Monday, December 21, 2009

Monday, December 21, 2009

Tonight's picture was taken in December 2002, Mattie was 8 months old, and therefore this was his first Christmas. Peter and I wanted to take a picture of Mattie to feature on our Christmas cards that year, and when we saw the first snow fall of the season, we dressed Mattie in his Santa suit, dragged out his entertainment saucer in the snow and covered it with a blanket. We took at least 30 photos of Mattie in the snow that day and then selected the one I posted here tonight for our first family Christmas card. It is still a photo I cherish today, and both Peter and I can remember this whole photo scene vividly.


Poem of the day: My memories by Jessica L. Gray


It seems as if yesterday
you held out your hand
for a walk in the park
a play in the sand
I know it was just last night
I tucked you in bed
saying our prayers
with a kiss on the head
Sometimes I wonder why you had to go
But the answer to this I already know
So much suffering just can't go on
I finally had realized what I knew all along
I had so much to say
I Love You's to tell
I started to slip
and I almost fell
But I kept on moving
one day at a time
My memories kept going
on and on in my mind
The day you were born
Your first big boy bike
I know you put these there
for me to keep in sight
I know you are with me
each hour and minute
I feel you around me
There seems to be no limit
So my darling son
I want you to know
I miss you and Thank You
for helping me let you go



My headaches are back in full force. I am not sure if this is due to the fact that my body is getting used to the medication prescribed by the neurologist, or that subconsciously I know Christmas is approaching, and with that I feel an inordinate amount of stress and sadness. Either explanation seems very plausible, but on top of dealing with grief, I am also back to dealing with chronic pain and the inability to sleep.


This morning Charlie wrote to me. My faithful blog readers know about Charlie, but for those of you just tuning in, Charlie was a former student of mine, who I have gotten to know and become friends with over the years. Charlie writes to me each and every day since Mattie got sick. This level of devotion to our friendship and the spirit of Mattie are deeply appreciated. In Charlie's message below, she reflects on Mattie's time playing in the snow. Because we live in Washington, DC, we rarely get much snow accumulation during the winter. However, Mattie did have his fun in the snow, and I did not think about it, until Charlie asked me about it. Mattie first went sledding in Boston with his cousins. In fact, his cousins' school has a wonderful hill behind it, and while we were visiting it happened to snow (no surprise after all, it is BOSTON!). Any case, Mattie's aunt, invited him to go sledding. I freely admit to being a neurotic parent and I worried about Mattie sledding. I was afraid he would get hurt and so forth. Of course, I realized he had to have fun and experience the joy of sledding, but each time he went down the hill, I had my heart in my mouth. Who knew we would be dealing with Osteosarcoma and that battle a few years later. It makes sledding look like a walk in the park. Mattie loved sledding, spending that day with his cousins, and learning to play in the snow. I am so happy he had that special moment. Mattie also had one or two snow days in preschool as well. One of Mattie's preschool teachers, Kathy, would let the kids sit on plastic food trays and slide down the school's sloping hill. Mattie absolutely loved it. The more wild the ride, the better for him! He enjoyed the sensation and the feeling of gliding down the hill on snow, which is ironic, because typically Mattie was a very cautious individual.


The past two days, Ann's children have been sledding and enjoying their time in the snow. It wasn't until Charlie asked me about Mattie and his love for the snow, did I reflect on those memories. Now that I see Ann's children getting their snow pants on and prepare for their adventure, I can't help but wonder what Mattie would have done on a day like today?! I am sure you can only imagine what my next thought was..... which is Mattie should be here with us today, and how unfair that he can't be. There are some moments where Mattie's death just hits me and at times blows me over inside. What I have come to understand is that children are a gift. Children give us perspective and allow us to have aspects of true happiness, which on some level, I feel, we adults work very hard at times to block these vital things from our lives. Children help us see beyond ourselves, they help us take a break from our daily tasks and appreciate the more simplistic and more meaningful things around us (such as playing in the snow for example), and the irony is most parents do not realize how beautiful their daily routine is with their children. Not having this routine, I assure you I know VERY well of what I am saying! If I can make you stop and reflect on how lucky you are to have your children around you, if I can get you to read one more bedtime story, give hugs at night, and appreciate the hard work of preparing for the holidays to bring joy to your children's lives, then I would say I had a successful posting tonight. The message I am sending this Christmas is DON'T TAKE FOR GRANTED THE HEALTH OF YOUR CHILDREN AND THEIR PRESENCE IN YOUR LIFE!

I spent part of the day with Ann, helping her get ready for the holidays. Her children were all home, and the energy and happiness they exuded was very evident. I shared with Ann some of my concerns for getting through this week, and I realize that my concerns are much deeper than just this week. I really am questioning the future.

Tonight, Peter and I had the opportunity to join Jerry and Nancy for dinner. As many of you know, Jerry and Nancy were Mattie's favorite music volunteers at the hospital. They visited us weekly, when Mattie would allow them into his room. Jerry and Nancy would play, a "Name that tune" game with Mattie, and he really loved the spirit of competition from this interaction. Jerry even gave Mattie an electric keyboard so that he could pursue his musical interests and talents. This is my third dinner with Jerry and Nancy since Mattie's death, and each dinner I find very fun, humorous, and at times therapeutic. Therapeutic because they saw first hand the way we lived for 13 months, and we reflect on this, the beauty of Mattie, and naturally the pain that we are now living with. Our days and nights in the PICU were VERY long, and having volunteers like Jerry and Nancy truly helped get us through some nights. Peter and I met them during Mattie's first week in the hospital back in August 2008. I was so upset that week, as I was trying to figure out the whole chemotherapy regimen. Jerry and Nancy entered Mattie's first chemo room, and for 30 minutes, we all had a good time together, singing and trying to get Mattie to smile. It seemed to work, and anything that worked, I naturally clung to.



I would like to end tonight's posting with a message from my friend Charlie. Following Charlie's message is a song I came across today on the radio that I wanted to share with you. Charlie wrote, "All this snow made me think of Mattie and how much he would have enjoyed playing in it, sledding, building a fort and a snowman. I realized the last time we had this much snow he was not born yet (1996) and now he missed this huge storm. I was shoveling snow and thinking of Mattie and I heard bells. Many of us have wind chimes but as far as I know we all take them down for the winter since the wind tends to be pretty fierce. I looked around saw no chimes on anyone's porch but still I heard bells. I think Mattie sent a message that he knew many of us were thinking of him and that they are making snow angels up in heaven. I am glad to hear that you and Peter are out and about and getting things done in spite of the weather. As I am out and about today I will be thinking of you and keeping you in my heart."

I heard Toby Keith's song, "Cry'in for Me" on the radio today. What caught my attention, was the reasoning behind why the song was written. Toby Keith created this loving tribute to his friend, Wayman Tisdale. Wayman was a talented jazz bass player, who died in 2007 of cancer. The song is touching, and I decided to see the video of it tonight. While watching the video, I could see clips of Wayman embedded in the video. I quickly noticed that one of Wayman's cancer treatments, left him with a prosthetic leg. This immediately caught my attention, and I googled Wayman Tisdale. Wayman died of NOT JUST ANY KIND OF CANCER, it was OSTEOSARCOMA! Below is a link to the song. I hope you find it as meaningful as I do.



http://www.youtube.com/watch?v=UeiKg5jtAF8