Wednesday, March 11, 2009

Wednesday, March 11, 2009

Quote of the day: "Memory... is the diary that we all carry about with us." ~ Oscar Wilde, "The Importance of Being Earnest"

Mattie had his usual late night on Tuesday. You have to be in awe of his energy! He finally settled down at 12:30am. By the time I got him to sleep, I felt like I put in two days in one. This morning Mattie had a slow start, but he was happy that Whitney was coming over to play with him. As many of you know, Whitney is one of Linda's former childlife interns. Whitney works with us each Wednesday, and she is a God send. I asked Whitney to work with Mattie for five hours today, and it was a glorious five hours away from our house and all the responsibilities that come with it.

Whitney is just a lovely individual, she can easily engage Mattie, and has the energy and commitment to make this work. Before I left the house today, Mattie was climbing the stairs on his rump, and was determined to show Whitney something in his room. Can you guess what it was? If you guessed his kindergarten box with all his writer's workshop papers, then you would be right! Clearly these papers mean a lot to Mattie, and he wanted to show his stories to Whitney. Mattie and Whitney clearly had a busy day together. They played upstairs with Lincoln Logs, they got out his remote controlled boat, legos, and his old train set. The same train set he took out for Whitney last week. I am always amazed to see this old favorite come out. I can still remember buying this set for Mattie like it was yesterday. Whitney snapped a picture of Mattie with this Thomas set.


While Mattie and Whitney were together, I was very productive. I picked up prescriptions for Mattie, went to the grocery store, and then finally after many months got my car washed. I knew my car was somewhere under all that dirt and salt, but it is nice to be introduced to her again! After my chores, I called Peter to check in on him. Peter went to Cody's funeral today. Peter felt that it was important that one of us go to show our support to the family, and to pay our respects. I admire Peter's convictions to do this, and courage to face a most painful and difficult day. Peter tells me that the service was beautiful and that over 20 people from Georgetown Hospital were there and that the church was filled with hundreds of friends and family members. I was so happy to hear the support that was being extended to Cody's family. Can you imagine how these parents feel? Those of you with a six or seven year old, I invite you to pause and try to imagine this happening to your child. What would you do without your child in your life? Are you still a parent? How do you explain this loss to your other children? Is this the best life has to offer? Of course for many of us we can easily shake this image from our thoughts, but for Cody's parents this is their new reality. I could tell that the funeral hit Peter very hard today, and Peter told me that he had a hard time getting through the service and that Denise, our social worker, and Sharon, our Georgetown Chaplain, gave him support during the service. I knew Cody's situation was far too close to me, and that I would be unable to attend the funeral. However, I imagine one could say the same applies to Peter, that maybe he shouldn't have gone either. Peter wanted to go, and sometimes I think being able to confront your fears and to cry is a very important thing especially when you are raising a child with a life threatening illness. It is funny, something told me to call Peter after I did the chores, and I am glad I did.

When I got back later this afternoon, Mattie was having a good time with Whitney. We look forward to seeing Whitney next Wednesday, and Whitney tells me that she could potentially work two days a week for us. That would be wonderful! When Peter got home today, I started to tear apart my closet. I had to find some professional clothes to wear for Friday and Saturday. On top of everything else I am dealing with, I am presiding over a two day professional association board meeting in Alexandria, VA. So for two days, I have to put my mommy hat on hold or in check, and try to dig deep and find my professional side, and find the stamina and resources to run these meetings.

Peter brought home a big Lego surprise for Mattie. Peter made a deal with Mattie that he had to walk around the house with his walker three times. Each time he walks, he gets another part of this huge Lego set. Mattie was very motivated, and walked back and forth to our kitchen today. It was great to see. Peter has the knack and is a good motivator for Mattie!

I want to thank Susan S. for offering to be our mid-day helper today. Sorry Susan that we did not get a chance to see each other today. I also want to thank Rana for offering to bring us dinner tonight. Peter and I both did not feel like eating but we so appreciate the support! As we head into Thursday, Mattie will go to the clinic for a check up, blood draws, and MTP-PE infusion. So far Mattie is holding his own, though his appetite is definitely not back.

I end tonight's blog with a very meaningful message I received from my friend Charlie. I thought she did a great job reflecting and synthesizing Tuesday's events. Charlie wrote, "I was struck by your comments about yesterday being a "memory day." Mattie wanting reminders and stories about when he was small; Mattie looking for his his box of writing material from last year and so on. That's something we do, when we get ready to set out on a new road or on a trip, whether physically, emotionally or mentally, we look back and bring with us things that we think are useful for helping us along the way. I think you are correct, that Mattie is getting ready to move forward with learning and he is gathering his memories and experiences to use as tools for this new "project." I am so pleased to see him willing to open new "doors" for his mind; it is critical for him to get mental exercise as well as physical although the people who help him play do a good job of incorporating a lot of learning in it. I know it concerns you that he came up the stairs without supervision but he is beginning to reassert not just his independence from you but also his mastery of his body; a mentally healthy move even if it is somewhat risky physically right now. Hang in there, we all hope he will be back to walking up and down independently one day soon."

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Peter's Entry (this is Pete writing):

All,

I asked Vicki if I could write something tonight in the blog as I am compelled more so than normal to express what I am going through today. Vicki is the author of this blog and long ago I stepped back from it as she truly has a gift for writing, expressing and putting into perfect context the challenges and every-day experiences, however raw and base they may be, into everyone's life, head, and mind.


Today, I attended the celebration of a wonderful, spirited and cherished soul that we lost to the fight with cancer by the name of Cody Johnson. Cody was a six year old boy, the same age as Mattie, who died Friday morning from neuroblastoma, the most deadly childhood cancer known. Cody was diagnosed when he was two years old, a time when most children are learning to walk, to speak, and discovering the world around them. Instead of doing that, Cody was sleeping more nights in the hospital than at home, taking gross amounts of medications, undergoing surgeries, tolerating poisonous toxins (otherwise known as chemotherapy) and dealing with the indignities of being a child who has cancer.

Cody's funeral was well planned and was a meaningful event. Diane and Mickey (Cody's parents) could not have done a better job. The church was filled with the reflections of Diane, Mickey and most importantly Cody. At one point when the eulogy was being read by a family friend, I could hear in the distance a horn from a passing train blowing widely. At first the sound slipped quietly into the background of the situation, but when the horn persisted, and kept blowing almost in a daunting manner, I knew this was a sign, a message, that Cody, who was well known for being a true spitfire, was signifying in some way that he was there, was present, and was saying goodbye for now in some way to those who were listening.

Needless to say, I was an emotional wreck throughout the service. I could not stop welling up with tears. Here we were celebrating a beautiful, full-of-life six year old boy, who had lost his battle with cancer, a battle fought valiantly by himself and his parents and his family, without thought of life, or limb or mental health. I could not help but think of how awful the day-to-day existence for Cody must have been, and how he stoically faced his situation while providing each of us with comfort, humor or harassment (for those of you who know him you know exactly what I mean). He was a true fighter and subborningly refused to give up until the very end when he knew he was beyond saving. Near the end, Cody began pushing away those who loved him because somehow he knew that his departure would wreck those who did love him, and that in his own special way, he was trying to spare them in some way, the pain associated with his battle with cancer.

Cancer is truly an awful thing, too devious to discuss here and too bone chilling to think about. I truly feel sorry for Diane and Mickey (Cody's parents) for what they went through. You cannot recover from the loss of a child, as there is only an adjustment to a "new" and much worse reality. Children are truly precious gifts from God that we must cherish, appreciate, love and accept for what they are each and every day. Although life's pressures collapse on us each and every day, we cannot forget how blessed we are to have these kids in our lives.

God Bless you Cody. We will miss you but we will never forget you.