Saturday, April 3, 2010

Saturday, April 3, 2010

Tonight's picture was taken at Mattie's 6th birthday party. Mattie was in love with bowling and Scooby Doo at that point. So we had a bowling party for him, and a Scooby Doo cake. Mattie was a trooper that day, because by the end of the party he was running an 101 fever and feeling ill. This was just three months before he was diagnosed with cancer. We were all oblivious at that point how our lives were going to change overnight!


Poem of the day: Where the Soul Never Dies by Sam Oliver

Nature, a reflection of our soul,
reveals the seasons of our lives.
Like people, earth’s seasons teach us
patience, awareness, and encourage us to grow.
From the sparkle of sunlight in the doe’s eye
to the sparrow elevated by the air below its wings,
the spirit of God is the source of life that fuels our spirit
and raises us above pain and sorrow.
Only the soul can travel to this place above the clouds
where we are lifted by the breath of God.
Here, the lessons learned in nature
disclose to us that dying is a transition into life
and nothing completely disappears.
Rather, we are transformed into another realm of existence
to experience the essence of living
where the soul never dies.

Peter and I spent part of the day working on "March for a Miracle" paperwork and discussed on line walk registration and Peter began working on formulating this. We spent a good deal of time assessing how other organizations handle the whole process of walk registrations. Looking at other models through the Internet is very helpful and it gave us a lot to discuss.

In the afternoon, Peter and I went in two separate directions. Peter was given baseball tickets to Nat's Stadium to see the last practice game of the season, before opening day tomorrow. The practice game was between the Nat's and the Boston Red Sox. Probably to no one's surprise, I hear the Red Sox won. The last time Peter was at Nat's stadium, he went with Mattie and myself. I will never forget that day. Mattie was like me, he did not appreciate sports for the most part. So though Peter was looking forward to seeing the Red Sox play that day, Mattie kept him hopping. There was NO sitting and watching the game for Peter. However, by that point Mattie had cancer, had been dealing with so much trauma from his diagnosis, that Peter and I basically were going to do just about anything to make sure Mattie was happy. So much so, that at Nat's stadium we visited the Build a Bear store. Mattie created a dog dressed up in baseball attire. This was about the only thing that brought him happiness and a smile on that day. Whatever it took was our philosophy. I distinctly remember that day, how people were staring and glaring at Mattie's bald head and his wheelchair. A feeling that angered me intensely. I give Peter credit for going back to Nat's stadium today, because if I never see that stadium again, I would be just fine with that.

While Peter was at the game (and he had a good time!), I met up with my friend Amany. Amany and I met each other in graduate school over 14 years old. We had a lovely lunch together. We chatted non-stop for over three hours. It was funny, Amany reminded me of the fact that when I found out I was pregnant with Mattie, a boy, that I was very concerned. Concerned because I did not know if I would have the foggiest clue how to raise a boy. When she mentioned that today, it brought a smile to my face. Actually we were both smiling, because now, eight years later, as I reflect on this, I realize just how wrong my statement was. I may not have known how to play with a boy, but I learned quickly. Mattie was the best teacher, but it was easy to learn when you are in love with the person you are caring for. Mattie and I were certainly mother and son, but it went beyond that. Mattie was just like me in disposition, personality, and temperament. We understood each other perfectly, and we had an inseparable bond. A deep bond that most people could see as soon as you met us. So in losing Mattie, I feel I lost a part of myself, and most definitely lost an irreplaceable bond!

Amany and I went through many ups and downs together during graduate school, and we both certainly know how to sit in these difficult moments. Talking about Mattie can be hard to listen to, because it naturally brings up pain, anger, depression, and hopelessness, but these feelings have to be discussed and processed. In comparison to the last time I met with Amany, today I was able to more freely discuss how I was doing, and I view this as great progress on my part. In addition, I explained to Amany that through Mattie, I have been conditioned to avoid talking to people on the telephone. In fact, I really don't prefer this mode of communication. To me it is safer talking to people through e-mail or text messages, or face to face conversations. Somehow being attached to a telephone makes me feel uneasy, edgy, and trapped. I am sure that makes no sense, but I think it is after months and months of conditioning. Talking on the telephone greatly bothered Mattie. He did not like the noise, and he most definitely did not like how it distracted my attention away from him. Because he was dealing with such horrendous treatments and surgeries, I felt it was important to respect his needs. But over time by respecting his needs, it also changed how I communicate with others.

As Mattie's birthday approaches tomorrow, Peter and I are trying to figure out where our 8th forget me not seed planting will be and how we will spend the rest of the day. We realize it will be a challenging day and we elected to spend the day alone together. I know that many of Mattie's friends thought it would be nice if we threw a party to celebrate the occasion. On some level I feel bad that I am not providing the children with this outlet to acknowledge their friend. However, this year, we need to find a way to get through the day ourselves, and some how celebrating Easter and being around children did not seem to be an appropriate match for us. I invite you to celebrate this special day with your family and friends and I certainly would love to hear any stories you wish to share with me about how you remembered Mattie on Sunday.

I would like to share two messages with you tonight. The first message is from my friend, Charlie. Charlie wrote, "I am so glad your experience yesterday with donating Mattie's unused toys in honor of his birthday went well. The picture is great and I know the staff and the children being treated there at Georgetown will really appreciate and use those toys and books. It was also nice to hear that you decided to do this planting in honor of Mattie's birthday and I will be waiting to hear what location you picked out for the last group of seeds. As I've said before, Mattie's story has spread far beyond his physical presence; his spirit is honored in a number of lovely ways. Like a pebble in a pond, the ripples spread far beyond the original splash; so too was his impact on so many. Hopefully, the success of the foundation will bring his story as well as hope to a new group of children until there is no longer a need to do so. May tomorrow be a day when the positive remembrances outweigh the negative ones. I hold you gently in my thoughts."
 
The second message is from my friend, Amany. Amany wrote, "I just wanted to take a moment and tell you that I have been thinking about Mattie's birthday and you and Pete all week. Worrying about how you will handle it. Questioning why he isn't here and so many other things......I love the planting of the seeds--so special and I intend to do the same tomorrow. In reading the blog, I am overwhelmed and continually in awe of the way Mattie's life, sickness and death has brought so many wonderful people together. Mattie and you and Pete are so special and your energy has worked miracles. To do that in the midst of such tragedy and agony is nothing short of amazing and inspiring. While his life was so short, Mattie made more of an impact and his life had more meaning than those who have lived long lives. I have never seen multiple communities of people come together and do so much. His ability to move everyone to such action speaks volume about the power of Mattie's life, soul and spirit. May it bring you just a little comfort to know how impactful and meaningful his life was."