Tuesday, February 12, 2013

Tuesday, February 12, 2013 -- Mattie died 179 weeks ago today.

Tonight's picture was taken in February of 2009. If I had to give a title to this photo, it would be called "Friends!" On this particular occasion Mattie was stuck in his room on contact isolation. Several times Mattie's blood work revealed an infection which was deemed contagious. When this would happen, Mattie was basically isolated to his room to protect others from catching this infection. But being isolated 24 hours a day was torture beyond belief. That meant in a room the size of a large closet, Mattie had to play and live his existence. On almost every occasion, after a lot of screaming on my part and getting to know the infectious disease department, Mattie's cultures were usually found to be false positives. Meaning that he did not have an actual infection, and yet until they figured this out, Mattie was isolated for 48 hours. That may not seem like such a problem but we lived with so much stress already that isolation just magnified issues by 10! As you can see here, Linda (Mattie's Childlife Specialist) and Anna (Mattie's physical therapist) brought activities into Mattie's room to keep him moving and stimulated. Which also gave me a break, since besides mom and advocate, I was also full time playmate. You can also see Mattie's big buddy, Brandon, in the doorway. Brandon was recovering from an emergency appendectomy and though he couldn't come in the room, he was right there as usual supporting Mattie and trying to provide company! As Valentine's Day is quickly approaching, it seems very fitting to highlight the beauty of Mattie's friends!



Quote of the day: Children have neither past nor future; they enjoy the present, which very few of us do. ~ Jean de la Bruyere


Tonight's quote is quite true. Children have the beauty of living in the present time and enjoying it. Every moment seems magical and to last forever. I have to say that one doesn't need to be a child to live life in this manner. When Mattie got diagnosed with cancer, I lost the art of living for the future. I couldn't look ahead, because each day was so demanding, stressful, and required every ounce of energy to keep it together to do the right thing for Mattie. In addition, Mattie's prognosis was so uncertain, therefore looking ahead was rather grim. Therefore, like so many others who live with a trauma in their lives, one's perspective becomes very present oriented, following the one day at a time philosophy. I remember when Mattie was in treatment for cancer, every thing else fell by the wayside. Our sole focus was spending time with other and getting him better. In many ways, this was very freeing from the daily and ludicrous expectations of life. I certainly could have done without Mattie getting cancer and dying, because I saw how his battle began to transform me, and to some extent this transformation is still occurring. The Vicki some may have known no longer exists. She too died on September 8, 2009. Mattie's cancer lives on inside of me, and though you may not see the scars, they exist and on certain occasions given the conversation, the situation, or circumstances, you will hear the scars come out loud and clear. The scars are visible in my perspective, thoughts, and feelings. 

This afternoon, both Peter and I took Patches to the vet. Patches never knew what hit her. Typically getting her into her cat box is virtually impossible. However, now that she can't hear, she wasn't aware of a thing I was doing. The poor thing was resting comfortably on Mattie's bed when I scooped her up and put her in her cat box. I brought a fuzzy blanket for her, typically the vet doesn't allow linens from home in the boarding area. But Patches needs this extra level of comfort. I am glad they did not fight us on this. May our Nurse Patches remain strong this week and hang on until Peter's return on Sunday.

We are all packed and ready for our trip to California. I have had a hard day filled with all sorts of nerve pain. At times I try to use distraction not to concentrate on the pain, but by 5pm today, I was NOT in good shape. I am desperately hoping that some time away from my computer will help my recovery. Goodnight from DC, tomorrow's posting will be written to you from Los Angeles.