It has been almost a week since Grace and I visited about our journals. When I entered her room this afternoon, she was sitting on the edge of her bed and seemed anxious. "You are late today Jett, I worried you would not be coming to visit with me." I responded "When have I ever not come to visit you unless you called me to tell me you were not feeling up to be interviewed?"
She laid down on her propped up pillows, nestled her head into them, and closed her eyes. "Well you never know when the people you need will stop coming." I felt sad for Grace, because I think that is how her life has been since she turned seven and became sick with headaches, which lead to being diagnosed with brain cancer. Tumors that grow quickly inside her head, causing pressure to build up inside. Promising at first, is what her father has told me, removing the two that were causing the headaches and leaving the one that could possibly cause her more health issues in the long run. It worked, or so it seemed for a full two months. All the check ups indicated the surgeries were successful, and once the hair grew back, the scars would not be noticeable. Then one day in the middle of her school day, Grace stumbled in the hall, suddenly dizzy. A tumor had grown and would need to be removed the next day. And from that point on, they would shrink what they could, remove what they could, and do what they could to preserve the life of this small child. Grace turned eight in January, but was told the prior November that she was terminal, and they could continue to remove tumors that were growing, and shrink those that were hurting her head, but ultimately she only had months to live until her cancer would have taken its toll on her small fragile body. Months, they estimated, but could not narrow that down at this time.
The months have turned into weeks. I was introduced to Grace shortly after her eighth birthday in January. Three months I have been visiting Grace, and in that very short time I can see the damage the treatments have left on her small frame. When I first met Grace, she had long blond hair and the only flaws were two patches of skin you could see on her head from her most recent surgeries. Today she keeps her head shaved, which reveals the scars from several surgeries. Most often Grace sports some type of lid or another, maybe to hide her scars, maybe to keep her warm. I don't know the answer to that question and I probably never will, but I do know, hat or not, hair or not, she is still my little angel and I find her just the most beautiful eight year old I know.
I kiss Grace on top of her head, and with my hands I nudge her to move over. I lay next to her, grab her tiny hand, and say "You need me?" I listen closely to Grace when she speaks, because she chooses her words wisely. She pauses often before she speaks, something I always tell myself I need to work on. "Yes, I need you Jett. I need to know you will come visit me until I am not here anymore. And then I expect you to visit me in our hearts when I am in heaven, like you do Joey." I turn my head and look at Grace, and see she is holding back tears today. "Why is today sad for you Grace? I am sorry I was late, I will stay extra if you would like, to make it up to you." Grace does not look over at me, she just lays there and keeps her eyes closed, looking up.
"I am tired Jett. It is harder for me to get over my treatments from one to the next one. I do not like being alone, it makes me think about things I wish not to." She squeezes my hand with hers. "I am not mad you are late today. I believe you when you tell me you will keep coming to see me." Grace turns her head to look at me. I tell her "Grace, I know you are scared. I am scared too. I was scared when Joey left me. I am still scared that my mom left me. I am scared for the day you will leave me." I turn my head and look up at the ceiling, to avoid letting Grace see my eyes fill with tears.
Grace lets go of my hand, and my mind races forward to the day it will be the last time she lets go of my hand. "Pinkie swear to me that when I am gone, you will still come here, and visit someone else who comes here to get better." She says. "Not to write their story like you are writing mine though. I just want you to visit them and make them smile." This is my bossy sassy girl. "I pinkie swear." We twist our pinkies around each others to seal this bond. "You know Grace, we have a gazillion pinkie swears already. They will keep me busy until the day I get to join you in heaven one day."
Grace smiles and pulls out her bag from under her pillow. "I've read your entire journal from last year already." She reaches in the bag to grab it and give it back to me. "At the bottom of your pages, you have things I do not know what they mean." I ask her if she would like to read a few pages together and I can answer those questions. She randomly opens a page from December, before the Christmas holiday. "At the bottom of this page you have 'ADWJ', what does that mean?" I answer her "Another Day Without Joey". She responds "I think he is with you everyday, but some days you need him more than others so you miss him a little." [makes sense to me] She turns to another page. "SAPFGx10?" she asks? "Say A Prayer For Grace" and the x10 simply means I took ten minutes to reflex on my friendship with you." This went on for maybe 20 minutes when Grace handed me my journal and pulled out the journal I had gotten her.
"What I like most about this journal, is that it is sooooo pink I can find it easy in my bag." Of course I smile, because I want Grace to like everything I bring her, and when she oogles over any of the things, I mentally pat myself on the back, because I love that she loves my stuff. She opens her journal and hands it to me. I read the page she points to.
Dear Mommy,
When I was six and I wanted to get a puppy and you said no and I told you I would rather have a puppy than a mommy, I did not mean that. I love you Mommy.
"Grace! You took my advice!" I was excited. I really wanted her to decided to leave some entries in her journal behind so that her parents would have a piece of her they could physically hold. Something they would be able to pick up and hold, read, and cry with. She grinned ear to ear. "I liked your idea. I write something everyday, even when I do not feel well."
We spent over two hours at this point, talking about reading and writing. Moms and dads. Family and friends. I could see Grace was becoming tired and should probably rest. "Are you feeling better now than when I first got here Grace?" She grabbed my hand again. "I feel like you do not come here to just tell a story. I feel like you are my friend and you like to come visit me. That makes me feel better."
I let go of Grace's hand and stand up next to her. "You going to be OK Grace? You going to be able to get enough rest?" "Yes. I will be OK." She assures me. "Did you bring me anything this week Jett?" I think Grace likes when I gift her, which allows me to consistently break our pinkie swear rule about not gifting her. I did, I told her, as I reached into my jeans pocket and wrapped my hand around the gift, taking my hand out of my pocket. "Hold out your hand to me Grace." As she extended her tiny hand to me, I opened my hand and emptied the contents into the tiny palm of Grace. She opened her hand and looked , and seeing nothing she said "It is nothing?" I took her tiny hand and with mine I closed her fingers over her palm and squeezed it shut. "It is a pocket full of hope Grace, that you get a lot of rest when I leave today and when you wake up, you have a great night. When you feel sad, I want you to squeeze your hand, close your eyes, and feel the hope that many people have that you will have a better day. There are many people that say prayers for you. There are many people who know your story is coming. And all of them, like me, and like your parents, love you Grace. You are never more than a moment away from someone thinking about you and how you are doing." I kiss her on top of her head, and we share a pinkie hug.
As I walk to the door to exit her room for the day, she calls out to me "Jett? Come back to me please." I turn and walk back to her. She puts her hand on her heart and closes it into a fist. "Give me your hand Jett." I extend my arm to her and stretch out my fingers. Grace takes her fist and empties the contents into my hand, and takes her tiny hands and closes my fingers over my palm. "It is a handful of heart Jett. When you get sad you can squeeze your hand and you will feel the love I have in my heart for you." I keep my hand closed into a fist and put it over my heart. "Thank you Grace." I smile and turn to leave. When I reach the door I turn back to Grace. She has laid back into her pillows on the bed, and looking up at the ceiling. She has her eyes closed, and her hand closed into a fist, squeezing it next to her heart.
I walk to the waiting room for a short visit with Grace's mom before I leave. My hand is still squeezed tight and placed over my heart. I have a feeling both of our fists will be squeezed tight from now until next week when I visit my tiny little angel on earth again. I go about my evening as usual. I end my nights pretty late, well after midnight before I even think about shutting down for the night. This particular night, as I lay in bed, I find myself squeezing my fist, feeling the love Grace put inside of it for me to lean on. I wondered if Grace might be laying in bed tonight, fist squeezed tightly shut, feeling the hope that myself and all the rest of our friends and family feel for her. I reach for my journal and I make an entry. "Hope is the belief that things will turn out well, even if they do not turn out the way we would like."
Dear God, if I may be so bold as to ask for more than you have already graciously given me, please help Grace see that Faith - Hope - Love are things she can take with her, so long as she believes in them while she is here. Amen.
She laid down on her propped up pillows, nestled her head into them, and closed her eyes. "Well you never know when the people you need will stop coming." I felt sad for Grace, because I think that is how her life has been since she turned seven and became sick with headaches, which lead to being diagnosed with brain cancer. Tumors that grow quickly inside her head, causing pressure to build up inside. Promising at first, is what her father has told me, removing the two that were causing the headaches and leaving the one that could possibly cause her more health issues in the long run. It worked, or so it seemed for a full two months. All the check ups indicated the surgeries were successful, and once the hair grew back, the scars would not be noticeable. Then one day in the middle of her school day, Grace stumbled in the hall, suddenly dizzy. A tumor had grown and would need to be removed the next day. And from that point on, they would shrink what they could, remove what they could, and do what they could to preserve the life of this small child. Grace turned eight in January, but was told the prior November that she was terminal, and they could continue to remove tumors that were growing, and shrink those that were hurting her head, but ultimately she only had months to live until her cancer would have taken its toll on her small fragile body. Months, they estimated, but could not narrow that down at this time.
The months have turned into weeks. I was introduced to Grace shortly after her eighth birthday in January. Three months I have been visiting Grace, and in that very short time I can see the damage the treatments have left on her small frame. When I first met Grace, she had long blond hair and the only flaws were two patches of skin you could see on her head from her most recent surgeries. Today she keeps her head shaved, which reveals the scars from several surgeries. Most often Grace sports some type of lid or another, maybe to hide her scars, maybe to keep her warm. I don't know the answer to that question and I probably never will, but I do know, hat or not, hair or not, she is still my little angel and I find her just the most beautiful eight year old I know.
I kiss Grace on top of her head, and with my hands I nudge her to move over. I lay next to her, grab her tiny hand, and say "You need me?" I listen closely to Grace when she speaks, because she chooses her words wisely. She pauses often before she speaks, something I always tell myself I need to work on. "Yes, I need you Jett. I need to know you will come visit me until I am not here anymore. And then I expect you to visit me in our hearts when I am in heaven, like you do Joey." I turn my head and look at Grace, and see she is holding back tears today. "Why is today sad for you Grace? I am sorry I was late, I will stay extra if you would like, to make it up to you." Grace does not look over at me, she just lays there and keeps her eyes closed, looking up.
"I am tired Jett. It is harder for me to get over my treatments from one to the next one. I do not like being alone, it makes me think about things I wish not to." She squeezes my hand with hers. "I am not mad you are late today. I believe you when you tell me you will keep coming to see me." Grace turns her head to look at me. I tell her "Grace, I know you are scared. I am scared too. I was scared when Joey left me. I am still scared that my mom left me. I am scared for the day you will leave me." I turn my head and look up at the ceiling, to avoid letting Grace see my eyes fill with tears.
Grace lets go of my hand, and my mind races forward to the day it will be the last time she lets go of my hand. "Pinkie swear to me that when I am gone, you will still come here, and visit someone else who comes here to get better." She says. "Not to write their story like you are writing mine though. I just want you to visit them and make them smile." This is my bossy sassy girl. "I pinkie swear." We twist our pinkies around each others to seal this bond. "You know Grace, we have a gazillion pinkie swears already. They will keep me busy until the day I get to join you in heaven one day."
Grace smiles and pulls out her bag from under her pillow. "I've read your entire journal from last year already." She reaches in the bag to grab it and give it back to me. "At the bottom of your pages, you have things I do not know what they mean." I ask her if she would like to read a few pages together and I can answer those questions. She randomly opens a page from December, before the Christmas holiday. "At the bottom of this page you have 'ADWJ', what does that mean?" I answer her "Another Day Without Joey". She responds "I think he is with you everyday, but some days you need him more than others so you miss him a little." [makes sense to me] She turns to another page. "SAPFGx10?" she asks? "Say A Prayer For Grace" and the x10 simply means I took ten minutes to reflex on my friendship with you." This went on for maybe 20 minutes when Grace handed me my journal and pulled out the journal I had gotten her.
"What I like most about this journal, is that it is sooooo pink I can find it easy in my bag." Of course I smile, because I want Grace to like everything I bring her, and when she oogles over any of the things, I mentally pat myself on the back, because I love that she loves my stuff. She opens her journal and hands it to me. I read the page she points to.
Dear Mommy,
When I was six and I wanted to get a puppy and you said no and I told you I would rather have a puppy than a mommy, I did not mean that. I love you Mommy.
"Grace! You took my advice!" I was excited. I really wanted her to decided to leave some entries in her journal behind so that her parents would have a piece of her they could physically hold. Something they would be able to pick up and hold, read, and cry with. She grinned ear to ear. "I liked your idea. I write something everyday, even when I do not feel well."
We spent over two hours at this point, talking about reading and writing. Moms and dads. Family and friends. I could see Grace was becoming tired and should probably rest. "Are you feeling better now than when I first got here Grace?" She grabbed my hand again. "I feel like you do not come here to just tell a story. I feel like you are my friend and you like to come visit me. That makes me feel better."
I let go of Grace's hand and stand up next to her. "You going to be OK Grace? You going to be able to get enough rest?" "Yes. I will be OK." She assures me. "Did you bring me anything this week Jett?" I think Grace likes when I gift her, which allows me to consistently break our pinkie swear rule about not gifting her. I did, I told her, as I reached into my jeans pocket and wrapped my hand around the gift, taking my hand out of my pocket. "Hold out your hand to me Grace." As she extended her tiny hand to me, I opened my hand and emptied the contents into the tiny palm of Grace. She opened her hand and looked , and seeing nothing she said "It is nothing?" I took her tiny hand and with mine I closed her fingers over her palm and squeezed it shut. "It is a pocket full of hope Grace, that you get a lot of rest when I leave today and when you wake up, you have a great night. When you feel sad, I want you to squeeze your hand, close your eyes, and feel the hope that many people have that you will have a better day. There are many people that say prayers for you. There are many people who know your story is coming. And all of them, like me, and like your parents, love you Grace. You are never more than a moment away from someone thinking about you and how you are doing." I kiss her on top of her head, and we share a pinkie hug.
As I walk to the door to exit her room for the day, she calls out to me "Jett? Come back to me please." I turn and walk back to her. She puts her hand on her heart and closes it into a fist. "Give me your hand Jett." I extend my arm to her and stretch out my fingers. Grace takes her fist and empties the contents into my hand, and takes her tiny hands and closes my fingers over my palm. "It is a handful of heart Jett. When you get sad you can squeeze your hand and you will feel the love I have in my heart for you." I keep my hand closed into a fist and put it over my heart. "Thank you Grace." I smile and turn to leave. When I reach the door I turn back to Grace. She has laid back into her pillows on the bed, and looking up at the ceiling. She has her eyes closed, and her hand closed into a fist, squeezing it next to her heart.
I walk to the waiting room for a short visit with Grace's mom before I leave. My hand is still squeezed tight and placed over my heart. I have a feeling both of our fists will be squeezed tight from now until next week when I visit my tiny little angel on earth again. I go about my evening as usual. I end my nights pretty late, well after midnight before I even think about shutting down for the night. This particular night, as I lay in bed, I find myself squeezing my fist, feeling the love Grace put inside of it for me to lean on. I wondered if Grace might be laying in bed tonight, fist squeezed tightly shut, feeling the hope that myself and all the rest of our friends and family feel for her. I reach for my journal and I make an entry. "Hope is the belief that things will turn out well, even if they do not turn out the way we would like."
Dear God, if I may be so bold as to ask for more than you have already graciously given me, please help Grace see that Faith - Hope - Love are things she can take with her, so long as she believes in them while she is here. Amen.
