Sunday, July 25, 2010

Sunday, July 25, 2010

Tonight's picture was taken on July 25, 2008. Mattie was officially diagnosed with Osteosarcoma on that day at Georgetown University Hospital. Since July 25, is my birthday, this was quite a birthday present in 2008. A present which will always remain with me, or haunt me as the case may be. Even my birthday is bittersweet. On July 25, 2008, we thought one bone tumor was horrific enough, but it wasn't until August 6, 2008, that we learned Mattie had multifocal osteosarcoma, meaning that there were four primary tumors (one in each arm, one in his left wrist, and one in his right leg) to contend with and battle. In this picture, you will see Mattie with his first oncologist, Dr. Jeff Toretsky. Peter and I were adamant right from the beginning that Mattie should be told he had cancer. We felt it was important for Mattie to be part of the process, in an age appropriate manner. Since the treatment and surgeries were going to be extensive, sugar coating the problem wasn't going to be helpful to any of us. In this picture, Mattie can be seen stomping out a model magic bone bug. I coined the term, "bone bug," mainly because children understand the concept of a bug, and the need to kill it. This analogy worked beautifully with Mattie, and even when chemotherapy began we talked about how this toxic medicine was zapping out bone bugs, and I on many occasions helped Mattie visualize the death of these horrible bugs.

Poem of the day: An Ocean of Loss by Charlie Brown


I walk the beach
Surfing the waves
Of grief and loss.
Over and over
They pull the sand
Into the ocean.
Is that how it is?
That grief pulls you under
Until you disappear from sight?
Sometimes I wish to disappear.
But there is another force
That of hope, buoyed by friendship
That keeps me afloat
Even in this deep sea
Only sometimes can I reach out
When I can't
Reach out to me.

For some reason, I had a hard time falling asleep last night and staying asleep. I think I slept about four hours total. When I woke up this morning, I went to sit outside, despite the heat, for about four hours, reading my book. I can totally appreciate the hard decisions the mother in this book, My Sister's Keeper, had to make regarding her daughter's cancer treatment. I was in a complete funk this morning. I am not sure if I was feeling this way because it is my birthday and Mattie is no longer in my life, or that I now associate my birthday with Mattie's cancer diagnosis. I received many wonderful e-mails today from family and friends and I greatly appreciate my friend, Amany, who was text messaging me throughout the day. She understood the significance of today and how hard the day was going to be.

When Ann got up, she came looking for me. She found me outside, and started singing happy birthday to me. As she turned the corner, she could see I wasn't in the happy birthday kind of mood. So instead, she pulled up a chair and we chatted for the next several hours, in the heat. If that is not what friendship is about, I am not sure what is. I have to imagine the fact that Ann and I experienced Mattie's death and the death of her dad together, has profoundly altered our world view, and our view of the world together. I know Ann wants me to be happy, and she can sense that I will not on some level permit myself to be happy because of ties and feelings of loyalty to Mattie. Today she worked very hard at getting me to reflect on Mattie and whether I think Mattie would want me to be so unhappy on this earth. I understand on some level the answer is NO, but as usual my cognitive level is not in line with what I am feeling. 

Ann worked hard at cleaning up the kitchen, sheets, and towels today so that I wouldn't have to do it. Her efforts did not go unnoticed, and to me it is these acts of thoughtfulness and kindness, that are the true brithday gifts I can receive. After we said our good-byes to Ann's family Peter and I went out for a drive. We stopped to have a late lunch by the water in Fenwick Island, DE. After which Peter and I stopped at various shops along the way. As I am writing the blog this evening, we are having a major rain and wind storm at the beach. Things have grown dark outside and the wind is whipping around the house. Peter and I react to these weather moments differently. Peter loves it and is fascinated to experience the storm, and I can't wait until it is all over.

Peter received a phone call yesterday from our vet. Patches, our 14 year old cat, is very ill and is now dealing with kidney failure. I wasn't happy to receive this news yesterday, but like Mattie's illness, I am taking it one stage at a time. The vet thinks she has a prognosis of three years more of life at the most. Patches has been a challenging cat, but a very loyal cat, and was always a good companion to Mattie. It is ironic, I always worried that at some point I would have to explain to Mattie the loss of Patches, because she is an older cat. I had no idea, that Patches would outlive Mattie.

Since tonight will be a full moon, I will definitely be looking up at the sky to find my Mattie Moon. Last night, Abbie (Ann's youngest daughter) was staring at the moon and asked me if I could see his face. She pointed out the moon's eyes, nose, and mouth to me. She then said that the moon's face was looking down toward the earth, or in other words, Mattie was looking down at us and smiling hello. It was a very sweet and heartwarming comment. As we head into Monday, Peter and I plan on meeting up with our friend, Tamra in Rehoboth Beach before we drive home. Tamra was the first person to e-mail me yesterday, to congratulate us on The Washington Post article. It was a very touching message, and it helped me to see the magnitude of having the Foundation covered in the Post.

I would like to end tonight's posting with two messages. The first message is from my mom and her wishes for me this birthday. My mother wrote, "Congratulations on your birthday and may the future years ahead sparkle brightly for as the card says there is 'some star you haven't even seen yet that is sparkling in your corner of the sky.' I would venture to say that this card was meant for you this year to remind you that indeed, there is a 'new star' in the firmament. It has a familiar name, face, and smile with a big open generous heart that you would recognize instantly as your very own 'Mattie Miracle Star!' He, is new to the heavens, and uses his brilliant, bold and spectacular light to show how very much he loves you by sending these glorious beams to you directly here on earth. His light is accompanied by a special telepathic message that assures you that he is never really far away from you although you may have to concentrate hard to 'sense' his eternal presence. Look for him in the heavens every night for he depends on that and will remain in 'your corner of the sky' until the end of time!"

The second message is from my friend, Charlie. Charlie wrote, "I am delighted that you had a really nice birthday celebration yesterday. I wish I could have given you the gift I know you wanted most: one of Mattie's hugs or kisses. I am glad you were with people who knew and recognized that. I read the article on Saturday and again today. As you know, I was in the workshop and it took everything I had emotionally so I wanted to reread the article today and look at the photos from a more "stable" place. I think Rick Rojas did a great job of putting your loss into words even those who are fortunate enough not to have gone through a trauma like this would understand. The pictures posted with the article are great and they do look like you and Peter but my favorite is the one of Mattie's sun. I thought it was nice of you to share the blog with Abbie and Michael; as you said the blog is not really for children, but it is important that they are aware of it, that they know that adults can show and honor honesty in feelings just as children can. As I finally come back to practice today after three days away, I send you the strength I find in facing and accepting myself. I hold you gently in my thoughts."