each morning, besides looking around, I let Mattie know that I miss him and think of him always, as I can only hope he knows and feels.

My days without Mattie have little to no structure. Sure I could fill my days with things to do, but it wouldn't be the same. I have been robbed of the ability to raise Mattie, and this simple fact angers me and saddens me all at the same time.

As I was sitting down today, I reflected on the fact that on Monday, Ann's dad died three weeks ago, on Tuesday, Mattie died 7 weeks ago, and today was the two year anniversary of Ann's brother's death. This is a lot of loss to process and cope with, and I wanted to somehow acknowledge the death of Ann's brother today. So I went to her house and dropped off flowers, balloons for her children to release in remembrance of their uncle (since this is something I found deeply moving during Mattie celebration of life reception), and one of her brother's favorite pastries. It is hard to know exactly what to do on the anniversary of a loved one's death, but one thing became clear to me, doing something felt better than doing nothing. I feel as if this is one of many things Ann and I connect on, having experienced the untimely death of someone we deeply loved and cared about.

Later in the afternoon, I had the pleasure of doing laundry. Even the mundane task of doing laundry is no longer the same. In fact, without Mattie I have a lot less clothes to wash, and the sheer lack of volume always catches my attention immediately. But the true test for me is folding clothes. It is during the folding process that it is very evident that I have NO little person's clothes to fold, and this is just another example where his loss just hits me hard.

When Peter got home from work, we talked together while I cooked and we continued our conversation throughout dinner. We are making a concerted effort to reconnect, after many months in which we led shattered lives. I remind you that as Mattie became sicker, he did not want to hear any noise. Many times Peter and I landed up text messaging each other back and forth, in order to communicate. Clearly you can see the issues with this.

I would like to share the Mattie tribute that Linda (Mattie's childlife specialist) and Jenny (one of Mattie's art therapists) read at the Celebration of Life Ceremony. They wrote a poem about Mattie, that I feel is priceless and precious. It captures his spirit and his love for life.

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Linda and Jenny's Tribute to Matte


WE REMEMBER MATTIE

When we see a cardboard box
We remember Mattie and ALL of his amazing projects

When we hear the words “apparently” and “shocker”
We remember Mattie

When are at the beach and see seashells and sea glass
We remember Mattie—our little professor

When we see ANYTHING red
We remember Mattie

When people talk about cockroaches
We still cringe—but we also smile and remember Mattie

When we drive by Roosevelt Island
We remember Mattie

When someone bounces in their chair with excitement
We remember Mattie

When we cue up a Scooby Doo movie for another patient
We remember Mattie

When we clean brushes in the art sink
We remember Mattie—and his famous “Boat Races”

When we hear the names Sam, Harold, George, and Steve
We remember Mattie—and his unique limbs
When we’re channel surfing and pass by “Mamma Mia” on TV
We remember Mattie—our PT Dancing King

When we walk into room 9 and see his celestial wall stickers
We remember Mattie and his ability to breathe life into the hospital rooms

When we look up toward heaven and see his ceiling tiles
We remember Mattie

So long as we live, he too shall live, for he is a part of us.
We remember Mattie.
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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, "I am sorry that you are continuing to suffer with these horrible migraines and that they are making your exhaustion worse. I do think that you need the sleep/rest; although the studies show you can't really "make up" entirely for missed sleep, our bodies and minds demand additional rest once the crisis is over. If you look at replacing the time at even a quarter of the time that you spent without it, you need additional rest for at least three months, maybe four. I suggest you look at this time as replenishing your sleep bank account from an enormous deficit which will probably also go a long way toward helping your immune system recover. The other piece here is that emotions, particularly strong ones, also take their toll on your energy level. You do need to talk about Mattie and to share memories but those conversations come with strong emotions and that also saps your energy. For today, remember that all work, whether physical or emotional requires rest for recovery and that even the Almighty took a day off and give yourself the same gift."


The second message is from a fellow RCC mom and friend. Danelle wrote, "Thank you for posting everyone’s tributes from Mattie’s service. I wasn’t able to attend so I was grateful to be able to read what everyone had to say about Mattie. Today I was at Starbucks, and a friend from our neighborhood came up to me to tell me how sorry she was about Mattie, that she’d been meaning to tell me but hadn’t had a chance. So many people have been touched by Mattie (this particular woman went out of her way to lend me a table for the Mattie Walk). He is not a boy who can be forgotten. It seems that even people who never met him in person have found little places in their hearts for him."


The third message is from a fellow SSSAS mom and friend. Liza wrote, "The other night, just as we were getting ready to eat dinner, Tom (Liza's son) said that he had been thinking about some things, especially having to do with God. He had been mulling some thoughts over while in Chemistry. He had been working on a paper about the plague, had been talking with his friend, and he had been thinking about Natalie Richards (Katie's [Liza's daughter] classmate who has brain cancer) and Mattie. He just couldn't understand why God made all these bad things happen. "Why" he asked us, "Can you explain" he said. "So do you think God really has a plan" he exclaimed. Humph, it is interesting to me that a 15 year old boy thinks about these things. It led to a lengthy conversation among the three of us. So you see, my friend, Mattie and your family and others continue to have an impact on those of us around you."