Quote of the day: "We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop." ~ Mother Teresa
The COUNTDOWN is TWO days from the March for a Mattie Miracle! We have around 300 registrations! Thank you for the contributions and all the support! We thank all our volunteers who are working extremely hard to make this day a success!
Before Mattie headed to bed last night, he slowly slid down from the couch onto the floor to play with his Legos. Some how when he did this, he hurt his left shoulder. This is reminiscent of the last time Mattie slid off his wheelchair. In any case, I called Dr. Bob, and Mattie is headed back to Georgetown Hospital on Friday to take an x-ray. Mattie had a hard time going to sleep last night because of the pain in his shoulder. So I resorted to Tylenol and Mattie resorted to taking it. Which gives you some understanding for Mattie's level of pain. This morning Mattie also reported that his right ankle was hurting him and he refuses to put pressure on his foot.
Mattie slept in late. This was amazing because they were doing construction on our outside terrace again. There was a drill that was making a racket, and the workmen were talking loudly. Yet it did not disturb Mattie's sleep at all! I decided by 11am though that I would have to wake Mattie up for his television appearance. Mattie seemed excited for what was going to happen and cooperated as he was getting dressed.
Alison, Mattie's media and communications coordinator and our friend, came over today to support us for this interview. She brought Mattie some of his favorite frosted donuts! I believe that if today's interview went in the wrong direction, Alison would have immediately stepped in. It is great to have a friend who can competently and effectively do this. Thank you Alison for spending part of your day with us, and supporting us and helping us to secure this advocacy effort.
At noon, Peggy Fox (Digital Correspondent for Channel 9 News) and Michael Trammell (camera man), came over to interview Mattie. They were both lovely and made us feel very comfortable. They really tried very hard to engage Mattie and got down to his level on the floor and asked him about his Lego sets. However, I think the whole set up and camera was a bit intimidating to Mattie. Mattie has been through so much already, that perhaps this was too much for him. He had moments where he was engaging, but overall, anything these days which doesn't involve sheer play, seems to irritate Mattie. Peggy asked Mattie for some comments about his illness, but Mattie did not answer them, and instead continued talking about his suspension bridge. I was a little saddened by the fact that Mattie did not talk with Peggy, because he usually has so much to say. I really wanted the public to get to see the witty and lively side of Mattie. But one thing I learned is that you can't control Mattie or have him do things on command.
Peter then brought Mattie upstairs to play with my parents. Mattie enjoyed his time with them, while Peggy interviewed Peter and I. I thought that the interview was a great experience, and it was wonderful to watch Peggy as she prepared to talk in front of the camera. Peggy and Michael were a great team, and it was very easy to talk with both of them. I really felt as if they were moved by Mattie's story. For those of you who were unable to see the News tonight, I attached the link to Mattie's story which aired on DC's channel 9 during the 5pm news.
http://www.wusa9.com/news/local/story.aspx?storyid=85512&catid=158
After the interview was over, we gave Peggy and Michael, t-shirts and bracelets for Mattie's walk on Saturday. We then said our good-byes, and also said good-bye to Alison, who we greatly appreciated staying the whole time! We then took Mattie out to lunch. Mattie has been very excited to go out to lunch for a long time. We wanted to reward him for doing a good job today. Transporting Mattie today was DIFFICULT. His ankle and arm hurt him, which made it virtually impossible to transfer him in and out of the car. Also we had torrential rain at times, which made getting the wheelchair out of the car challenging. However, Mattie ate very well at lunch. He ate more at lunch than I have seen him eat in a whole week. He is enjoying his time with my parents, and we played a wonderful round of I Spy at lunch! After lunch, we went to the toy store. I have promised Mattie for the longest time that I would take him to the toy store to pick out a toy of his choice. He selected a car track. I am just happy that Peter was around to help set it up, because it wasn't easy!
When we arrived home from lunch and the toy store, we met up with Peter, who picked up Karen (my lifelong friend from NY who came into town for the walk) at the train station. Karen and I have known each other since 6th grade. When we all got inside, we watched the video tape of the 5 o'clock news. We all loved it, and Mattie was glued to the videotape. He enjoyed seeing himself and his suspension bridge on TV. I was thrilled to see him smile. What a great smile (but I know I am biased).My dad and I handled all of the laundry we had to do, and my mom and Karen had a great time checking out the News website with Mattie's story. Mattie is having a good time getting reacquainted with Karen. They did connect the dots and cars together. Mattie also introduced Karen to a show on the TV channel Noggin. We were all laughing hysterically about the show.
We want to thank the Arends family for a lovely dinner. I appreciate Karen cooking the pasta tonight for us. We enjoyed sitting down as a family, and I was happy to see Mattie eating. As I write this blog, Peter and Karen are outside walking with Mattie so he can get some fresh air. Mind you it is 11pm. It is going to be another long night! What I would give for my former life, which entailed not waking up every two hours and having a very sick child. It is my hope that our story makes you pause each day and say, Thank God, I am healthy and so are my children.
I would like to end tonight's posting with three beautiful messages I received today. The first message is from my friend, Charlie. Charlie wrote, "Full day on Wed for both you and Mattie. I am glad the cast is off and he can begin work on fully using his leg again. The race pictures are great and the racers all deserve a medal. Mattie's tile is wonderful and much better than I could have created. Mattie is well on his way to redecorating the clinic all by himself--his fifth tile--WOW. That is quite an accomplishment but also a statement of just how long you have already been in the fight. I hope you got some sleep last night although I suspect that if things went as usual you were up and down all night with bathroom breaks. I can't wait to hear how the interview with Channel 9 goes and like everyone else I look forward to watching you on TV. Mattie (and you and Peter) are definitely the stars of this show although all of us wish that the reason for it was a more positive one. You've done a great job in making something so awful a part of daily communication in a lot of homes. I think that as well as raising awareness you've also helped give us all a renewed appreciation for what is really important in life."
The second message is from Mary D. Mary is Mattie's technology teacher at SSSAS, and a delightful and empathetic human being. Mary wrote, "I read Mattie’s blog everyday and pray for love, strength and hope for your family. You journey reminds me to continue to seek God and endure my struggles rather than blame him for my hardships. You have been amazing throughout everything. Your strength and drive continue on regardless of the situation. You truly are a hero. Stay strong."
The final message is from Sarah Marshall. Sarah Marshall is one of Mattie's HEM/ONC nurses at Georgetown. Sarah Marshall is a cancer survivor herself, and a phenomenal human person. I am so happy my family has had the privilege to get to know her. Sarah Marshall wrote, "Hi Peter, Vicki, and of course, Mattie, just wanted to write you all a quick note to tell you all that I am thinking of you all constantly and especially this weekend for the walk. unfortunately, I am working Friday night, Saturday night and Sunday night so I am not sure if I will be able to make it but I am going to do everything I can to make it out at least for a little bit! I am glad Mattie got to go home yesterday and also glad I got to see yall for a quick visit. it always makes my day to see any of the Brown family. I know I have told you all this before, but i just cannot tell you how much I have loved getting to know your family over the past 9 months. Mattie is truly one of the strongest people I have come to know in my life. it is amazing how happy just seeing Mattie and both of you makes me. even when Mattie is not feeling his best, just being around him makes me appreciate life and family more. You two are the best parents and I know that you don't hear that enough. What you do for Mattie is so admirable and he is lucky to have such relentless support. I know first hand how crucial family is to fighting childhood cancer. Please know that your family is always in my thoughts and prayers."
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