Monday, August 3, 2009

Monday, August 3, 2009

Quote of the day: “What we do for ourselves dies with us. What we do for others and the world remains and is immortal." ~ Albert Pine

None of us seemed to be able to fall asleep last night. We were all up until around 2am. Aspects of Mattie's situation stress me out and I may physically look okay to those of you who see me, but the reality is I am the kind of person who internalizes stress and feelings. Ironic no, since I write about them every night! These feelings have to come out somewhere. However, last night, I had a terrible migraine, and Peter was worried about me, so despite being tired, he massaged my head. It was that simple act of kindness that made me feel better and literally helped me to shut my mind off and go to sleep. Peter tells me this morning, that I turned to him before he went to sleep in Mattie's room (Peter gave me another night without Mattie duty, so he spent the night monitoring Mattie while he was on an IV) and like a child I asked him to tuck me in. Needless to say that brought a chuckle to me today! I guess in times of sheer exhaustion, we all revert back to these childlike needs.

This morning Peter told me that Mattie was up multiple times last night complaining of stomach pain. Mattie actually calls it hip and rib pain. But based on where he is pointing it appears to be his stomach. None the less when he points to a bone, like a rib, I completely become unravelled. Certainly not visually to Mattie, but my heart sinks, with the internal question.... is this osteosarcoma? What a way to live one's life! Any case, Peter landed up giving Mattie Tylenol twice last night, and I have had to give him Tylenol every four hours today. Certainly this concerns me. In addition to the stomach pain, he basically ate little to nothing today. Dr. Synder, Mattie's oncologist, is back from her trip to Ireland, and I have bombarded her with e-mails for the past two days. Naturally several have been about Mattie's stomach. As you may recall Mattie was prescribed two different antibiotics for his ulcer. One antibiotic, a form of Biaxin, was SO HATEFUL, that even we refused to give it to him. Peter is my taste tester and when he confirmed that it tasted like chalked poison, that was enough for me. So I worked with Dr. Synder today to find an alternative. That problem has been resolved, one down and many others still to contend with!

Mattie and I played Legos for HOURS today. However, despite all this play, he was engaged and focused on building, which made the hours go by quickly. Mattie had a physical therapy appointment with Anna this afternoon, so we packed up and headed to the hospital. When we entered the PT waiting room, there were other children in it. Many of them were fascinated by Mattie and his wheelchair. They all started talking to their parents about "the child in the wheelchair." Needless to say, this wasn't what Mattie needed to hear today before therapy. So after signing Mattie in, we waited in the hallway rather than the waiting room, because this whole conversation was making Mattie uncomfortable. Sure I could have made this into a teachable moment, but there are just some times in life, where you neither have the energy or the desire to do so.

When Anna greeted us, she wanted Mattie to begin the session with walking, using a walker. Mattie wasn't eager to do this, and told Anna all about his ulcer instead. What the real issue was Mattie was intimidated by the posterior walker that was in the clinic. Anna and I worked on an arrangement that instead of dragging his in-home walker back and forth to the hospital, Mattie would just use the clinic walker for his therapy sessions. Well the clinic walker is DIFFERENT from the one he has at home. It is actually a better model, but regardless, Mattie was afraid of falling, and there was no way we would even take a step with it. So naturally tomorrow, I will be dragging the one from home into the clinic! Mattie continued to be difficult throughout the session. Anna took out a razor like scooter for Mattie to work with, in which he had to put one foot on the scooter, and the other foot had to push off the ground. There was NO way Mattie would even attempt this task. So I was desperate, because he basically was shutting down from doing any movement today. I told him if he tried it two to three times, that I would do anything he wanted me to do in the PT gym. Of course that was risky, but desperate times call for desperate measures. Even Anna got a chuckle out of this proposition. So Mattie said if he went on the scooter, I would have to do somersaults and jump around like a kangaroo. No problem! I agreed to it. He did this scootering, and I did not disappoint. The therapists were actually disappointed they did not take a picture of me! Mattie had me on floor scooters today as well, doing all sorts of obstacle courses and so forth. However, Mattie had a very difficult time embracing the parallel bars today, which Anna uses to help Mattie walk. He stood up with the help of the bars, but Mattie's stubbornness today reminded me of trying to move a donkey when the donkey has made up his mind that he isn't going anywhere. Mattie landed up in tears, and the session quickly concluded. We can only hope for a better day tomorrow.

After the session, Mattie and I headed to the pharmacy to pick up his new antibiotic prescription. While at the pharmacy several people attempted to talk to Mattie, there was one mother and daughter duo who were fawning all over him. He just looked at them and wasn't sure what to make out of the fact that they thought he was cute and they wanted to adopt him. When we got home, Mattie met up with two of our neighbors, and he ignored both of them as well while they were talking to him. I certainly understand that there will be moments that Mattie won't feel up to talking, but this shutting down and off bothers me. I am tired of serving as Mattie's social ambassador. Maybe this is my issue, and I should just let Mattie experience other people's reactions when he shuts down. At some point it will come to this, but right now he is too fragile for this kind of reality.

As the evening continued, Mattie started to complain of intense stomach pain. He always presents these major issues around dinner time. Needless to say, he made tonight's dinner very unpleasant, as he usually does. I pushed more medication into him this evening, with hopes that the pain would subside. But I can feel that I will have a fun night ahead of me with multiple complaints and disrupted sleep.

We want to thank Beth E. for a wonderful homecooked meal. Thank you Beth for the wonderful roasted chicken and broccoli. I also thank you for the brownies and for baking fresh bread for Mattie! We really appreciate your continued support!

I end tonight's posting with a message from my friend, Charlie as well as a link to a song she sent me. Charlie wrote, "I think it is terribly sad the way we treat the elderly and the ill. We close them away as if not seeing them would somehow protect the rest of us from becoming that way. It is the same reason that people either stare at or refuse to look at Mattie; it is an unwillingness to face our own mortality. Unfortunately when we do that we go through our lives as if they would be this way forever and fail to do the things that would make them meaningful because we act as if we have all the time in the world. In a moment, in a heartbeat, all can change and we should be able to say, I can look back and see the kindnesses and good things I've done outweigh the times I failed; truthfully, that's all that matters in the long run. Vicki, you have more than done your share of things for others and this is true for many of those you mention in the blog especially Ann and many of the staff at Georgetown. Even Brandon and Jocelyn, who have reason to be self centered are not; they stand as models of how to be the best person you can be and I thank them for their efforts and their examples. Sunday sounds like it was a good day overall; I am delighted to hear that Mattie's leg is straightening and that he is making gains on a number of fronts. The path to wellness is never smooth but I hope the bumps get smaller and the retreats shorter. Since it is Monday, I expect you will be at the hospital today and I hope all goes well in therapy for Mattie and that you get a moment to eat and to relax."

Charlie sent me the link to Trace Adkins' song, "All I ask for anymore." The lyrics of the song are very meaningful, because it discusses how our thoughts and behaviors evolve once we have children. In essence "there will be no me, myself, and I" anymore! I think this is SO true because as a parent you can't be unifocused anymore, it is a reality or wake up call that there are things out there bigger than ourselves. Caring for even a healthy child requires a great deal of energy, compassion, patience, and love. I will always first and foremost always be a parent and therefore have experienced this vision change, but having a child with cancer, has forced me to experience a profound change that almost makes living in my every day world seem surreal or uncomfortable. Any case, I thought parents reading this blog would love and relate to this song on some level!

http://www.youtube.com/watch?v=kkJA1rL_Ga8