Friday, August 28, 2009Tonight's featured Mattie creation is one of the boats he designed with Jocelyn in the Lombardi Clinic for a boat race against his good buddy, Brandon.
Quote of the day: "How beautiful a day can be when kindness touches it!" ~ George Elliston
Mattie had a hard time falling asleep, and did not land up going to bed until after 3am. Needless to say, he did not get up until 2pm today. Mattie was resting peacefully, and neither one of us wanted to disturb him. Peter and I took turns lying in bed with Mattie, because Mattie made it clear that our presence was needed.
I am happy to report that I was able to get Peter out of the house today. It was NOT any easy mission. Peter has been working intensely by day to play and entertain Mattie, and Mattie has really heavily relied on Peter. To get Peter out of the house today, was a three woman mission. Karen had suggested the idea of a massage to me, and I thought that was a very good idea for Peter. So I contacted my dear friend, Junko, and she planned the rest. Thank you Junko and Tad for spoiling Peter today by giving him the gift of a massage. He was reluctant to leave us at first, but we practically threw him out of the house, and the fact that you made an appointment for him, inspired him to really go! Thank you, because the tension and stress Peter and I live with on a daily and hourly basis is toxic!
Mattie and I watched videos today, and also played together on his Nintendo DS player. I want to thank Linda, Mattie's childlife specialist, for giving us a second DS player, so that Mattie and I could play against each other. However, while Peter was gone today, Mattie asked that I play with him, which was a major problem since I am not the technologically savvy person in the household. I couldn't figure out how to sync up the players together, so I paged Linda at the hospital. Linda walked me through the set up process, and Mattie and I played for hours. Thanks Linda! Karen and my parents were Mattie's cheering section, since we were doing a car race. But as I told my readers many times, I have perfected the art of LOSING big time this year. Mattie seems to get a kick out of the fact that I always lose, and on the DS, losing for me usually means my car lands sunk in the water, hitting a guard rail, or stuck in sand.
The days at home are LONG! In addition, Karen astutely pointed out that my days are ALL the same. Indeed they are. It involves meeting Mattie's needs, not leaving the house, and sneaking food in one's mouth along the sidelines, because Mattie doesn't like the smell, sound, or mention of food around him! This afternoon, Mattie, my mom, and Karen played with all the growing animal capsules Mattie has collected this year. We gave Mattie a tub of warm water, and all three of them were tossing capsules in the water, and trying to figure out what animal was going to emerge from each capsule. I snapped some pictures of this event today. I call it an event, because anything that brings Mattie off the couch and engaged in something is an EVENT of grand proportion.
Left: Mattie, my mom, and Karen.
Right: Mattie classifying the animals that emerged out of the capsules that melted away in the water.
We would like to thank the Kelliher family for a lovely dinner and cheesecakes. We truly appreciate your support. After dinner, I went to visit Ann, who was helping her parents at their assisted living facility. We hadn't seen each other in over a week, and we had a lot to catch up on. Visiting Ann's parents this week, and Ann tonight, have enabled me to leave the house and to actually talk to an adult. This has actually been very therapeutic this week, because I want you to understand that our daily existence at home is bleak. Mattie needs us by his side constantly, he has many anxieties, that are only managed by our immediate presence. In addition, Mattie doesn't like to hear people talking, so there is a lot of intentional silence in our house, and after a full day of this, it gets to me. Add on top of the fact that we are exhausted physically and mentally, and that Mattie is denying us the ability to eat meals, and this produces a less than bearable existence. I feel particularly fortunate to have Ann in my life, who has been there every step of the way in this journey with Peter and I, and helps me normalize my reactions to Mattie's terminal diagnosis. I feel particularly confused by my reaction to Mattie's illness, because normally I am the type of person who cries over a hallmark commercial. But finding out about Mattie's terminal status, has left me numb and in shock, and I though I hear and experience sad things around me, I remain strong and together. Perhaps this is a mechanism I have adopted in order to survive this nightmare right now, so that I can mobilize forces and energy to help Mattie manage pain. None the less, when ever I experience a change in how I think or process things, I do take notice.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Thursday sounds like it was a very full day. I am sure it was good to see the nurses and technicians at Georgetown who have become part of an extended "family" for you. It definitely sounds like you made the right decision with the sedation for the scan; it was definitely a great idea to do all the necessary care for Mattie while he was under sedation. These normal events have become very traumatic for him and while I am sure he feels better now that they are completed, getting them done would have been almost impossible. As the staff at Georgetown noted, you are definitely a trained caretaker whose skills are a match for the staff in some area. I've met a lot of parents who refused to be trained in any aspect of their child's care; you on the other hand have gone well above and beyond and Mattie's health and well being show that. We will all continue to pray that he can take the necessary medications that will make his time more comfortable."
The second message is from our favorite CT tech at Georgetown, also known as Mattie's "big brother." Jey wrote, "I haven't sent you any emails because in my heart I wanted you to be able to spend as much time with Mattie as you possibly could without any interruptions from me. As I read the blog I couldn't help but to cry as I am doing now because I know in my heart that my little brother isn't doing very well and to see the pictures hurt that much more. I truly wish I could do something to take all of this away. I am truly heartbroken from what is happening to Mattie and to my extended family. I know that GOD says that the issue of death is not ours to worry about but I must admit that I am having an extremely hard time not concerning myself with Mattie's condition and as it gets worse it makes it even harder. I know that my hurt doesn't compare to what you are experiencing and I am so sorry for what is happening to my family I LOVE YOU GUYS with every breath I breathe. I am not sure if I will see you all again and If I don't just know that no matter where I go in life I will do everything I can to never forget you. I know that as people get older in life they tend to forget things but I am going to do everything I can not to ever forget you. I am going to end this by saying I hope to see you all soon."
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