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
August 3, 2009
August 2, 2009
Sunday, August 2, 2009
Sunday, August 2, 2009
Quote of the day: "Love is a condition in which the happiness of another person is essential to your own." ~ Robert Heinlein (Science Fiction writer)
Peter and I had to wake Mattie up this morning. He was so exhausted from the past couple of days, he couldn't get out of bed. When Mattie stood up and got out of bed, Peter and I were stunned. Mattie literally put his right foot flat on the ground and his knee looked a lot straighter. We are insisting that Mattie wear his leg brace to bed to stretch out his leg (which appears to be frozen at a 32 degree angle), and apparently it seems to be making a difference. Technically Mattie should wear this brace for a good chunk of the day as well, but Mattie has been absolutely opposed to this. Now you are probably saying to yourself, I don't get it. He is a child and you are his mom, I should be able to just get him to wear the brace. However, I can assure you, that would greatly underestimate Mattie's personality, stubbornness, and perseverance. When he has his mind made up, forget it. Now it is a matter of proving to him that it will work, and slowly he will rationalize for himself that in order to walk, he will need a straight leg, and to help get a straight leg, he has to wear his brace. Today was the first step into that pathway of logical reasoning. It was a memorable moment, and if I had my camera upstairs, I would have snapped a picture. It was that noteworthy! I can't wait to tell Anna on Monday.
Mattie was very excited that today was going to be a "boys" day. Mattie and Peter spent the whole day together, without me in the picture. Just like they would have done in the past, prior to Mattie getting sick, Peter and Mattie ran weekend chores. They went to Target and grocery shopping to name a few stops. Since I was cooking tonight, I sent Peter out to buy some things that I knew they both would want to eat if I had the energy to cook in the evening. They had a fun day of playing, building, goofing around, and even eating. I am so happy they can have these times together and even though I know Peter is tired, I have come to accept these breaks and not feel guilty for leaving.
This afternoon, I met up with Ann and visited with her parents. As many of you know, Ann's dad is temporarily in a rehabilitation facility trying to get his strength back from a recent hospital admission. Ann brought her mom over from a different assisted care facility to visit with her dad, and I am sure to some extent being separated from each other for this period of time is difficult since they have come to rely on each other for over 50 years. It is funny, I just met Mary and Sully (Ann's parents) this year, yet to some extent it seems like we have known each other for a much longer period of time. Perhaps it is because we are bound by cancer, since they lost their son to cancer two years ago, or the fact that we all have great respect for Ann. I am not sure, but visiting them on the weekend, makes me happy. It makes me happy for various reasons. First of which is I know the loneliness they experience and deeply feel as they live in an institutional setting. Having lived in a PICU for 11 months on and off, I feel this has opened my eyes to the feelings of isolation experienced by older adults who spend the majority of their days in hospitals, assisted living, and nursing facilities. The issues of older adults is not something new to me, this is my area of research and clinical interest, however, no amount of reading on the subject matter, or listening and counseling clients, could ever replace the insights I personally lived through this year. If I can spend a few hours with Mary and Sully, talking with them, hearing stories about old times, stimulate them cognitively, and make them feel connected to the outside world, then I consider this time well spent. I find it absolutely heart breaking that in our Country the older adult population for the most part is isolated and in many cases forgotten by the rest of society, as if we have to put this population into facilities, because seeing them, hearing about their pains and ailments, and interacting with them is too horrific for us. I can't help but say to myself, but there but for the grace of God go I. So I try to imagine how I would wish to be treated when I, God willing, get into my 80s and 90s.
I learned to be the kind of caregiver that I am from watching my mom care intensely for three years for my grandmother, who was a stroke survivor. I witnessed the profound effect that caregiving can have on a loved one, so much so that when I entered graduate school, I knew that caregiving was going to be my area of clinical specialty. My mom's experience with caregiving has given her great insights, which you can see she expresses well when she writes about the toll that Mattie's care is having on me. But for the first time today, and I have no idea why, I had a revelation. I have been visiting and supporting Mary and Sully, and yet not really acknowledging the amazing work Ann is doing for them each and every day. Caregiving means much more than an occasional visit, bringing a meal, providing flowers and clean laundry. Caregiving is a selfless job, and most likely if you talk with caregivers, they won't even acknowledge their intense roles. It is just a part of who they are, which is providing constant support, serving as a liaison with the medical community, being a full time cook, managing medications, finances, and living arrangements, but most profoundly it means seeing your loved one disengage from society, become more disabled, and in essence losing a piece of the person you know and love on a daily basis. Sometimes I wonder what is harder to deal with, losing an older adult immediately from a massive stroke or heart attack for example, or seeing them slowly and painfully suffer from the devastation of an illness or disease? Neither is easy, but having lived through watching someone I love suffer, it is a very hard picture to remove from your mind's eye. It stays with you forever, and at times it erases the happy times and memories, because it leaves you with a level of sadness that is indescribable. So I guess tonight I pause and thank God for all the family caregivers out there, who do their jobs quietly, diligently, and lovingly. I have no doubt God holds a special place in his heart for us. For without family caregivers our older adult population with illnesses would be at the mercy of a health care system and nursing facilities who neither have the time, patience, compassion, or commitment to stop and listen to the concerns and desires of their patients much less the family members caring for them.
While I was visiting Ann's parents, Peter kept sending me text messages. But this was very sweet because he was relaying messages to me from Mattie. Apparently Mattie missed me today, not in a way that I had to come home, but in a way that showed he appreciated me. It was very touching. When I arrived home, I got a big greeting (absence does make the heart grow fonder), and then I started putting dinner together. Another first, after I cooked dinner, Mattie wanted to join us outside on the deck to eat. I was excited at the notion that he was actually going to eat, and he led us in grace, but then after eating a few bits, he began to have his usual intense stomach pain. Despite the pain, he stayed with us at the table, and talked to us about his day. So in my assessment, though not a good eating meal, it was a moment for all of us to be together.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Vicki, I was so delighted to see that you got out on Saturday with Peter, even if most of the time was taken up running errands. I think it is good for Mattie to have some time away from the two of you when you can manage it and Mattie's emotional state will allow it. Trolls and "bug baking" must have made for an interesting morning. It is great that you all got to go out to the movie at the museum and that everyone, including Mattie had a good time. I hope to see more of those notes in the blog in the future. I understand what you are saying about trying to absorb everything around you, trying to gain as much as you can from every moment. It is an odd thing about us humans, we go through life quite unaware of much of what is going on around us until things are not going well and then we become very mindful of each moment. I am as always sorry that you and your family are going through this but grateful for the reminder to appreciate every one I care about and all the "gifts" I've been given. I hope this coming week brings some good advances for Mattie both physically and socially."
Quote of the day: "Love is a condition in which the happiness of another person is essential to your own." ~ Robert Heinlein (Science Fiction writer)
Peter and I had to wake Mattie up this morning. He was so exhausted from the past couple of days, he couldn't get out of bed. When Mattie stood up and got out of bed, Peter and I were stunned. Mattie literally put his right foot flat on the ground and his knee looked a lot straighter. We are insisting that Mattie wear his leg brace to bed to stretch out his leg (which appears to be frozen at a 32 degree angle), and apparently it seems to be making a difference. Technically Mattie should wear this brace for a good chunk of the day as well, but Mattie has been absolutely opposed to this. Now you are probably saying to yourself, I don't get it. He is a child and you are his mom, I should be able to just get him to wear the brace. However, I can assure you, that would greatly underestimate Mattie's personality, stubbornness, and perseverance. When he has his mind made up, forget it. Now it is a matter of proving to him that it will work, and slowly he will rationalize for himself that in order to walk, he will need a straight leg, and to help get a straight leg, he has to wear his brace. Today was the first step into that pathway of logical reasoning. It was a memorable moment, and if I had my camera upstairs, I would have snapped a picture. It was that noteworthy! I can't wait to tell Anna on Monday.
Mattie was very excited that today was going to be a "boys" day. Mattie and Peter spent the whole day together, without me in the picture. Just like they would have done in the past, prior to Mattie getting sick, Peter and Mattie ran weekend chores. They went to Target and grocery shopping to name a few stops. Since I was cooking tonight, I sent Peter out to buy some things that I knew they both would want to eat if I had the energy to cook in the evening. They had a fun day of playing, building, goofing around, and even eating. I am so happy they can have these times together and even though I know Peter is tired, I have come to accept these breaks and not feel guilty for leaving.
This afternoon, I met up with Ann and visited with her parents. As many of you know, Ann's dad is temporarily in a rehabilitation facility trying to get his strength back from a recent hospital admission. Ann brought her mom over from a different assisted care facility to visit with her dad, and I am sure to some extent being separated from each other for this period of time is difficult since they have come to rely on each other for over 50 years. It is funny, I just met Mary and Sully (Ann's parents) this year, yet to some extent it seems like we have known each other for a much longer period of time. Perhaps it is because we are bound by cancer, since they lost their son to cancer two years ago, or the fact that we all have great respect for Ann. I am not sure, but visiting them on the weekend, makes me happy. It makes me happy for various reasons. First of which is I know the loneliness they experience and deeply feel as they live in an institutional setting. Having lived in a PICU for 11 months on and off, I feel this has opened my eyes to the feelings of isolation experienced by older adults who spend the majority of their days in hospitals, assisted living, and nursing facilities. The issues of older adults is not something new to me, this is my area of research and clinical interest, however, no amount of reading on the subject matter, or listening and counseling clients, could ever replace the insights I personally lived through this year. If I can spend a few hours with Mary and Sully, talking with them, hearing stories about old times, stimulate them cognitively, and make them feel connected to the outside world, then I consider this time well spent. I find it absolutely heart breaking that in our Country the older adult population for the most part is isolated and in many cases forgotten by the rest of society, as if we have to put this population into facilities, because seeing them, hearing about their pains and ailments, and interacting with them is too horrific for us. I can't help but say to myself, but there but for the grace of God go I. So I try to imagine how I would wish to be treated when I, God willing, get into my 80s and 90s.
I learned to be the kind of caregiver that I am from watching my mom care intensely for three years for my grandmother, who was a stroke survivor. I witnessed the profound effect that caregiving can have on a loved one, so much so that when I entered graduate school, I knew that caregiving was going to be my area of clinical specialty. My mom's experience with caregiving has given her great insights, which you can see she expresses well when she writes about the toll that Mattie's care is having on me. But for the first time today, and I have no idea why, I had a revelation. I have been visiting and supporting Mary and Sully, and yet not really acknowledging the amazing work Ann is doing for them each and every day. Caregiving means much more than an occasional visit, bringing a meal, providing flowers and clean laundry. Caregiving is a selfless job, and most likely if you talk with caregivers, they won't even acknowledge their intense roles. It is just a part of who they are, which is providing constant support, serving as a liaison with the medical community, being a full time cook, managing medications, finances, and living arrangements, but most profoundly it means seeing your loved one disengage from society, become more disabled, and in essence losing a piece of the person you know and love on a daily basis. Sometimes I wonder what is harder to deal with, losing an older adult immediately from a massive stroke or heart attack for example, or seeing them slowly and painfully suffer from the devastation of an illness or disease? Neither is easy, but having lived through watching someone I love suffer, it is a very hard picture to remove from your mind's eye. It stays with you forever, and at times it erases the happy times and memories, because it leaves you with a level of sadness that is indescribable. So I guess tonight I pause and thank God for all the family caregivers out there, who do their jobs quietly, diligently, and lovingly. I have no doubt God holds a special place in his heart for us. For without family caregivers our older adult population with illnesses would be at the mercy of a health care system and nursing facilities who neither have the time, patience, compassion, or commitment to stop and listen to the concerns and desires of their patients much less the family members caring for them.
While I was visiting Ann's parents, Peter kept sending me text messages. But this was very sweet because he was relaying messages to me from Mattie. Apparently Mattie missed me today, not in a way that I had to come home, but in a way that showed he appreciated me. It was very touching. When I arrived home, I got a big greeting (absence does make the heart grow fonder), and then I started putting dinner together. Another first, after I cooked dinner, Mattie wanted to join us outside on the deck to eat. I was excited at the notion that he was actually going to eat, and he led us in grace, but then after eating a few bits, he began to have his usual intense stomach pain. Despite the pain, he stayed with us at the table, and talked to us about his day. So in my assessment, though not a good eating meal, it was a moment for all of us to be together.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Vicki, I was so delighted to see that you got out on Saturday with Peter, even if most of the time was taken up running errands. I think it is good for Mattie to have some time away from the two of you when you can manage it and Mattie's emotional state will allow it. Trolls and "bug baking" must have made for an interesting morning. It is great that you all got to go out to the movie at the museum and that everyone, including Mattie had a good time. I hope to see more of those notes in the blog in the future. I understand what you are saying about trying to absorb everything around you, trying to gain as much as you can from every moment. It is an odd thing about us humans, we go through life quite unaware of much of what is going on around us until things are not going well and then we become very mindful of each moment. I am as always sorry that you and your family are going through this but grateful for the reminder to appreciate every one I care about and all the "gifts" I've been given. I hope this coming week brings some good advances for Mattie both physically and socially."
August 1, 2009
Saturday, August 1, 2009
Saturday, August 1, 2009
Quote of the day: "In helping others, we shall help ourselves, for whatever good we give out completes the circle and comes back to us." ~ Flora Edwards
Peter and I had a break together today, while Marisa watched Mattie. Marisa is the daughter of a friend and colleague of mine. Marisa came over with a bag full of trolls, dolls with funny and colorful hair. These dolls instantly engaged Mattie and he was off and playing. This was great for me, because while he was focused on Marisa, I moved bags of things downstairs and onto our deck so we could donate them today. It was wonderful to remove five large bags of things, but sad too because it doesn't even look like we even made a dent in Mattie's room!
Peter and I spent the first hour and a half running around doing chores. One of which was picking up Mattie's medications. The frustrating part was we had to bring the antibiotics home because they needed to be refrigerated. Going back home wasn't top on my list since I had just left, but I wasn't going to take a chance leaving the medication in the car, due to the heat. After all the chores, we had nice lunch together. We sat outside while having lunch, ate like a normal person, and actually had a chance to stop, think, and talk with one another. One of the first things to go, I have noticed, when you intensely care for someone, is that non essential conversation is eliminated. Peter and I bearly have time to chat with each other on relevant information as it pertains to Mattie's care. Our lives are so programmed that unless something is absolutely necessary it gets eliminated. Certainly this is understandable, as we are living through a chronic crisis, however, eliminating such things as conversation, peaceful meals together, and having time to reconnect does take a toll on us as individuals and a couple. While Peter and I were out, Marisa called us, and Mattie wanted us to come home. This call did not surprise me, but I was happy that he did manage without us for several hours. I am looking for the positive here. None the less, Peter and I really appreciated Marisa working for us today, because it gave us a much needed break.
When we arrived home, Mattie and Marisa were making plastic bugs together in this oven he received as a gift. Basically you can pour gel in metal molds, bake them, and out pops a bug. Delightful, no? Mattie wanted to make sure Marisa got to see the finished products before she left! After we said our good-byes to Marisa, we helped Mattie get ready to leave the house and go to the Smithsonian's Air and Space IMAX theatre, to see the movie, Night at the Museum. Mattie's preschool buddy, Alex, and his family invited us tonight, and it was a great adventure. Parking was easy, which is a feat in Washington, DC, and Mattie enjoyed seeing the activities and people at the museum. For those of you who haven't seen this movie, it is very humorous and creative. It is creative because at night, all the creatures and historical figures come back to life in the museum and interact with each other. I can honestly say this movie made me laugh, and this is something I don't get much of an opportunity to do. Mattie enjoyed the movie too and at one point I noticed he looked over to me and smiled. He was trying to check to see if I was having a good time, and seeing him smile made me very happy. I am sure I must be one of the only people on the planet who could tear up in this movie, but there is a scene between the main character and Amelia Earhart (remember at night these figures come back to life), in which Amelia thanks the main character for giving her a lifetime of fun in one night. Maybe that line wouldn't have meant anything to me a year ago, but now it has great meaning. Whenever I have a break, which isn't often, I feel the need to absorb everything around me in hopes it will change my feelings, outlook, and perspective. In essence I try to pack a lot into one free moment, in order to recapture happiness. Anycase, it is funny how cancer has changed my whole perspective on life, people, and the world around me, so much so that I can't go to even a movie without somehow applying it with my own life.
After the movie, we walked around a bit on the Washington Mall because it was a lovely evening. Peter took some pictures of Mattie and Alex together in front of the Capitol and the Washington Monument.
Quote of the day: "In helping others, we shall help ourselves, for whatever good we give out completes the circle and comes back to us." ~ Flora Edwards
Peter and I had a break together today, while Marisa watched Mattie. Marisa is the daughter of a friend and colleague of mine. Marisa came over with a bag full of trolls, dolls with funny and colorful hair. These dolls instantly engaged Mattie and he was off and playing. This was great for me, because while he was focused on Marisa, I moved bags of things downstairs and onto our deck so we could donate them today. It was wonderful to remove five large bags of things, but sad too because it doesn't even look like we even made a dent in Mattie's room!
Peter and I spent the first hour and a half running around doing chores. One of which was picking up Mattie's medications. The frustrating part was we had to bring the antibiotics home because they needed to be refrigerated. Going back home wasn't top on my list since I had just left, but I wasn't going to take a chance leaving the medication in the car, due to the heat. After all the chores, we had nice lunch together. We sat outside while having lunch, ate like a normal person, and actually had a chance to stop, think, and talk with one another. One of the first things to go, I have noticed, when you intensely care for someone, is that non essential conversation is eliminated. Peter and I bearly have time to chat with each other on relevant information as it pertains to Mattie's care. Our lives are so programmed that unless something is absolutely necessary it gets eliminated. Certainly this is understandable, as we are living through a chronic crisis, however, eliminating such things as conversation, peaceful meals together, and having time to reconnect does take a toll on us as individuals and a couple. While Peter and I were out, Marisa called us, and Mattie wanted us to come home. This call did not surprise me, but I was happy that he did manage without us for several hours. I am looking for the positive here. None the less, Peter and I really appreciated Marisa working for us today, because it gave us a much needed break.
When we arrived home, Mattie and Marisa were making plastic bugs together in this oven he received as a gift. Basically you can pour gel in metal molds, bake them, and out pops a bug. Delightful, no? Mattie wanted to make sure Marisa got to see the finished products before she left! After we said our good-byes to Marisa, we helped Mattie get ready to leave the house and go to the Smithsonian's Air and Space IMAX theatre, to see the movie, Night at the Museum. Mattie's preschool buddy, Alex, and his family invited us tonight, and it was a great adventure. Parking was easy, which is a feat in Washington, DC, and Mattie enjoyed seeing the activities and people at the museum. For those of you who haven't seen this movie, it is very humorous and creative. It is creative because at night, all the creatures and historical figures come back to life in the museum and interact with each other. I can honestly say this movie made me laugh, and this is something I don't get much of an opportunity to do. Mattie enjoyed the movie too and at one point I noticed he looked over to me and smiled. He was trying to check to see if I was having a good time, and seeing him smile made me very happy. I am sure I must be one of the only people on the planet who could tear up in this movie, but there is a scene between the main character and Amelia Earhart (remember at night these figures come back to life), in which Amelia thanks the main character for giving her a lifetime of fun in one night. Maybe that line wouldn't have meant anything to me a year ago, but now it has great meaning. Whenever I have a break, which isn't often, I feel the need to absorb everything around me in hopes it will change my feelings, outlook, and perspective. In essence I try to pack a lot into one free moment, in order to recapture happiness. Anycase, it is funny how cancer has changed my whole perspective on life, people, and the world around me, so much so that I can't go to even a movie without somehow applying it with my own life.
After the movie, we walked around a bit on the Washington Mall because it was a lovely evening. Peter took some pictures of Mattie and Alex together in front of the Capitol and the Washington Monument.
Mattie decided he wanted to walk home from the Washington Mall rather than drive back home. So literally I drove home by myself, and Peter walked home with Mattie. Mattie and Peter looked completely overheated by the time they got home, but Mattie enjoyed the fresh air and the walk. Mattie has been complaining of arm pain tonight, which of course always makes me nervous. But for tonight anyway I have rationalized the pain as pain from Friday's physical therapy session, where he put a lot of pressure on his arms to walk. It is just unsettling to hear about any aches and pains, because this brings back the memory of July 2008. I am hoping this fear goes away in time, but I am a realist.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Sometimes when I read the blog I am exhausted when I finish and I wonder how you can possibly pack so much into one day. Friday was one of those days and I just wonder where you found the energy to keep going. Playing full out all morning with Mattie, lunch with Peter (that made me laugh, I could just hear you and Mattie telling him about Chefs Mattie and Sunshine), then a race home and packing up to go to the clinic for therapy. Anyone else would have quit there but you then went off to a play and dinner. Wow! I don't know how you did all that. I am sorry Mattie did not manage to make it through dinner and is still having so many eating problems. I was very touched by your mother's email about "chronic sorrow as a profound unhappiness that exists in your soul," coloring everything you see or do. I do agree with that and I realize that every time you see other children doing things Mattie currently cannot, this feeling comes to the forefront. I also know that if you isolate yourself (and Mattie) you run the risk of becoming depressed on top of this. Perhaps the temporary solution is somewhere in between for now, to ration your time to what you feel you and Mattie can handle. I know that those who care about you and Mattie will understand your need to protect both of you. This is truly a difficult balancing act but if anyone can do it, you can. I hope Saturday's sunshine puts a smile in Mattie's heart."
July 31, 2009
Friday, July 31, 2009
Friday, July 31, 2009
Quote of the day: “Love and magic have a great deal in common. They enrich the soul, delight the heart. And they both take practice." ~ Anonymous
Mattie had another late night on Thursday, and I don't think I actually got to bed until 2am. My level of exhaustion continues to rise, and without much sleep, my migraine remains pretty consistent. Mattie woke up early and of course wanted to play. He is very focused on playing our restaurant scenario all week. I probably should elaborate on it for you, so you understand the level of fun and creativity he is having as we play our parts. In the scenario, Mattie plays Chef Mattie, but I am a chef too. My name is Chef Sunshine. Chef Sunshine is a piece of work, talks like Scarlett O'Hara, and cooks VERY bizarre things like roaches, spiders, and other bugs (you can see Mattie has gotten to me with his bugs). Mattie thinks I am absolutely hysterical when I talk like this. Due to the nature of what Chef Sunshine cooks and serves to people, it should be NO surprise that she has been reported to the health department. Our play scenes always involve a visit from the health department, a visit from the police, and of course Chef Sunshine's fast talking wit to get out of being fined or arrested.
Left: Mattie throwing a 3 pound ball at Anna, and Anna batting it.
The last message is from my mom. My mom wrote, "Chronic Sorrow is an apt name for what you are experiencing every day of your life since the diagnosis of Mattie's bone cancer last year on July 23rd. It is a condition that can't be treated by conventional medicine, altered, or "counseled away." It is a profound unhappiness that exists in your very soul, altering the way your body works, your eyes and ears communicate with the outside world. Even your mind is not allowed to function normally and your thoughts are constantly disrupted by doubts and fears that are frightening but not exaggerated and can give shape to deep seated anxieties about the future. You are intimately affected by every symptom, pain or discomfort that Mattie feels and are bound to his body, mind and spirit as if you had an outer body experience that has transformed you into an extension of Mattie. It is a crushing weight to handle every day and accounts for your wicked migraine headaches and general fatigue. It is a burden "too large" for human endurance and you are just a fragile young woman. I am proud of all that you have accomplished but like Daddy, I worry about you, your physical health and stamina to continue to function as the life-line for Mattie if you do not take steps to protect yourself from further physical stress and strain. I was thrilled to hear that you are seeking help at home to assist you in caring for Mattie on a regular basis. In the past, I felt It could have helped to make your day less tense and easier but now I feel it is imperative that you follow through on this idea before you break down and lose the physical capabilities that are required of you daily to ensure proper care of Mattie. That would be a disaster that neither you, nor Peter and especially Mattie could afford at this critical junction in his path towards recovery."
Quote of the day: “Love and magic have a great deal in common. They enrich the soul, delight the heart. And they both take practice." ~ Anonymous
Mattie had another late night on Thursday, and I don't think I actually got to bed until 2am. My level of exhaustion continues to rise, and without much sleep, my migraine remains pretty consistent. Mattie woke up early and of course wanted to play. He is very focused on playing our restaurant scenario all week. I probably should elaborate on it for you, so you understand the level of fun and creativity he is having as we play our parts. In the scenario, Mattie plays Chef Mattie, but I am a chef too. My name is Chef Sunshine. Chef Sunshine is a piece of work, talks like Scarlett O'Hara, and cooks VERY bizarre things like roaches, spiders, and other bugs (you can see Mattie has gotten to me with his bugs). Mattie thinks I am absolutely hysterical when I talk like this. Due to the nature of what Chef Sunshine cooks and serves to people, it should be NO surprise that she has been reported to the health department. Our play scenes always involve a visit from the health department, a visit from the police, and of course Chef Sunshine's fast talking wit to get out of being fined or arrested.
At lunch time, Mattie and I walked several blocks to meet Peter for lunch. Peter suggested this, and Mattie was actually excited to have lunch out. A definite first! This was actually a meal where we all sat down for more than five minutes and ate and talked. We filled Peter in on our restaurant play scenario that we have been playing all week. Peter couldn't get over this bizarre story, and as Mattie and I were reliving the stories for Peter, we both were laughing. As Peter commented to me, he hadn't seen me laugh in a long time. So certainly in the midst of HOURS of play, there are good moments, and I wanted to make sure I reflected on that, but despite these good moments, it is hard to capture them and balance them when we are so tired and the demands of Mattie's care seems endless.
After lunch we walked back home, but it started to rain. I can assure you a wheelchair never moved so quickly through the streets of Washington, DC as it did today! Mattie was practically timing me. Not a great thing to do, when I am already wiped out. We got home, played more, and then packed up and headed for physical therapy. Today I brought Mattie's walker into clinic. It was quite a juggling act dealing with the rain, Mattie in a wheelchair, and dragging the walker behind me. At one point I wanted to just stop and scream, ARE YOU KIDDING ME?! We did make it to clinic and Mattie had a good therapy session. I took many pictures of his accomplishments today that I wanted to share with you.
Left: Mattie using his walker for the FIRST time in months!
Left: Mattie using his walker for the FIRST time in months!
Right: Mattie brought a rubber fly with him to his session. He had to walk to the fly, and then squash it with "Steve," his right foot.
Left: Mattie throwing a 3 pound ball at Anna, and Anna batting it.
Right: Mattie did a great deal with these large therapy balls. He rolled them with his feet, but he also picked them up, raised his arms and threw them.
Left: Mattie even tried walking up steps today. This was quite complicated for him, but he did try it. By the time the session was over, he did not want to move at all. Though he had a good session, he can direct many of his negative feelings about the process onto me. So I experienced a lot of snappy and nasty behavior post therapy. I have learned to put this all into perspective, but there are some days I can handle this better than others. Today wasn't one of those days, mostly because I am simply tired of ALL of this.
When Mattie and I arrived home, we got a call from Dr. Gonzales. Dr. Gonzales is one of the HEM/ONC attending physicians, she has been working with us while Dr. Synder is on vacation. Dr. Gonzales called to follow up on many of my concerns that I aired yesterday. The first of which was Mattie's stomach issues. Back in May, tests were run on a stool sample of Mattie's to assess for the presence of H. pylori, a bacteria responsible for peptic ulcers. Turns out that test was positive back in May, but additional blood work was going to be done, because I was told the stool sample test can produce many false positive results. Lovely! So since that time, each week I would ask about the blood test results. Each time, I heard no results were back. So finally yesterday I told Dr. Gonzales that this was ridiculous, and I wanted an answer because in my assessment Mattie has an issue, and it isn't being addressed. So today Dr. Gonzales found all the results, and indeed Mattie also has a antigen in his blood for H. pylori. So in essence he has an ulcer. Finally! Something to explain his symptoms. Mattie will begin treatment for an ulcer tomorrow, which involves being on two different antibiotics for two weeks, as well as taking prevacid. However, Dr. Gonzales feels the ulcer issue doesn't explain his lack of eating. So she would like to start Mattie on Megace next week. Megace is a man-made chemical similar to the female hormone progesterone. Megace is used to treat loss of appetite and weight loss in certain patients. It is either that or Marinol, which is a derivative of Marijuana. Given Mattie's sensitivities to things, we are opting against using Marinol. At this point I am desperate to get him to eat, but if this appetite stimulant doesn't work, then more invasive methods like a feeding tube have been posed to me.
This evening Mattie was invited to a play. Ann's daughters were performing and Abigail personally invited Mattie on Tuesday. Mattie THOROUGHLY enjoyed the play. His body was moving to the music and he really seemed engaged and having a good time. Mattie sat next to Jackson, who some of you may remember from our July 4th trip. Jackson is Liz's son, and Liz is a good friend of Ann's. Any case, the boys had a good time next to each other. After the play was over, we all went out to dinner together. Michael (Ann's son) came in our car, and Mattie and Michael had a wonderful time chatting with each other. Mattie had a prism in the back seat with him, and Michael was showing him all the neat things you can do with it. Michael is 9, but despite his young age I was impressed with how patient he was with Mattie and he couldn't have been a better assistant to have along (helped me with the wheelchair, closed the trunk for me, etc...). I told Michael I would hire him! He seemed very proud of this comment, and what instantly struck me is that helping others gives all of us a way to feel important, responsible, and connected to another human being. In any case, it was a wonderful to see the empathy, level of sensitivity, and concern Michael expressed toward Mattie, and it did not end once the car ride was over. Michael stuck with Mattie throughout the evening, helped him order his food, and then let me know what Mattie was able to actually eat.
Despite Mattie being surrounded by people who cared about him, mid meal, Mattie looked at me, and waved me over. By the time I got to him he was crying. He said he felt nauseous and sick and he wanted to go home. Mind you I was in the process of trying to eat. But tonight is not unlike any other night, where eating is an expendable chore. Ann and her friend, Liz, helped me get packed up, and assisted me getting Mattie to the car. So I left tonight pondering, is it worth doing these outings? It is worth trying to pretend to be normal? Clearly we are not normal, and seeing what other children are able to do and participate in, only further upsets me, because this is not Mattie's life, nor do I know when it will be. I have no answers to any of my questions, other than I continue to grieve for a life that no longer exists.
When we got home tonight, Peter gave Mattie Kytril (his anti-emetic). Peter stayed home this evening in an attempt to start cleaning out stacks of toys and things that have accumulated over 12 months. We have so many things, that it literally could take me weeks to sift through. I appreciate Peter making a dent into this project, but we have SO much more to do. However, in the grand scheme of things, do I care that things are piling up around me? I guess a part of me does since I am a highly organized person, but on the other hand, I am dealing with so many emotional things right now that just keeping it together is the best I can do.
We want to thank the Keefe family for their very generous dinner! We will be enjoying it tomorrow night! Thank you for thinking of us and for your continued care and support.
I would like to end tonight's posting with three e-mail messages I received today. The first is from my friend, Charlie. Charlie wrote, "Wow, what a full day on Thursday. I wonder how you kept going with so little sleep and such a full schedule. Mattie looked like he was fully involved and invested in what was going on in both physical therapy and in the art therapy rooms. I think you are right that Jocelyn is a great role model for Mattie. As much as we as parents would like to think of ourselves as our children's role models, unfortunately sometimes their experiences are outside our own and we cannot make the connection they need; how fortunate Mattie is to have someone like Jocelyn (and Brandon as well) to use as his models in this instance. Mattie clearly enjoys entertaining the other children in the clinic and it is wonderful of Bob Weiman to help Mattie gain the skills to be able to do this. I hope that you are able to find a way to ameliorate Mattie's stomach problems so that he is once again able to begin to enjoy eating and gain weight and health."
The second message is from Carolyn, a hospital volunteer who worked for Linda. The irony is Carolyn and I only met twice while Mattie was in the hospital, but apparently Mattie made quite an impression on her. Carolyn's message was deeply touching and I wanted to share it with you. Carolyn wrote, "I have been meaning to e-mail you for some time now, and hours before my organic chem final seemed as good a time as any. First let me re-introduce myself -- I was a volunteer in the Child Life department (when Linda's interns were Meg and Laura), until I came home to Wisconsin for the summer. (I have your e-mail address from the time when I put Mattie's picture in the GU Relay for Life slideshow.) I only interacted with Mattie a few times in the PICU -- I had the privilege of seeing a great magic show as well as prepping for the birthday party! -- but when Meg told me about your blog I hopped online to check it out. And now I can barely fit all I want to say into an e-mail of reasonable length -- or even put it into words. I wanted to let you know first of all that you have a loyal blog reader and Mattie supporter in Wisconsin! It's probably a bit boring by now to hear from blog readers like me that your strength simply amazes and inspires me. As a psychology major, I always love those little tidbits you throw into the blog too :)But why I'm really writing to you is to say how dramatically your blog has changed my perspective on my own future. I am hoping to be a doctor someday, and Mattie and the blog will forever impact me on that journey. Reading your blog puts a face and a story behind the hard sciences that seem so far removed from medicine. And I am certain that I will never forget Mattie, and your family will constantly remind me of why it's worth it to put myself through the long haul of med school. Perhaps even more powerful is how your candid writing has shaped my conception of what it means to be a good doctor and of what kind of doctor I want to be. Through you, I've gained such a unique appreciation of the patient's side of things. To hear how many times you have had to go out of your way to advocate for Mattie is frustrating, and it's so discouraging to a med student-hopeful to see so many arrogant and, to put it plainly, socially incompetent doctors. BUT I strive to be like the few valuable Dr. Bob's and Dr. Snyder's out there. It's not just about treating a disease or using a drug -- it's about treating a patient and using respect. It seems so obvious! But far too easy to forget.To focus on what your blog means to me is selfish, I know, but I offer what support I can from 1000 miles away -- my prayers. I just want to say THANK YOU. We've scarcely even met (though I feel as if I know your family intimately), but know that you have had a significant impact on my life."
The last message is from my mom. My mom wrote, "Chronic Sorrow is an apt name for what you are experiencing every day of your life since the diagnosis of Mattie's bone cancer last year on July 23rd. It is a condition that can't be treated by conventional medicine, altered, or "counseled away." It is a profound unhappiness that exists in your very soul, altering the way your body works, your eyes and ears communicate with the outside world. Even your mind is not allowed to function normally and your thoughts are constantly disrupted by doubts and fears that are frightening but not exaggerated and can give shape to deep seated anxieties about the future. You are intimately affected by every symptom, pain or discomfort that Mattie feels and are bound to his body, mind and spirit as if you had an outer body experience that has transformed you into an extension of Mattie. It is a crushing weight to handle every day and accounts for your wicked migraine headaches and general fatigue. It is a burden "too large" for human endurance and you are just a fragile young woman. I am proud of all that you have accomplished but like Daddy, I worry about you, your physical health and stamina to continue to function as the life-line for Mattie if you do not take steps to protect yourself from further physical stress and strain. I was thrilled to hear that you are seeking help at home to assist you in caring for Mattie on a regular basis. In the past, I felt It could have helped to make your day less tense and easier but now I feel it is imperative that you follow through on this idea before you break down and lose the physical capabilities that are required of you daily to ensure proper care of Mattie. That would be a disaster that neither you, nor Peter and especially Mattie could afford at this critical junction in his path towards recovery."
July 30, 2009
Thursday, July 30, 2009
Thursday, July 30, 2009
Quote of the day: "The world of reality has its limits; the world of imagination is boundless." ~ Jean Jacques Rousseau
Mattie had a hard time falling asleep last night. He was complaining of intense stomach pain that seemed to radiate throughout the rest of his body. Needless to say he had another restless night of sleep on Wednesday. Mattie was up multiple times during the night to use the bathroom, and despite having a bad night of sleep, he was up early this morning.
Left: Maya and Zachary are inspecting the ring that was used in the ring trick! Everyone was very engaged with the process.
After Bob left, the art table was a flurry of activity with another project. Mattie, Maya, and Jocelyn decided to design a farm out of a large cardboard box. Jocelyn helped them create a barn, and the project took on a life of its own. So much so, that Maya and Mattie performed a play for us. They had Jenny get out their solar system box that they created a while back, and they placed the solar system box near the barn. Apparently the space creatures were invading the barn today. It was a great play filled with lots of musical numbers!
As 3pm came around, Anna arrived in clinic with Marisa (a PT intern). I am not sure who got more therapy today, Mattie or Anna. Mattie had Anna scooting around the clinic after him, and Anna also got Mattie to step up on a step stool today, while I was playing the game Battleship with him. Naturally I was losing! Seems to be my lot in life.
Chronic Sorrow or Depression....? Jan Spilman, MEd, RCC
This morning, I read a piece on family caregivers in the New Brunswick, NJ, Home News Tribune. It quoted an article in the American Journal of Public Health saying that family caregivers experience depression at a rate six times higher than non-caregivers.
I wondered, as I read the newspaper piece, whether the researchers had considered chronic sorrow in their assessment of the caregivers' moods? Would such a differential diagnosis have altered their findings?
For many of my caregiving years, I countered the concerns of my family and friends with an emphatic, "But I'm not depressed!" It's true that I had no energy, but who would if their sleep was interrupted every night? And I cried whenever I found a moment of quiet, (usually in my car driving somewhere), but I also had days of intense pleasure and beauty. My weight had gone up but that was because I was eating copious carbohydrates to counter the constant tiredness and I had a foot injury that had interrupted my usual exercise program. As far as I could tell, I wasn't feeling much differently from anyone else who was caring, long term, for an ill family member.
When I finally came across the writings of American psychologist, Dr Susan Roos, (Chronic Sorrow: A Living Loss), and of the Nursing Consortium of Chronic Sorrow Research I breathed a sigh of relief. They were describing my experience exactly and they weren't calling it depression.
Chronic sorrow is neither clinical depression nor chronic grief. Rather, it is the normal, but often unrecognized or misdiagnosed set of grief responses experienced by people with chronic conditions and the people who love them. Because this chronic condition is ongoing, so is the sorrow. Susan Roos describes this endless loss as a "living loss" that persists until the person with the chronic condition has died.
At the core of chronic sorrow is the aching discrepancy between our perception of how life is and "how it should have been." This discrepancy leads to a sorrow that is profound, pervasive, and periodically very intense.
Contrary to the experience of clinical depression, though, our daily functioning is rarely affected. We maintain access to a full range of emotions and our spirals into intense sadness are intermittent in nature, often triggered by anniversary dates, missed developmental milestones or recurrences or worsening of our loved one's condition.
What many of us find most helpful is "companioning" with empathic support and help with problem solving. Someone who will "be" with us, in our sadness and in our joy. Someone who will walk the journey with us without trying to fix the unfixable.
That is not to say that therapy is unhelpful. A skilled grief and trauma therapist who understands the difference between depression and chronic sorrow can be an excellent "companion" and a godsend. While I don't believe it is possible to "cure" chronic sorrow, it is possible to find healing in the journey - a resolution of posttraumatic stress symptoms, the development of wisdom, a refined appreciation for life, the growth of spirituality and meaning - and that healing can be our goal.
Quote of the day: "The world of reality has its limits; the world of imagination is boundless." ~ Jean Jacques Rousseau
Mattie had a hard time falling asleep last night. He was complaining of intense stomach pain that seemed to radiate throughout the rest of his body. Needless to say he had another restless night of sleep on Wednesday. Mattie was up multiple times during the night to use the bathroom, and despite having a bad night of sleep, he was up early this morning.
Mattie had a very busy day in clinic today. When he arrived, he was greeted by his buddy, Jocelyn. Jocelyn changed her clinic days to Thursdays, so she could spend time with Mattie. I find this incredibly thoughtful and special. As many of you know, Jocelyn is a young adult with Osteosarcoma. She is a great role model for Mattie, and has such a positive outlook on things, despite the fact that her cancer has reoccurred. Jocelyn spent several hours with Mattie today, and she got to see him playing with Maya as well as perform a magic show with Bob Weiman, Mattie's head of the lower school.
Some of my readers may remember Maya. Maya is also 7-years-old and we see her occasionally in clinic. In the past, Maya and Mattie painted a clinic ceiling tile together of a train and the greatest story which I will never forget is how we met Maya. Maya was sitting at the art table with Mattie and several other children several months ago. Mattie wasn't engaging with ANY of the other children. Maya then sat down at the table and told the other kids that her arm hurt from being stuck several times with a needle in order to start her IV. Mattie was head down in a project, but after Maya finished speaking, Mattie looked up and told Maya that he knew exactly how she felt. That actually stunned me, because normally Mattie is ALL business at the art table, and emotional connections are not his top priority there. But there was something about Maya that caught his attention. Since that time, they have been good buddies! In fact, she is the only child in the clinic that Mattie can relate to. I think this is interesting to note. So I was thrilled that Maya was at clinic today as well.
When we arrived, Mattie, Jocelyn, and Maya started on a joint art project. Mattie brought something from home that he thought looked like a pearl. So he had everyone designing oysters today, or in other words a home for the pearl! This kept them focused and busy, until Bob arrived. The magic show was a big hit with Mattie, Maya, Maya's brother, Zachary, and other clinic staff. They all had a good time together, and I think Jenny (who was nice enough to take pictures for me) caught some great photos of the show!
Left: Mattie and Bob preparing Maya and Zachary for the next trick. Can you guess what came flying out of this potato chip canister? Good job if you guessed a snake! Everyone jumped!
Right: I am always amazed when Mattie decides to perform this ring trick. I have to tell you this isn't an easy trick. But I think Mattie and I love this trick because Bob used this trick or I should say prop to propose to his wife. This is a story that has stuck with us this year. Needless to say, I was impressed that Mattie performed the trick, and you can see Bob smiling on the right, watching the other kids' reactions.
Left: Maya and Zachary are inspecting the ring that was used in the ring trick! Everyone was very engaged with the process.
Right: Bob performed an imaginary card trick for all of us. Bob gave an imaginary deck of cards to Jocelyn. Jocelyn (sitting on a stool behind Mattie) had to shuffle them, and then had to pick out an imaginary card (or basically had to think of a card, but of course Bob did not know the card she was thinking about, none of us did)! Bob then told us that the imaginary deck of card jumped into his pocket. So he pulls out the deck of cards from his pocket, opens them up, and in the deck only one card is faced down. So Jocelyn pulls out that card, and indeed it was the 3 of hearts, the card she was thinking of. I don't know how Bob did it, and in my tired state, I can't even think this through. It is too bad that Peter wasn't there for this, because Peter loves to dispel the illusion behind the magic.
I would say the magic show was a positive experience for Mattie and definitely a way to connect him with other kids in the clinic. I appreciate Bob's time, energy, and commitment to our family. We all had a wonderful chat with Bob after the show was over, and Bob introduced me to an actor by the name of Sacha Baron Cohen. As you can imagine I am out of touch with mostly everything happening in the real world. Bob and Jocelyn were telling me about some of his movies and the premises behind them. It got me thinking about what our culture's fascination is with reality TV. Or in essence with seeing people's inner thoughts and feelings exposed to the public. Of course in many cases it doesn't sound like Sacha Baron Cohen's interviewees realize that the controversial things they are saying will be televised for the world to see. It is an interesting study of human nature (though definitely a rather unethical and devious way to capture such information). Do we say and act differently when we think others are watching us? Or are we consistent? I certainly can't comment on these movies because I haven't seen them, but I wonder by exposing people's biases, hatred toward certain religions, and people, what does this accomplish? Sure it could be a great academic exercise to discuss the fact that anti-semitism, racism, and other biases still exist in our world. But the bigger question is, okay, it is great to uncover these notions, but now what? What is the next step? I think it is great to uncover issues, but not great to leave them hanging there unresolved with no productive way to process them and address them. Exposing such topics for humorous purposes isn't too funny to me! As I told Bob and Jocelyn, I am in a place right now in my life, in which my lens on things is VERY skewed or distorted. I have witnessed and seen some of the worst things life has to offer this year, and I guess I feel as if exploiting and exposing others for their beliefs and putting it out there for the public to see makes me uneasy. Not because of the subject matter being discussed, because if such information gets conveyed in a powerful and meaningful way, great, but I can't help but think of the deception used in order to capture this information. Over the course of these last 12 months, I have learned that being vulnerable BY CHOICE, and open to sharing your story and inner feelings, in the end is what achieves a better understanding of one's self, one's friendships, and the amazing school communities I am a part of. The key is by CHOICE. To me nothing of great meaning gets accomplished through deception, or at least meaning that produces actual change. So I guess what I am saying is open dialogue and sharing of beliefs is powerful and beautiful when done for the right reasons and purposes. You can see the dialogue that Bob was having with us today got me thinking. Thank you Bob for your visit, it was stimulating for both Mattie and me.
After Bob left, the art table was a flurry of activity with another project. Mattie, Maya, and Jocelyn decided to design a farm out of a large cardboard box. Jocelyn helped them create a barn, and the project took on a life of its own. So much so, that Maya and Mattie performed a play for us. They had Jenny get out their solar system box that they created a while back, and they placed the solar system box near the barn. Apparently the space creatures were invading the barn today. It was a great play filled with lots of musical numbers!
Left and Right: Maya and Mattie performing with the solar system box (the box with the red curtain in front of it) and Jocelyn's barn.
As 3pm came around, Anna arrived in clinic with Marisa (a PT intern). I am not sure who got more therapy today, Mattie or Anna. Mattie had Anna scooting around the clinic after him, and Anna also got Mattie to step up on a step stool today, while I was playing the game Battleship with him. Naturally I was losing! Seems to be my lot in life.
Left: Anna and Mattie racing. Marisa is pushing Mattie's MTP IV pole, and Maya is in the background serving as the judge of the race.
Right: Mattie is getting a kick out of cutting Anna off with his NEW wheelchair.
About an hour after Mattie received MTP-PE, he started having the chills and getting very tired. He fought off the need for sleep as long as possible, but when Dr. Gonzales came out by the art table and saw Mattie, she knew he had to lie down. However, there were no clean beds available in clinic. But that did not stop Dr. Gonzales. She is a woman after my own heart. She went into one of the rooms, tossed out the cleaning person, and literally changed the bed herself, and helped me get Mattie into bed. She has actually helped me in this way several times before. My joke with her is that who knew she would go to medical school to eventually make up beds for her patients. I am joking, but also serious at the same time. I admire a person who is humble enough to do what is in the best interest of her patients, and puts her degree and title aside to get the job done. Mattie got into bed, and complied with the entire examination. I was very proud of him, and yet in awe of the connection Dr. Gonzales has with Mattie.
Dr. Gonzales and I spoke about several things today. One of which is Mattie's intense stomach pain. It appears that Mattie could have either gastritis or an ulcer. Certainly there are invasive tests such as an endoscopy that could be performed to confirm such diagnoses, but we are all hesitant to perform these right now (I appreciate Ann's e-mail to me today, who basically helped me stick to my initial thoughts which is to avoid invasive testing unless absolutely necessary). So the goal for this week, is to treat Mattie with prevacid, and see if that helps the stomach pains. None the less, we still have the issue of a lack of appetite to contend with. We spoke about Marinol, which you may recall is a FDA approved drug to stimulate immunocompromised patients' appetite. However, some patients do experience an outer body sensation when on this drug. So frankly I am not willing to test it to see if Mattie falls into this small percentage who develops this side effect. We will need to come up with a solution soon, because I am being told that Mattie's appetite should have come back by now.
In addition, to discussing Mattie's weight, we also discussed Mattie's alkaline phosphatase level. Alkaline phosphatase is an enzyme made in the liver and the bone and is used as a way to monitor bone problems such as rickets, osteomalacia, and bone tumors. Peter told me that last week Mattie's alkaline phosphatase level was sky high. This concerned both of us, because this may be indicative of cancer. However, this week it is back down to the normal level, so we can only assume or hope that last week's blood test gave unreliable results.
Mattie and I got home after 6:30pm, so we spent over six hours at the hospital! We want to thank the Doane family for a wonderful dinner! We can't thank you enough for your continued support and care for our family!
I would like to end tonight's posting with a message from my friend, Charlie. After her message, I would like to share an article Charlie sent me today, that I found fascinating. Thanks Charlie for giving me the language or diagnosis that helps to describe my issues and feelings! Charlie wrote, "Reading the blog each day is something of an adventure. I always wonder where Mattie's imagination will take us. It is clear that we are exploring a couple of themes here; one is bugs (definitely a fascinating subject) and the other is soup. This is interesting since the soups that Mattie is creating these days tend not to be very nourishing but rather something that would be rejected by the recipient. You are doing a great job of helping Mattie face his concerns about going outside and of doing therapy. I agree with you that Bob W.'s suggestion about having people regard Mattie for positive reasons is a very good one and will likely help with self esteem issues. It also gives Mattie another arena where he can be successful at something others may not be able to do. I think he is sensitive to the fact that he cannot do a lot of things other children can; I also think he will not try to walk or do things he is not convinced he can (he does not want to try and then to fail) so trying the harder things earlier in the therapy session when his energy levels are higher is a good idea. I wish you a good day in the clinic with lots for Mattie to do and hopefully a good night's sleep for you."
Here is the article Charlie sent me today from the Caregiver Wellness website. I most definitely have Chronic Sorrow without a doubt, and can relate to the activities and feelings expressed in this article wholeheartedly!
Chronic Sorrow or Depression....? Jan Spilman, MEd, RCC
This morning, I read a piece on family caregivers in the New Brunswick, NJ, Home News Tribune. It quoted an article in the American Journal of Public Health saying that family caregivers experience depression at a rate six times higher than non-caregivers.
I wondered, as I read the newspaper piece, whether the researchers had considered chronic sorrow in their assessment of the caregivers' moods? Would such a differential diagnosis have altered their findings?
For many of my caregiving years, I countered the concerns of my family and friends with an emphatic, "But I'm not depressed!" It's true that I had no energy, but who would if their sleep was interrupted every night? And I cried whenever I found a moment of quiet, (usually in my car driving somewhere), but I also had days of intense pleasure and beauty. My weight had gone up but that was because I was eating copious carbohydrates to counter the constant tiredness and I had a foot injury that had interrupted my usual exercise program. As far as I could tell, I wasn't feeling much differently from anyone else who was caring, long term, for an ill family member.
When I finally came across the writings of American psychologist, Dr Susan Roos, (Chronic Sorrow: A Living Loss), and of the Nursing Consortium of Chronic Sorrow Research I breathed a sigh of relief. They were describing my experience exactly and they weren't calling it depression.
Chronic sorrow is neither clinical depression nor chronic grief. Rather, it is the normal, but often unrecognized or misdiagnosed set of grief responses experienced by people with chronic conditions and the people who love them. Because this chronic condition is ongoing, so is the sorrow. Susan Roos describes this endless loss as a "living loss" that persists until the person with the chronic condition has died.
At the core of chronic sorrow is the aching discrepancy between our perception of how life is and "how it should have been." This discrepancy leads to a sorrow that is profound, pervasive, and periodically very intense.
Contrary to the experience of clinical depression, though, our daily functioning is rarely affected. We maintain access to a full range of emotions and our spirals into intense sadness are intermittent in nature, often triggered by anniversary dates, missed developmental milestones or recurrences or worsening of our loved one's condition.
Because the source of our sadness is not "resolvable," neither is our grief. We can't expect ourselves to "get over it" or "just get on with our lives." Antidepressants are not the answer unless we're actually depressed. Nor is psychotherapy focused on uncovering the traumas of our childhoods. (Though this can be helpful at another time.)
What many of us find most helpful is "companioning" with empathic support and help with problem solving. Someone who will "be" with us, in our sadness and in our joy. Someone who will walk the journey with us without trying to fix the unfixable.
That is not to say that therapy is unhelpful. A skilled grief and trauma therapist who understands the difference between depression and chronic sorrow can be an excellent "companion" and a godsend. While I don't believe it is possible to "cure" chronic sorrow, it is possible to find healing in the journey - a resolution of posttraumatic stress symptoms, the development of wisdom, a refined appreciation for life, the growth of spirituality and meaning - and that healing can be our goal.
July 29, 2009
Wednesday, July 29, 2009
Wednesday, July 29, 2009
Left: Mattie pushed the barrel off the ramp, and onto the floor. On the floor were plastic bugs, so the goal was to push the barrel as hard as he could to squash the bugs. A great motivator for Mattie!
After therapy, Mattie and I headed home and played a while. But while I was playing, I could feel myself shutting down. So I connected with Peter and told him that when he got home, I would have to lie down. Despite Peter being tired too, he did mobilize forces and has been working with Mattie now for hours. While they were playing, I went to lie down, and two hours later woke up. I still feel very tired, and two hours went by as quickly as 20 minutes.
The second message is from my friend, Mary M. Mary knows that I am up late most nights. I can't tell you how nice it was to receive her message at 1am. It made me feel like I wasn't the only one up at that hour and worrying about my situation. Thank you Mary for writing, and understanding the complexities of the night. Mary wrote, "It's almost one in the morning, and I'm wondering if you are up, as you are so many nights. I woke up in the middle of the night (like I do many times) and as I do on those nights, I think of you, Peter, and Mattie and I check the blog. Tonight, after reading about your day and your ABBA experience, I wondered how you managed to go to Wolf Trap when you were so tired and had a terrible migraine. I resist going there because it makes for a long night, when you include the drive out there, etc. Somehow you managed to go and even have fun! I love ABBA too and I don't think I will ever be able to listen to ABBA without thinking of Mattie. If you are up tonight, I hope you know you are not alone with your worry about Mattie. I think it's hardest at night, when it's dark and everyone is asleep. It's easy to go to the very darkest places. At those times (day or night) when you are feeling very scared, I hope it helps to know that there are so many people who are scared with you. We are all praying for Mattie to have the outcome of the young man in the video who climbed those mountains. Life is full of miracles, as that video proves. Mattie may be one of them."
Quote of the day: "It is not so much our friends' help that helps us, as the confidence of their help." ~ Epicurus
Mattie had another busy day at home today, full of all sorts of imaginative play. However, unlike earlier in the week, I am just SO tired today, I can bearly keep up with Mattie's energy. Last night, another mom whose child has Osteosarcoma posted a comment onto our blog. Karen described my level of tiredness as, a "bone deep feeling of utter fatigue." I can't think of a better way to describe this all encompassing feeling, that affects my body, mind, and spirit. It is a level of fatigue in which moving, playing, and functioning are all overwhelmingly difficult. Needless to say when I feel this tired and have a migraine, I emotionally feel as if someone sucked the life out of me. I reached the point today that I wasn't sure I even had the energy or was safe enough to drive Mattie to the hospital. My head and eyes simply hurt. We did make it to the hospital and back, but when I got back home, I knew I couldn't drive any more for the rest of the day.
This morning, Mattie created another soup for me to try. He loves this restaurant play scenario we created earlier in the week. So today, he decided he would move away from acorns and rocks, and try serving me bugs. After all I love bugs, don't I?! I took a close up of the "stew" and then of course of Chef Mattie cooking up this surprise. We did this for hours, and also continued playing when we got home from physical therapy.
When it was time to go to physical therapy, Mattie did not want to leave the house. Of course that wasn't an option. He made up every excuse under the sun why he couldn't go. Needless to say, I gave him Tylenol for his supposed pains, and put him in the car. He had a productive session today, but Mattie refused to try to walk, or stand. Tomorrow we will begin his session with walking, in hopes that he will have the energy in the beginning of the session. But Thursday is a MTP day, so I never have great expectations therapy wise on those days. Anna, did get Mattie to do lots of great activities with his arms, and he extended his left arm, passed 135 degrees. Remember the goal is 180 degrees (straight up over his head). However, Anna is going on her honeymoon in a week, and will be gone for three weeks. She is helping me line up therapy with other professionals during that time, but I am concerned naturally to be losing Anna for so long. For Mattie, the rapport with his therapist is paramount. Fortunately I will be bringing Linda (Child Life Specialist) in with me to help transition Mattie to his interim therapists until Anna returns. Where would I be without Linda? I am not sure, but fortunately for Mattie, Linda is very open and willing to assist us even if we are not inpatient! I snapped some pictures during physical therapy today to give you some idea of what Mattie accomplished!
Left: Mattie throwing a weighted ball (about three pounds) to Anna, who is sitting at the opposite end of the mat.
Right: Mattie rolling a barrel up a ramped mat. Anna is holding both Mattie and the barrel, but Mattie is indeed building up his arm strength as he pushed this barrel up the ramp.
Left: Mattie pushed the barrel off the ramp, and onto the floor. On the floor were plastic bugs, so the goal was to push the barrel as hard as he could to squash the bugs. A great motivator for Mattie!
Right: Mattie using his legs to roll the barrel down the ramp.
Left: Mattie wanted me to take a picture of this creation he made today. Mattie loves Anna's bunny bowling pins. Notice the "king" bunny pin that is front and center. Mattie particularly LOVES him! Any case, in the previous picture you saw Mattie rolling the barrel down the ramp with his feet, well he was rolling it down the ramp to knock over this bunny pin creation at the bottom of the ramp!
After therapy, Mattie and I headed home and played a while. But while I was playing, I could feel myself shutting down. So I connected with Peter and told him that when he got home, I would have to lie down. Despite Peter being tired too, he did mobilize forces and has been working with Mattie now for hours. While they were playing, I went to lie down, and two hours later woke up. I still feel very tired, and two hours went by as quickly as 20 minutes.As we head into Thursday, Mattie has his clinic appointment and will be receiving MTP-PE. Mattie has a busy day in clinic planned, and we are very happy that his buddy, Jocelyn is coming by to play with Mattie. In addition, Bob Weiman, Mattie's head of the lower school, is also coming to perform a magic show in the clinic with Mattie's help. Bob wrote me a very touching e-mail the other day that said in essence that we wants Mattie to experience people staring at him for a positive reason (because he will be performing some great tricks) rather than because he is a child with cancer. I am solidly behind anything that empowers Mattie and builds up his self esteem. Thanks Bob!
We want to thank the Ferris family tonight for a wonderful dinner. We all enjoyed it. We can't thank you enough for all the lovely gifts too! The t-shirt that you brought Mattie back from your trip to China was extremely thoughtful. Thank you for thinking of him across the Pacific! I know he will enjoy the Knex ferris wheel as well! We appreciate your family's love and constant support!
We want to thank the Ferris family tonight for a wonderful dinner. We all enjoyed it. We can't thank you enough for all the lovely gifts too! The t-shirt that you brought Mattie back from your trip to China was extremely thoughtful. Thank you for thinking of him across the Pacific! I know he will enjoy the Knex ferris wheel as well! We appreciate your family's love and constant support!
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am sorry that you spent so much of Tuesday in pain from your migraine. I don't know how anyone with a migraine functions at all; it always seems the pain is so overwhelming. Unfortunately, Mattie is currently functioning in a way that 95% of the time is about his own needs and wants, only occasionally is he able to move out of that situation and acknowledge someone else's. I think part of that may be that he knows how dependent he is on you and Peter so any illness or weakness in you frightens him terribly. This maybe part of why he refuses to leave you to rest when you so clearly need to do so. I know you are going out of your way to make Mattie's time away from the hospital and treatment fun and memorable and that it hurts you a lot when he cannot or will not acknowledge that; this is much like the situation where he was with Peter and had a good time but his report of it was that he did not. Try not to overreact to what Mattie says, watch how he acts and enjoy his smiles and laughter. Perhaps Dr Biel can shed some light on this but it almost seems as if Mattie needs to deny that he is enjoying himself when he goes out with friends. Several reasons come to mind but since I am not the one working with him, I don't know about the validity of those thoughts. However, it is clear that he does enjoy doing things once he starts and you need the interpersonal connections as well so keep doing it."
The second message is from my friend, Mary M. Mary knows that I am up late most nights. I can't tell you how nice it was to receive her message at 1am. It made me feel like I wasn't the only one up at that hour and worrying about my situation. Thank you Mary for writing, and understanding the complexities of the night. Mary wrote, "It's almost one in the morning, and I'm wondering if you are up, as you are so many nights. I woke up in the middle of the night (like I do many times) and as I do on those nights, I think of you, Peter, and Mattie and I check the blog. Tonight, after reading about your day and your ABBA experience, I wondered how you managed to go to Wolf Trap when you were so tired and had a terrible migraine. I resist going there because it makes for a long night, when you include the drive out there, etc. Somehow you managed to go and even have fun! I love ABBA too and I don't think I will ever be able to listen to ABBA without thinking of Mattie. If you are up tonight, I hope you know you are not alone with your worry about Mattie. I think it's hardest at night, when it's dark and everyone is asleep. It's easy to go to the very darkest places. At those times (day or night) when you are feeling very scared, I hope it helps to know that there are so many people who are scared with you. We are all praying for Mattie to have the outcome of the young man in the video who climbed those mountains. Life is full of miracles, as that video proves. Mattie may be one of them."
July 28, 2009
Tuesday, July 28, 2009
Tuesday, July 28, 2009
Left: Michael, Mattie, and Abigail
The concert was a lot of fun. The music of ABBA was performed by a group that literally impersonated ABBA. Of course it did not sound exactly like ABBA, but it was pretty close, and definitely there was a great deal of energy in the audience. It is hard not to want to move your body and dance when you hear ABBA's music. I grew up listening to ABBA, and though that brings back good memories, the memories that will ALWAYS remain with me, will be that of the PICU. Mattie did more physical therapy in the PICU to ABBA than I can remember. In fact, I remember one day walking around the entire fifth floor of the hospital entertaining others, while Mattie was learning to walk. Brandon, Mattie's buddy, was with us, and we have converted him into an ABBA fan too! ABBA will always remind me of this time in our lives, the friendship of the HEM/ONC nurses, Linda, Meg (Linda's intern), Anna, and Brandon. It is funny how music can stir up emotions for a person. It is also ironic that I told Ann just this morning that nothing really brings me much happiness anymore. Though this statement is pretty accurate, I can say after tonight, that music still has a way of getting to me. Making me feel lighter, better, and happier. I have always felt this way about music and dance, they breath life within one's spirit, and for just that moment in time they can transport you to a simpler and peaceful place.
Quote of the day: “The greatest treasures are those invisible to the eye but found by the heart.” ~ Anonymous
Mattie and I finally fell asleep at 1am. I was so tired and wiped out from having a migraine, that I literally instantly fell into a deep sleep as soon as my head hit the pillow. But at 2am, I heard Mattie calling for me. I was actually disoriented, and it took me a while to realize he needed help going to the bathroom. However, after I helped him, I couldn't go back to sleep. My head was pounding, and for my readers who are migraine sufferers you know that such intense headaches can also bring about nausea. Needless to say, I did not get back to sleep until after 4am. When I woke up this morning, I felt like the walking wounded. To function was not only tiring but depressing. Depressing because my days are always the same. Playing, meeting Mattie's caregiving needs, and driving back and forth to the hospital. This is not only taxing on the body, but taxing on the spirit as well!
Mattie actually slept in this morning. Not only was he up several times during the night to use the bathroom, but he was also restless. I got up before Mattie because this is the only time during the day that I can get something done. During this time Ann called me. Ann always seems to know when I have hit the end of my rope, and we talked a while this morning about what can be done to lighten my daily load with Mattie. I am not sure what Peter and I did to deserve an amazing Team Mattie coordinator and friend like Ann, but in the midst of everything else we appear to be losing, we Thank God for this blessing.
Mattie had his appointment with Dr. Biel, his psychiatrist today. Dr. Biel and Mattie have a very good rapport, and Mattie actually looks forward to his sessions. Mattie's sessions are about 30 minutes, which gives me just enough time to eat something for lunch. But I constantly live my life running from one task or activity to another. Which anyone can manage for a month or two, but I have been at this for 12 months straight with no end in sight. After his therapy session, I gave Mattie some options of things to do, rather than returning home directly. However, Mattie wanted to go straight home without stopping anywhere.
Mattie and I spent the afternoon at home, playing. But at a certain point, I couldn't function. I was exhausted and still had a migraine. So I went to lie down for 30 minutes or so. Despite lying down, Mattie did not give me much peace. So it was a long afternoon to say the least. Peter came home early from work and we packed up and headed on the road to Wolftrap (a National Park for performing arts). Mattie appeared excited to hear the music of ABBA, but I have learned with Mattie, his moods are like the weather, they change very easily. We met Ann's family at Wolftrap, and we all had a wonderful picnic together, thanks to Ann's planning and generosity, and we sat outside and chatted. Mattie and Abigail were eager to continue the goldfish soup concoction they started when Mattie was a patient in the PICU. Some of you may recall the night in the PICU where Mattie and Abigail were exploring the properties of goldfish, cherries, and other objects when placed in water. The fun continued tonight, and Michael (Ann's son) also assisted with the project. Needless to say, by the time they finished, they created something that looked and SMELLED down right awful! We snapped some pictures of the fun taking place all around us this evening.
Left: Michael, Mattie, and Abigail
Right: Abigail and Michael brainstorming what else to throw in this goldfish soup concoction! I felt very sorry for the Ziploc!
Left: After the picnic, Mattie and Abigail, decided to kick back and throw their feet up on a very cozy foot rest, Michael. Michael was a good sport about all of this.
Right: Mattie, Vicki, and Abigail.
Left: A picture with all the kids! From left to right is Lexi (Katie's friend), Katie, Mattie, Michael, and Abigail.
The concert was a lot of fun. The music of ABBA was performed by a group that literally impersonated ABBA. Of course it did not sound exactly like ABBA, but it was pretty close, and definitely there was a great deal of energy in the audience. It is hard not to want to move your body and dance when you hear ABBA's music. I grew up listening to ABBA, and though that brings back good memories, the memories that will ALWAYS remain with me, will be that of the PICU. Mattie did more physical therapy in the PICU to ABBA than I can remember. In fact, I remember one day walking around the entire fifth floor of the hospital entertaining others, while Mattie was learning to walk. Brandon, Mattie's buddy, was with us, and we have converted him into an ABBA fan too! ABBA will always remind me of this time in our lives, the friendship of the HEM/ONC nurses, Linda, Meg (Linda's intern), Anna, and Brandon. It is funny how music can stir up emotions for a person. It is also ironic that I told Ann just this morning that nothing really brings me much happiness anymore. Though this statement is pretty accurate, I can say after tonight, that music still has a way of getting to me. Making me feel lighter, better, and happier. I have always felt this way about music and dance, they breath life within one's spirit, and for just that moment in time they can transport you to a simpler and peaceful place. Despite trying to enjoy the concert and the energy around me, Mattie's mood has a way of changing my perspective. At one point Mattie was crying and he wanted to leave, but I helped him pull out of it and he did stay until the end. However, in the car ride home, he told me he wasn't happy and wanted to leave the concert earlier. I must have let out with a huge sigh, and Mattie instantly knew I wasn't happy with his commentary. He then apologized because he was giving me a lecture about taking him to things he doesn't want to do. I corrected him and told him he agreed to do this, and that ABBA music means something to him as well. Even if it did not, which it does, I told him that sometimes as a member of a family he has to do things others want to do. These are life lessons that have been placed on hold for a year now, but coming back into reality and living as a family unit will require a great deal of adjustment on Mattie's behalf. I shouldn't let Mattie's moods ruin or cloud things for me, but unfortunately I am human and I can't help but get drawn into the drama he creates. Peter and I do correct the drama and insert more structure, but we are TIRED, which makes the multiple roles we need to serve in any given day very challenging.
I would like to end tonight's posting with a message from my friend, Charlie, and then I would like to tell you about a special 12-year-old named, Sammie, and share a video about her. Charlie wrote, "I continue to be amazed at the lack of social skills in people. I don't believe they intend to be mean or uncaring but they simply don't know what to do. They have the same reaction to a child in a wheelchair as many do to an accident on the side of the road; they rubberneck without realizing how hurtful that behavior can be. I like Emma's mom's solution, smile at them and see what happens. I think that turns you and Mattie into "real" people that they can respond to. I know you don't have a lot of emotional energy but if it stops a majority of the staring and you don't have to defend Mattie from the stares and his own interpretation of them, it might be worth it. It is an education process for the public. Your story about Mattie's soup made me smile; it reminded me of the story of "stone soup" although that had a more positive ending than making soup that tastes bad and getting fired as a result. I love Mattie's sense of humor and that is a tremendous strength that will help him weather the process of healing. I hope Tues goes well at the hospital and that you all enjoy the Abba concert on Tuesday night at Wolftrap."
I learned about Sammie, a 12-year-old girl with Osteosarcoma, from Kristi's caring bridge website. Kristi is a mom of a 15-year-old son, David, with Osteosarcoma. One night many months ago, I decided to visit Sammie's website. Sammie lives in California and has been fighting Osteosarcoma for three years now. Sammie has lived anything but a normal teenage life, and unfortunately despite her amazing efforts of heroism, the disease is taking over her body and she currently is going through hospice. Sammie's parents are watching their daughter dying before them, a little each day. When Mattie initially began treatments, I couldn't connect AT ALL to other Osteosarcoma families. Maybe because I couldn't accept the fact that this could possibly be my life. But as the year went by, I started to select certain caringbridge sites to follow. I literally only follow three, because I can only absorb so much sadness each day. None the less, Sammie and her mom, Chris, are amazing women to me. Chris shares her strength and courage with us on a regular basis. How do you say good-bye to your daughter? How do you give her the courage to accept death, and to allow her to talk about these frightening thoughts, and yet not show her that inside your heart is breaking without any idea how to live your life when she no longer can live hers? Chris explores all these questions. Yesterday I went onto Sammie's site and her Team Sammie developed a video about Sammie's life. The video is 14 minutes long, and I asked Chris if it was okay for me to post it on Mattie's site. Please take the time to see this extraordinary young lady, and hear about her life, and how she is educating others about this horrific disease. I also included a link to Sammie's website, in case you wanted to learn more about her. As always our deep thoughts and prayers go out to Sammie and her family. Team Mattie is an incredible network of people, and I encourage you to stop and reflect a minute on Sammie and all the other children out there with Osteosarcoma. Dear God give them and us your strength and courage to fight this disease, and in Sammie's case, please allow her the chance to die in dignity surrounded by those she loves.
Team Sammie Video
July 27, 2009
Monday, July 27, 2009
Monday, July 27, 2009
Mattie had breakfast, and we played intensely for hours. We played with Lincoln Logs, Legos (naturally), planes, cars, etc.... getting the picture?! At 2pm today, I had it. I needed to get out of my pajamas because it wasn't helping my mood in any way. Thank goodness for some new Scooby Doo movie that was on TV this afternoon, because it gave me a moment to take a shower, get dressed, and also give Mattie lunch. But by 4pm, I couldn't take being trapped at home another minute. So I encouraged Mattie to have a change of scenery. So he agreed to go for a walk. As many of you know, we purchased a new wheelchair for Mattie. I am in LOVE with this 14 pound chair, and I never knew I could love an inanimate object. It is so much easier to push and lift. Which is great, because lifting Mattie non-stop during the day is as much as I can handle. Mattie and I walked around for about an hour today. We walked to the Kennedy Center, saw the fountains, walked inside, and even visited the gift shop. I gave Mattie the camera today, and he wanted to snap a picture of one of the fountains at the Kennedy Center. So you are seeing the fountain from his vantage point. 
Quote of the day: "In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit." ~ Albert Schweitzer
Mattie woke up bright eyed and chipper today. He was raring to go and play at 8am. I unfortunately wasn't as perky. I am going on day three of a migraine headache, which is only exacerbated by a lack of sleep. Mattie wanted to play the board game Sorry this morning before even heading down for breakfast. I must have looked pretty bad in his eyes, because he had me lie in bed with him first and snuggle, in hopes that I would feel better. Very thoughtful, and I was touched by his concern, but what I truly need, five minutes isn't going to solve. We played Sorry together, and naturally I lost. I have perfected the art of losing over this year, and frankly now that I am trying to play fairly, I STILL lose. Which naturally brings a smile to Mattie's face.
Mattie had breakfast, and we played intensely for hours. We played with Lincoln Logs, Legos (naturally), planes, cars, etc.... getting the picture?! At 2pm today, I had it. I needed to get out of my pajamas because it wasn't helping my mood in any way. Thank goodness for some new Scooby Doo movie that was on TV this afternoon, because it gave me a moment to take a shower, get dressed, and also give Mattie lunch. But by 4pm, I couldn't take being trapped at home another minute. So I encouraged Mattie to have a change of scenery. So he agreed to go for a walk. As many of you know, we purchased a new wheelchair for Mattie. I am in LOVE with this 14 pound chair, and I never knew I could love an inanimate object. It is so much easier to push and lift. Which is great, because lifting Mattie non-stop during the day is as much as I can handle. Mattie and I walked around for about an hour today. We walked to the Kennedy Center, saw the fountains, walked inside, and even visited the gift shop. I gave Mattie the camera today, and he wanted to snap a picture of one of the fountains at the Kennedy Center. So you are seeing the fountain from his vantage point.However, along our trip, it never ceases to amaze me who is staring at Mattie when we are out in public. Though today, I am not sure who looked like they needed more help, Mattie or I. It was a toss up. None the less, the stares and looks are something that still bothers me, and I can't seem to move passed this. I think what also bothers me is that Mattie is cognizant of these stares as well, and will ask me if people are staring at him because he is "ugly." Each time I hear that word, "ugly," I feel the need to address it immediately.
We are a society that is too wrapped up with false outside appearances. We strive to be like what we see on magazine covers and on TV, but guess what? What we are seeing as we wait on line at the grocery store check out counter (with rows of magazines staring at us) are all illusions. Having lived in LA, and having the opportunity to see some of these folks without their make up on, without a team of professionals supporting them and air brushing their pictures, they look just like the rest of us. Well actually maybe worse. So our definition of beauty needs to be redefined, and it needs to become more holistic, taking into account what is most important, and that is what lies within the person. Of course societal pressures and norms are hard to explain to a seven year old, but none the less, we need to start demystifying these things for our children EARLY on, because more children in elementary school than ever before are having issues with body image.
On our way home, there was a massive accident in front of our complex between a car and a bicycle rider. There were fire engines, police cars, and an ambulance. Mattie was fascinated and we watched the rescue folks for at least 20 minutes. During this time, we chatted with people passing by, and one man, who I did not know, introduced himself to us, and started talking about ways to improve the safety of bicycle riders in the city. Mattie participated in this conversation, and actually had some good suggestions!
Along our walk, Mattie also collected acorns and rocks. He really enjoyed doing this, and was brainstorming what to do with these items when he got home. When he got home, Mattie decided to put the acorns (covered in mud naturally) and the rocks (also a mess) in a basin of water. He wasn't cleaning them, oh no! He was creating a soup, and guess who had to pretend to drink this soup? For the next two hours, he threw everything in this soup, and we made a whole play scenario around it. I was the disgruntled customer and he was the nasty chef working at a restaurant called "Cheap Eats." In the play scenario, Chef Mattie was gaining notoriety in the city, and other restaurants wanted to hire him. Or they did, until they spoke to me about his horrible cooking. We had many chuckles around this, and Mattie laughed so hard at my reactions to his soup, that he landed up getting the hiccups.
When Peter arrived home tonight, he too had to taste the soup. However, after that, Mattie seemed like he wanted to settle down and just watch a video. We want to thank my Cousin Donna for dinner tonight, and for supporting us from afar! Mattie appears to be dealing with another bout of nausea. He is back on Zofran (an anti-emetic), and I notice within 30 minutes of taking this medication, he seems to be able to eat alittle something. But I love when Mattie's doctors tell me this is unusual to be having nausea almost two months post-treatment. I can't explain it, but he does have nausea!
As we head into Tuesday, Mattie will visit Georgetown tomorrow for his appointment with Dr. Biel, his psychiatrist, and then will have his physical therapy appointment with Cathy, Anna's colleague. In the evening we are meeting up with Ann's family and taking Mattie to Wolftrap (A National Park for the Performing Arts) to hear the music of ABBA. I can't wait to see how Mattie reacts to hearing this music. ABBA has played a huge role in our therapy sessions in the PICU, and Linda even played ABBA on a CD for us as Mattie had his last set of PET scans and when Mattie headed off to have his lung surgery. The Pre-Op area may never be the same at Georgetown! Needless to say, I am not sure I will ever forget ABBA music for the rest of my life. It instantaneously takes me back to the PICU, watching Mattie learning to walk, and strolling the hallways with his buddy, Brandon!
I end tonight's posting with a message from my friend, Charlie, and then a video clip I received from Anne, a fellow SSSAS parent and Team Mattie supporter. Charlie wrote, "Vicki, I am glad you had some time to yourself today. Cooking breakfast, doing errands and laundry are all normal events and while they aren't "special" I think they are part of the building blocks to recreating a normal life. While Mattie's comfort zones are small (Lego store, Home Depot and Georgetown), not long ago, he was unwilling to go anywhere at all so this is something of an improvement. I know you are glad Ann's dad came through the surgery well and reading about her parents reunion after six days apart was very touching. Loving relationships continue to evolve and change just as the people who make them up do, but the connections remain intact even when the people are physically separated. We are however, meant to make physical connections as well as emotional ones, otherwise we tend to become isolated and depressed. I hope Mattie's improving health will allow all of you to reconnect with family and friends, and share meaningful times together."
Anne sent me this wonderful video clip today of Sean Swarner. Sean is the first cancer survivor to climb Mt. Everest. He went to college with Anne, and Anne has connected me with Sean this year. I have had the opportunity to e-mail back and forth with him. Sean has survived two different types of cancer, and his story is not only remarkable but heart warming. He makes you believe that anyone has a good chance at survival. The key is not to give up hope. This gets back to my mindset change that I am desperately working on as we move into the future. As Sean says, "It's about screaming hope at 29,000 feet."
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