Quote of the day: "When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child." ~ Sophia Loren
Before I begin tonight's blog posting, I want to thank you for pre-registering for Mattie's walk on May 9th. We truly appreciate your support, contributions, and energy behind this special event!
Whitney (one of Linda's former interns) came over today to play with Mattie for four hours. Whitney just landed a full time job, so this is my last week day that I will have help. I will miss my couple of hours to myself on Wednesdays and I know Mattie will miss seeing Whitney as well. However, we couldn't hold Whitney back. She just graduated from college and I know finding your first job is no easy decision or task. So I wanted to make sure she knew we supported her decision. None the less, it leaves a void in our life. While Mattie was having a good time with Whitney, I left the house and did a couple of chores and then met up with Ann for lunch.
While Ann and I were at lunch, we saw another SSSAS mom, and said a quick hello to Laurie. After lunch, I went with Ann to visit her parents. Ann's parents were both resting when we got there, but Ann woke her mother up, and Mary (Ann's mom) and I spoke for about an hour. I really enjoy hearing Mary's stories and her reflections. She apologized to me today for being boring. I told her that there was nothing she was telling me that was boring. After all, what could be boring about hearing about someone's life. Mary and Ann's dad always ask me about Mattie, and they know what it is like to have a son with cancer. Mary and I discussed our lives, and I said to her that I feel like I exist but am not really living. This was a first for me to actually express this, but for Peter and I, we live from one crisis to the next, one task to the next, and the fun and spontaneity of life is gone. This is NOT the NEW NORMAL (which is a terminology I STRONGLY dislike), but a special torture that with each day sucks the life out of us.
When I got back home today, Mattie was having a good time playing with Whitney. In fact, Whitney was playing the game that Mattie, Alison, and I invented on Tuesday. Clearly Mattie enjoyed that pretend story we created with the bunnies. Mattie wound down a bit this afternoon, and we watched a Scooby Doo video together, but in the midst of all of this, I noticed that Mattie's left arm continues to bother him. So tonight, I sent Dr. Bob an e-mail because I rather play on the safe side than to assume that nothing is wrong. I know that the pain was caused from him bumping himself on his wheelchair, but what damage he did in the process, I have no idea.
When Peter arrived home, we all headed to the Newseum. Jenny (one of Mattie's art therapists) invited us to attend the movie screening of Earth produced by Disneynature. Disneynature is a brand new film label, that from my opinion it trying to blend education with entertainment. In addition, to the film series, each movie will have companion educational activity guides and educator guides. The movie Earth tells the remarkable story of three animal families and their amazing journey across the planet. I attached a trailer for the movie, if you would like to see it yourself: hbx.hrf=http://disney.go.com/disneynature/earth/earth_core.swf
The cinematography is incredible and there are many memorable moments in the movie. When we arrived at the Newseum, everyone was so thoughtful and kind to us. We were assigned a Newseum representative, Ruby, who couldn't do enough for us. She helped us get settled, got Mattie popcorn and water. She even secured Mattie a special chair so he could see over people's heads. We also had the wonderful opportunity to meet Jessica Moore from the DC Disney office, who helped us get into tonight's event, and you may recall she also secured us Lion King tickets when we went to New York. Another treat for the evening was meeting Jenny's parents. They are delightful and down to earth, so it is no surprise where Jenny comes from. They both made it their business to introduce themselves to Mattie tonight, and I was touched by their kindness.
Before the movie began, we heard from two congressmen, Rep. Markey and Rep. Upton (co-chairs of the US Energy and Commerce Committee), and two Disney representatives. Mattie was glued to the movie as were we. However, I came to a realization while watching the movie. The movie discussed how animals around the world fight for their lives and survival each day. Because in the hierarchy of animals there is always an animal that is the hunted and another that is the hunter. Unlike our animal friends, most of us do not live with the threat of our physical survival and safety each day. When I heard this in the movie, it hit me. Though clearly, my family's situation is different from these animals, one thing is similar. When you live with cancer, the cancer is the hunter, and the body is the hunted. Sounds primitive, but true. What makes our life so uncertain each day with Mattie, is we don't know what is in store for us with this terrible disease. It is just as devastating as a lion stalking an elephant. We live with this intense fear which brings about that flight or fight response. But unlike the elephants who experience two minutes of panic during their days, we live in a constant hyper alert state of stress. None the less, this movie gave me a greater appreciation for the animals on our planet and what they must overcome for survival. In a way, the movie forces you to think beyond yourself which is a very important and humbling thing to do.
As the movie came to an end, Mattie worked himself into a state, because he wanted to go to the Newseum's gift store. It was important for him to bring something home from tonight's adventure. As I was trying to figure out if this would be possible. Jenny came over to chat with Mattie and she stayed with us for quite some time. I found Ruby, who was assisting us all evening, and asked her if she could help me secure something from the gift store. Ruby tried to get the gift store open, but it was closed and no one had the security code to open the doors. Ruby broke the news to me without Mattie present. Jenny observed this discussion happening in the background and ran over to her dad, and literally took his wonderful Disney pin off his suit. Jenny gave the pin to Mattie in hopes that it would bring a smile to his face. In addition, Ruby was able to track down a Newseum baseball cap, and she gave that to Mattie. So Mattie left with two great items for the evening! He of course was happy. But Jenny and Ruby really went out of their way for Mattie tonight. Ruby doesn't even know Mattie, but she couldn't do enough for us, and it restored my faith in the goodness of others (who do not know us).
We would like to thank the Putnam family for a wonderful dinner. Mattie loved the Scooby gift as well. Thank you Grace for the support and wonderful note! As we head into Thursday, I will be taking Mattie to the clinic. If Mattie meets his counts, he will go inpatient to receive high dose Methotrexate.
I end today's posting with a message from my friend Charlie. Charlie wrote, "Tuesday was a perfect example of above and beyond on Mom duty. No one who has not spent a day with an ill child who has enough energy to play can appreciate what a mom does. This reminds me of when I was home with a child with measles but that was only for a week rather than months and I remember how exhausted I was at the end of the day as the on call nurse, playmate, etc. That duty did not include physically moving a child who is only partly mobile, pushing a wheelchair for distance (should be an Olympic sport) and doing all this on limited sleep. And, oh yes, doing this for months on end and not for a week. Truly Vicki, I don't know how you do it and I cannot tell you how much all of us who read the blog daily admire and are amazed by your caring, compassion and determination day in and day out."
No comments:
Post a Comment