Each time I visit Grace, at some point, I read her my blog from the visit the week before. Most times I do not get to reading it before she gets anxious and will ask me, "Jett, read me 'our' blog". This past Wednesday was no different, with the exception of me unsure as how this weeks reading would go. Last weeks blog was extremely difficult for me to write and would not be much easier for me to share with the tiny girl it was written about. From the moment I published it for everyone to read to that very minute when Grace asked me to read her 'our' blog, the haunting realization that I would soon lose my on earth friendship with Grace has not left my mind.
Grace has never once held back any feelings she has regarding her fate. For the most part, she was OK and feared nothing, but every once in a while, very rarely though, she would express her fear of the unknown. I often wonder silently if Grace truly understands the dynamics of her disease, the toll it has taken on not only her, but all those that know her. Many times she has mentioned something to me that makes me believe she is already in contact with those beyond the earth. Things she talks about as if she has already visited heaven and returned a little more ready to leave us. Then there are times that she is a total eight year old little girl with questions that make you realize just how much life she has not lived at all. A very dear friend to me and I recently talked about fear and how she feels the older she gets, the more she fears. I find comfort in that statement simply because if that is something many people in their adult lives experience, perhaps Grace really does not fear much, because the innocence of her youth does not allow her to realize all there is to fear in life.
Grace settles in the middle of her bed, laying back, waiting for me to settle in for the reading of 'our' blog. I take the article out of my backpack and pull up a chair next to Graces bed, as was routine when we relived our last visit through the blog. She notices my clear hesitation today, as I fumble with my thoughts. "It is OK Jett, just read it to me." She says this as she looks into my eyes. I read 'our' blog to her, word for word, as she keeps her eyes on me. I purposely do not look at Grace as I read, because I know once we make eye contact, she will see the sadness that once again has taken over my entire being. Grace takes the article from me when I have finished reading it to her. She very carefully puts it into her bag, so she can give it to her dad to read that evening.
"You did a good job on this one Jett", she says, "I think it was 'our' best one so far." I often have to stop and remember she is the eight year old, and I am the 19 year old. I muster a smile. A smile when all I really want to do is cry. Grace scoots herself over to one side of her bed, which is her way of telling me she wants me to lay next to her, and talk. Most of our talks take place with us in this very position, and occasionally I have to look over to Grace, and make sure she has not fallen asleep. "Grace, do you want to talk about 'our' blog, or do you want to talk about something else?" I ask her. I love the little pauses she has before she speaks, as she carefully plans her words. "I am sad for my daddy Jett, because he cannot fix me. My daddy always used to be able to fix me when I would get hurt. He always made things feel good again. I think he wants to fix me." I look over at Grace, and she has silent tears forming in her eyes. I do not often see Grace cry, in fact, she has witnessed me cry a lot more than I have her. I reply to this best I can. "I think you are right Grace, and I think if he knew what to do for you, he would. The only thing left now, is for you to fix your daddy. I think you do that well. I think you are doing all the right things so that when you leave him, he will eventually be OK. I think he will miss you terribly forever, but I think in time he will have all the good memories you leave him to keep his heart from being broke."
"I know my mommy and my daddy will be OK. I know you will be OK too Jett. And I know I will be OK again too." Her tiny tired voice tells me. I turn and smile at her. "Yes Grace, we will all be OK."
"What will happen to all my things when I die?" The tears have since rolled down her cheeks, leaving her eyes clear once again. "What would you like to happen to all your things Grace?" , I ask. "Let's make another list Jett, of all my things, so I can decide where they should go." She is suddenly back to the Grace that carries on as if she has never had to think about never turning nine years old. We both sit up on her bed, side by side, with our feet hanging over the edge. I reach into my backpack and take out a notebook and a pen. Grace takes it from me, "I will start my list and then you can finish it." She opens the notebook to a blank page and across the top writes, MY STUFF. I let Grace create her list and as I watch her I think about the length of this list, and how it might compare to other eight year old girls. She begin by writing down the number one, and her list began to grow. It looked a little like this:
1. Linda, George, and Jenny, and all their stuff.
2. My wedding veil.
3. My disney princess blanket.
4. My bag and books and pencils.
5.
She stops on the number five. This is where we will start she tells me. "I think you should give Olivia all my barbie's things. Do not let her keep them shut in their case please. They need to be played with a lot. You can play with her." My mind races, because what am I supposed to say now? Grace is preparing a will. She is doing what you should never have to do until you are all grown up into adulthood. She doesn't even know that this is what she is doing. Here is this little girl, who owns very little material things, finding good homes for the items she treasures. She will wear her wedding veil when she leaves, so she will be ready for God when she gets to heaven. She would like her disney princess blanket to stay with her mommy, so she can sit at night when it is cold and wrap it around her shoulders and remember her. "What about your bag and all your writings and all your lists we made Gracie?" She ponders this for a second or two. "I would like you to keep them Jett, and when my next birthday is here, I would like you to give my mommy and daddy my memory book I am making for them. You can put it in a pretty bag like you do when you bring me a gift."
"You stopped at the number five Grace, are you going to add to your list?" I ask her. "No, I think that is all I want to be on that list. "You did a good job with that list Grace, and I will make sure Olivia takes good care of your barbie family." She smiles, "I like that you will still be playing with my dolls when I go to heaven Jett. And you have to do it to, because I will be watching you." It brings a smile to my face, because as sad as I am that very soon my little friend will be gone from earth, she will not only be in my heart, she will be watching me from heaven, hopefully with my brother Joey sitting next to her, hanging their feet over the edge of the clouds. Grace puts her feet up on the bed and her head on a pillow she has put on my leg. She has been fighting to keep her eyes open and as I touch her face, I tell her to rest, and I will still be here when she wakes up. When she has fallen asleep, I lay her back on the bed in her normal napping position. She will take little naps throughout the reminder of my visit. More now than ever before. She tires easily, and her voice tends to fade quickly now when we talk.
Each time Grace falls asleep on this day, I am laying next to her and watch her breathe. I stay silent and just watch her sleep. I love how peaceful she looks when she naps. Any little movement of the bed has her open her eyes and look at me. "You are not leaving yet are you?" "No Grace", I tell her, "I am not going anywhere." I watch as her eyes close again, and she drifts off to another peaceful nap.
I lay still, and I think about those words that last week were spoken, taking the very breath out of my lungs. "I think I am ready". I feel selfish wanting her to stay longer. I believe once she leaves she will be free of all her pain. Once she leaves, the rest of us can begin to grieve, mourn the loss of this angel on earth. I cannot help but feeling anger about her fate. I cannot help feeling helpless in what I can do for her. I can only imagine how horrible her dad feels, not being able to fix this.
She has rested and is ready to talk more. She tells me how she feels we have so much more to talk bout so when she is gone, I can write her story. We have created so many lists, and crossed off so many of the entries on those lists. Things she has accomplished. Things she has yet to accomplish. Things she will never be able to do. Things she has already done. List after list we create together. Lists that I know, had I not made with her, I would think was a waste of our time to even focus on. The most recent list is a list of food that Grace has never gotten to try. Like the chili dog she took maybe four tiny bits from today and is now crossed off her list. The list of dances she will never get to do, like the daughter/daddy wedding dance she will never get to have. Lists of things you and I take for granted in our lives. Lists of things you and I never thought of when we were eight because we didn't think about not ever reaching the age where those things would take place.
Each time we cross something off one of Grace's buckets list, we talk about how that just became a memory. The things she wants added to her lists have become scarce. We have a lot of things to cross off before she leaves, and I wonder if she is stopping this process, knowing that because she has stated 'I think I am ready', it is time to focus on what is already on the list, and start accomplishing as much of those things as we can.
I think about all the things Grace would like me to write in a book when she is gone, regarding her journey. We have already spent hours talking about the things she wants people to know about her life, and even more about the things she would like people to learn about her after her death. The lists of accomplishments and the lists of the things she knows she will never accomplish. The lists of the people she has met and the list of the people she knows she will never meet. A few visits back I teased her about how she needs a list to keep track of all her lists. She stared at me that day, as she dug out her notebook in her bag, opening it to the back page, and showed me the list of the lists she keeps. We laughed until we cried that day, looking over her list of lists. I LOVE this little girl. She is sassy and bold. She is sweet and kind. She is honest as Abe.
It is nearing the time I need to be thinking about getting to an appointment I have made this evening. I move to get up off her bed and sit in the chair still sitting next to it. Grace wakes up and we lock eyes. "Jett, remember last week when I told you I feel I am ready?" she asks. "Yes Grace", I respond. "I am going to tell my daddy to stop my treatments now." I touch her head and feel the scars from the surgeries that have since stopped because they were not helping halt the growth of cancer in her tiny skull. "I love you Grace." She puts her hand on top of my hand that is resting on her head. "I love you too Jett." She closes her tired dark eyes and drifts back off to sleep. I gently kiss her head and gather my things to leave.
Grace's parents are standing outside her room tonight. I feel the tears forming in my eyes. Her dad looks at me and without me asking he says "Four to six weeks." Not another word is spoken as I hug her mom tight, then hug her father too. I leave the cancer center that day, not surprised by what I just heard, but certainly not happy. Two weeks ago I was sitting with Grace's mom in the parents room while Grace was sleeping pretty soundly. I did this often, sat with her in silence, with an occasional hand on her shoulder from time to time, letting her know I was still there. This particular day Grace's doctor came and talked to her mom about the treatments, how they were no longer achieving any type of positive results, and the side effects would start turning on Grace's frail body and worn out system. He assured Grace's mom that they would not encourage treatments to continue, but ultimately it would be them that makes the decision to stop them, and hope for Grace to go peacefully, with very little pain. They would give her morphine to make the remainder of her life comfortable. It was at that point that I left the room, and pushed that conversation as far back in my heart as I could.
I go home and fire up my laptop. I hammer out a blog about life and its evil twin, death. I am angry at the circle of life. I am angry that an innocent child will die. I am angry there is nothing I can do. I am angry for feeling selfish about letting her go. I am angry that all over the world, sick twisted heartless men live on death row for the sins they committed on earth. I am angry that God will forgive them and one day they will live amongst us in heaven. I am angry. I want justice. I want the bad to die, the good to live. I want to go take Grace and run away where death cannot find her. I search my my mind for where that place might be. I google in search of places that could give her new hope, new life. My mind races, trying to find somewhere to take her, to save her.
I feel a sudden calmness come over my frantic state of being. I feel warmth wrap around me. I feel more and more relaxed as I sit and listen to the silence around me. "She's in your heart brother, right next to me. That is the one place death cannot get us." I could fill a bucket with the tears falling from my eyes, pouring out from my mind, my heart, and my soul. "You cannot fix her, but she can fix you." I feel as someone is whispering in my ear, reminding me that faith in God, is trust in God.
Death is an act of God. He alone is in control.
Grace has never once held back any feelings she has regarding her fate. For the most part, she was OK and feared nothing, but every once in a while, very rarely though, she would express her fear of the unknown. I often wonder silently if Grace truly understands the dynamics of her disease, the toll it has taken on not only her, but all those that know her. Many times she has mentioned something to me that makes me believe she is already in contact with those beyond the earth. Things she talks about as if she has already visited heaven and returned a little more ready to leave us. Then there are times that she is a total eight year old little girl with questions that make you realize just how much life she has not lived at all. A very dear friend to me and I recently talked about fear and how she feels the older she gets, the more she fears. I find comfort in that statement simply because if that is something many people in their adult lives experience, perhaps Grace really does not fear much, because the innocence of her youth does not allow her to realize all there is to fear in life.
Grace settles in the middle of her bed, laying back, waiting for me to settle in for the reading of 'our' blog. I take the article out of my backpack and pull up a chair next to Graces bed, as was routine when we relived our last visit through the blog. She notices my clear hesitation today, as I fumble with my thoughts. "It is OK Jett, just read it to me." She says this as she looks into my eyes. I read 'our' blog to her, word for word, as she keeps her eyes on me. I purposely do not look at Grace as I read, because I know once we make eye contact, she will see the sadness that once again has taken over my entire being. Grace takes the article from me when I have finished reading it to her. She very carefully puts it into her bag, so she can give it to her dad to read that evening.
"You did a good job on this one Jett", she says, "I think it was 'our' best one so far." I often have to stop and remember she is the eight year old, and I am the 19 year old. I muster a smile. A smile when all I really want to do is cry. Grace scoots herself over to one side of her bed, which is her way of telling me she wants me to lay next to her, and talk. Most of our talks take place with us in this very position, and occasionally I have to look over to Grace, and make sure she has not fallen asleep. "Grace, do you want to talk about 'our' blog, or do you want to talk about something else?" I ask her. I love the little pauses she has before she speaks, as she carefully plans her words. "I am sad for my daddy Jett, because he cannot fix me. My daddy always used to be able to fix me when I would get hurt. He always made things feel good again. I think he wants to fix me." I look over at Grace, and she has silent tears forming in her eyes. I do not often see Grace cry, in fact, she has witnessed me cry a lot more than I have her. I reply to this best I can. "I think you are right Grace, and I think if he knew what to do for you, he would. The only thing left now, is for you to fix your daddy. I think you do that well. I think you are doing all the right things so that when you leave him, he will eventually be OK. I think he will miss you terribly forever, but I think in time he will have all the good memories you leave him to keep his heart from being broke."
"I know my mommy and my daddy will be OK. I know you will be OK too Jett. And I know I will be OK again too." Her tiny tired voice tells me. I turn and smile at her. "Yes Grace, we will all be OK."
"What will happen to all my things when I die?" The tears have since rolled down her cheeks, leaving her eyes clear once again. "What would you like to happen to all your things Grace?" , I ask. "Let's make another list Jett, of all my things, so I can decide where they should go." She is suddenly back to the Grace that carries on as if she has never had to think about never turning nine years old. We both sit up on her bed, side by side, with our feet hanging over the edge. I reach into my backpack and take out a notebook and a pen. Grace takes it from me, "I will start my list and then you can finish it." She opens the notebook to a blank page and across the top writes, MY STUFF. I let Grace create her list and as I watch her I think about the length of this list, and how it might compare to other eight year old girls. She begin by writing down the number one, and her list began to grow. It looked a little like this:
1. Linda, George, and Jenny, and all their stuff.
2. My wedding veil.
3. My disney princess blanket.
4. My bag and books and pencils.
5.
She stops on the number five. This is where we will start she tells me. "I think you should give Olivia all my barbie's things. Do not let her keep them shut in their case please. They need to be played with a lot. You can play with her." My mind races, because what am I supposed to say now? Grace is preparing a will. She is doing what you should never have to do until you are all grown up into adulthood. She doesn't even know that this is what she is doing. Here is this little girl, who owns very little material things, finding good homes for the items she treasures. She will wear her wedding veil when she leaves, so she will be ready for God when she gets to heaven. She would like her disney princess blanket to stay with her mommy, so she can sit at night when it is cold and wrap it around her shoulders and remember her. "What about your bag and all your writings and all your lists we made Gracie?" She ponders this for a second or two. "I would like you to keep them Jett, and when my next birthday is here, I would like you to give my mommy and daddy my memory book I am making for them. You can put it in a pretty bag like you do when you bring me a gift."
"You stopped at the number five Grace, are you going to add to your list?" I ask her. "No, I think that is all I want to be on that list. "You did a good job with that list Grace, and I will make sure Olivia takes good care of your barbie family." She smiles, "I like that you will still be playing with my dolls when I go to heaven Jett. And you have to do it to, because I will be watching you." It brings a smile to my face, because as sad as I am that very soon my little friend will be gone from earth, she will not only be in my heart, she will be watching me from heaven, hopefully with my brother Joey sitting next to her, hanging their feet over the edge of the clouds. Grace puts her feet up on the bed and her head on a pillow she has put on my leg. She has been fighting to keep her eyes open and as I touch her face, I tell her to rest, and I will still be here when she wakes up. When she has fallen asleep, I lay her back on the bed in her normal napping position. She will take little naps throughout the reminder of my visit. More now than ever before. She tires easily, and her voice tends to fade quickly now when we talk.
Each time Grace falls asleep on this day, I am laying next to her and watch her breathe. I stay silent and just watch her sleep. I love how peaceful she looks when she naps. Any little movement of the bed has her open her eyes and look at me. "You are not leaving yet are you?" "No Grace", I tell her, "I am not going anywhere." I watch as her eyes close again, and she drifts off to another peaceful nap.
I lay still, and I think about those words that last week were spoken, taking the very breath out of my lungs. "I think I am ready". I feel selfish wanting her to stay longer. I believe once she leaves she will be free of all her pain. Once she leaves, the rest of us can begin to grieve, mourn the loss of this angel on earth. I cannot help but feeling anger about her fate. I cannot help feeling helpless in what I can do for her. I can only imagine how horrible her dad feels, not being able to fix this.
She has rested and is ready to talk more. She tells me how she feels we have so much more to talk bout so when she is gone, I can write her story. We have created so many lists, and crossed off so many of the entries on those lists. Things she has accomplished. Things she has yet to accomplish. Things she will never be able to do. Things she has already done. List after list we create together. Lists that I know, had I not made with her, I would think was a waste of our time to even focus on. The most recent list is a list of food that Grace has never gotten to try. Like the chili dog she took maybe four tiny bits from today and is now crossed off her list. The list of dances she will never get to do, like the daughter/daddy wedding dance she will never get to have. Lists of things you and I take for granted in our lives. Lists of things you and I never thought of when we were eight because we didn't think about not ever reaching the age where those things would take place.
Each time we cross something off one of Grace's buckets list, we talk about how that just became a memory. The things she wants added to her lists have become scarce. We have a lot of things to cross off before she leaves, and I wonder if she is stopping this process, knowing that because she has stated 'I think I am ready', it is time to focus on what is already on the list, and start accomplishing as much of those things as we can.
I think about all the things Grace would like me to write in a book when she is gone, regarding her journey. We have already spent hours talking about the things she wants people to know about her life, and even more about the things she would like people to learn about her after her death. The lists of accomplishments and the lists of the things she knows she will never accomplish. The lists of the people she has met and the list of the people she knows she will never meet. A few visits back I teased her about how she needs a list to keep track of all her lists. She stared at me that day, as she dug out her notebook in her bag, opening it to the back page, and showed me the list of the lists she keeps. We laughed until we cried that day, looking over her list of lists. I LOVE this little girl. She is sassy and bold. She is sweet and kind. She is honest as Abe.
It is nearing the time I need to be thinking about getting to an appointment I have made this evening. I move to get up off her bed and sit in the chair still sitting next to it. Grace wakes up and we lock eyes. "Jett, remember last week when I told you I feel I am ready?" she asks. "Yes Grace", I respond. "I am going to tell my daddy to stop my treatments now." I touch her head and feel the scars from the surgeries that have since stopped because they were not helping halt the growth of cancer in her tiny skull. "I love you Grace." She puts her hand on top of my hand that is resting on her head. "I love you too Jett." She closes her tired dark eyes and drifts back off to sleep. I gently kiss her head and gather my things to leave.
Grace's parents are standing outside her room tonight. I feel the tears forming in my eyes. Her dad looks at me and without me asking he says "Four to six weeks." Not another word is spoken as I hug her mom tight, then hug her father too. I leave the cancer center that day, not surprised by what I just heard, but certainly not happy. Two weeks ago I was sitting with Grace's mom in the parents room while Grace was sleeping pretty soundly. I did this often, sat with her in silence, with an occasional hand on her shoulder from time to time, letting her know I was still there. This particular day Grace's doctor came and talked to her mom about the treatments, how they were no longer achieving any type of positive results, and the side effects would start turning on Grace's frail body and worn out system. He assured Grace's mom that they would not encourage treatments to continue, but ultimately it would be them that makes the decision to stop them, and hope for Grace to go peacefully, with very little pain. They would give her morphine to make the remainder of her life comfortable. It was at that point that I left the room, and pushed that conversation as far back in my heart as I could.
I go home and fire up my laptop. I hammer out a blog about life and its evil twin, death. I am angry at the circle of life. I am angry that an innocent child will die. I am angry there is nothing I can do. I am angry for feeling selfish about letting her go. I am angry that all over the world, sick twisted heartless men live on death row for the sins they committed on earth. I am angry that God will forgive them and one day they will live amongst us in heaven. I am angry. I want justice. I want the bad to die, the good to live. I want to go take Grace and run away where death cannot find her. I search my my mind for where that place might be. I google in search of places that could give her new hope, new life. My mind races, trying to find somewhere to take her, to save her.
I feel a sudden calmness come over my frantic state of being. I feel warmth wrap around me. I feel more and more relaxed as I sit and listen to the silence around me. "She's in your heart brother, right next to me. That is the one place death cannot get us." I could fill a bucket with the tears falling from my eyes, pouring out from my mind, my heart, and my soul. "You cannot fix her, but she can fix you." I feel as someone is whispering in my ear, reminding me that faith in God, is trust in God.
Death is an act of God. He alone is in control.
