Friday, August 6, 2010

Friday, August 6, 2010

Tonight's picture was taken in August of 2009, right after we found out Mattie's case was terminal. Linda, Mattie's childlife specialist, arranged for a special event at the Lego Store. Mattie and his buddy, Abigail, got to create something in the store after hours. There were NO other customers in the store, and they had the opportunity to work with two Lego masters. It was a night to remember. I still remember Abigail calling us on her ride home with her mom, to let us know that was the best night of her life and that she had a lot of fun! Mattie was given the choice of picking out any Lego set in the store that night to build, however, since he practically had each set, he instead decided to build his own creation! The creation was a NYC yellow taxi cab! This taxi sits in our living room, and one of these days I will get a case to put it in and protect it. It was one of the last Lego creations Mattie had the energy to assemble. What I love about this picture, was that Mattie was energized and motivated to self propel himself in his wheelchair around the store, so that he could collect all the Lego bricks he deemed necessary.

As you can see from this picture, the taxi turned out very well. Mattie was thrilled and beaming, as he stood next to Abigail. Looking at this picture it is hard to understand that Mattie was terminal. To me, he looked so much better than he had on chemotherapy, which is why I most likely couldn't accept that he was dying until two or three days before he actually did. Also as you can see from this picture, the Lego store is bright yellow. A yellow I tried to describe in last night's blog. It is almost like walking into the sunshine when you enter the store.


Poem of the day: The Mall by Charlie Brown


Yesterday as I walked past the store
I so wanted to see you at the door,
And how you loved to go inside
To buy and build your toys with pride.
But as we walked through the mall
I didn't see you there at all.
Not in those places you used to be
And how that really saddens me.
Now I watch other children run
And I see them having fun.
I hope wherever you are today
You have the chance to run and play.

On August 6, 2008, we learned that Mattie's cancer had metastatized to other bones in his body. So we weren't only fighting ONE very large bone tumor in his right arm, but in fact FOUR tumors. Between yesterday and today, we have been hit with several anniversarys, days which I would like to say weren't a part of our life or world. As I reflect on August, I am not in love with it anymore than I am with July. As we approach, August 8, which will mark 11 months sinces Mattie's death, I sometimes wonder how we have managed to make it through this year. In many ways the days and months have flown by, and in many ways, emotionally the feelings of battling cancer and helping Mattie die are still so raw.

I woke up this morning feeling even worse than I did yesterday. Ann called me this morning, and when she heard how I sounded, she did not like what she heard. In fact, I am in such a low place, I wasn't really paying attention to some of my physical symptoms. So she encouraged me to go see the doctor today before taking my parents to the airport. So I literally put myself together and within 15 minutes got in the car to see the doctor. When I got to the office, they took my temperature, and I indeed had a fever. Again, something else that I was clueless about, because I wasn't listening to how I was truly feeling. By the time the nurse practitioner heard all of my concerns, her response to me was "you are a mess." I couldn't agree more.

Driving my parents to the airport was uneventful, we hit no traffic and had a good conversation. The irony is right before we hit the airport, I told my mom that I wanted her to look for two things for me while she was in Russia. One was a nesting doll and another was a handmade embroidered shirt. Why on earth did these things come into my head? I have no idea, but it was as if I reverted back to being a little girl again, and was asking for some special prizes. My mom took it all in, and after firing off these two requests, she asked me what else I wanted. It was just a funny conversation of sorts.

As I was driving home from the airport, I was on the George Washington Parkway, and I could see someone walking along the side of the road. This person caught my eye. So I turned to look at him. He appeared to be homeless, and was carrying a huge cross (almost resembling the type of cross Jesus carried and was nailed to) under his arm. It was an image today that has remained with me. For some reason it was very symbolic to me. Symbolic because we all carry our own crosses in some way, his was literal, some of ours may be figurative. None the less, he reminded me that we do not live in a perfect world. We live in a world filled with pain, heartache, tragedies, and disappointments. The only salvation as I see it however, is how we treat each other and how we help each other during these tremendously hard times. Truly loving someone is not only helping them and being there for them in the good times, because those times are easy, but it is times of crisis that speak volumes. It is my hope that this man carrying the cross today has people in his life who support him, like Peter and I do.

For the remainder of the day, I spent in bed. But I wasn't alone. As you can see from the picture I took, Nurse Patches was right by my side. She seems to know when I need help and support. Clearly in the past, I could manage being sick, or as most moms know, you work through being sick, because you have to. However, after Mattie's illness, I do not handle being sick as well. In fact, my mind always goes to the worst possible scenario, and I think I am profoundly sick. I guess because I have seen profound illness for two years. Somehow having someone sitting next to me in these challenging moments, is very helpful. In the midst of sitting in bed, I was exchanging e-mails back and forth with my lifetime friend, Karen. Karen was telling me an hysterical dream which entailed flying to Los Angeles with me and then when we got there my parents seemed to have giant rabbits living in their house. I am not doing the story justice, but it got me laughing and we had fun analyzing it!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As soon as I read about the Lego store in the blog, I had a flash to when you wrote about how they opened the store after hours so that Mattie could go and pick out and build his own model. I remember you writing about how he went through the store trying to find just the right kit and finally settling on making his own and building a taxicab based on a model he saw displayed in the store. He really had a wonderful eye for building and creating. I am sure it was difficult to walk those places you went in an attempt to find things to keep him occupied through his treatment and my heart aches for you. We are here on the outskirts of the Smokey Mountains and we're doing some hiking as well as sightseeing in the local area. Yesterday my husband was sharing that we really hadn't seen any wildlife in spite of all the signs to watch out for bears and all the guidebook notes on the foxes, deer, racoons, etc that live in the woods. We'd just come back from dinner to our hotel and there climbing on the trash bins was a big black bear. He was unable to open the bin, so he took off across the lawn, climbed the fence and lumbered back into the woods. It was just a couple of minutes but we both just stood and stared. All I could think was I wished Mattie could have seen this and what he would have incorporated into one of his art projects as a result. Today as we head to Cade's Cove in the mountains, I will be carrying you along with me. I hold you gently in my thoughts."