Friday, October 2, 2009Tonight's picture features Mattie and Peter standing on the Walkerville train. This train gives families a scenic tour of Maryland. Mattie was very excited to be on the train that day, he loved looking at the countryside filled with cows, and of course running from one train car to the next. I won't forget this day, it was cold and blustery, and yet despite the weather, Mattie had this incredible excitement and energy that made the day seem brighter.
Poem of the day: The Cord
We are connected,
My child and I,
by An invisible cord
Not seen by the eye.
It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.
This cord does it's work
Right from the start.
It binds us together
Attached to my heart.
I know that it's there
Though no one can see
The invisible cord
From my child to me.
The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.
It's stronger than any cord
Man could createIt with
stands the test
Can hold any weight.
And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.
It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.
I am thankful that God
Connects us this way
A mother and child
Death can't take it away!
As I continue to work on photo albums today, I find I am reliving seven years of Mattie’s life. In the process, I can vividly remember when each photo was taken and the circumstances around the story captured digitally. My life with Mattie has been permanently etched into my brain, and each day I replay the pictures and the sounds that used to be a part of my world. In addition, to pictures, as you know I am trying to figure out just what to say at the funeral mass. Typically I am NOT at a loss for words, but when you give me a time constraint of five minutes, I have issues! I want to thank many of you for writing to me and telling me just to speak from the heart, as I do each night on the blog. You too admit that it is almost impossible to capture Mattie in just five minutes, and that I have nothing to prove at this point. I appreciate you saying that, but in my mind, I will always have something to prove when it comes to Mattie. I guess what I am trying to prove now, is different from my mission before when he was alive. Now the mission is to keep his memory alive, to educate others about Osteosarcoma, and though for some Mattie may become a distant and pleasant memory, for me, he will always be forever present. Grieving is definitely about remembering, NEVER forgetting, and it is my mission not to forget, and not to let any of you forget either. Fortunately I feel as if Mattie’s story has impacted a significant number of people, who I feel will join me in this cause and mission. We are now on the mission of remembrance, and I hope you will be brave enough to join me on this quest!
While I am doing these things, and visiting Mary and Sully, many of you are probably asking what is Peter doing today? Let me tell you about his day. Peter started his day off by dropping off a Mac computer to SSSAS (Mattie’s school). Peter met up with Mary, Mattie’s technology teacher, to share some audio files that Mattie recorded one night about a month ago. Night was a relative term for Mattie it was more like 1am! Mattie made up a song about how much he loved me (his Una Moon), and I am SO grateful that Mattie wanted to record this on the Mac computer. So Mary is downloading this audio file and she will include a short clip of it during the slide show. That little song means a great deal to me, and it captures the love we truly had and have for each other. While Peter was dropping off the computer, he met up with several other SSSAS staff members and parents. In addition, Peter could see kids outside at recess playing. Being flooded with all these reminders, in the location where Mattie used to play, was overwhelming for Peter, and he knew he had to remove himself from the school immediately. I can only imagine how he felt, which is why I refuse to even entertain the notion of visiting the campus. It is very hard to physically see children. They serve as a constant reminder of our loss and what we no longer have in our life. In addition, you must remember that we lost Mattie in a very painful and heartbreaking way, these memories still remain in my head. The last five hours of his life has become a part of my thinking, his death wasn’t peaceful, it was harrowing to watch, and I can assure you such visions could cause PTSD symptoms in even the strongest of souls.
If this wasn’t enough for Peter today, he then went to the funeral home to claim Mattie’s ashes. So from my perspective he had a very rough day, and I am happy that Ann suggested he go outside to play baseball with her son and her son’s friend. Fresh air, and a physical diversion are excellent forms of medicine to help combat this deep sadness and pervasive sense of loss. Peter and I have remained at Ann’s house this week. We are both going through a very difficult time, and somehow supporting each other through these times seems to be working for us. I consider myself fortunate that Peter and I have this support, that cancer bonded Ann with us over the past year, and together, we can be honest with each other about our thoughts and feelings.
One of the tasks Peter and I have to do is go through all the cardboard box creations of Mattie’s that are in a closet in Ann’s basement. She has over 15 of these large structures. Some of which I want to put on display at the reception. Nonetheless, I am having trouble getting myself to the closet to look at these items. I know I have to, but it is hard. Each box has a story, each box was a form of therapy for Mattie, each box was a vision he brought to life, and each box attracted on lookers and admirers of Mattie’s in the hospital. These are NO ordinary boxes, and this was NO ordinary seven year old! It is my hope you enjoy seeing these boxes, I believe it would have given Mattie a great deal of pleasure to hear your reactions to them!
The second message is from Jey, Mattie's favorite CT tech and "big brother." Jey wrote, I am writing you this morning to let you know that you and Peter are being thought of and prayed for all in one motion. I have read the blog the past few days and have been truly amazed at what has been taken place with the car seat in your car to Peter's bracelet while sitting at the table and I must admit though both of these are very odd occurences. I think it's best that we look at how Mattie interacted with everyone he cared for meaning, at some point we all got a joke pulled on us but he always let us know that he was thinking about us in his own way even if it was him saying "Can I just be left along for 5 min or Can I just have 10 min to rest?" Mattie always spoke his mind and up until the pain started getting really bad he tried to speak his mind with care but
most importantly he wanted you and Peter to know that he was okay and in my heart this is what he is doing now, just wanting you and Peter to know that he is okay. I have done alot of thinking about what we talked about as far as me leaving Georgetown University Hospital
and you letting me know that it would be a not so good idea due to the fact that other kids will need someone they can trust, but in your words I think it was " Think about all the other Mattie's you could help" and honestly that has stuck in my head ever since you said so. With that being said I spoke with Linda yesterday and asked her how I could go about being a Child Life Specialist and working along side her in helping the kids and parents here in the hospital cope just a little with the horror that they are facing so she told me she would get me all the information that she could find for me so I may not have to leave after all. And that would be a good thing because I feel like I owe my little brother to be here to help any child who comes threw these doors and I believe in my heart that this is what Mattie would want me to do instead of anything else. So I wanted to share this with you and Peter because if it had not been for you raising such a awesome child I would not have known the joy of helping another child outside of my own, so I thank you for allowing me to be a part of your lives and doing what I was asked to do with being who I am to Mattie his big brother for the rest of my life."
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