Mattie woke up before all of us today. In fact, he managed to slide out of bed without assistance, and came over to my side and tugged at me until I woke up. I did not understand why he was up so early. But after he woke Peter up as well, Peter clued me in that he promised to take Mattie Christmas light shopping at Target today. Apparently Mattie did not forget this promise from last night, and was VERY motivated to check out lights. In a way, it was a glorious feeling to have a quiet moment this morning while getting dressed without juggling 20 other things in the background. When Mattie came back from Target, he couldn't wait to show me his purchases. He picked out a Scooby Doo Christmas light, and felt that would be a good addition to the growing Christmas light display that Peter and Mattie assemble in our complex each Christmas. When I tell you that these guys light up our area with lights, that would be an understatement. If you ever watched the TV show, Home Improvement, then when I tell that Peter's display rivals Tim the Toolman Taylor's, I am not kidding. Mattie is very much looking forward to decorating this year. In addition to this Scooby Doo purchase, Mattie also bought me a gift. He knows how much I love lighthouses, and he bought me a beautiful Christmas lighthouse that actually lights up. I took two pictures of it, so you can grasp what it looks like. I love the picture I took of the lighthouse in the dark, because you can see Mattie's silhouette in the background staring at the glow. There is something magical about lights!
Later in the morning, Mattie had a playdate with his buddies Campbell and Livi. When Mattie got to Campbell's house, he started the playdate slowly and acted a little shy, but that did not last long, because Campbell proceeded to ask Mattie what he wanted to do, and the next thing I knew, all three kids were in the backyard playing with straw and leaves. Mattie LOVES leaves! Thank you Christine and James for taking care of Mattie for most of the afternoon, so that I could have some quiet time. While Mattie was having fun, eating pizza, and watching videos, Peter was home building a ramp onto our outside deck in preparation for Mattie coming home from the hospital in a wheelchair. Though this sounds like a chore, and it is, I know Peter enjoyed working outside in the fresh air, and building something. One of Peter's many great skills! I on the other hand spent these several hours by going out to lunch by myself. Prior to Mattie's illness this wouldn't be a way I would normally spend my free time, but spending time alone right now is a gift. Since I rarely have a minute by myself to just breathe. At lunch, I brought a stack of research articles I have been trying to read for the past two weeks. These articles relate to Mattie's chemotherapy options. Peter and I are tired of getting second hand information, so thanks to GW's databases, we have been searching and accumulating research articles as it relates to some of the major questions we are trying to answer. However, whenever I try to read them, I am too tired. Today was my moment, and I am pleased to say mission accomplished. However, while out eating and reading, I couldn't help but listen to other conversations around me. Not like I was trying to do this, it just happens. In any case, behind me were two women eating with each other and chatting about life. Their conversation caught my attention when one of them said to the other that she was okay if she had to die tomorrow. In fact, she said that she wasn't afraid to die, just of the process. Now I probably should tell you that both of these women were fine, not ill, and were having or attempting to have an existential dialogue. However, the conversation lost me when this woman continued on by saying that she hopes when she dies people will say that she was a special person, and that she made a difference in their lives. She went on to tell her friend about a recent funeral she attended where in the eulogy people were saying glowing remarks about the deceased. She said she hoped that this would happen for her as well. I don't know about you, but since I have now been forced to deal with the potential risk of losing my son, this whole conversation and the tone of the message truly irritated me. It irritated me because she is talking about life in such a matter of fact way. Is she really ready to die tomorrow? I think she can say this because she knows she is not, in addition, her reasoning for dying and what she would get out of it disturbed me even further. What could have been a meaningful dialogue between friends, became something self serving and insensitive.
When I arrived back at Campbell's house to pick Mattie up, he wasn't ready to leave. So Christine and I had tea together while the kids continued their play. I was so bothered by this conversation I over heard at the restaurant, that I shared it with Christine. Thanks Christine for a lovely afternoon, and for the opportunity to reconnect. I miss those after school moments!
My parents wanted to take all of us out to dinner tonight, but when Mattie got home he started to cry and he did not want to go out. What he really wanted to do was help Peter complete the building of the ramp. So Peter accomodated Mattie, and stayed home with him and they enjoyed the pizza JJ brought to them! Thanks JJ, we all need such a helpful puppy in our lives. My parents and I went out to dinner and by the time we got home the ramp was completed. Mattie was very proud of his accomplishment. It has been a weekend of building and creating for Mattie. Below is a picture of the ramp.
Also Mattie had an evening of building swings and car ramps out of plastic tinkertoys. I am happy Peter and Mattie had this time together to build and play.
I received a lovely e-mail from my a former student of mine today. Thank you Mary. Mary wrote, "You mentioned generosity, Your generosity in letting us into your world, as you go through this life altering event, cannot be overestimated too. You are reminding us daily about what is really important. Thanks." Thank you Mary for this lovely message. One thing is for certain, when such an illness hits your life, you re-evaluate everything, and I have found I have become even more bold in my statements and feelings (if that is possible), because what on earth do I have to lose? Nothing else seems to matter at this point in time.
On the electronic front, we want to thank Brian Boru, Karen, Kim, Lorraine, and Susan for your lovely e-cards. They cheered up our day! As we head into monday, I can't help but feel a sense of nervousness about wednesday. It is hard to describe this feeling, but it seems like yesterday we were released from the hospital and now seconds later we are heading right back. I think we spend more time in the hospital than at home. Each time we head off to the hospital, I wonder what on earth gets Mattie to return there? For the most part he is compliant and doesn't question why he needs to keep going back. That to me alone is remarkable, because if I were his age I would be kicking and screaming all the way there! I could come up with several theories for this mature behavior, but I think having "his ladies" there is a great motivator!
1 comment:
Hi, Folks!
I'm glad Mattie is enjoying himself. You might consider joining the ACOR listserve for osteosarcoma. There are two ladies on this list who keep abreast of any scientific articles/news items about osteo and post links to them along with a short abstract of the contents. You can just ask to be emailed what interests you and they'll do it saving you the work of searching for yourself. There are also people who have been through every possible treatment option (including those available only in other countries) who can give you info too. The down side is that there are personal stories, updates, etc.., from lots of people including families with children who are have difficult times/very ill/etc.., and it can be emotionally difficult at times. Some people chose to have a family member who is not a parent (aunt, etc..,) participate in the list and then funnel relevant info to them rather than reading the list themselves. If you are interested, google ACOR and there will be a link for signing up. You might also want to check out the Liddy Shriver Initiative page which is a charity that raises money for osteo research. There is a lot of good info about trials and such on that site.
Lauren
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