Tonight's picture was taken in April of 2005. Mattie had just turned three years old. One of Mattie's favorite things to do was to play with trains. He loved arranging the track and creating different configurations. I must admit prior to having Mattie, I never played with a train, nor did I have the foggiest notion how to connect the wires of electric trains. However, Mattie taught me the art form of playing with trains, and thank goodness, Peter understood the mechanics of those set ups. Got to love the smile on Mattie's face in this picture!
Poem of the day: Softer by Lana Golembeski
The grief lies quietly,
Beneath the surface of our souls.
It follow us around like
An unwanted shadow.
It is cunning.
It doesn’t strike like it used to.
But it strikes like a ghost;
Hidden, unseen, unpredictable.
It lies just below the surface;
Following us everywhere we go.
It never leaves us.
It does not hit like it used to;
Putting us in the fetal position.
But it is unrelenting
Gnawing at our heart and soul;
Eating at us slowly, but surely.
It shadows our very lives.
It never leaves us alone.
It constantly reminds us of our forever loss.
It is a softer grief;
But it never, ever, goes away.
Today marks the 29th week of Mattie's death. It is hard to believe it is another Tuesday. But not just any Tuesday, it is the Tuesday before Mattie's birthday. Mattie would have been 8 years old this Sunday. I have to tell you, I always knew there was the possibility Mattie wouldn't make it, but I had no idea while celebrating his 7th birthday, that he wouldn't be here with us this year. Can you imagine this happening to your child? Most likely the answer is NO! Peter and I are trying to figure out how we want to acknowledge Mattie's birthday. In a way, having Mattie's birthday fall on Easter this year, is a blessing and a curse. It is a blessing I suppose because of the religious significance of Easter. However, it is hard to separate the religious holiday from Mattie's day. Perhaps they are meant to be intergrated. On one hand, it should be a day of rebirth and renewal, yet in my heart this is not how I feel. It would be easier to retreat that day, but I am not sure in the long run that is a good solution.
Peter and I are working with Linda (Mattie's childlife specialist) at Georgetown University Hospital to coordinate a drop off of "Mattie" toys for the children at the Hospital this Friday. I remember how a new toy delivery energized Mattie, and I am hoping that Mattie's unopened toys will bring this same joy to others. It seems fitting to give gifts to others on Mattie's birthday, because his life was our greatest gift.
I went today to get my hair cut. Seems like months go by, and I don't think about these things anymore. The person who has cut my hair for years is a very special lady. She owns her own business, but has a heart of gold. She helps her employees who have cancer, she gives them financial and emotional support, and she even offers her home to those who do not have a place to live. When we talk, and I catch up with her, she always has fascinating stories to share. However, what I admire abouat her is that she doesn't do good deeds to be acknowledged, instead, she does them because this is how she was raised..... to follow her heart. It is a part of her life, and giving to others clearly makes her feel alive. You have to admire a person like this, because it is unusual to find such altrustism. In any case, when I meet with her, I not only get my hair cut, but as I told her today, I feel she restores my hope for the human race.
This afternoon, I met up with Ann, and while having lunch we discussed the upcoming March for a Miracle walk on May 23. Peter and I are committed to this event, but I assure you given the year we have had and are having emotionally, staying focused is a challenge. I will announce tomorrow who the Keynote speaker will be. We finalized this today, and I am very excited to share this information with you. So stay tuned. We welcome anyone who would like to participate in the planning of this walk to contact us (mattiemiracle@gmail.com).
This evening I was invited out with dinner with Jerry and Nancy. They were two of Mattie's favorite musical volunteers at the Hospital. You may recall they did a "name that tune" game with Mattie that he loved so much. Jerry introduced Nancy and I several months ago to a Washington tradition, the Mighty Mo (a special hamburger) at the Key Bridge Marriott. Each time we get together, we meet at the Marriott, and we seem to pick up right where we left off. Tonight's conversation, as always was stimulating and down right hysterical! In a week that seems very solemn and sad, it was nice to forget my issues for a while and just laugh! Jerry and Nancy are two fine examples of the support system we developed at Georgetown. A support system which we couldn't have lived without during the battle of a lifetime.
I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I can only imagine as this Sunday approaches how difficult another holiday and Mattie's birthday will be for you. Both Easter and Birthdays are celebrations of life, promise, and newness. Part of me feels it unfair for Mattie's birthday to fall on Easter this year. And yet, there is another part of me that sees this as a symbol that Mattie has found life again; a life where there is no pain, there is no struggle, where he can giggle and laugh, where he can fly with the butterflies or swoop down to blow a soft breeze through your windchimes. Know that I will be thinking of you this Sunday, as I think of you on every Tuesday, and always... Much love."
The second message is from my friend, Charlie. Charlie wrote, "It is lovely to hear that Mary is looking forward to her shopping trip and to buying new shoes. I agree with you that it is a very good sign that she is adjusting to her new residence and that her spirits are good. I believe many of our senior people suffer from undiagnosed depression, some caused by where they reside or the limits imposed by illness but I believe it is even more than that. I believe much of it is caused by the isolation we force upon them by the living arrangements so many of them have; like the rest of us, they need the energy created by the interaction of those we care about to help sustain us through each day. It is sad that when we most need the support of people we call friends, that seems to be when some of them emotionally move away from us. I am quite amazed at how we Americans are; death is a part of life, no one has ever avoided it for long and yet, it is something that we steadfastly deny in our lives. The only place one sees and hears talk of death is on TV or in the movies and there, death is quick, clean and people move on with their lives. All such a fantasy, as that is not how it is at all. Perhaps that is part of the problem, our "knowledge" is based on that unreality and when our own experience doesn't match up, some of us run away. That's unfortunate in so many ways as we need each other; that's what makes life the wonderful, precious event that it is. I have to say I loved Tamra's email. While Mattie is not here with us physically any longer, his memories, his passions, his joys live on, spread about in places where he had never even tread, shared by people who might or might not have known him. I know this is little, if any, compensation for the loss of his physical being but hopefully it does convince you of the love and support of those who have remained in contact with you. As I practice today, I will send you the energy I find; I hold you gently in my thoughts."
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