In honor of Independence Day, I share with you a link to the song, Proud to be American! Enjoy and hope you all had a happy and safe July Fourth.
Quote of the day: "When you come to a roadblock, take a detour." ~ Barbara Bush
For those of you who wrote to me today, thank you! I appreciate your feedback and encouragement after the very challenging day we had on Friday. Not that it takes away the pain of the day, but there is a great deal of peace knowing that we aren't going through this alone. That you keep on reading, responding, and truly and deeply caring about us. This alone is a special gift, that we never take for granted. The only thing worse than what we are going through is if we went through it alone and without all of you.
In usual Mattie fashion, today was a bit different from Friday. He is still fragile, but we got him out of the room today. I must admit that after yesterday, I feel more down and sad about the nature of our future. However, Ann called me this morning and wanted to go shopping with her friend, Liz, and myself. So I did join them for about two hours. Shopping is a thing of the past for me, well frankly VERY past. Mattie never liked going shopping, so I haven't really been shopping for myself in years, not like I used to. I am lucky to have my mom and dad, who usually send me clothes and things as gifts. Now shopping is virtually impossible. In a way, when I am not caring for Mattie and working and focusing intensely on him, I feel a bit lost. So shopping for me was a strange feeling. It was strange to be looking at clothes and other items. A part of me couldn't get over all the people buying things, if some of you did not let me know about the state of the economy now and then, I would be thinking we are in great shape as a Country. With Mattie's illness, also comes other issues for me. In a way there is no desire to buy new things, because where am I going to wear them to? To the hospital? Who am I going to be seeing (of course no offense to my friends at Georgetown Hospital!)? I also don't feel like myself. I have led a sedentary life for a year now, and clothes don't seem to make me feel or look happy anymore like they used to. So I was out shopping, yet interestingly enough doing something more normal doesn't make me feel more normal. In fact, if this makes sense, doing something normal only makes me see how different I am from others. While inpatient at Georgetown, hospital living became my way of life. That was my community, and being sick was what each day held, along with fighting cancer. Now, I know what needs to be done, but without Mattie's help and cooperation, I have no idea how recovery will get accomplished. So I feel as if I have been uprooted into a brand new culture, and at this point I am just trying to learn to communicate with a new language. The language of hope and healing. However, hope and healing just doesn't happen, it requires a great deal of pain, sadness, and turmoil to trudge through in order to achieve it. It is certainly worth it, but I remind you, Peter and I are not as energetic when we started this process 12 months ago.
This morning, Peter and I debated back and forth as to whether we leave the resort and go home. However, Peter was scheduled to play golf with Bob and I wanted him to have the opportunity to get outside, play golf (which is something he likes), and to forget about our situation for five hours. I hope this venture was successful. Meanwhile, when I got back from shopping, I got Mattie dressed and he went down to the pool to build a Lego. He was shy at first, but then Jackson (Liz's son; Liz is a friend of Ann's) came over to play with Mattie. They built a Sponge Bob Lego set that Ann gave Mattie today. Mattie and Jackson were quite engaged with each other, and in fact, Abigail came over several times to play too. So unlike Friday where Mattie was completely closed off, today, he allowed a few people in his life. What I found particularly interesting was the discussion the kids were having about cancer. Jackson asked Mattie what part of his body had cancer, and how he got it. Mattie answered both questions very well. He showed Jackson the scar on his leg, and explained to Jackson that he doesn't have cancer anymore. Jackson admired all the stuffed animals Mattie has attached to his wheelchair. He told Jackson that his friends gave the animals to him because he had cancer and wanted to cheer him up. I really hadn't heard Mattie use the term, Cancer, so freely. But he was talking about it very knowledgeably, you would have been proud of him! I removed myself from this conversation between Jackson and Mattie, because I wanted to see what was going to transpire. At one point Jackson's ear was bothering him, and Abigail came over to see it. They concluded that perhaps he had cancer in his ear. Ann resolved that issue, but it spoke volumes to me. When another seven year old child sees Mattie who is sick and disabled, I can see the likely deduction is this could happen to me! Below are some pictures we took at the pool!
Left: Mattie and Jackson discussing how to put the Lego set together.
Right: Mattie, Abigail, and Jackson, working on a Sponge Bob Lego set. It was amazing to see how many other boys around the pool wanted to join in and build. Apparently Legos has a real draw!
Left: Jackson, Abigail, and Mattie
Right: Jackson and Mattie
After several hours by the pool, Mattie wanted to go back to the room, and Ann asked Mattie if he wanted Abigail to come up with him. So Abigail joined us for a while, and she and Mattie watched Scooby Doo videos together. They were both very peaceful after being outside in the sun and heat. Mattie and Abigail were glued to Scooby Doo, and even made up their own rendition of the Scooby Doo theme song. In true seven year old fashion and humor, Scooby Doo, became Scooby poo, which turned into Scooby poop. They were squealing with laughter and I videotaped this performance, which they were both very proud of.
Mattie decided to join Ann and Liz's family at dinner tonight. We went out and Mattie was engaged with Jackson (Liz's son) and Abigail. Jackson even gave Mattie a sticker tonight which says, "Mattie King for Two days." They colored together, ate, and played with Legos. So overall, Mattie had a great day. In fact a night and day difference from Friday. Here is the problem with this though, certainly I am thrilled he had a great day, but I feel like I am riding an emotional rollercoaster. I never know which emotion I am going to get on any given day. This level of uncertainty and volatility is complex and wearing. Mattie may have moved on from Friday, but I am still stuck there. It is much harder to recover from set backs now because we are tired. As we head into Sunday, we will be packing up and heading home. Two days goes by so quickly, especially when the first day is so challenging.
I would like to share three messages with you tonight. The first one is from my friend, Charlie. Charlie wrote, "So much sadness and disappointment in the blog for Friday. I know everyone was really hoping this would be a good break for all of you and hopefully, Saturday will be a better day. Your feelings of jealousy at others' enjoyment is totally normal; it is the way your family should be living but cannot. Mattie has been through so much this year and he knows how ill he has been and what he has had to go through to come this far. A lot of his behaviors, which I would call "survival" behaviors (stubbornness, putting oneself first, insistence on routine) are needed for the illness but are counter productive when trying to move to healing. It is going to take him some time to relearn his social skills and how to get along with others. Of course this is not helped by people who don't understand what it is like to have a ill child; their ignorance and rudeness puts you and Mattie on edge making the whole process more difficult. I hope one day in the not too distant future, you can look back on this and say with positive feelings, "we got through it and look how well Mattie is doing now." In the meantime, you may have to treat Mattie like a much younger child who requires positive reinforcement for every social step forward he can make. He has wonderful role models in you and Peter and those you are close to, and if anyone can be successful in this endeavor, it is you."
The second e-mail if from a friend and fellow SSSAS mom. Tamra wrote, "Well, dear friends, fireworks are literally and figuratively indescribable, mysterious, frightening, beautiful, humbling...all at the same time. I loved the preview photos of what will come on this evening of the celebration of our nation's independence...But your own personal fireworks yesterday... Vicki, you described as hell..is the frightening part of personal fireworks...they can be so explosive -- they can linger or be a burst...my heart breaks for the hot and awful and explosiveness of what you go through. You know, all of us wish we could wash away the bad stuff but we can't.. we can just hold you closer in our hearts and minds and prayers that there is a little sweetness and beauty and progress in each day for the 3 of you. Marriage brings with it a ton of ups and downs in everyday life..compound that with the fragility of your sweet Mattie's battle it adds so much more work to the moving forward part of the growth of a family. Easy for me to say as an outsider looking in, but I am humbled by the raw emotions that you bear..and share with all of us. For our little team Bentsen, it reminds us to be grateful and loving and joyful and celebratory with our lives as individuals, as parents, as children, as friends. And, we hope that in your darkest most frustrating times that you remember that we love you 24/7. Here's to you, dear friends."
The third message is from our friend and former neighbor, Goli. Goli wrote, "My dear Vicki, I don't contact you enough, but I am always at ahhhhh on how you and Peter do it. As we have discussed before, my faith in any supreme being has never been very strong, but last year was even worse. Mattie's illness, and in general all the injustice, has shaken my already shaky belief in any supreme being to the core. But, as an individual, every one wants to believe that there is something, something that brings about this unbelievable order. Everyone needs to sometime just cling on something, something much bigger than what we can imagine. I have been thinking about why this had to happen to your family for many months, and have not been able to find any reason. In addition, from my roof garden I watch people on the street. One particular one has touched me a lot. There is a 95 year old, frail, lonely, lady who wears the same thin winter coat in all seasons. Rain or shine, every day, she walks from her apartment which is about 3 blocks to the grocery store. It takes her about 3 hours to do this. And each time seeing her makes me again think of God's reasoning and choices. During my trip to Iran, I discussed your situation with groups of people who believe in the supreme being. Some who are more conservative than others. I asked what is the reason this had to happen? Why is this the wish of Allah? And what good comes out of this? Wow, how cruel of a wish this has been for all three of you. Today's blog, was almost like lightening. Today, you said "perhaps I am destined not to be happy," and it simply dawned on me. There is no reason for you, Peter, and Mattie to go through this, no reason at all, unless you are destined to go through this nightmarish first hand experience so the three of you can impact and change lives of millions of people. Today I thought maybe be there is a God, and maybe there is a reason. Mattie is very correct calling the other kids "kids." As it is said in Farsi, Mattie has gone on a hundred year trip in one year. The rehabilitation will be long, hard, and will have its toll on all of you. But I am sure you will see him again change to the Mattie we knew, just much more experienced."
Saturday, July 4, 2009 -- Happy Fourth of July!
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