For most people, Tuesdays are the second day in any given work week, or at least that is how it used to be for us...... Now, in our "new" life, our Tuesdays take on a new definition. Tuesdays are shower and dressing changing days. This is a process that seems to take us a good two hours to complete. I now view dressing changes as another task to get done, and I am no longer freaked out about the notion that I am caring for a tube that is literally coming out of Mattie's chest, and leads directly into his heart (literally). Despite my comfort level with the process, Mattie is still very scared of the pain from removing this very sticky bandage provides, and there is a lot of crying that is associated with this dressing change. Needless to say after this two hour process, I always feel like I need to lie down from the sheer emotional drain of watching Mattie so scared and in pain.
At around noon time, Mattie's buddy, Alex and his mom (Julie) came over for a visit. Mattie's energy came back in full force yesterday, so having Alex over today, helped to get Mattie's "jumpies" out and to expend some energy in a positive way. Alex was very thoughtful and sensitive to Mattie and the boys did all sorts of things together from building with Knex, acting as knights, running after JJ (our resident Jack Russell Terrier), and jumping on our bed. You can see some of these pictures below. It is times like this, when I see Mattie full of life and energy, that we think nothing is wrong with him. Thank you Julie for lunch, the cookies, all the gifts, and the good company!This afternoon I was playing with Mattie, and he said to me that he wanted to be "reborn" from my tummy. I made a joke of it at first, and asked him how I could possibly carry in my tummy a 45 pound baby?! We laughed, but then he said if he was "reborn" then he wouldn't have these "bone bugs" in his arms and legs. I understood what he was saying, and only if it were that easy to remove the pain and the "bone bugs," I would go through labor and delivery all over again (which those of you who know about my labor and delivery experience, understand that this isn't an experience that I would be signing up for anytime soon). I find along the way that Mattie comes up with some profound statements and questions. Some which are hard to answer at times. I think parents hope that they can answer their childrens' questions, and thereby enable them to make sense out of the things happening around them so that they can develop a sense of safety and trust in the world and in others. This however, is not an easy thing to be able to do as a parent when your child has cancer.
It is wonderful to see Mattie energized and happy. However, I guess the beauty of being six is that you can bounce in and out of painful times. Whereas, Peter and I are basically in it each moment of the day, and while Mattie's body repairs itself and re-energizes after two weeks post chemo (the beauty of a young body!), Peter and I get more tired, and I felt like I was bearly functioning today. So when the going gets tough, sometimes the tough have to take to bed, which is where I went this afternoon.
We got two very nice phone calls today. One was from Mattie's head of school, Joan Holden. Joan checks in with us periodically and reminds and reassures us that SSSAS stands behind us. It is lovely how a community of which we have only been a part of for a year, has embraced us in this difficult time. The second call today, came from Peter's boss, Justin. Peter has been on leave from work for almost a month now. Most companies would be putting pressure on their employees by now, but I can clearly see Voxiva is a different and special work environment. Justin basically told Peter that Voxiva stands behind us, and they understand that our priority now is and must be Mattie. Justin told Peter that if he needs more time off, then take it. That his job isn't and won't be in jeopardy. I am simply touched by Voxiva, by Justin's sensitivity and compassion, and for allowing us to be a family unit for as long as possible. For this, I am forever grateful.
I received an e-mail today from Ann and Alison. Ann let me know about some fundraising ideas Team Mattie has generated. The first one, I believe is scheduled for September 20, and it is a Car Washing Fundraiser (being coordinated by Johnny P. - the pitcher on the Timeout baseball team that Peter plays on). Thank you Johnny and Team Mattie for this wonderful idea. The second idea was generated by Kristin, a friend and mom at RCC. She is creating a drive in movie night for Mattie and his friends in the fall. This is such a lovely idea, since going to a public movie theatre is not something Mattie can do while on chemotherapy. Thank you Kristin for this special fundraising idea! I also want to acknowledge Alison for helping me think through the Osteosarcoma walk idea and her willingness to meet this week to further work out what I am trying to accomplish before proceeding forward with Carrie.
I leave you with a picture of sheer joy tonight, as Mattie eats his requested pasta. Sometimes a picture does say 1000 words! Thank you for all your love, care, and support and for sharing this good day with us.
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