Saturday, February 6, 2016
Tonight's video was taken on February 18, 2009. It was clearly the night time, as you can hear our sound machine (sounds like rain) running in the background. We used a sound machine to drown out the beeping of machines and the chaos in the hallways of the PICU. However, I captured Mattie on video because when he did not want to be touched or have his broviac catheter accessed. When Mattie felt this way, he would try to curl up in a ball. Which wasn't easy for him given his extensive limb salvaging surgeries. In the video you can hear me talking, but I honestly can't recall who was in the background talking with me. It had to be one of Mattie's nurses, but I can't place her voice.
Quote of the day: Death laughs, no one else does. ~ Amy Neftzger
Peter and I spent most of the day at home. However, by late afternoon we walked and even went out to dinner. On our walk home, we passed the White House. I couldn't get over what I was seeing because the fountain (closest to the gate) looked like it was colored GOLD. Since the childhood cancer community couldn't get the President to light the White House gold during childhood cancer awareness month, this has become a hot topic and sensitive issue for those of us touched by childhood cancer. So I chuckled to Peter and said.... this must be an accident, because the fountain looks like it is lit in Gold lights.
I received this comment today on the blog from one of Peter's clients in Oklahoma. Melody said, "While Peter was in Oklahoma, he showed us his new office space. While I love the idea of just being able to talk to the person next to you without having to move an inch, I hated the no personal items policy. Glad he put the kabash on it! Love the windowsill! Fat chance there isn't a picture of Mattie on his desk :) Been following the blog for years! Glad I found the comment box."
I was thrilled to receive Melody's comment tonight. For many reasons. The first of which is Peter loves traveling to Oklahoma. When Peter travels there, the first thing I hear about is how nice people are on the plane. Which to me is unheard of traveling coast to coast. Peter tells me that people have chats and conversations with each other and I honestly laugh because on each coast of the United States, I think we are trained NOT to engage with those around us. I am not saying it is healthy, but it seems to be our reality. Yet I love connecting with people, so I have a feeling Oklahoma would be right up my alley.
Peter always has a wonderful visit with his colleagues in Oklahoma and this particular visit that he just came home from this week sounded very special. The group went out to sing Karaoke together, and it just sounded like a wonderful way to further relationships and get to know one another better. Clearly not all business travel is pleasant, so when Peter comes back energized this captures my attention.
Of course what captured my attention is that Peter told me that several of his Oklahoma friends read the blog. I am very touched and honored to hear this and again it tells you about the importance of personal connections in Oklahoma. I think I am living in the wrong state! I appreciate Melody's comment because when I heard about Peter's office having a NO personalization policy of one's desk space, I laughed. I laughed because when you spend, in Peter's case 12 hours a day, in a space it is important that you can make your space comfortable and identify it as your own. After all not having an office with four walls and a door is a major adjustment, but asking one to work in a sterile, white washed, no character environment is unreasonable. Naturally decorating with some taste and discretion is important. But it was nice to hear Melody's perspective and to know our feelings weren't unusual.... and she is right.... there is definitely a photo of Mattie (well a few!) on Peter's desk.
Melody, if you are reading this.... you and your colleagues have made my day! Thank you for reading the blog and following our grief journey with me. Hopefully one day I will meet you in person.
Tonight's video was taken on February 18, 2009. It was clearly the night time, as you can hear our sound machine (sounds like rain) running in the background. We used a sound machine to drown out the beeping of machines and the chaos in the hallways of the PICU. However, I captured Mattie on video because when he did not want to be touched or have his broviac catheter accessed. When Mattie felt this way, he would try to curl up in a ball. Which wasn't easy for him given his extensive limb salvaging surgeries. In the video you can hear me talking, but I honestly can't recall who was in the background talking with me. It had to be one of Mattie's nurses, but I can't place her voice.
Quote of the day: Death laughs, no one else does. ~ Amy Neftzger
I was thrilled to receive Melody's comment tonight. For many reasons. The first of which is Peter loves traveling to Oklahoma. When Peter travels there, the first thing I hear about is how nice people are on the plane. Which to me is unheard of traveling coast to coast. Peter tells me that people have chats and conversations with each other and I honestly laugh because on each coast of the United States, I think we are trained NOT to engage with those around us. I am not saying it is healthy, but it seems to be our reality. Yet I love connecting with people, so I have a feeling Oklahoma would be right up my alley.
Peter always has a wonderful visit with his colleagues in Oklahoma and this particular visit that he just came home from this week sounded very special. The group went out to sing Karaoke together, and it just sounded like a wonderful way to further relationships and get to know one another better. Clearly not all business travel is pleasant, so when Peter comes back energized this captures my attention.
Of course what captured my attention is that Peter told me that several of his Oklahoma friends read the blog. I am very touched and honored to hear this and again it tells you about the importance of personal connections in Oklahoma. I think I am living in the wrong state! I appreciate Melody's comment because when I heard about Peter's office having a NO personalization policy of one's desk space, I laughed. I laughed because when you spend, in Peter's case 12 hours a day, in a space it is important that you can make your space comfortable and identify it as your own. After all not having an office with four walls and a door is a major adjustment, but asking one to work in a sterile, white washed, no character environment is unreasonable. Naturally decorating with some taste and discretion is important. But it was nice to hear Melody's perspective and to know our feelings weren't unusual.... and she is right.... there is definitely a photo of Mattie (well a few!) on Peter's desk.
Melody, if you are reading this.... you and your colleagues have made my day! Thank you for reading the blog and following our grief journey with me. Hopefully one day I will meet you in person.
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