Wednesday, December 22, 2010

Wednesday, December 22, 2010

Tonight's picture was taken in December of 2008. Mattie was in the Hospital again and despite his surroundings, we tried very hard to make it feel like Christmas for him. Linda (Mattie's Childlife Specialist) gave Mattie Christmas lights, and they were taped all over his room. In fact, at night time, we would turn all the overhead lights off, and the room was aglow with Christmas lights. As always, Mattie's room was the place to "hang out" and we had lots of visitors (both HEM/ONC and PICU nurses) who would come by and chat and play with Mattie. These nurses will always have a special place in my heart. In this picture, you can see a more whimsical side of Mattie. Someone from Team Mattie brought him Christmas stockings, and instead of hanging them up, he decided to wear them! In his hand was one of his favorite items, a Dunkin Donut's frosted donut, and attached to his wheelchair was the magnetic Santa Alison gave him. Over the course of Mattie's illness, more and more things were attached to his wheelchair. I am not sure the statement Mattie was trying to make, other than I know he appreciated the gifts and they made him feel connected to the outside world.

Quote of the day: Cancer is not God's will. The death of a child is not God's will. Death from automobile accidents are not God's will. The only God worth believing in does not cause the tragedies but lovingly comes into the anguish with us. ~ Madeline L'Engle


We both woke up early this morning since we are still on East Coast time. At 6am, it was still dark out and it was pouring. However, Peter was determined to exercise while away from work, and seeing him in rain pants, a rain jacket, and all bundled up for terrible weather was a sight to see! I have to admire his commitment, because honestly just looking outside the window was uninspiring to get out of bed.

While Peter was out walking, I tried to put some decorations together that my mom had out. However, none of us are really into the spirit of decorating. I have a feeling if my parents weren't having friends over during the holidays even this much wouldn't have been done. It rained today in a way that is almost indescribable. The intensity was terrible and though our intention was to go to the movies, we never got there. Instead we watched movies at home together. We watched a movie today from the 1940s called Good News. It was light, airy, and captured the innocence of a different era. I have found that with Mattie's illness and death, I can only handle watching certain things. I really can't watch and hear about traumas, illnesses, or anything involving violence. Which if you think about most modern TV and movies, this truly limits what I can see. Fortunately I have always been an old movie fan and can turn to these wonderful diversions for stimulating stories, entertainment, and inspiration.

In the midst of a really rotten weather day, I exchanged some very meaningful e-mails with a mom from Mattie's preschool. The irony is I never met Erica, yet she was part of Team Mattie and continues to read the blog. Erica sent me a picture of this beautiful butterfly ornament on her Christmas tree. She wanted me to know that the butterfly is on her tree as a symbol of remembrance of her aunt and Mattie. I was deeply touched by this, especially since she did not know Mattie. Erica has come to understand Mattie through our blog. Through our email exchanges today, I asked her where she got this butterfly ornament, because I have been looking for one to go on Mattie's tree for the holidays. In fact, before I left for California, my goal was to put an ornament on Mattie's tree, as a symbol of our love and remembrance of him at Christmas. However, I never found the ornament I was looking for and while at the airport yesterday I was upset with myself because I was leaving without hanging this gift for Mattie on his oak tree (at his school). So yesterday, I e-mailed Ann and told her about my feelings, and she responded back right away with her willingness to help me accomplish this. Which leads me back to Erica. Erica actually has another butterfly ornament that she wants to give to me. I was thrilled to hear this because what Erica did not know was she was helping me accomplish what I really wanted to do before I left. Erica is coordinating a time with Ann to drop off the butterfly ornament. I am telling you this story because to me all of this was an unexpected gift. I did not expect others to understand my desire to remember Mattie in this way, much less find friends to help me execute my desire. There are so many lessons I have learned in Mattie's death, and one thing that continues to take my breath away is the kindness and generosity of those around me.

Later this afternoon we finally mobilized and got out. Peter snapped this picture since it was the first sign of a blue sky we saw today. It was short lived, but we captured it. As we drive around, it is clear that Christmas is all around us. Yet for us it is bittersweet. I see my parents too are struggling with making sense of Mattie's death, and really none of us get why he had to suffer so much and die. It is a profound loss to our family, and despite the fact that the four of us are together, we all are very aware of the vibrant piece missing from this family equation. I recently heard an analogy which was, losing someone you love is like being left behind and forced to live without a vital organ. Most definitely!

This evening as we were driving home, I snapped some pictures of lights in my parent's neighborhood. Some of my readers may remember in October when I was visiting my parents, I took a picture of a house near them which had hundreds of jack-o-lanterns in the front window of the house. Well low and behold, this house is now decorated for Christmas with hundreds of Santa's in the window. My picture doesn't do it justice, but believe me it captures your attention from the street!

My parents live in the hills of Burbank, and one community near them was once known as "Starlight." Most likely because the houses are in the hills, giving you a feeling of being close to the stars in the sky. Any case, though the community is no longer known as Starlight, they continue to decorate their front yards at Christmas time with huge STARS. It is an amazing site to see, one star after another. As I pass these sights, all I can think of is Mattie's reaction. He would have loved to see the lights and we would have loved to watch him seeing the lights. His joy, happiness, laughter, and smiles were my joy, happiness, laughter, and smiles. Without Mattie around things seem a little less bright, clear, and worthwhile.

Peter took this picture most likely because of the reindeer. Mattie loved mechanical reindeer that lit up, we had several of them, and Mattie always loved watching them from his bedroom window. Mattie's window faced the light show that Peter and he would formulate each year!

I would like to end tonight's posting with a wonderful poem my friend Charlie sent to me today. She captured the feelings we are struggling with this Christmas, and most likely every holiday yet to come.

Holiday Time by Charlie Brown

Of all the special times of the year
Christmas is when we hope to hear
That those we love and hold most dear
Will come and celebrate from far and near.
But what do you do when the one you love
Has gone ahead to heaven above?
When the absence of one is such a void
That the holidays are something you want to avoid.
Then what do you do at this special time
When there no long seems to be reason or rhyme
Or a way to celebrate this special day
When all the joy has gone away?
Christmas is about giving and joy
And the love one has for a little boy
When hope is gone and he is no more
It's hard to pick your heart up from the floor
For those of you who've walked with me
And seen how difficult loss can be
I hope you take the time to say
How much "I love you" everyday
For life is fragile and we never know
When fate will extinguish that lovely glow
So treasure your loved ones while you may
But for those who've lost them, remember to pray.