Monday was a night to remember or actually to forget! Mattie was up on the hour, crying, moaning, and very agitated. At a couple of points in the night, while he was crying he was talking to us and also not making any sense in what he was saying. At some point, you begin to ask yourself, how on earth do you function the next day on virtually no sleep? We had to leave the hospital this morning by 8am to arrive at our appointment with Dr. Nita Siebel. Now to add insult to injury, there was NO hot water to shower with. Some people need coffee in the morning, others need their morning paper, I need a shower. I was less than a happy camper heading off to this meeting this morning, with no sleep and a freezing cold shower. But it seems so fitting for us, why should anything go smoothly?!
In order to attend this meeting with Dr. Siebel today, it took a whole lot of coordination. Ann came over at 7:45am to watch Mattie. In order for Ann to do this, Tanja helped take Ann's children to school. Ann had to leave the hospital at 11:30am to take her dad to the doctor, and then my parents took over. So literally attending one meeting, required a lot of people to juggle their schedules. Thank you! Peter and I both feel that meeting today with Nita was very important. We met Nita at Children's Hospital, which is an experience in and of itself. Just parking is an event, like driving around an airport in circles. It is ironic, that you don't appreciate the hospital you are in until you visit another hospital. Peter and I had a lot to chat with Nita about, specifically the debate about the percentage of necrosis and the chemo options to consider for Mattie post-surgery. Thank you Ann for your help today and for the wonderful banana bread (I love the way you make it, it's one of my favorites), donuts, tea, magic crystals, snacks, ghost craft and other goodies!
While we were in the appointment, Mattie spent the morning sleeping and recovering from his night and morning of vomiting. When I returned he awoke, and then we struggled for a while until Mattie found something he wanted to do. Fortunately Linda came in and offered Mattie a remote control car. That was a pretty difficult offer to turn down. The remote control car brought a smile and many hours of enjoyment to Mattie today. Isn't it something how one item can bring such happiness to him and to those around him who are watching him playing. Elizabeth, an art therapy intern, spent a great deal of time playing with Mattie and his car. She got run over, chased, and hit. But she took all of this in such good stride. Below you will see a picture of Mattie in the playroom with the car, and then with Whitney and Lesley. Notice that Mattie strapped puppy "JJJJJ" to his car. This was a game my mom and Mattie developed today, with all the stuffed animals in Mattie's room, and in particular the Jack Russell stuffed animal was named JJJJJ. Just trying to say J five times was a riot to listen to.
While Mattie was playing today with my mom, I sat still for a moment, and listened to their creative puppy game. I snapped a picture of them together, as they were having a great time saving puppies.
This afternoon we had a surprise visit from Alison. Alison answered my request, or actually Mattie's demand, for Scooby Doo mac and cheese. After Alison left, he proceeded to eat a tupperware full of the mac and cheese. Thank you Alison for coming over today, for the most necessary pasta, chips (Peter thanks you, so he doesn't have to search for chips at 4am), and of course the chocolate!
We want to thank the Keefe family for a wonderful Asian Bistro dinner. It was super tasty! I would love to know what the name of the beef dish was, we thoroughly enjoyed dinner, and Mattie loved the pizza and the fortune cookies. He claimed all three fortunes for himself! Thank you also for all the generous gifts such as the Frog and Toad Book (apparently one of Peter's childhood favorites too), "Streams in the Desert," tea, pumpkim muffins, and gift card. The mac and cheese will come in very handy this week too! Your kindness and support is very much appreciated. Mattie enjoyed seeing Eliza too. Eliza is Tim's sister, and Tim and Mattie went to Kindergarten together. I could tell Eliza wanted to see Mattie, and she jumped right on in and played with him and his remote car. See Eliza below acting like a tunnel for Mattie's car!
I would like to share an e-mail that I received today from Liza. Liza is a SSSAS upper school mom, and you may recall that Katie, Liza's daughter, sponsored a very successful bake sale last week at the upper school. Liza shared a story with me that Katie relayed to her regarding her experience at the bake sale last weekend. Apparently Katie got to school early to set up, and Liza wrote that "a gentleman asked Katie how much things were and handed her some bills. Somehow, she missed seeing who it was and what he had given her. When she looked in the jar, she realized that he had given her two $50 bills. Wow, what a way to start the sale! When I showed up with a late lunch, there was a sister of one of the St. Alban's players who had come back to buy something else. She was so sweet, asked questions, read the information about Mattie and loved the photograph of Mattie and the football players. Then at the end of the sale, Katie said that one of the St. Albans' moms came over with a $20 and bought some things for the players, then she came back again with another $10 because they all wanted to support the sale." Thanks Liza for sharing this story with me, and letting me know how much Mattie's story is impacting those around us.
Peter and I had a phone conversation with Dr. Bob Henshaw tonight as we prepare for Mattie's next major surgery next wednesday. Bob walked us through the surgeries and the recovery process. Tomorrow is our second multidisciplinary meeting, in which Mattie's care team will convene to discuss how to help him through the next major hurdle. We are slowly trying to get a handle on the surgeries that will impact Mattie's physical abilities, and yet feel equally as challenged about making the right decision regarding post-surgery chemo options.
On the electronic front, we want to thank Karen, Lorraine, and Brian Boru for their wonderful e-cards! As the day is winding down, Mattie is wide awake and constructing a lego set. As usual Peter doesn't disappoint, he always comes to the hospital from work with a goodie in hand. Mattie and Peter love building together! I can't help but reflect on today being a major day for our country, election day. Normally this would be a day I would be following the electoral college votes very carefully and would be glued to the political commentary. But what it comes down to for me, is that neither McCain nor Obama can change my family's life circumstances. Neither have the power to help Mattie, and at the moment that is all I am focused upon. I have come to see and experience firsthand a world much larger and more complex than the things we typically get wrapped up in, and that many things are out of our control and guided by a higher power. When you have a life altering event happen in your life nothing else really matters, and what used to matter seems trivial and inconsequential.
1 comment:
I view the pictures of Mattie and gain such strength in better facing my what so seem to be inconseqeuntial challenges.
The sardi=Brown family are the best.
Post a Comment