Tuesday, September 29, 2009On July 23, 2008, Mattie was diagnosed with Osteosarcoma. This was a solemn day for us, and even though it was the summer, Mattie wanted to decorate our deck as if it were Christmas time. So we transformed the deck instantly, and we enjoyed the lights for many months. This seems like a fitting picture, since today marks the three week anniversary of Mattie's death.
Prayer of the day (thanks Charlie!): We Remember Them by Rabbis Sylvan Kamens and Jack Riemer
At the rising of the sun and at its going down, We remember them. At the blowing of the wind and in the chill of winter, We remember them. At the opening of the buds and in the rebirth of spring, We remember them. At the shining of the sun and in the warmth of summer, We remember them. At the rustling of the leaves and in the beauty of autumn, We remember them. At the beginning of the year and at its end, We remember them. As long as we live, they too will live: For they are now a part of us, As we remember them. When we are weary and in need of strength, We remember them. When we are lost and sick at heart, We remember them. When we have joy we crave to share, We remember them. When we have decisions that are difficult to make, We remember them. When we have achievements that are based on theirs, We remember them. When we fulfill their dreams, and our own, We remember them. As long as we live, they too will live: For they are now a part of us, As we remember them.
In addition, to working on photos, I am also writing a statement, for the day of the event. There are times that writing about Mattie just sucks the life out of me. In fact as I was writing today, and reliving a story in Mattie’s life, a wave of deep sadness and loss came over me and therefore I cried. As I try to accept the reality of this profound loss, I find myself so lost and at times down. Nonetheless, I think people are used to seeing me together, and therefore when I look like I am falling apart, no one knows how to deal with me or respond. After all, what do you say when someone just lost their most priceless part of her life? You say nothing! You just are present, sit, and listen. That from my perspective is the greatest gift you can give someone who is grieving….your time and support. Sometimes words mean nothing, but holding a hand, a hug, or quietness together helps. Or at least this is what helps me.
This afternoon, I went to visit Mary and Sully, and also had the wonderful opportunity to see Margaret and Tanja. Living in Alexandria City with Ann for the past week, has opened up my world just a bit, because in DC, it is very easy for me to completely isolate myself. Thank you Margaret for the visit, the lovely fruit, and special desserts. Mary and I are both enjoying these treats! While Margaret was visiting, I made a phone call to the church where we are hosting Mattie’s funeral. We have been having a difficult time getting a hold of the person at the church who helps plan such events. Peter called him today, and had a challenging interaction on the phone. When Peter got off the phone, he called me and told me the story. I was in NO mood for any of this today, and decided to pick up the phone myself and deal with this fellow. I can be a nice person, but when I have reached my breaking point, watch out. I spent five minutes on the phone chewing this fellow out. I also felt the need to remind him that he is dealing with parents who have recently lost their 7-year-old son. Therefore, I expect some empathy and flexibility and if he couldn’t provide this to me, then I was finding another church that would. After my tirade, he changed his tune and we are meeting with him tomorrow afternoon. I am not sure why something that should be healing and peaceful, should be so complicated, stressful, and unsettling. When I have to explain to a member of a church how he should be behaving with a grieving family, I think we have a real problem. Don’t you think?!
I know some of my readers are fascinated by the stories I am reporting on the blog, especially the car seat story. Well Peter last night shared with me what happened to him yesterday. He was sitting at Ann’s kitchen table, and all of a sudden his “livestrong” bracelet that he has worn for months, just snapped. But it snapped in a very strange way. It wasn’t worn or torn, but the bracelet literally popped open between the words, Live and Strong. I have yet to really understand the meaning behind this, but I interpreted this as Mattie making a statement, that he has broken free, and now is indeed living Lance Armstrong’s motto, Live Strong!
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I know that making this service will be difficult but I believe that you will find the right people to make it happen as you wish it to; they will show up and you will know that he or she is the right one for the job. I too believe Mattie's spirit is around and trying to communicate with you; as Dr Snyder said, he is trying to tell you he misses you too but that he is no longer in pain. Perhaps it is as it might be before we were born, we think the womb is the whole world and that we are dying when we are born because no one comes back to tell us otherwise. Loving arms await us and welcome us into this world; perhaps our transition to the next world is the same, once again, we think it is over and loving arms await us once more."
The second message is from my mom. My mom wrote, "Time heals and heartaches like spirits disappear unseen into the night as the world inexorably turns and the future unfolds as it was written in the stars. Well meaning friends and family have reached out to comfort me with time honored advice passed on from one generation to the next to suggest how to deal with the pain caused by the death of a precious loved one like Mattie. The valiant struggle that Mattie waged to survive his battle with cancer is over, so goes the thinking, as should the time for personal grieving now that Mattie has found peace and is in a far better place. Grief, tears and pain, carried to an extreme, cast dark shadows over the precious memory of a life that though short lived can best be remembered by the feelings of happiness invoked in others touched by his creative passion for life and the charismatic magnetism of his personality. Like the sun, no heart remained untouched by the energy he radiated with his quick mind, competitive spirit and enterprising pursuit of game strategies that gave “playtime” a new meaning, not seen at GUH or anywhere else for that matter, ever before or since. It is not an overstatement to declare that he was a genuine original, marched to his own beat and had a uniqueness that might never be seen again! Jenny and Jessie, Art Therapists at GUH, encouraged Mattie’s artistry when he was a patient there. Recently they invited his buddies Jocelyn, Brandon and Maya to the Clinic to do an art project to honor Mattie. No doubt Mattie was looking down giving his approval and making his presence known by making subliminal suggestions to his friends to be sure to get his ideas included! His memory will always tug at our heartstrings long after his personal battle with cancer has become history, because his resilient spirit lives on in those he left behind and remains a testament to the impact his courage had on all of us. It is only natural for me to feel unrelenting sadness and pain that is bound to cloud the beautiful memories of happy times shared with Mattie, for etched in my soul, hauntingly and provocatively, is the image of Mattie facing death with dignity like a man , though only a small child. It tears me apart to think of how stalwart, brave-hearted and noble he was never to whine, demand sympathy or pity when going through the worst tortures of life though only an innocent child who deserved a better fate. Mattie redefined heroism and will always be remembered for his superhuman courage and strength even in the face of death."
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