Wednesday, August 26, 2009The Mattie creation tonight features on canvas his interpretation of a rocket ship! Mattie has been very prolific with his art in clinic this year. He seemed to really develop a love for painting.
Quote of the day: "The whole world is a very narrow bridge and the essence of life is not to be afraid." ~ Rabbi Nachman of Bratzlav
Mattie got into bed last night and watched a movie and fell asleep. However, Peter and I were up until 3am. It seems this is the only time of day we can actually talk about things and plan for the next day. It is a sad commentary, but the reality when you are dealing with a young child who has cancer and is also dying.
Mattie slept better last night, because he is in my room and sleeping in our big bed. I have found that if he sleeps right next to me, he doesn't have nightmares as often, because I can hold him and instantly calm him down. Needless to say, he had a peaceful sleep last night, and slept almost on top of me until 1pm.
Mattie did not need oxygen today either, which is wonderful! However, he continues to be weak, and is vomiting. He plays, but his play is different now. It is more like play through observation, because he doesn't seem to have the energy to participate. Mattie was very focused on Peter today. He wouldn't give Peter a break for half a second. Mattie wants Peter by day and me by night. It is a hard dynamic, and his level of insistence, demands, and agitation can be almost overwhelming at times. Mattie played the Captain Mattie game today again with my parents, Peter, and Karen. However, what continues to plague me is that Mattie refuses to get off the couch all day. He will either watch videos or watch us try to engage him in play. He rarely if ever moves around or even gets some fresh air. I know it is Mattie that I am looking at, because he looks physically the same, but the personality and spirit, is no longer my son. Cancer continues to take over the beautiful aspects of his character.
We want to thank the Tilch family for a very generous lunch, and a wonderful gift bag of crafts and Legos for Mattie. Thank you Patricia for the lovely candles too! Our family appreciates your support.
Later in the afternoon, I went to visit Ann's parents, and spent a chunk of time with them. I want to thank all of you who wrote to me today regarding my visits to Ann's parents. I appreciate your understanding and support of my choices. I find it particularly interesting that Mary, Ann's mom, isn't feeling well herself, yet seems to have a very clear and intuitive sense for how her husband is feeling. I suppose this is what happens when you are married to someone for 50 years. I also wanted to comment on the beauty of talking with an older adult. Older adults understand and appreciate the art of conversation. In a way it is an art form that is becoming lost with the younger generations, where the quick fix is what is sought after, information is communicated in brief text messages, and our day to day pace is just so fast and furious, that we miss the wonderful opportunity to just be able to sit and chat. I don't wish any of you the year we have been living through, but experiencing cancer has caused me to re-evaluate everything, and to appreciate the more meaningful things in life. In fact, I almost feel like I think clearer and feel much more than I ever did before. This clarity within myself is a gift I hope never to lose, I just wish it did not come at Mattie's expense.
When I got home this evening, Mattie was surrounded by gifts. He received many wonderful gifts such as a can of wands from Bob Weiman, pirate items from Diane Bancroft, a 3-D puzzle and zoobs from the Lai's, a stuffed animal walrus from his buddy Claire F., a coloring set from Beth E., and Red Sox gear from Angie. Thank you all for these great gifts. They brought a smile to Mattie's face today! Which these days is no easy task!
My parents gave Mattie a huge tarantula today, and of course Mattie couldn't wait to shock me with it. This thing is almost bigger than I am, and it actually moves on a remote control. In addition, Peter and Mattie built a LARGER than life cockroach tonight, and of course guess who got to be stunned by it?! Me naturally.
Left: Mattie's tarantula
Right: Mattie holding a large fly swatter from his birthday party, which he was planning on using on the giant roach!
We would like to thank the Putnam family for a wonderful dinner. Thank you Grace for providing us meals twice this week. Mattie loves the new Indiana Jones Lego set, thank you! We ate in stages again tonight, and that seems to work. Karen sat with me first, and then chatted with Peter while he had his dinner. It is nice not to eat alone, and to have a friend staying with us who seems to relate to Peter, myself, and my parents in a sensitive yet unobtrusive way.
As we head into Thursday, Mattie is headed for his CT scan with sedation. It will be a long afternoon, and hopefully through the CT scan, we can get a feeling for how responsive the tumors were to the Cyberknife procedure. We also have to start a dialogue with Mattie about the possibility of taking VP-16, but I realize that this last chemotherapy attempt may be just too much for Mattie. Keep us in your thoughts and prayers. Peter and I are so exhausted, however, we continue to do what is needed to make sure Mattie gets the best possible care and attention.
I would like to end tonight's posting with five messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I was very disturbed by Tuesday's blog. To read that someone saw your kindness to Ann's parents in any way but a positive light, shames them, not you. It is clear to the majority of us that not only are you not "shirking" your duty to Mattie, you have been on duty 24/7 now for more than a year, always with the fierceness only a mother's love can provide. In addition, visiting with the sick or with elders who are unable to get out is a mitzvah, a good deed/requirement in this life, and does not in any way say that you think you are special for doing so. Many people shirk duties that they should do when given even a small excuse; you make a commitment and carry it out in spite of your immense commitment to Mattie. I respect you for that and I feel sorry for those who don't understand and who say unkind things as a result.The transporters, the military people and the alumni group have responded that they are praying daily for Mattie and your family, and that they are adding the issue of Mattie's inability to eat and drink to their efforts. I hope that the doctors are able to find a solution to this soon; I know it is an ongoing heartbreak for you as well as debilitating for Mattie. You were in my thoughts as soon as I awoke this morning as you are every morning. I continue to pray."
The second message is from a close family friend. Kathleen wrote, "I was just reading your blog and I want to say, if it helps any, think of me holding your hand for strength, think of all of us who read your blog ( I believe I can speak for all of us, and no one would mind) we are all with you, envision us all holding your hands holding you up, in spirit and strength, count on me, count on us and thank you for showing us Mattie's beautiful picture, it is so bright and colorful."
The third message is from one of Mattie's preschool teachers at RCC. Marilyn wrote, "I have kept up with Mattie's situation through the blog, and my family and I, like all your other readers, are filled with sadness at the prospect of Mattie's losing his battle with osteosarcoma. Reading the story of his illness and the incredible fight you and he have waged has opened our hearts to moments of amazing bravery, wincing pain and fear, overwhelming exhaustion, grinding perseverance in the most uncomfortable settings, and a jaw dropping medical education. You must never question what you have done for Mattie. No parents have ever shown greater love and determination to help their child. How we wish the story could end differently. Lately, I have been moved to watch the whole stream of photographs at the beginning of your blog. That vibrant, whip smart, determined little boy is the one I will always remember. One does not often meet a child with Mattie's spirit and gifts, and I think that is one of the reasons it is so very hard for all of us to accept losing him. Why create such a remarkable child only to have him meet the fate dealt to Mattie? My family joins me in sending our hopes and prayers that you will all be surrounded by a pain-free, gentle veil of peace and acceptance as the time comes for Mattie to leave this world. We will be with you in spirit on this last part of your family's journey."
The fourth message is from my colleague and friend. Susan H. wrote, "I just wanted you to know that I continue to read the blog daily and am truly changed by this experience. Mattie has a legacy that is being set up to live longer than his physical body. He truly has meaning to a lot of us in places, people, and situations that you would least expect! I've never even met him but he, along with you and Peter, continue to change my perspectives on cancer and the devastating effect it has on all loved ones involved. You and Peter have generously offered us an incredible insight into the family struggle with cancer, and I for one thank you for that. I've been wondering lately about what will happen with the blog when Mattie passes on and I'm hoping you will continue to write as his passing does not end everything that your friends and colleagues are concerned about. And visiting with Ann's parents? Go for it! I can imagine it can be defined as healing moments for you - it lets you step into your true calling of being a helping professional, it gives your love of people and friendship a place to shine, and it nurtures that very important inner part of you. Don't care what other people think, I would imagine most, if not all, of your blog followers are 100% behind all choices you make. My husband's standing behind me telling me it's time to shut my computer down. I'm having a full knee replacement in three hours. But trust me, when I am finished with surgery, I'll be ready to read your next blog entry. Take care, Vicki, and keep doing what's right for you, Peter, and dear Mattie. And I am also attaching a picture of a quilt I made several years ago that at times reminds me of what your life might feel like. So intense and gray, and foreboding at times, but knowing that there is still beauty in the world that currently may be difficult for you to see consistently. Perhaps the beauty is hope, love, friendship, and all the other wonderful things that sustain us. Truly, you are surrounded by it."
The final message is from a friend of my sister-in-law's. I have never met Lesley in person, but we share a lot in common. Lesley wrote, "The gift of your blog is that you never have to explain. You have shared the depth of how horrific this disease is that there is not a reader out there that judges you. If you find some peace and serenity in being with Ann's parents then somehow that has to happen. You speak of shutting people out, but I think you blog has allowed people to stay connected and understand your need for privacy. Peter and you are doing what Mattie needs and that is something no one can judge. When you are ready to be with your friends, they will embrace and support you. You will not need to explain...you already have. Your strength must come from a place that I personal have never had to find. Yesterday my healthy son fell and he got mildly hurt. As he hit the ground, I swear a chill ran up my body as I somehow experienced his pain. I can not even image what it must be like to hear your baby crying in pain for hours on end and not be able to control it. You have been asked to be stronger and braver than most people could ever imagine. We all continue to pray for Mattie's days to be pain free. With so much love and hugs to this woman warrior I never met but so respect."
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