Quote of the day: "In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit." ~ Albert Schweitzer
Mattie woke up bright eyed and chipper today. He was raring to go and play at 8am. I unfortunately wasn't as perky. I am going on day three of a migraine headache, which is only exacerbated by a lack of sleep. Mattie wanted to play the board game Sorry this morning before even heading down for breakfast. I must have looked pretty bad in his eyes, because he had me lie in bed with him first and snuggle, in hopes that I would feel better. Very thoughtful, and I was touched by his concern, but what I truly need, five minutes isn't going to solve. We played Sorry together, and naturally I lost. I have perfected the art of losing over this year, and frankly now that I am trying to play fairly, I STILL lose. Which naturally brings a smile to Mattie's face.
Mattie had breakfast, and we played intensely for hours. We played with Lincoln Logs, Legos (naturally), planes, cars, etc.... getting the picture?! At 2pm today, I had it. I needed to get out of my pajamas because it wasn't helping my mood in any way. Thank goodness for some new Scooby Doo movie that was on TV this afternoon, because it gave me a moment to take a shower, get dressed, and also give Mattie lunch. But by 4pm, I couldn't take being trapped at home another minute. So I encouraged Mattie to have a change of scenery. So he agreed to go for a walk. As many of you know, we purchased a new wheelchair for Mattie. I am in LOVE with this 14 pound chair, and I never knew I could love an inanimate object. It is so much easier to push and lift. Which is great, because lifting Mattie non-stop during the day is as much as I can handle. Mattie and I walked around for about an hour today. We walked to the Kennedy Center, saw the fountains, walked inside, and even visited the gift shop. I gave Mattie the camera today, and he wanted to snap a picture of one of the fountains at the Kennedy Center. So you are seeing the fountain from his vantage point.However, along our trip, it never ceases to amaze me who is staring at Mattie when we are out in public. Though today, I am not sure who looked like they needed more help, Mattie or I. It was a toss up. None the less, the stares and looks are something that still bothers me, and I can't seem to move passed this. I think what also bothers me is that Mattie is cognizant of these stares as well, and will ask me if people are staring at him because he is "ugly." Each time I hear that word, "ugly," I feel the need to address it immediately.
We are a society that is too wrapped up with false outside appearances. We strive to be like what we see on magazine covers and on TV, but guess what? What we are seeing as we wait on line at the grocery store check out counter (with rows of magazines staring at us) are all illusions. Having lived in LA, and having the opportunity to see some of these folks without their make up on, without a team of professionals supporting them and air brushing their pictures, they look just like the rest of us. Well actually maybe worse. So our definition of beauty needs to be redefined, and it needs to become more holistic, taking into account what is most important, and that is what lies within the person. Of course societal pressures and norms are hard to explain to a seven year old, but none the less, we need to start demystifying these things for our children EARLY on, because more children in elementary school than ever before are having issues with body image.
On our way home, there was a massive accident in front of our complex between a car and a bicycle rider. There were fire engines, police cars, and an ambulance. Mattie was fascinated and we watched the rescue folks for at least 20 minutes. During this time, we chatted with people passing by, and one man, who I did not know, introduced himself to us, and started talking about ways to improve the safety of bicycle riders in the city. Mattie participated in this conversation, and actually had some good suggestions!
Along our walk, Mattie also collected acorns and rocks. He really enjoyed doing this, and was brainstorming what to do with these items when he got home. When he got home, Mattie decided to put the acorns (covered in mud naturally) and the rocks (also a mess) in a basin of water. He wasn't cleaning them, oh no! He was creating a soup, and guess who had to pretend to drink this soup? For the next two hours, he threw everything in this soup, and we made a whole play scenario around it. I was the disgruntled customer and he was the nasty chef working at a restaurant called "Cheap Eats." In the play scenario, Chef Mattie was gaining notoriety in the city, and other restaurants wanted to hire him. Or they did, until they spoke to me about his horrible cooking. We had many chuckles around this, and Mattie laughed so hard at my reactions to his soup, that he landed up getting the hiccups.
When Peter arrived home tonight, he too had to taste the soup. However, after that, Mattie seemed like he wanted to settle down and just watch a video. We want to thank my Cousin Donna for dinner tonight, and for supporting us from afar! Mattie appears to be dealing with another bout of nausea. He is back on Zofran (an anti-emetic), and I notice within 30 minutes of taking this medication, he seems to be able to eat alittle something. But I love when Mattie's doctors tell me this is unusual to be having nausea almost two months post-treatment. I can't explain it, but he does have nausea!
As we head into Tuesday, Mattie will visit Georgetown tomorrow for his appointment with Dr. Biel, his psychiatrist, and then will have his physical therapy appointment with Cathy, Anna's colleague. In the evening we are meeting up with Ann's family and taking Mattie to Wolftrap (A National Park for the Performing Arts) to hear the music of ABBA. I can't wait to see how Mattie reacts to hearing this music. ABBA has played a huge role in our therapy sessions in the PICU, and Linda even played ABBA on a CD for us as Mattie had his last set of PET scans and when Mattie headed off to have his lung surgery. The Pre-Op area may never be the same at Georgetown! Needless to say, I am not sure I will ever forget ABBA music for the rest of my life. It instantaneously takes me back to the PICU, watching Mattie learning to walk, and strolling the hallways with his buddy, Brandon!
I end tonight's posting with a message from my friend, Charlie, and then a video clip I received from Anne, a fellow SSSAS parent and Team Mattie supporter. Charlie wrote, "Vicki, I am glad you had some time to yourself today. Cooking breakfast, doing errands and laundry are all normal events and while they aren't "special" I think they are part of the building blocks to recreating a normal life. While Mattie's comfort zones are small (Lego store, Home Depot and Georgetown), not long ago, he was unwilling to go anywhere at all so this is something of an improvement. I know you are glad Ann's dad came through the surgery well and reading about her parents reunion after six days apart was very touching. Loving relationships continue to evolve and change just as the people who make them up do, but the connections remain intact even when the people are physically separated. We are however, meant to make physical connections as well as emotional ones, otherwise we tend to become isolated and depressed. I hope Mattie's improving health will allow all of you to reconnect with family and friends, and share meaningful times together."
Anne sent me this wonderful video clip today of Sean Swarner. Sean is the first cancer survivor to climb Mt. Everest. He went to college with Anne, and Anne has connected me with Sean this year. I have had the opportunity to e-mail back and forth with him. Sean has survived two different types of cancer, and his story is not only remarkable but heart warming. He makes you believe that anyone has a good chance at survival. The key is not to give up hope. This gets back to my mindset change that I am desperately working on as we move into the future. As Sean says, "It's about screaming hope at 29,000 feet."
2 comments:
I have struggled with the staring thing too. I used to just ignore it, but then I got worried about how the world must look through Emma's eyes- how awful to see nothing but gaping mouths and wide eyes. I wish I could strap a video camera to her head and make a video so people can see how they look in her eyes and how harsh and full of stares her world must seem. So, I've developed a new strategy. Whenever anyone stares at her, either she and I (if she'll cooperate) or just I say hello directly to them with a big smile and an exagerated happy tone. Sometimes, they just look uncomfortable and turn away (at least they stop staring at us) but often, they'll return the hello and smile. I've even seen parents who were tolerating all the staring without so much as a peep try to educate their children in responding politely if the chld does not respond appropriately to the "Hello". At least this way, I feel Emma doesn't see only that stares all the time, she gets some experience with smiles.
I really wish that teaching their children not to stare would be a part of what parents did to teach politeness just like they do saying please and thank you. It isn't though and children in particular seem to stare all the time.
That video is fantastic!
I'm sorry that people seem to stare at Mattie - he is such a beautiful child! I wonder if he were to look back and smile and say Good Morning - or such, what the response would be. Mattie has such an iviting smile! If he tries it, let me know.
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