Saturday, October 3, 2009

Saturday, October 3, 2009



Today's photo features Mattie and Peter standing behind a NASA space suit. This photo was taken at the Wright Memorial (a place that marks the first flight in the USA) in the Outer Banks, during Mattie's first trip to the beach!



Poem of the day (Thanks Charlie!):



Unforgotten Dreams by Peggy Kocisin


Unfulfilled dreams lie forgotten, Broken, crushed by circumstances
That heedlessly, carelessly,
Shattered my life and my heart.
How I wish I could still
The wistful yearning
For those unrealized dreams,
The promises I made to myself
That once held the gleam and Sparkle of expectation
And glistened So hopefully in the sunlight.
Somehow it just does not seem fair
That they now lie scattered,
Cruelly torn Into a thousand pieces,.
How sad it is to know
That any effort to recapture
And reassemble them
Would be futile.
I must dream new dreams,
Make new promises,
See new visions,
Cherish new hopes.
But, somehow, they are not
As sweet as the old ones.

I began my morning by playing with Ann’s youngest daughter, Abigail. Abigail and Mattie went to the same preschool and were also in the same kindergarten class at SSSAS. Throughout the course of this year, Abigail had become a true and loyal friend of Mattie’s, even during times when he was shutting down and was distant and remote. In fact, watching Mattie interacting with his healthy friends was a sight to observe. Sure there were difficult moments, but for the most part, with his closest friends, the bond transcended the disease. That was a very empowering lesson to learn, and certainly a powerful force to witness and appreciate. I have to admit I learned so many things from Mattie this year, things I wish I were still naïve about. Nonetheless, cancer has a way of stripping you bare, and you can either build yourself up from it, or it consumes and eats away at every part of you. I am hoping to strive for the former, but the verdict is still out.

Abigail introduced me to a game called, Sims. It is an electronic game, and basically you have a character that walks around a factitious town and creates and designs buildings. In the midst of designing, you can also allow your character to changes clothes, pick up objects, and interact with other characters in the town. I can imagine playing such a game with Mattie, and I know QUITE well if I had ever played it with him, the focus of our conversation would have been difficult. For Mattie, he would have been intently focused upon the building aspect of the game. Abigail was to a certain extent, however, she and I had some funny dialogues about the clothing options for her character. She made the observation that people should select clothes based upon whom they are planning on visiting as well as the context of the interaction. I thought that was right on target, and we also talked about the colors you select to wear can say a lot about your feelings for the day. It was a conversation that frankly I could only see happening between one girl to another. Which made me pause and appreciate some of the wonderful and natural differences between playing with girls versus boys. Sure there is something to be said about nurturing a child’s interest, but I must confess we cannot negate the simple fact of nature.

I felt that I accomplished a lot today. I finished all four-heirloom photo albums and Peter and I sat down and proofed them before ordering them. I also crafted the program for the reception and celebration of life ceremony. So I feel as if progress is being made, but of course, guess what I still have yet to do? If you guessed the eulogy, give yourself 10 points!

It is funny, today, while visiting Mary and Sully, I saw some residents at the assisted living facility watching the movie, Nanny Mcphee. As I was passing the lounge with the TV, some thing stopped me in my tracks. This was a movie that Mattie and I watched together in the PICU not too long ago. It was a movie that captured Mattie’s attention, and it gave us a moment together to forget our troubles and enjoy our time together next to each other. It is those close moments together on the couch or lying next to each other that I greatly miss. It is ironic that for many parents, they can’t wait until their children are tucked into their beds at night, so they have a moment to catch up on their day. I can say this freely since I felt this way many a night when Mattie was healthy. However, how I would long for those days when Mattie was around, where I could snuggle up against him, or share a tender moment on the couch. I guess my message tonight is don’t take those precious moments for granted because children grow up so quickly, or in my case do not get the chance to grow up at all. I can assure you when you can’t have these special times together, it is not only heartbreaking, but it leaves you lost, confused, and simply empty.

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "I saw this poem and was immediately struck by how it reflected some things you said in the blog about your hopes for Mattie which are now gone, as well as your efforts to go forward and figure out what your life will be like in the future. I can see how you have to be two people in one, one who looks fine and the other who is inside crying. You have to go on and do what needs to be done in spite of how you feel. I grieve with you for the loss of the dreams you had for Mattie and I hope you find a way to express what you feel so that you don’t have to wear the mask of life as normal, all the time. I also hope there comes a point where you can begin to build new dreams."