Quote of the day: "Christmas is the keeping-place for memories of our innocence." ~ Joan Mills
I had the time today to search for a quote that captured the mood in our household today. To me this quote hits the sentiment I am feeling right on the head. Somehow all three of us (Mattie, Peter, and I) realize on some level that it is the end of our innocence. I think what can make Christmas a particularly depressing time in general (even if I factored out living with a son with a life threatening illness) is we have memories and expectations of what Christmas is supposed to be like. I remember Christmas very fondly as a child. I was fortunate to live in a town that was close in proximity to my mother and father's family. Things just seemed simplier then, it could be my naiveté of being a child who seemed to not have a care in the world, but I remember being surrounded by family, fun, and lightness. So far removed from my reality today. Though I also feel that the mood in our home today is so difficult that we could be surrounded by a football field of happy people and we would still feel pretty much the same.
Mattie spent wednesday night upstairs in his bedroom. He refused to sleep in our living room and in his hospital bed. Good in theory, but he still has trouble moving around. Now to top it off, he not only wanted to sleep in his room, but he wanted Peter to set up his huge tent in Mattie's room, and he wanted to sleep in the tent with Peter. Peter was a good soul and accomodated this request. Peter is better than I am, because after a long day, setting up a tent that is meant to be set up outside with stakes/poles, would be so low on my 'to do' list. Mattie waited patiently while Peter figured this out, and once the tent was set up, I set up Mattie's hospital mattress inside the tent, helped him in the tent, and then hooked him up to his IV fluids. While Peter was locating the movie Wall-E for Mattie to watch, I was rubbing Mattie's head, and he actually fell asleep and never saw the movie. Mattie was out by 9pm.
At 6am, Mattie was up and wanted to know if Santa came and delivered him presents. So he headed downstairs and Santa did not disappoint. I took a couple of pictures of Mattie opening presents, but I could quickly see that Mattie was moody and not happy.
He shut down from talking for many parts of today. In fact, Mattie was going to have two visitors today, Marilyn (one of his preschool teachers from RCC) and Kathie (his occupational therapist), but he refused all company. This is certainly understandable considering all the people that freely come and go in his hospital room 24/7, but I can tell you as a parent, this is very isolating and makes you feel helpless and at times hopeless. In between his moodiness, Mattie reported to Peter and I that he sees things, frightening things while he is awake. It can come on all of a sudden, and he doesn't know how to describe it, but to me, who is more familiar with working with adults rather than children, I would call it a child version of a flashback. Mattie is reliving the trauma he is experiencing in the hospital. It is very upsetting to hear this coming out of the mouth of your child, regardless of how understandable it is. Fortunately I feel like we are addressing this medical trauma with medication and therapy and in time I hope this too gets better. I believe that Mattie's emotional state is greatly impacting his physical status and his unwillingness to reclaim his body.As we started unpacking what caused Mattie's funk today, I began to realize he was disappointed with his gifts. Mind you he had plenty of gifts to open, most of which he requested, but these things did not make him happy. I am the first one to agree that things can't make you happy, but the whole Christmas gift experience was seemingly blah for Mattie. I think Mattie has gotten so used to receiving gifts on a weekly basis since August, that Christmas wasn't special or anything different from every other day since he has been sick. In addition, Mattie had his mind set on a huge toy car, the kind that you get into and drive. Usually I would say no way to such a request, but when Mattie was wrapped up like a mummy in the hospital and I wanted him to start doing physical therapy, I promised him if he worked with Anna and really worked on walking, we would consider such a large purchase. Well in his mind he feels like he is walking, and he was looking for this huge toy car today after opening up his gifts. He was disappointed in me and of course that weighed heavy on my mind. Mattie and I feed off of each other, and his funk and moodiness did not help my mood in any stretch of the imagination. Poor Peter had both of us to contend with.
We tried to engage Mattie in building, trains, puzzles, books and other things, but he wasn't interested in anything. It made for a very challenging and tiring day. I wanted to introduce Mattie to "Miracle on 34th Street," a movie that I always loved. Mattie tuned in and out of it, but mostly out of it. At around noon, Marilyn (from RCC), dropped off a lovely chinese lunch for us. Marilyn also made a lovely bread for us and shared with me her special chocolate supply. I feel honored. Mattie loved the Wall-E invisible ink activity book and that engaged him for a little bit, which was a first for the day. While Peter was carrying Marilyn's things into our home, the big Scooby Doo balloon that Marilyn wanted Mattie to have flew away. Thank God Mattie did not see this because that would have been a major meltdown. Peter felt terrible, but I told him not to worry about it, since this could have happened to anyone. Mattie also opened up several gifts today that came through the mail.
We want to thank Kathryn (a SSSAS upper school mom) for the tree that lights up and sparkle foam. Kathryn also gave me some special gifts such as a book entitled, "Gifts from the Sea," and a handmade piece of jewelry made of spectacular red stones that has a lovely heart clasp. Kathryn says the bracelet should remind me of all of those out there that love me. Thank you for such special gifts and all the things you brought back for us from your magical trip to Italy. Mattie received some great dot to dot books, and a look and find book from Brian Boru (our feline friend). Thanks Brian! We want to thank the Coker family for the great Green Monster/Wally books. A must for any Red Sox fan! Thank you for thinking of Mattie! We thank the Torem family for the game, Hopper, Jr. I look forward to playing this with Mattie.
As we headed into the evening, Liza M. (a SSSAS upper school mom) came by to drop off dinner to us. Liza is a marvelous and creative cook, and you wouldn't believe what she cooked for us. I want to share the menu with you because I think a lot of love was put into the making of this food. The menu consisted of: baked brie (with cranberries and brown sugar), tapenade in filo shells, Filet of Beef, roasted potatoes, string beans, zucchini bites, mixed greens with berries, Hannah's (a special family recipe) pound cake (in the shape of a Christmas tree), and assorted cookies and fudge! Quite a menu no?! Liza also gave us all Christmas gifts. Thank you for the "I believe" soaps. What a perfect sentiment. Peter loves his baseball trivia calendar (a great gift for such a baseball fan!) and I look forward to playing dog bingo with Mattie.
When I went downstairs to meet Liza, Jessica who was working at the front desk tonight, handed me more presents that were delivered for Mattie. Peter and I felt bad that Mazie and Jessica had to work our front desk on Christmas, so we put together Christmas bags of goodies for both of them! When I arrived back home, I told Mattie that more gifts arrived. They were from the Putnam family (friends of ours from RCC). Grace you out did yourself. We loved reading the "Night Before Christmas" pop up book and the elf hats, reindeer head band, and rudolf noses were a major hit. I took pictures of Mattie and Peter wearing these fun things. Mattie then had the idea that he would be rudolf the red nosed reindeer and Peter would be Santa. It was great to see Mattie smile and animated for a few minutes today.
Grace also gave me a beautiful guardian angel pin. It is beautiful and will be coming with me to the hospital! We also look forward to listening to the wonderful CDs you sent us! Thank you for trying to help us make this day special.
Peter and I are wiped out today after trying to entertain Mattie, and also deal with his non stop whinning and moodiness. I am thankful that Peter was home today, because trying to manage this alone would have been over the top. I hope that tomorrow is a better day!
As I sign off tonight, I hope our readers who celebrate Christmas had a wonderful and joyful day with your family. Appreciate every good and healthy moment, I know I took all those times for granted before Mattie's illness! Though today was what I would call a depressing day, and that is putting it nicely, I am very aware of how lucky we are to have all of you out there supporting us. To all of you, I send you this quote! Merry Christmas!
"The joy of brightening other lives, bearing each others' burdens, easing other's loads and supplanting empty hearts and lives with generous gifts becomes for us the magic of Christmas." ~ W. C. Jones
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