My friend Charlie has been writing me a series of e-mails to help support us through the whole Sloan Kettering experience. Today Charlie wrote, "This quote (below) is the statement that separates the good doctors from the great ones. Unfortunately, some physicians think that only the technical expertise counts and those who are patients (and that is everyone at some point) know differently. Usually nurses see this a lot more clearly than doctors do; they are trained in patient "care" not just patient "treatment." If Mattie could voice all this he would thank you for finding a place where more often than not, the staff remembers that the body and the soul are one."
Quote of the day:
"The greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated." ~Plato
We were all exhausted on friday night. In fact, I went to tuck Mattie into bed, read him some bedtime stories, and then literally fell asleep right next to him for an hour. I went to look for Peter when I awoke and he was sleeping on the couch. So I woke him up, and he went to stay with Mattie for the rest of the night. We can't leave Mattie alone at night because he needs assistance going to the bathroom and since he is connected to an IV, I learned my lesson never to leave him unattended when he has an IV attached to his central line. Mattie slept to around 7:30am, and when he woke up he was energetic. Though energetic, he did not want to leave our home the whole day. Sometimes I can break this routine but I did not have the energy to fight this battle today.
Mattie and Peter finished his Empire States building erector set that we purchased for him in NYC. Mattie was very proud of his accomplishment and this structure has now been added to his train village in the middle of our living room. I took a picture of Mattie with his finished product and Mattie even put a green alien creature on the building, reminiscent of King Kong climbing up the Empire State building.
Mattie spent the day playing and he even had a visit from JJ, our resident Jack Russell Terrier. I think the two of them missed each other while Mattie was in NY. We want to thank JP (JJ's owner) for the wonderful pizza and pasta with shrimp that he brought over for Mattie today. Mattie LOVED the shrimp and pasta, and ate four shrimp. Of course, Mattie reminded me that when he eats shrimp, he turns into super shrimp boy. Which means he chases me and uses a funny and scary face while doing this! Mattie ate very well today. I also want to thank Carrie for checking in with me several times. She was our Team Mattie support person today.Mattie is very concerned about Patches, our calico cat. Mattie wants to know when Patches can come home from the vet. I explained to him that we can't take care of Patches now, and that the vet is taking good care of her. But then he rightfully pointed out that we have been home for the past three weeks and we could have had her home. Of course, with Mattie's treatment, I never know when he will get sick, so I just can't juggle Patches during all of this especially since she needs to be medicated twice a day. I tried to explain this to Mattie in a simple way, but I also had to break it to him that he is going back to the hospital on monday. He listened to me but he did not have much of a reaction to going back. My guess is I will hear a delayed reaction to this news soon, because who on earth wouldn't react to this news after being away from the hospital for three weeks?
This afternoon, Mattie opened up three gifts he received in the mail. The first gift was from Lana (one of his RCC preschool teachers). Lana also loves sharing the music from the 20's and 30's with her children. You may recall that I wrote about Bing Crosby's "Swinging on a star," during one of my blog entries, and Lana responded to that blog by letting me know that this song was special for her and her children too. Lana captured some of this special music on a CD she sent Mattie. The CD is by Maria Muldaur and it is entitled, "On the Sunny Side." Thank you Lana for this wonderful gift, we listened to the entire CD today, and we all loved it! Mattie was singing along to "Swinging on a star!" We also want to thank Melissa de Freitas and her family for the wonderful gifts she sent Mattie. Melissa is a friend of my friend Susan. Melissa's sons created a fantastic flip book entitled, "Mattie saves the day and defeats the evil bone bugs!" A flip book is a book with a series of pictures that vary gradually from one page to the next, so that when the pages are turned rapidly, the pictures appear to animate by simulating motion or some other change. It is a very special gift. The main character in the book is Super Mattie, who saves the day by rescuing the town from the evil bone bugs. Very creative. We also want to thank Melissa for the airplane lego and the homemade scrapbook. We look forward to filling this book in! Though we do not know Melissa personally, we want to thank her for reading our blog and for supporting us and sending Mattie such thoughtful gifts. We also want to thank Grammie and PopPop for the wonderful microscope you sent Mattie. Mattie examined a lot of things under the microscope today such as water, hair, and even his toe. The microscope kept Mattie busy for a while.
We had a lovely phone call today from our former neighbor, Malcolm. Malcolm moved to another part of DC, but he follows Mattie's blog each and every day, and he thanked Peter and I for keeping the blog up to date and for allowing others into our lives during our family's crisis. We miss Malcolm and his support, but I do see that through Mattie's illness it has brought people closer together.
We had a lovely dinner tonight thanks to Honey. Mattie loved the spinach in the lasagna and he also loved the shark's tooth you brought back for him from Hawaii. Thank you for thinking of us on your recent trip. I am enjoying the lavendar tea from Hawaii. There is nothing more soothing than the fragrance of lavendar. Thank you Honey!
I end tonight with an incredible e-mail I received from Ashley. Ashley is a friend and RCC mom. Many of you are familiar with Ashley since she is the pastor who hosted the prayer service for Mattie in the fall. Thank you Ashley for this very meaningful e-mail. You have given me a lot to think about. Ashley wrote, "I've been reflecting on a blog post from a week or two ago. You wrote about a SSSAS friend coming by and praying with you at the end of the visit. You reflected the prayer help to bridge a gap between your own spiritual space right now, especially with prayer. So my mind went into hyper-drive and I started to ponder, yet again, the dimensions of faith that I am witnessing as we visit you and as we read the blog. This is what I've come up with:1) Mary moment: Mary, who pondered things in her heart and asked the question, “How can this be?” And didn’t really get much of an answer, and yet seemed OK with that. Now Mary, Jesus' mom, had just birthed her only child when she asked this question (and became pregnant) so Mary's life was full of life. You are asking this question with Mattie's life being in a deep level of jeopardy. But....I wonder....if Mary asked this question as she watched her only son face death. "How can this be? How could my only son face such a death?" Was Mary OK with this question as Jesus faced death and died? We don't know. But it has to be a heart wrenching question for her to ask. Mary's question, a mom with an only son, is a question that's come up in your blog.
2) Hospitality: You and Peter have let us in, welcomed all into this story. Your blog, your home, your hospital room, your WTF moments, your emotional roller coaster, your joyful moments like with the recent CT scan....we have been let, welcomed, into your life at the most challenging, heartbreaking of times. Hospitality is one of the most essential acts of living in God's way---the Hebrew scriptures and NT stories are full of followers welcoming those known and unknown into their homes, synagogues, lives to build a belief system and to welcome everyone into the circle of God's grace. This circle has no beginning and no ending. This type of hospitality is for the sake of survival, healing and the building up of community. You have let us into your life when many others have shut the door to deal with an illness in a more private way. But your way has been public and allowed a community to be built and sustained even when we have no answers to "how can this be?" The fact there is no answer to why Mattie is sick hasn't stopped you from sharing your life with us.
3) Agency and Power: As in....moral agency. Throughout this process, you have kept Mattie at the center of it all, advocating for him and his well being non-stop. Mattie has been his own agent, acting on his own behalf, as he expresses he needs, wants and concerns. When needed, you have been Mattie's voice in order witness and advocate to what it means to be a child living with cancer. You, Peter, and Mattie are all powerful and have been the change you wish to see when it comes to how a hospital cares for the health and holistic well being of a child.
4) Community: This is obvious but central. How do parents care for sick kids without help? Support? Love? Shoulders to puke and cry on? The prayer service really made this concept "flesh" for me. Forty-plus people gathered at RCC to reflect and "shore ourselves up" for the healing and supportive work that continues on. As scripture tells us, we've come this far not on our own, but with the companionship of others. We are each others keepers and no one should walk a road like this alone. The community that has been created around Mattie is the Emmanuel (the word made flesh), the incarnation, the manifestation of the Christmas Story that the work of faith is healing the sick (among other things......clothing the naked, feeding the hungry, giving the thirsty drink. This is Matthew 25).
There are more elements to your story, Vicki, but these are ones that I keep coming back to. The nurses ask you, in moments of crisis, if you want to go pray in the chapel.....your holy sanctuary is right in front of you---Mattie's room where all these elements of faith are taking place. Your sanctuary may not be the calm, quiet place that many people think of when they hear the word "sanctuary." But Georgetown is where life and faith intersect. This is where the rubber meets the road--the place where the reality of life meets the reality of faith. You may not be able to pray right now, the words may not come easily, but your actions are right there for us to see. There is no greater testimony to the prayerful, sustainable, faithful life. This may not be how you envisioned life to unfold, but it's your life, and I can't imagine God wanting to be any other place. I hope, Vicki, as this journey continues, you are able to glimpse the Holy when you can. When you can't, I hope we are able to do a bit of the revealing ourselves."
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