Since Grace told me last week that she wanted to write in my journal for this weeks visit, I thought I would go ahead and pick up a journal she could call her own. After all, she expressed interest in writing in mine, so I thought maybe she was wanting to have one for herself. It was not just any journal either, it was a pink one, with a little lock and key. She would need a pen, so I went ahead an bought her a pink one to match the journal I picked out for her. I have to admit, I was pretty excited to visit Grace this week, and gift these items to her. I was anxious for the day I would get to read the entries Grace would be making in her journal. We talk about so much on our weekly visits, I wondered what she would have left to write in her journal.
I always find the must colorful, prettiest gift bag I can each time I take something to Grace. I try to match it with the gift I bring. For instance, the jelly beans I brought in a bag decorated with colorful circles, much like the colors of the jelly beans. I brought her veil to her in a bag designed to hold a bridal shower gift. When I brought her some homemade cookies, I found a bag that was decorated with different types of cookies. Today’s bag was decorated with pink on it, and it looked more like a ballet costume than a bag. I thought it suited her perfectly, because my little angel friend was about as girly as they come, from her bossy attitude to her little giggles.
She spotted the bag right way, as soon as I walked in. She crossed her arms in front of her and gave me that look. You know the look, the one you get when you are about to be lectured by an adorable bossy eight year old feisty girl. “Jett, we agreed that you would not bring me gifts on our interviews days. You are breaking our rules and it was a pinky swear. Why do you do this to me?” I’m sporting a serious eye roll at this moment, because I know what the next sentence will be that she speaks. “What is in the bag Jett?”
I wasted no time handing the bag over to Grace, because I knew she would be excited to receive such a wonderful gift. I knew it would be even more popular then the day I brought her a blanket my neighbor Megan had handmade her for me. It was a blanket that had a huge picture of Barbie on it, dressed as a princess, that was cut and tied around the edges connecting it to a solid piece of pink flannel. It’s the same blanket Grace sleeps with every night, as she tells the story, because it makes her dreams seem real. Imagine my disappointment when she opened her bag and pulled out that sweet little pink journal and pen. “Oh”, she says, “a book and a pen.”
I reminded her of her statement last week, that this week she wanted to write in my journal. “You don’t seem very excited about my gift to you.” She is studying the journal, using the key to open it up, playing with the pen. “Oh. Well I like it OK Jett, but I still want to write in your journal.” She continues to play with her new gifts, opening and closing the journal, taking the cap off the pen and replacing it again. “I guess I do not know what I will do with this Jett, since you are telling my story.”
I explain to Grace what a journal is. I use the term diary because I felt that would better explain it to her. I tell her that anything can be a journal, it doesn’t have to be a book. It can be a tablet of paper, it can be done on the computer, it can be written on an old paper bag. We continue talking about this for quite a while when she decides she wants to share a part of her daily life with me, that is ‘not so fun’. This tells me two things. 1) Grace trusts me, which is important if I am going to tell her story, and 2) it will not be a pleasant experience and I need to stay strong. She pulls her bag out from under her pillow and sets it on her lap. “This is my carry all bag. I bring it with me when I come here for appointments and treatments because sometimes we are here for hours and I need things to do.” Grace rummages through her bag and pulls out a small compact monthly calendar book. It is not something you would imagine Grace would carry, much less use. It had a picture on the cover of it that looked like mountains in the background and water in front of the mountains. “What is it Grace, what do you use that for?”, I asked.
“It is a journal of my days”, she says as she opens it to the current month and hands it to me. She continues to explain it to me as I read her entries. “The sad face is on the days that it hurts real bad. The happy face is on the days when I don’t have to put a sad face in the box.” I flip through the prior months on the pages before the current month. It doesn’t take an accountant to look at each month prior and figure out that as the months have passed, there are more sad faces than happy faces.
“What are the days on your calendar that you put a red X in Grace?” I asked. “Those are the days that I have visitors. Not nurses or doctors or people I do not know. Every red X is a day that I was visited by someone that knew me before I had cancer.” Flipping through the pages of the months, I take note, that the red X’s started out strong, and the current month of March, had two red X’s, and here it was the 21st of the month. “Who were the red X people that came to visit you this month Grace”, I asked, not sure she would remember who had come to visit her. “Uncle Ronny. He is my mommy’s brother. He used to come up almost everyday when I first started coming for treatments. Now he comes one time each month. The other X was Marcy, she is our neighbor and she does not drive but she brought a taxi to come see me and she sat with me almost the whole four hours I was here that day.”
“What are the days you put a green dot in the bottom corner? There are lots of those days marked.”
“Those are the days I see tears in either my mommy or my daddy’s eyes. On those days I am extra strong and I try to smile a lot. My heart hurts on those days, because I know when I go to heaven, I will take a piece of their hearts with me, and they will keep me in theirs forever. I do not want them to be sad when I leave forever, I want them to remember my smiles.”
“Every so often there is a name written in a square Grace, who are those people?”
“Those are the other kids that were here with me. I write their names in the square of the day I last saw them. Sometimes I ask the nurses what happen that I do not see them anymore. They never answer me, they just look away and talk about something else. But I know.”
“Jett? Can I hold your journals and you can tell me about them like I told you about mine?” I carry two journals with me on Wednesdays. One is a daily journal that I carry that has dates on the pages, where I can jot down things in a moments notice. The second one is my Grace journal, and there are more blank pages in it then ones I’ve written on, however, there are pieces of paper stuffed into the book that will one day, hopefully far far away, will tell the story of Grace, as she moves from earth to the heavenly sky’s of Boston Mass. I hand Grace my daily journal. No one has ever laid a hand on this journal besides myself. I guard it with my life, because it not only contains my days agenda, it also contains some of my most inner thoughts, along with a few words that probably shouldn’t be read by anyone under the age of 18.
Grace takes my journal and slowly opens it, clearly hesitating for whatever reason. “Open it and read it Grace”, I tell her. She opens it to the current date, which is marked with a bookmark with a saying on it that reads : “Courage is not the lack of fear but the ability to face it." -- Lt. John B. Putnam Jr. (1921-1944).
Grace reads the pages backwards, asking an occasional question to better understand how I work my daily journal. When she reaches the front of the journal, she realizes that it began on the first day of Jan of 2012. “Did you do this to a journal last year Jett? Can I read it?” She asks, but it clearly sounds to me like a demand. “Sure you can, I will bring it with me next week.” I tell her. “I would like it more if you could bring it to me tomorrow Jett, so I can read it before you come, and ask you questions when you get here next week.” Again, it’s clearly a demand, and I let her know I will drop it off tomorrow. I don’t really worry about the contents of the journal, because its more a log of my daily goals and accomplishments than anything else. There is some colorful language, because there were days when I just had to vent in the written word. I make a mental note to let her mom know about this, and gain her approval.
“Grace? I think you should use your new journal and write a little note to your parents in it every day. It will be something that they can treasure for a very long time. You can tell them something everyday that you think you would like them to remember about your time with them.”
She picks up her new journal and smiles at me. “I think I will do that Jett. I think I would like them to know some things they do not already know. Do you think you can go to the waiting room and ask my mommy if she will give you a dollar and you can buy me a coke? I would like a coke please.”
I leave to go get Grace a coke and stop to visit with her mom for a few minutes. She so kindly waits each week and lets me visit with Grace. I noticed a couple weeks ago that she spends time writing in a journal of her own. I never ask her about it, mostly because sometimes when people journal things, it is not something they care to share. And each time I’ve seen her write in her journal, she closes it and slips it into her bag as I approach. I tell her that Grace wanted a coke, and we both laughed because we both know that Grace owns me. I do everything she wants me to do. Her parents kid me about it a lot, telling me that it is like Grace is my older sister and she orders me around like its her job. I don’t mind, really, because she’s kind enough to let me into her short life. I get the coke and go back to the room where I find Grace holding my daily journal in her hands.
“I am tired Jett, and I would like to rest now. Do not forget you will be coming back tomorrow to drop off your other journal to me. You can trust me with it, and I will take good care of it so nothing happens to it.”
I take my journal and put it back into my bag, put on my jacket to leave, and give Grace a hug. “Thanks for showing me your calendar Grace, it takes courage to share your personal things with others.” She hugs me back. “Thank you too Jett, for having courage to let me read your personal things too.”
One last lecture about breaking one of our pinky swears regarding me bringing gifts to Grace while we are conducting our weekly interviews and I am on my way. I get to the door, knowing we are not done yet.
“Jett?” I hear her tired voice say. “Yes Grace?” She hesitates a moment, “I like my journal, thank you.” See me smiling. “You’re welcome Grace, I hope you find things to write in it everyday.”
“Jett?” she calls out when I exit her room. “Yes Grace?”
“I think we both are good about being afraid of things, and not hide it.” She says. “We have courage Grace, and we have each other. We are going to be alright.” I tell her.
I leave and think about Grace’s calendar. How she has already begun to journal her story before I even knew her. I realize that I will never know everything about Grace to give a true and accurate story of her fears and the courage she has to face them. I wonder what my calendar would look like if I put a green dot on every box that I have witnessed someone I love cry. I wonder how many names I would have written in the boxes representing the last time I have seen someone. I wonder if I would have more happy faces then I would sad faces and if my good days would be better represented than the sad ones.
Life clearly is not valued by those of us who do not face the ‘advantage’ of knowing our time here is limited and will soon end. We do not think in terms of days of tears, days when our friends will no longer be here, days we see our loved ones cry. We call it life, and move on. Grace knows it is life, and she moves on. Us looking for a better tomorrow. Grace hoping for one more day.
On Friday I took out my daily journal, as I do every morning. I go to my bookmark and turn to the page. It is already on the pages I will use for today. On the left side of the journal, Grace had written in big bold ink ‘DON’T FORGET TO BRING ME YOUR JOURNAL’. She had also put a happy face under her entry in my journal. I think she was letting me know, no matter how much it hurts today, she is going to have a good day.
:-)
I always find the must colorful, prettiest gift bag I can each time I take something to Grace. I try to match it with the gift I bring. For instance, the jelly beans I brought in a bag decorated with colorful circles, much like the colors of the jelly beans. I brought her veil to her in a bag designed to hold a bridal shower gift. When I brought her some homemade cookies, I found a bag that was decorated with different types of cookies. Today’s bag was decorated with pink on it, and it looked more like a ballet costume than a bag. I thought it suited her perfectly, because my little angel friend was about as girly as they come, from her bossy attitude to her little giggles.
She spotted the bag right way, as soon as I walked in. She crossed her arms in front of her and gave me that look. You know the look, the one you get when you are about to be lectured by an adorable bossy eight year old feisty girl. “Jett, we agreed that you would not bring me gifts on our interviews days. You are breaking our rules and it was a pinky swear. Why do you do this to me?” I’m sporting a serious eye roll at this moment, because I know what the next sentence will be that she speaks. “What is in the bag Jett?”
I wasted no time handing the bag over to Grace, because I knew she would be excited to receive such a wonderful gift. I knew it would be even more popular then the day I brought her a blanket my neighbor Megan had handmade her for me. It was a blanket that had a huge picture of Barbie on it, dressed as a princess, that was cut and tied around the edges connecting it to a solid piece of pink flannel. It’s the same blanket Grace sleeps with every night, as she tells the story, because it makes her dreams seem real. Imagine my disappointment when she opened her bag and pulled out that sweet little pink journal and pen. “Oh”, she says, “a book and a pen.”
I reminded her of her statement last week, that this week she wanted to write in my journal. “You don’t seem very excited about my gift to you.” She is studying the journal, using the key to open it up, playing with the pen. “Oh. Well I like it OK Jett, but I still want to write in your journal.” She continues to play with her new gifts, opening and closing the journal, taking the cap off the pen and replacing it again. “I guess I do not know what I will do with this Jett, since you are telling my story.”
I explain to Grace what a journal is. I use the term diary because I felt that would better explain it to her. I tell her that anything can be a journal, it doesn’t have to be a book. It can be a tablet of paper, it can be done on the computer, it can be written on an old paper bag. We continue talking about this for quite a while when she decides she wants to share a part of her daily life with me, that is ‘not so fun’. This tells me two things. 1) Grace trusts me, which is important if I am going to tell her story, and 2) it will not be a pleasant experience and I need to stay strong. She pulls her bag out from under her pillow and sets it on her lap. “This is my carry all bag. I bring it with me when I come here for appointments and treatments because sometimes we are here for hours and I need things to do.” Grace rummages through her bag and pulls out a small compact monthly calendar book. It is not something you would imagine Grace would carry, much less use. It had a picture on the cover of it that looked like mountains in the background and water in front of the mountains. “What is it Grace, what do you use that for?”, I asked.
“It is a journal of my days”, she says as she opens it to the current month and hands it to me. She continues to explain it to me as I read her entries. “The sad face is on the days that it hurts real bad. The happy face is on the days when I don’t have to put a sad face in the box.” I flip through the prior months on the pages before the current month. It doesn’t take an accountant to look at each month prior and figure out that as the months have passed, there are more sad faces than happy faces.
“What are the days on your calendar that you put a red X in Grace?” I asked. “Those are the days that I have visitors. Not nurses or doctors or people I do not know. Every red X is a day that I was visited by someone that knew me before I had cancer.” Flipping through the pages of the months, I take note, that the red X’s started out strong, and the current month of March, had two red X’s, and here it was the 21st of the month. “Who were the red X people that came to visit you this month Grace”, I asked, not sure she would remember who had come to visit her. “Uncle Ronny. He is my mommy’s brother. He used to come up almost everyday when I first started coming for treatments. Now he comes one time each month. The other X was Marcy, she is our neighbor and she does not drive but she brought a taxi to come see me and she sat with me almost the whole four hours I was here that day.”
“What are the days you put a green dot in the bottom corner? There are lots of those days marked.”
“Those are the days I see tears in either my mommy or my daddy’s eyes. On those days I am extra strong and I try to smile a lot. My heart hurts on those days, because I know when I go to heaven, I will take a piece of their hearts with me, and they will keep me in theirs forever. I do not want them to be sad when I leave forever, I want them to remember my smiles.”
“Every so often there is a name written in a square Grace, who are those people?”
“Those are the other kids that were here with me. I write their names in the square of the day I last saw them. Sometimes I ask the nurses what happen that I do not see them anymore. They never answer me, they just look away and talk about something else. But I know.”
“Jett? Can I hold your journals and you can tell me about them like I told you about mine?” I carry two journals with me on Wednesdays. One is a daily journal that I carry that has dates on the pages, where I can jot down things in a moments notice. The second one is my Grace journal, and there are more blank pages in it then ones I’ve written on, however, there are pieces of paper stuffed into the book that will one day, hopefully far far away, will tell the story of Grace, as she moves from earth to the heavenly sky’s of Boston Mass. I hand Grace my daily journal. No one has ever laid a hand on this journal besides myself. I guard it with my life, because it not only contains my days agenda, it also contains some of my most inner thoughts, along with a few words that probably shouldn’t be read by anyone under the age of 18.
Grace takes my journal and slowly opens it, clearly hesitating for whatever reason. “Open it and read it Grace”, I tell her. She opens it to the current date, which is marked with a bookmark with a saying on it that reads : “Courage is not the lack of fear but the ability to face it." -- Lt. John B. Putnam Jr. (1921-1944).
Grace reads the pages backwards, asking an occasional question to better understand how I work my daily journal. When she reaches the front of the journal, she realizes that it began on the first day of Jan of 2012. “Did you do this to a journal last year Jett? Can I read it?” She asks, but it clearly sounds to me like a demand. “Sure you can, I will bring it with me next week.” I tell her. “I would like it more if you could bring it to me tomorrow Jett, so I can read it before you come, and ask you questions when you get here next week.” Again, it’s clearly a demand, and I let her know I will drop it off tomorrow. I don’t really worry about the contents of the journal, because its more a log of my daily goals and accomplishments than anything else. There is some colorful language, because there were days when I just had to vent in the written word. I make a mental note to let her mom know about this, and gain her approval.
“Grace? I think you should use your new journal and write a little note to your parents in it every day. It will be something that they can treasure for a very long time. You can tell them something everyday that you think you would like them to remember about your time with them.”
She picks up her new journal and smiles at me. “I think I will do that Jett. I think I would like them to know some things they do not already know. Do you think you can go to the waiting room and ask my mommy if she will give you a dollar and you can buy me a coke? I would like a coke please.”
I leave to go get Grace a coke and stop to visit with her mom for a few minutes. She so kindly waits each week and lets me visit with Grace. I noticed a couple weeks ago that she spends time writing in a journal of her own. I never ask her about it, mostly because sometimes when people journal things, it is not something they care to share. And each time I’ve seen her write in her journal, she closes it and slips it into her bag as I approach. I tell her that Grace wanted a coke, and we both laughed because we both know that Grace owns me. I do everything she wants me to do. Her parents kid me about it a lot, telling me that it is like Grace is my older sister and she orders me around like its her job. I don’t mind, really, because she’s kind enough to let me into her short life. I get the coke and go back to the room where I find Grace holding my daily journal in her hands.
“I am tired Jett, and I would like to rest now. Do not forget you will be coming back tomorrow to drop off your other journal to me. You can trust me with it, and I will take good care of it so nothing happens to it.”
I take my journal and put it back into my bag, put on my jacket to leave, and give Grace a hug. “Thanks for showing me your calendar Grace, it takes courage to share your personal things with others.” She hugs me back. “Thank you too Jett, for having courage to let me read your personal things too.”
One last lecture about breaking one of our pinky swears regarding me bringing gifts to Grace while we are conducting our weekly interviews and I am on my way. I get to the door, knowing we are not done yet.
“Jett?” I hear her tired voice say. “Yes Grace?” She hesitates a moment, “I like my journal, thank you.” See me smiling. “You’re welcome Grace, I hope you find things to write in it everyday.”
“Jett?” she calls out when I exit her room. “Yes Grace?”
“I think we both are good about being afraid of things, and not hide it.” She says. “We have courage Grace, and we have each other. We are going to be alright.” I tell her.
I leave and think about Grace’s calendar. How she has already begun to journal her story before I even knew her. I realize that I will never know everything about Grace to give a true and accurate story of her fears and the courage she has to face them. I wonder what my calendar would look like if I put a green dot on every box that I have witnessed someone I love cry. I wonder how many names I would have written in the boxes representing the last time I have seen someone. I wonder if I would have more happy faces then I would sad faces and if my good days would be better represented than the sad ones.
Life clearly is not valued by those of us who do not face the ‘advantage’ of knowing our time here is limited and will soon end. We do not think in terms of days of tears, days when our friends will no longer be here, days we see our loved ones cry. We call it life, and move on. Grace knows it is life, and she moves on. Us looking for a better tomorrow. Grace hoping for one more day.
On Friday I took out my daily journal, as I do every morning. I go to my bookmark and turn to the page. It is already on the pages I will use for today. On the left side of the journal, Grace had written in big bold ink ‘DON’T FORGET TO BRING ME YOUR JOURNAL’. She had also put a happy face under her entry in my journal. I think she was letting me know, no matter how much it hurts today, she is going to have a good day.
:-)
