Message of the day: (Thanks Don, my father-in-law): "As to attitude, the power of positive-thinking can be turned down by fatigue. The important thing is that it not be turned off."
Mattie had another wild night. At 2am, he was up screaming hysterically. He wanted to go to the bathroom, but refused to use a bed pan. We attempted to reason with him and even offered to carry him upstairs to our bathroom. He refused all options. With each option we presented him, his frustration grew. It was impossible to rationalize with him (as it is with any kid who is having a tandrum), and this only continued to further stress Peter and I out. It was a 90 minute ordeal, where we remained firm about his options. The interesting part about all of this is it is very, very hard to remain calm and to talk softly when your child is screaming and yelling at you. It is just a natural human instinct to yell back. Peter and I are getting better at staying calm during these moments, but it isn't easy especially when you are taxed out on so many levels. Needless to say, at 3:30am, I was so upset with what transpired, and I sent an e-mail to our Georgetown Case Manager asking to make sure Mattie received a commode today. There is one on backorder for Mattie through our home medical supply company, but that doesn't help us NOW. As always, Catherine, came through for us today, and Mattie got a commode.
Mattie had two visitors today. One was Dan, Mattie's in home physical therapist. Dan dealt with Mattie well, despite Mattie completely ignoring him. Mattie refused to even make eye contact with Dan. I think his interaction with Dan today was so taxing for Mattie that he slept for several hours today. Dan plans on coming back on wednesday to start working with Mattie. God help us. But more importantly God help Dan! When Mattie makes up his mind about someone it is hard to change that perspective. Later in the afternoon, we had our first visit from our in home nurse, Sandra. When Sandra called me today, I gave her a hard time. She was talking to me about changing Mattie's surgerical dressings and so forth. I practically snapped at her and told her she wasn't touching Mattie's dressings. When I met Sandra, I realized she was just what I needed today. She is down to earth, refreshing, real, able to handle the ugly side of cancer and its emotional ramifications, and she had good and practical solutions to things like constipation and bed sores. Apparently pain medications can make you extremely constipated. So Sandra suggested adding Karo syrup to Mattie's diet. The irony is, I remember my grandmother using this remedy on me as a child. We will see if it works, but Mattie was more than happy to take a "non" medicine to help himself. He couldn't get over the fact that you can find karo syrup in the grocery store, and yet it can help you feel better! In addition, Sandra had great points about Mattie's stage I ulcer he has on his tail bone. Apparently when such an ulcer forms, it means that the muscle under the skin has died off, and this small part of muscle will never be replaced. When Mattie heard this, he was motivated to move around in his chair to prevent more muscle from being affected. Sandra had great ideas today, but she also made me laugh.
Sandra understands the pressures Peter and I are under. She told me today that anyone who is going to judge me for my decisions or has the need to correct me during such a challenging time should be discounted. She says no one is walking in my shoes, and no one knows Mattie better than Peter and I. She also told me to just say 'WTF' when people say things that disturb me. I looked at her because I had no idea what WTF stood for. It translates into What The F (a four letter explicative). I am normally not a person who curses, however, when she told me this, I started laughing. I laughed because sometimes people do say things to me that really leave me flabbergasted. Mind you I am not referring to all of you reading this blog. You all walk this path with me daily and get it. But there are others who feel the need to give me their two cents. Two cents which at times can be hurtful, even if well intentioned. I think what gets me truly frustrated is when I try to explain my position and my feelings to others, and I see that my message isn't understood or misconstrued. Maybe it is the educator in me, but when I can't get my point across I feel like I have failed. As many of you know last night I was very upset and my blog reflected that. I do not take back my feelings or what I stated, yes they are raw emotions but natural and very real. Peter and I will never give up our steadfast fight for Mattie, but we are only human and as such we too get depressed, we lose hope, direction, and our attitudes fail us now and then. I think even the strongest of people are entitled to lose it now and then. But I assure you in times like these, we hold Mattie's hand, and look at his smile, and it becomes clear what we are fighting for. I told Sandra that she missed her calling in life. She is a nurse and therapist all wrapped up in one!
Earlier in the day, when I was walking Dan (Mattie's PT) out to his car, I bumped into Ellen (Charlotte's mom). She left Mattie a special Saints package at our doorstep. Thanks Ellen for making a special trip to DC! We want to thank the SSSAS Saints 2008 football team for the wonderful poster of their season. The beautiful part about this, is Mattie's picture with the team is featured on this poster. Mattie was so thrilled to see himself. We want to thank the team for the DVD too of the season which celebrates the seniors. I know you can't see the detail in the poster, but Mattie's picture with the team is located right next to where it says, "S Go Saints!!"
Today, we received a lovely e-mail from Joan Holden, SSSAS' head of school. Joan wrote, "Dear Vicki and Pete, I wish there was a phrase or saying I could provide you to help you through these tough times. We are all praying for you. I do not know how you manage to always get a picture of Mattie smiling. We are all here for you. I have to believe God’s healing hand is upon Mattie." Thank you Joan and the entire SSSAS community for your constant support of Mattie and our family.I received this e-mail from our family friend, Phyllis. Phyllis wrote, "Lastly, I know how diligent you are to find the positive or the humor in a downright crappy circumstance so I couldn't help but find a chuckle of my own. As you described how Mattie first told you that he was tired of you and he'd rather have one of the staff as his mom, I thought that that must have been like a kick in the gut and a wound to the soul even though if you strained a bit you could, through intellect, rationalize the situation. Then for him to do a one-eighty and insist upon your constant presence and undivided attention must be mundo bizarro. All I could think was, "Man, Vicki must feel like she's stumbled into one of those tawdry soap operas where she's playing the helpless ingénue with the whacked out boyfriend who's telling her he never wants to see her again one minute and then saying he can't live his life without her the next." Hmmm. Well, maybe that doesn't sound so funny as I'm typing it out but trust me, the visual in my head was quite humorous..." I think finding the humor in any situation is a wonderful coping mechanism, and we try to do this on a daily basis. If you can't laugh about some of this stuff, we would be crying all the time.
This evening, I received an e-mail from my friend Sara. Sara wrote, "I wanted to give you a little bit of good news. A few weeks ago Michael (her husband) and I approached his company--ADG Creative--to ask if they would make a contribution to the Mattie Fund, to aid in Mattie's treatment expenses. They said they would be honored to match contributions that individuals in the company made. Michael shared Mattie's story with the employees. Keeping in mind that this is a fairly small company, everyone donated. The company matched this contribution and all of it will be going to the Mattie Fund. So please know, that you all are loved and embraced. We are sending you love, positive thoughts, and our mental and physical energy to you so you can stay strong and help each other work through this."
We had a lovely dinner tonight thanks to the Bires family. Thank you also for the yogurts and tasty treats. Mattie ate the entire blueberry loaf slice! Mattie received the movie, Polar Express, from my colleague Jay today. Mattie loved it and helped settle him down this evening.
On the electronic front, we want to thank Karen, Ms. Pollak, Brian Boru, and Cousin Rosalinda for your lovely e-cards. Also we thank Goli and John for the great Mickey Mouse christmas lights you sent Mattie. He can't wait to add them to the spectacular holiday display this year. Tomorrow Peter and I are headed into Georgetown Hospital for a meeting with Mattie's doctors to discuss treatment opinions. There was a tumor board meeting at the hospital today to discuss Mattie's case, and Dr. Shad, the Chief of the oncology practice called me tonight to let me know that they received several opinions about chemo options for Mattie from around the country and even parts of the world.
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