Tonight's picture was taken in July of 2002, when Mattie was three months old. The irony with Mattie was he did not like being confined, but he also did not like too much freedom. As a baby, Mattie strongly disliked floor time. It did not matter what you put in front of him to distract him, he simply did not care for lying on his back, and most definitely did not care for "tummy" time. He never liked lying on his tummy, and I would have to say this was a position he did not care for even up to age seven. There was something about it that made him feel uncomfortable and a lack of control. So what I am trying to say is we do not have many pictures of Mattie like the one displayed tonight. Before Mattie developed the muscles in his back and neck, we would prop him up on the floor sitting up, with pillows all around him. He was a sight to see, but preferred sitting up regardless of the method that got him to that position.
Poem of the day: Memories by Charlie Brown
I walk through our home and see
Memories of you and me
You as a baby learning to walk
You as a toddler beginning to talk
Growing so fast it was hard to see
How tragedy would strike you and me
Here is your bicycle that you learned to ride
And the stuffed animals you kept at your side
The special trains you loved to see run
The fountain with water that sparkled in the sun
So many memories and yet they're so few
Just seven years and no more with you.
So far I can't move these things from their space
This is something I am just not ready to face
But slowly, so slowly I am beginning to accept
That all of these things I insisted we kept
Will never again, be played with by you
And the memories will be in my heart, that's true.
I appreciate the e-mails I received today regarding my posting last night about Speedy Red. Just to recap, Mattie had a deal with Peter and I. If he complied with physical therapy and learned to take a few steps, his reward would be Speedy Red (a ride-on battery powered car). However, once we learned that Mattie's cancer metastasized, we bought the car and gave it to Mattie. I am sure Mattie pondered why we gave him the car when he hadn't completed his end of the deal. However, we never discussed this, nor did we dwell on it. We just wanted him to be happy in the moment, and to feel free to ride and drive this car. I expressed last night that this has weighed heavily upon me. I should clarify, the mere act of giving Mattie the car has never weighed heavily on me. What has, is the fact that we never discussed with him that he was dying. I think he actually understood this better than I did! In fact, the day before he died, in his garbled voice toward the end, he said, "I'm dying!" That actually took me aback, because we never used that term EVER with Mattie. But he knew, he confronted something at age 7, that I couldn't even talk about, much less accept. What a remarkable boy he was. But I have been second guessing my decision to not confront this issue with Mattie. Maybe he was scared, maybe he was unsure, and I did not give him the opportunity to work through those fears. That of course is my mother's guilt coming through. But as I have been reflecting on this all day today..... I have to be at peace with the decision I made. Confronting the issue of Mattie dying while receiving Speedy Red would have defeated the purpose. The purpose of this special gift was for him to be happy and enjoy that moment. To be a child, not a child with cancer! There is no way we could have accomplished this if we were talking about his pending death. Frankly this is not a topic I feel any parent is equip to have with their child, much less a child who is dying.
I spent a good part of the day today at Ann's house. I am helping her with her garden, and I am happy to report things are looking very springy in her front yard. While planting today, I felt I was surrounded by birds, blue jays and robins in particular. There is something very peaceful about focusing on plants and flowers, and creating a beautiful finished product. Ann and I had lunch and ran chores together. We hadn't seen each other in a few days, so somehow there seemed to be a lot to catch up on. Though I don't come out and mention it specifically, I am sure my readers can discern that Ann is an amazing friend to me who keeps me grounded on a good day, and offers a ray of hope on my numerous bad days.
I had the opportunity to see Ellen and Charlotte today. Charlotte and Abigail take ice skating lessons together, and I have no doubt that if Mattie saw Abigail and Charlotte together this would have brought a big smile to his face. Mattie was very fond of both of these girls, and hearing Charlotte's giggle today, reminded me of all the times Mattie got her to laugh. It is funny how a laugh can take you back in time. I literally associate Mattie with Charlotte giggles. He was a pro at getting her to laugh! Naturally I do not get the opportunity to see Mattie's friends like I used to. Nonetheless, time hasn't stopped for them. They are getting taller, brighter, and are developing. They are physically changing, but one thing remains. Their memory of Mattie is alive and well.
I am headed to Georgetown University Hospital tomorrow to meet with one of Mattie' HEM/ONC nurses. Katherine is now a nurse educator at the Hospital, and we are going to discuss the upcoming walk, nurse participation at the walk, and how to raise awareness for pediatric cancers. Mattie's nurses were prominently featured last year at the walk. Though their role has changed for us this year, their place in our hearts and minds has not. We learned so much from them, and I believe it is so important to honor these individuals for their service, and to encourage not only their presence at the walk, but for attendees to have the chance to interact with these fine women and learn from them.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read what you wrote about in the blog about Speedy Red. I think you are right and that all of you, including Mattie knew what was really happening when you gave him the toy without him "earning" it as you had specified. Believe me, there is no reason to have it weigh you down; you did the right thing, it brought him so much joy and gave him back some of his independence and mobility when nothing else would. I know you never really discussed his impending death even though you wanted to be totally honest and open with him. I think he knew and I don't believe it would have added anything to the relationship to have the conversation. You allowed him to have hope and joy for as long as he could; you did your best as a parent and a carer and that's all anyone can ever hope for. As I go through my day today, I will keep you in my thoughts and I hope your pain eases a bit."
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