Thank you Susan S. for sending me this lovely quote! I think it is the perfect way to start off today's blog! I think we need a miracle.
"Out of difficulties grow miracles." Jean De La Bruyere
Peter, my parents, and I were focused on one mission today. The mission was making Mattie happy. He woke up excited about the fact that he was going to do something fun today. Fortunately my friend, Karen, last night presented Mattie with an alternative plan from taking a boat to the Statue of Liberty (which is what he originally wanted to do today). Karen used the power of suggestion, she told Mattie about the wonderful Natural History museum in NYC and then told him all about FAO Schwarz. This morning was cool and windy in NYC. Since I have come down with a cold and sore throat, the idea of being on a boat wasn't appealing. Mattie came up with the plan of going to the museum to see dinosaurs and then buying a special toy at FAO Schwarz. So we packed up our bags, and we were off. We taxied to the Natural History Museum and had a great time. They had a special live lizard and snake exhibit. Right up Mattie's alley. I am NOT a snake person, but at this point, I would have stepped on a snake (a non-poisonous one of course and that says a lot since I REALLY dislike snakes) if it made Mattie happy and smile. The exhibit was great and after that exhibit we went up to the fourth floor and saw some amazing dinosaur bones. See the pictures below of our adventure.
In DC, we have Elephant and Donkey statues, but outside the Natural History museum, there were three wonderful horse statues. Most likely because they had a special horse exhibit featured inside, but we couldn't resist posing it front of this horse.
Vicki, Mattie, Grammie, and Pop Pop
The Three Amigos! One amigo is not happy to get his picture taken.
Voted one of our favorite lizards today! Mr. Chameleon! His skin changes color based on his emotions! When he is relaxed and calm, he is green. I agree with Kermit the Frog, "It isn't easy being green!"
Mattie loved seeing this T. Rex. The exhibit left an impression him! He loves dinosaurs and couldn't believe these were real bones!
After the exhibits we had lunch at the museum then jumped into another taxi and headed to FAO Schwarz. What an experience. A toy store like no other! Mattie was a man on a mission, he wanted a lego set, and headed up the escalator to the lego section. The lego section is right near the famous floor piano, that was featured in the Tom Hanks movie, "Big." We all enjoyed seeing the piano being played. It is funny to me, how some simple plastic blocks can make a six year old so happy, but better yet, it is even more perplexing why these plastic pieces have to be SO expensive. Normally I would have refused Mattie's insistence on such a large lego set, but how can you refuse a child who has been through all sorts of pains, and who spent the previous day in a hospital? Well we couldn't and we came home with a large hotel lego set! When we exited the toy store, we observed our own version of Lady Liberty. See below.
Right: the Floor Piano
Left:
Mattie LOVED FAO Schwarz.
Mattie LOVED FAO Schwarz.
Only in NY! We did not make it to the Statue of Liberty, but we did see Lady Liberty. This person was dressed as Lady Liberty right outside of FAO Schwarz. Moving around and talking to people!
Our trip home today took us about four and a half hours, but it was uneventful. We arrived home and unpacked and were greeted by a wonderful dinner from Beth E. Thank you so much Beth, and the soup was very needed. My throat thanks you. Also we love the book of "Hope through Heartsongs." Thank you for sending this to us, and I love the name of the author, Mattie Stepanek!
I want to share three e-mails with you. The first one came from Anne. Anne is the mom of Elizabeth, a classmate of Mattie's at SSSAS. Anne wrote, "We belong to a church in Alexandria. Elizabeth is now too old to go to Enrichment class during the sermon so she sat with us throughout the whole service for the first time. I explained to her what each part of the service was and when we got to the part entitled "Sharing of Concerns and Blessings," she asked what that was. I explained that people can stand up and tell the congregation about friends or family who are sick or blessed. She asked if she could stand up and talk about Mattie. I said sure. That is precisely the point of that part in church. So as the time gets closer and closer she starts to get nervous and ask if I will stand up and talk instead of her. I said yes, but that she could try. She said okay. Finally, the time comes and she raises her hand. Well, she is so short, Pastor Carl does not see her, so she stands up and starts waving her hand. He calls on her, and she stands up and looks around. . . . she completely panicked and looked at me. So I stood up and asked for prayers for "Mattie Brown, a classmate of Elizabeth's who is ill." After church, we saw Pastor Carl and he asked Elizabeth if she wanted to include her friend on the prayer request portion of the bulletin. She said yes. So we went over and she wrote in all of the information so our church can pray for Mattie." What a wonderful gift from a friend. Thank you Elizabeth for thinking of Mattie, and very being brave and willing to speak up in church. We appreciate all the prayers.
The second e-mail came from Tad Ferris. Tad's son, Kazu, is a buddy of Mattie's at SSSAS. Tad wrote, "Mattie of course never ceases to make me smile (in my heart), from his courage, and ability to move through this and focus on those around him. These are his daily gifts to us." I agree Tad, Mattie is a special gift!
The third e-mail was sent by Coach Dave at SSSAS. Dave wrote, "In football, we coaches have a saying that a player is “big time.” That means that the player is a great person, hard worker, tough, smart and does everything the right way. Everybody loves and respects the player. Well Mattie, I want you to know that all of our coaches think that you are “big time.” Keep doing what you are doing and I look forward to seeing you soon." Thank you Dave, we think you are "big time" too.
On the electronic front, thank you Linda, Kim, Charlotte, Susan, Lorraine, Emily, and Karen for the wonderful e-cards, and Mr. G, Denise, and Barbsie for your e-mails. It has been a whirlwind of a visit to NYC and back, though all your messages do not take our pain away, your support means the world to us. As we were driving home today, we received a call from Catherine Silver. Catherine is our nurse case manager. She called to talk with me about Mattie's MRI tomorrow. She acknowledged reading our blog and understood how difficult our trip to NY was. I told her, I am happy to be coming back to DC, but that I really don't feel good anywhere. She heard me, and then said, Georgetown wants to help us in any way possible, and she welcomed us home and said she would see me soon. After my day at Sloan, these simple words from Catherine were like being resuscitated with CPR. I end tonight with a thought from my mother-in-law, Barbara. Barbara wrote to me tonight as she does every day, and said if she could take Mattie's place she would. Though I wouldn't wish Mattie's disease on anyone, I am beginning to understand that Mattie's story affects all of us deeply. Thank you all for walking this scary, frightening, and at times amazing path with us.
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