Tonight's picture was taken when Mattie was 6 months old. At this age, Mattie had three favorite things to do. The first, was sitting in his entertainment saucer, the second was sitting in his walker (which we nicknamed tot wheels, though he couldn't walk, he would zoom around in this seat with four wheels), and third, was this jumper (seen in this picture). The jumper could be attached to the frame of any doorway, and literally Mattie could jump up and down and I would even swing him back and forth in this contraption. The jumper was a GOD sent. It was the only device or trick I had to use that would actually calm him down and get him to sleep. Sleeping DID NOT come naturally to Mattie. Forget the warm baths, soothing music, and all the other well known sleepy time remedies. They did not work on Mattie. I would literally put him in the jumper for 30 minutes, and wait for him to finally fall asleep. Faster motions were smoothing for Mattie. Then slowly I would transfer him to his crib. Despite my best efforts, he HATED the crib, and would wake up within five minutes. By 18 months of NO sleep, I finally decided to listen to his pediatrician and I read from cover to cover Richard Ferber's book, in order to learn the Ferber Method (a behavioral method to teach your child how to sleep). Ferberizing Mattie wasn't easy, he was very strong willed, but within a week's time, following the method, we restored some semblance of order back into our world.
Poem of the day: Remembrance by Evelyn Hall
Your loved one is gone,
But we won’t forget.
Their laugh, their smile,
Their face, their grace.
Your loved one is gone,
But we won’t forget.
The good times, the bad times,
The fears, the tears.
This poem is very touching, because it reminds us of the importance of remembering our departed loved ones. Specifically when it states, "but we won't forget." Just when I think perhaps the world has forgotten about Mattie or our daily grief, I get an e-mail from someone (like the one from Melissa below) who gets me to see the reality. I very much appreciate these reality checks, because grieving is painful and also very lonely.
I have been communicating back and forth through e-mail with Mattie's head of school, Joan Holden, and Mattie's assistant head of school, Bob Weiman (aka: The Magic Man to Mattie!). I asked them whether they would be willing to sponsor another Osteosarcoma walk on their campus this spring. I would like this to be a memorial walk in remembrance of Mattie. The walk is an outstanding way to reach out and educate the public about Osteosarcoma while also generating funds to go toward research and assisting other families fighting this horrible disease. Certainly Joan and Bob did not need to open up their campus again this year to us. After all, Mattie is no longer a St. Stephen's and St. Agnes School student. However, I see that once you are a Saint (the school's mascot), you are always a Saint. I am very pleased to announce that we will be working with the School to establish a Walk Date. So please stay tuned. Joan and Bob were extremely supportive of Mattie and my family throughout Mattie's battle, and they continue to be there for us through our current battle with grief. We deeply value and want to acknowledge this support.
I spent most of the day with Ann's children. Ann went out of town for two days to attend the funerals of a friend and family member. So while she is away, I am helping Bob with the kids during the day. We had a good time together, and covered all sorts of activities from homework, snacks, playing games, to after school activities. Abigail (Ann's youngest daugher) and her friend, Katharina, tonight were playing a game that they made up. The irony is, the game reminded me of something Mattie would have created. I was transformed from a person into a piece of chocolate, and I had both girls chasing me around the house. The game started and ended multiple times, and I have no idea how they even created it, but that is the beauty of a young mind. Needless to say, I was always captured (after all how fast can a candy bar run?), and hugged to death. Not a bad ending to being captured. Certainly better than being tackled to the floor.
Later this evening, Abigail announced to me that she is creating her own play, and writing songs to accompany the play. She was serious! She opened up a notebook, and on the page I could see words. I asked her to sing me her first piece. The song was entitled, "I found you." It was actually very touching, and naturally I couldn't help but have my mind drift to Mattie, in my hopes of finding him.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I feel sorry for those who have told you they cannot read the blog now, that it affects "them" too much. If you cannot bear sorrow for a friend, what does that say about you as a person? And why should anyone put that burden on you by telling you that? I don't understand the selfishness of someone like that. Perhaps what it says is not that these persons feel too deeply, but that they don't have the inner strength to hold up. And what does someone like that do when sorrow strikes them? Run? Hide? Because no one is immune from sorrow and grief. Truly I think you are bearing your grief with more grace than can be expected in your situation and I regret that some who started on the path with you have turned out to be more a burden than a help to you. Although it seems counter intuitive to do things around children right now, I believe no matter what you do the grief is there waiting and so you should do what it seems right to do at the moment and let the grief come as it will. It is like the ocean, you can fight or you can swim with the tide, either way it is bigger than we are and you will end up where it takes you. Fighting can leave you absolutely exhausted but does not shorten the journey so I suggest you go with it, wait for it to subside and then pick yourself up and go on when you can. I hold you gently in my thoughts and will pray for a space of serenity for you today."
The second message is from a colleague of mine. Melissa wrote, "I should strive to write you more whenever I have a thought, however little and insignificant it may seem at the time, in hopes that it might convey that I'm thinking of you, am still reading your blog, and am continually impacted by Mattie's life/story and you and Peter's struggle. I often hesitate to write as I'd like to give more thought to my reactions and formulate a well thought-out and decently written e-mail, but I want to try to abandon that. Two thoughts today. One--I know you are struggling with the impact you are having on your readers and what if anything to do about it. First, I think that it's best to be honest whenever possible and that one of the best gifts we can receive from an honest expression is empathy or an attempt at empathy. If you are honestly expressing and your readers are actively empathizing or trying to empathize--I believe that good things will ultimately come of that. Second, you may not see even a smidgeon of hope in your day to day existence and much of what you share is absolutely heart-wrenching. However, perhaps it's the counselor in me, but I can find hope in small and big ways in so many of your entries. Simply getting up for the day and getting out of the house demonstrates a bit of hope to me. It may not to you, you feel "what choice do I have?" But you are not curling up in a ball each day. You are writing each day, reflecting each day. Sharing with others each day. Even giving of yourself or thinking of others many days. Searching each day. There is a smidgeon of hope in each day that you rise, in each activity you encounter, in each activity that you reflect on (even if it's negative--you are still engaged!). I see those small and big victories and I see them as hope. Perhaps I have to look hard for those things, but I am not giving up and it seems that although it is the most difficult thing you have ever tried to do, you are not giving up either...far from it. I continue to read, wait, watch, feel and learn from you. Thank you for continuing to share."
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