Quote of the day: "Tears at times have the weight of speech." ~ Ovid
Before I tell you about our day, I want to thank all of you who wrote to us about Cody and for acknowledging what a difficult and painful day wednesday was for Cody's family and the community who knew him. The death of a child is a profound loss and one that should never be forgotten! I am finding it particularly fascinating how the hospital staff are checking in with me to make sure we are okay after yesterday. I think Peter's reaction gave them pause. I am not sure why, because frankly if Peter did not react the way he did, I would say he had a serious problem. But expressing how you are feeling in a very real and raw way as he did, in my book is healthy. It may not be pretty or comfortable to see, but it is the only way to process something that touches your life so personally and closely. Our case manager, Catherine, saw me in clinic today and told me that Cody's service was deeply moving and very painful, but the one image that remains as a snapshot in her mind was Peter's face walking down the church aisle while leaving. I knew exactly what she meant. There are moments that you can look at someone's face, and in that instance, it captures the mood and tone of the day. I would imagine that NOT many parents of children with cancer attend the funeral of another child who just died. It is just too raw. So in a way it was a learning experience for everyone involved.
Peter e-mailed me today and literally said, "You know in trying to process all this last night and today, I have yet to think of anyone else besides Cody and his family. I think I can do this because we have all the members of Team Mattie and the community around us to support us, and it is through and because of this support that we can in return, be supportive of others in more need than ourselves. This is a lesson that I learned from this."
I had the opportunity to see Dr. Abu-Ghosh today. Dr. Abu-Ghosh is Brandon's doctor and was Cody's doctor as well. If some of you went onto Cody's website, you may have seen one of the videos with a doctor smiling and holding Cody when he was much smaller, maybe when he was two years old. To me that is just a priceless picture, and I told Dr. Abu-Ghosh that I found this picture haunting, but more importantly the picture captured her love for Cody. That came through clearly. She started to tear up, and I wasn't far behind. So I told her to move on, before we both were going to be a mess within minutes. That picture moved me and I was touched to see the impact of Cody's life on Dr. Abu-Ghosh. It gives you faith in the medical profession.
Mattie had a good day today. His Absolute Neutrophil Count is 900, a severe drop from 5000 on monday. It will continue to drop over the weekend, and we will just have to keep a close eye on him to see if he develops a fever during this time. In my perspective Mattie was the life of the clinic today. He had everyone hopping. Mattie got to work with Jessie and Gretchen (another Art Therapist who works with Tracy's Kids), and even Elizabeth (a social work intern). Jenny is out of town for a week, and we look forward to seeing her next week! We missed her. Mattie was creating up a storm. He made a robot, which is still in clinic, and even did a painting of some candy canes. Jessie, Gretchen, and Elizabeth worked VERY hard today!
Mattie's big decision for the day was which art boxes he was going to keep. With 50 hospital admissions, Mattie has accumulated a lot of artistic creations. But the hospital couldn't store them any longer for us. So Ann, bless her soul, came to the hospital to pick up a few creations that Mattie just couldn't part with. It took Mattie quite some time to sort through rows and rows of art. He wanted to keep all of it, and I told him that wasn't possible or fair to Ann. So he settled on five rather large creations. When Ann came today, she loaded all of these things in her car, and then photographed the rest of the creations that we would be saying good-bye to. It is ironic, each piece of art work seems to signify or illustrate a moment or emotion in time within the hospital. It is amazing to see all his finished products in one space, and if I were thinking clearly, I would have photographed them all together before we started sorting. Just to indicate the sheer volume! In addition to schlepping boxes, Ann came down to take a high resolution photo of Mattie for his Walk t-shirt. She took some great shots. Here is one of my favorites, along with a photo Ann took of Mattie with Dr. Toretsky (while Mattie is building a robot).
When Ann visited, she brought with her a soft pretzel. Mattie was watching the show "how it is made" on TV last night with Peter. They were featuring on the episode how pretzels are made. So guess who wanted a soft pretzel at 11pm? You guessed it! Mattie wanted us to go out at that hour to search for one, but I told him it was too late, but that I would ask his buddy Ann to help us on this quest. Ann never disappoints, Mattie got his pretzel today, and ate it.
I want to thank Tamra for a beautiful lunch that she brought to the clinic. Not only was it delicious, but so beautifully presented. Tamra made me homemade butternut squash soup that was so tasty, and she served it to me with an elegant silver tablespoon. That spoon caught my attention, because it made me feel special, and in a way transported me out of the hospital environment for a minute or so. Thank you for the fruit, salad, wonderful cookies (which we shared with another child, who needed to be bribed to go have his check up!), and the dinosaur chicken tenders. Tamra also is helping Mattie get into the St. Patrick's day spirit. I love the socks and shamrock sunglasses. He will be heading into the clinic next week in style. We could use the luck of the Irish next week as we head into CT and bone scans next thursday! Tamra also came back later in the afternoon to visit with me and brought me hot tea. I am truly touched by her generosity, caring, and compassion. How lucky we are to have such amazing people in our lives.
Mattie did very well with MTP-PE today. No reactions what so ever. But after almost five hours in the clinic, he was ready to go. We head back to the clinic again on monday, unless something else arises between now and then.
We want to thank the Magnuson's (Zachary's family) for a wonderful dinner tonight and amazing desserts. They brought a smile to my face when I came in the door tonight. Thank you for your constant support. I went out to dinner with a colleague of mine who is town for the two day board meeting. It was nice to escape this evening and to eat by the water. Our family also wants to acknowledge the Sonoda family for their generous donation of a Wii Fit to the childlife room. I can't wait to introduce this to Mattie. I hope it inspires him to move his body. Thank you Lana for making this possible, and for your families great support, care, and generosity!
When I arrived back home tonight, I found Peter and Mattie had been very busy designing Mattie's lego town. We have some new additions such as a car wash, a movie theatre, and a town hall. Check out the proud designer! Apparently Mattie and Peter have big plans while I am away tomorrow. If I come home and find out my entire house is made out of legos, I won't be surprised!
It is 11:30pm, Mattie is still up and just opened a package from Eva K. While I am writing the blog, Mattie and Peter walked into the room, and stuck something on the wall. When I looked up to see what they were doing, I notice large ROACHES on the wall. So we now have movable toy roaches to add to our house of fun. The perfect gift for Mattie, along with an insect book, and other creepy crawly things. I wish I could say I am becoming desensitized to roaches, but it isn't happening yet.I end tonight's blog with a message I received from my friend, Charlie. Charlie wrote, "What a contrast Wednesday's blog was, between Cody's funeral and Mattie's energy. I know that even though you could not go to Cody's funeral you were there in spirit and in your thoughts as you took care of your errands. I am glad Whitney was there to work and play with Mattie and that that they had a good day. The timing for this was perfect as you definitely needed the break. It speaks volumes for Mattie's increasing independence that he was able to spend five hours without either you or Pete right there with him. It took real strength of will for Pete to go to the funeral; that had to be so difficult but what a gift to Cody's family. I am sure the "what ifs" plagued you both yesterday. There are no crystal balls but you and Pete are doing everything you can and with the help of family and friends and the grace of God, at the end of this road will be the prize of good health."
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