The message of the day (Thanks Ann!): If God brings you to it, He will bring you through it. I hope so, I am counting on it!
Mattie slept through the night on sunday, and woke up in a good mood today. He sat through a central line dressing change this morning and was okay with the fact that he had a clinic appointment today. He always checks with me to find out if he is going in for just a check up or whether he is getting admitted to the hospital. When he arrived at the clinic, he was looking for Jenny and Jessie and found them and instantanously got them involved in a project. Jessie and Jenny have been accumulating boxes for Mattie. One of his favorite mediums to work with. He literally pulled out every cardboard box possible, and before I knew it he was creating. However, what he was creating today, in my book, was down right creepy. He created a huge life size model of a cockroach, and then designed a castle for this roach to live in. Don't ask me where he gets these ideas, but I think he loves to gross me out. Below you will see the roach and its house, I am sharing it with you because misery likes company.
Jenny downloaded a picture of a roach from the Internet, and then Mattie and Jenny designed the model magic roach!
The lovely model on top of Mattie's head!
Every roach deserves to live in a castle don't you think? Mattie's roach castle includes a staircase, and plush pillow accomodations!
Yuck!!!!!!!!!!!!!!!!
Mattie had a good clinic visit, and had his vitals taken, several blood tests completed (in preparation for his surgery on wednesday), and had an exam with Dr. Synder and a third year medical student. It is always fascinating to meet medical students and see how they deal with Mattie. Today Mattie turned to the student and said, "who on earth are you?" We all broke out in laughter and he put her through her paces. In addition, Dr. Toretsky came to visit us and I spoke with him about some of my concerns regarding Mattie's chemo treatment post surgery.
After our clinic visit, which mind you we were there from 11:30am until 2pm (because Mattie loves visiting with Jenny and Jessie), my parents and I decided to get something to eat. Mattie was starving by that point and said he could eat a "whole pig." Interesting! He ate very well at lunch and had fun chatting with us and coloring. When we arrived home, Mattie showed Grammie and Pop Pop his Christmas pooch that lights up. I described this new light as a Scooby Doo light yesterday, but in all reality this pooch looks more like JJ (naturally, no?). So we have renamed our new friend, "Christmas JJ." Below is a picture of Christmas JJ, who will be added to the Christmas light display this year.
Mattie also received a special package today from Susan DeLaurentis. Susan is Mattie's school counselor. In the large envelope Mattie found some great Thanksgiving joke cards from all the first graders in Mrs. Knowles' class! They were darling, thank you Mrs. Knowles' class. In addition, Susan included a wonderful turkey hat for Mattie to wear to get him in the holiday mood. I personally love Mattie as a turkey, how about you?
I don't know about you, but when you look at Mattie in these pictures, he looks like the picture of health to me. He looks happy and spirited, and from an outsider's point of view, you probably wouldn't guess the kind of torture he is living through. The beauty of his mind and spirit fascinate and impress me.
I would like to share two e-mails I received today with you. The first one is from Prof. Honey Nashman at GW. Honey is one of my supervisors. Honey wrote, "We wanted to let you know that STUDENTS in all of the Spring classes in our Human Services program are dedicating their service learning hours to "the spirit of healing and love for Mattie." Students who don't even need hours have offered to volunteer. Thank you Honey and the wonderful Human Services' students at GW! Your thoughtfulness means a great deal to us.
The second e-mail comes from Debbie Pollak. As many of you already know, Debbie is Mattie's art teacher at SSSAS and helped him create the beautiful sun painting on saturday. Debbie wrote, "About the painting......... I went to the Piazza (her studio) to put a coat of gloss medium on it last night. It was totally dark, peaceful, and silent as I put the keys in the door. I could sense that I would be overwhelmed when I saw the painting again. When I put the lights on, I could hear Mattie's squeals of delight as he was painting. I slowly put the medium on my brush and very carefully stroked it on the canvas. The tears rolled down my cheeks. I could not stop them. I did not try. His painting is a magnificent tribute to the strength, light, and joy that fills your little boy. I feel so privileged to have been the witness to this magical event. I was so happy assisting him, it was like I was floating with the angels, watching over him. It was the gift that keeps on giving. How can I thank you and Peter for sharing Mattie's time with me? This most precious time. As I sat in the silence of the night I just stared at the painting and decided it needs to be framed. I am taking it to my framer. When I put the lights out, I swear I could still see light coming from the painting. I walked down the stairs and felt blessed, incredibly blessed." I wanted to include, with Debbie's permission, a part of her e-mail to me today, because I want you to understand the depths of her compassion and love for Mattie, and she is committed to being a part of his recovery process. Thank you Debbie, the way you describe this painting glowing is almost spiritual in a way.
On the electronic front, we want to thank Brian Boru, Grammie, Kim, Susan, Coach Dave and Karen for your wonderful e-mails and e-cards! Also we want to acknowlege Michelle Idle (a former RCC mom) for sending us an adaptive homemade shirt that Mattie will be able to use post-surgery. Michelle has opened up a whole new world for me, because prior to my e-mail exchanges I was wondering what on earth to dress Mattie in. So tonight the count down begins. We have one more full day before heading back to the hospital for major limb savaging surgery. So some extent I understand that these surgeries have to happen, it is Mattie's only chance at survival, but on the other hand, it is so painful to see such a beautiful little body and skin all cut up. It is a harsh reality, and one I never thought I would have to face at this point in my life.
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