Quote of the day: "Faith is taking the first step even when you don't see the whole staircase." ~Martin Luther King
Wednesday night Mattie fell asleep at 10pm. I couldn't believe it. This was an absolute first, but it spoke to how tired Mattie really is. I was afraid though that he would wake up at some point during the night, which would make sense since he receives 1000ml of IV fluids over night, but he never woke up. Instead I woke him up at 7am to use the bathroom, and then he went back to sleep until I woke him up after 11am. It took him a while to fully wake up. Mattie's uncle, aunt, and cousins were visiting from Boston. They wanted to come and visit with him today before returning home, but Mattie was closed off to this idea. So I would say Mattie is experiencing signs of depression again. He is remote, closed off to people, isn't eating, and stares off into space. It is actually a very devastating picture to watch, and in some respects the mental health components of cancer are almost as bad at the physical disease itself. Remember I see this picture for many hours a day, and live it. By the end of today, I had absorbed so much of Mattie's attitude and mood, that I too felt depressed.
At around noon today, Dan (the college student from Georgetown University) came over to spend a couple of hours with Mattie. Mattie said he was okay with this, but I have learned today he will say he is okay one minute and then the reality comes out hours later. Fortunately when I left Mattie, I headed first to the pharmacy to pick up his medications (if I waited later in the day, it would have never happened). As it turns out I am livid because the pharmacy gave me the wrong dosage of Mattie's anxiety medication. They actually doubled the concentration of what he is supposed to take, and I am so happy that I always check before administering any medication. So I had to contact Mattie's doctor and of course find my way back to the pharmacy to address this issue.
I went to visit Ann today and we had lunch together at her house and we discussed Katie's and Abigail's dance recital on Saturday. Her daughters are performing on Saturday and I have offered to help her get the girls ready. It is funny, doing up hair and make up was something I always did while growing up, but of course raising a boy, I don't have these same opportunities any more. So in a way, I am looking forward to seeing and feeling this excitement again. However, while at Ann's house, Dan called me. When I picked up the phone, Mattie was on the other end, and in a very pathetic voice asked me to come home. He missed me, and I could tell he was in a funk. I had Mattie put Dan back on the phone because I just wanted to make sure there was not an emergency. Needless to say, I can move pretty quickly by car from Ann's house back to mine.
When I got back home, Mattie was sitting on the floor face down. I could tell he was experiencing pain, so before we said good-bye to Dan, I administered pain medication to Mattie. I then prepared him some food and sat with him. Because of the funk he was in, I tried to assess if he really wanted to go to the baseball game tonight. He claimed that he did! So when Peter got home we headed to National's Stadium.
Before I tell you about this disaster, I do want to acknowledge the SIX acts of kindness we experienced tonight. The first act is that the Ferris family gave us eight tickets to the baseball game tonight. Thank you Tad and Junko for your generosity, for your incredible support, and for giving us this opportunity! I had a great time chatting with Tad tonight who was at the game with his cousins. The second act came from the Keefe family. Last night the Keefe's gave us tickets to the game, and when Peter contacted the Keefe's today to thank them, one thing led to another and Peter Keefe arranged for us to get disabled parking comped tonight, and also arranged for our tickets to be switched to a section that would accommodate Mattie's wheelchair. We thank the Keefe's yet again for their amazing support! The third act was when we arrived at the park, a young fellow came up to Mattie and gave him a baseball he caught tonight during batting practice. I thought that was very thoughtful! The fourth act of kindness occurred at the Stadium's team shop. An employee came up to Mattie and gave him a bobble head pin. The fifth act of kindness was that we were greeted by a man dressed in Army attire. He stopped Mattie and gave him an Army shirt and cap that said, "Army Strong." He told Mattie that he had to STAY ARMY STRONG to fight his illness. I was deeply touched, and he shook my hand and Peter's. I almost felt like on some level he really got what we are going through. The sixth act of kindness came from Ann's daughter, Abigail. Despite Mattie's foul mood, and being despondent, she did not give up. She stayed by Mattie's side, even when Mattie insisted on being pushed around the park during the game. Mattie did not want to watch the game at all, but instead they went to the Build a Bear store at the park and came back with a stuffed dog named Copper. I am not sure what I was more upset about. The fact that Mattie claimed to want to go to the game, but REALLY did not, or that he practically bought every item at the park. Items that I felt he did not need. I realize in the grand scheme of things this is the least of my problems, but we are packed to the gills at home, and if these items brought him joy well then great, but like all material things they only bring short term happiness. Mattie wasn't in the picture mood, but I did snap a few that I wanted to share with you.
Left: Vicki, Mattie, and Peter as we entered the ball park.
Right: I was fascinated by this owl that this man had on his arm, so I couldn't help myself, I had to capture a picture of this amazing bird.
Left: A picture of Copper, the animal Mattie made today at Build a Bear.
Right: I tried to capture the intensity of the stadium. It was FILLED to capacity! I almost felt like I was in Boston, since I was surrounded by Red Sox fans.
By 8pm, Mattie had it. He wanted to go home. He seemed miserable and unhappy to be at the ballpark. I was saddened for Peter, because this was supposed to be his night out to watch something he loves. I should have never let Mattie talk me into letting him go, because even under the best of circumstance (pre-cancer) he never liked going to a baseball game. As we were leaving the ballpark, I landed up screaming at Peter. Not because I was mad at him, but I was frustrated. Not that Peter has a break during the day because he is working. But at least he gets out of the house and gets a break from ILLNESS and Mattie's intense moods. With that said, I do acknowledge that in the 11 months I have spent in the PICU, I have yet to see a more involved dad than Peter. Peter spends his days working, and his nights working with Mattie. There is no break for him either, I realize, but clearly Peter and I have different stresses, and I must admit at times I am insensitive to them.
When we got home tonight, Mattie and I were both in a bad place. However, I gave him more pain medication and then we helped him relax on the couch. I made dinner for Peter and I and as I head into Friday, a day where I was supposed to go and get a hair cut and my nails done, I am in a panic that Mattie won't make it without me. This creates a level of anxiety I could do without. But what other alternative do I have? I sometimes need a break, and he needs to start letting others back in his life.
As I looked around the Stadium tonight and saw healthy children running around, I wanted to internally scream. In addition, my running joke with Peter is I want a hand counter. If someone has one for me to borrow, please give it to Ann. I plan on doing my own informal survey of how many people look at Mattie while we are outside in public. I am developing the survey questions in my head, and it should produce some interesting informal data. I am SO sick of the stares and looks. Like what, I brought on the cancer?! I know that others with cancer can really relate to what I am saying, and I will be curious if my counter clicks decrease in number once Mattie gets his hair and coloring back in his face! The question is what sets off people's level of discomfort (or need to stare), looking at cancer or physical disability or BOTH? Speaking of also being incensed, I was listening to the radio today (something I no longer do when I am with Mattie, so today was a luxury), and the hosts were raffling off Rascal Flatts tickets to benefit St. Jude's Children's hospital. As listeners were calling in and bidding on the tickets, I found it fascinating the justification for why they were bidding over $3000 for these tickets. I heard every possible reason, except the one that really mattered from my perspective, which was to support children and their families dealing with catastrophic illnesses. I wanted to call in, but I figured I had better fish to fry and if I wasn't living Mattie's illness, MAYBE I too would have provided the same justifications that the listeners used.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "When I read the blog I sometimes wonder if life will ever return to normal for you even in the little things. Just reading about what you have to accomplish in a day makes me exhausted, how much more so when you do it day in and day out, starting out sleep deprived and finishing in the wee hours of the morning because that's the schedule Mattie is currently on. Now that you are home I hope you can start to shift Mattie toward more normal hours and that as he feels better he will be more open to visits so that you and he don't remain so isolated from friends and family. I was sorry to read that Mattie was not open to visiting the carnival Wednesday as it sounded like a lot of fun but I am glad that you got out to enjoy some fresh air and company even if only for a little while. I really hope that you can find your way into some sort of routine so that both you and Peter can get some much needed rest; you both amaze me with your ability to function and do it all (mentor, work, parent, advocate) under the most impossible circumstances."
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