The last three nights I have spent sitting with Grace at the hospital watching her sleep and keeping her company when she wakes up. She has sent her parents home each night so they can get their full nights sleep and would be with her during the part of the day where she is most alert and can have quality time with them, since the quantity of time is no longer available. There are several signs of Stage 4 cancer that I am starting to see Grace go through. It started last week with the headaches she only wanted treated with baby aspirin. After a couple days of the headaches, the seizures and convulsions started to affect her during the night hours when she would be asleep. Her fever would climb with very little relief in them being able to get it down, taking its toll on her tiny frame. When she woke up a few days ago her limbs were numb and she was having difficulty walking on her own. She had asked her mom to call her dad at work, she was ready to go to the hospital.
Her dad would meet her and her mom at the ER, where she would be admitted to a room, where in a matter of days, possibly hours they said, she would take her final breaths. She would hold off on any further treatment until she was prepared to take them. She stayed strong and showed no fear. There would be no life support, only morphine and an IV. They had said that most often patients will die in their sleep, very peacefully. Grace corrected them, she would not die until she said her final goodbye. In her darkest hours, she stayed sassy, and bossy.
Grace told me to carry on with my week as I normally would, and visit her in the hospital as I normally would if she was at home. I chose to spend the nights with her in hopes her parents would trust she was in good hands while they submitted to her wish for them to get sleep at night. Right up until the end, Grace was keeping her parents life as near normal as she wanted it to be. I had already asked the question a couple of weeks ago to Grace, why she is choosing to spend her final days in the hospital, and not at home. "Seriously? Jett?", she would answer me, "If my daughter were going to die I would not want it to be in the house we live in." Once again, just like she left very little of herself in the bedroom she lived all her eight plus years in, she wanted to make it all easier for her parents to be able to return to their home and not have to take care of Grace's things. Most of us kids could only wish to be that thoughtful when it comes to our parents. For over seven years they took care of Grace's every need, and this final year of her life she was paying them back for the love they showered her with.
The first night I stayed with Grace she would sleep every couple hours and be awake for a couple of hours, then back to sleep. The only behavior difference I noticed is she was a bit more snappy in her responses to the nurses that were there to care for her. It wasn't her normal bossy sassy self where she was being funny yet demanding. It was as if they could do nothing right for her. I do not think she even realized she was being this way, but they clearly understood the reason behind it and just let it roll. She always thanked them when they left her room.
The second night I stayed with Grace she was even more tired, drifting in and out of sleep as we talked. I took note of her speech becoming less clear and her memory seemed to be short, often repeating something we had just talked about. More signs of her final breaths approaching, more of the reality I wish we could avoid. It helped that I had been prepared for these changes in her personality, but it did not make it any easier to witness her going through this. She was at the point now that she was constantly asking if she was being mean. She worried a great deal about this, but really had no control over any of it.
The third night I spent with Grace, which was last night, we played Go Fish. With her leaning back in a sitting position against the back of the hospital bed, and me sitting on the edge of her bed facing her, we used her table tray to play cards. In mid sentence Grace was drifting off to sleep, and in a matter of minutes would wake up and continue with the game. No matter how much I pleaded with her to quit the game and just sleep, she insisted we finish this game. One game of Go Fish took us almost an hour to play.
When Grace finally settled down into her bed and drifted off to sleep, I took note of the room she was in. She did very little to make this room "home" to her. She did not have it decked out with her personality and art work all over the place. Each time flowers would be put into her room she would ask they be taken away. If you questioned her about it, she got demanding and told you to remove them at once. If you walked into this room and looked around, you would be able to pick out a few items that made this room Grace's room. Her pink suitcase she brought with her own pajamas along with a few personal items. Her pink bag with her journals and letters in them that she kept under her pillow. Her pink kicks, which she insisted on wearing during the day, that sat next to her bed at night when she had on her pink fuzzy slippers to sleep in. I looked at Grace as she slept, so tiny in that bed, smaller than the first day I met her.
I noticed a small notebook on the bedside table with a pink pen on top of it. It was the pink pen I had given Grace several weeks back. I walked over and picked up the pen and notebook. I opened the notebook to the only page that had writing on it. Across the top in big letters written by Grace was 'my good byes". Under those words were a list of names, as I counted them I would reach the number sixteen. There were four names that had yet to be crossed off. Mr Pauling, Jett, Mommy, Daddy. I read the names she had crossed off this final list Grace had made. I noticed several I recognized, Zander, Charlie, Kristy, George, Tommy were a few. I looked in the pink suitcase that Grace used to dwindle down all signs of her existence. The necklace my friend Kristy had loaned to Grace the day they met was gone. I reached under the pillow where Grace kept her pink bag with her things in it. I sifted through the cards left for her to hand out. Kristy's was no longer there. I was sad when I thought about the names left on the list. I had guessed that Mr Pauling would be crossed off soon, that being my dad, who was not Mr Pauling at all, but Mr Felix. I liked how she knew this, but still called him by my name. After my dad's name would be crossed off, I knew it would be my name next. I could tell by how quickly Grace started to show the signs of Stage 4 cancer it would be very soon. A couple of hours had gone by since Grace had fallen asleep and during that time the nurses would move in and our of her room as quiet as angels, making sure she was doing the best she could be doing.
I never wanted to leave when her parents arrived in the early morning hours, but I knew it was their shift, their time with Grace. After about an hour visit with them each of the last three mornings I would tell Grace I would be up to visit and check in with her and bring her a treat. A treat she would hardly even taste, but still brought a smile to both of our faces. A tradition, a memory, that would carry me to the day I take my final breath and am reunited with my little angel sister Grace.
I visited Grace a few hours ago and took her a jelly doughnut. I knew the tiniest of bite would be all she would take but it is the most favorite treat we shared together and I knew this would be the last time we did. When Grace sent me packing for the night, with instructions to sleep in my own bed and come see her first thing in the morning it was probably not going to be a good day for me tomorrow. There was a calm about her and I had noticed that my dad must of at some point today visited Grace as well, as his name had been crossed off her list and his card was no longer in her bag. She had asked that her mommy and daddy share this night with her, which also told me Grace is probably going to take her final breath on earth in the next 24 hours. Tonight when I was able to lay in my bed and drift off to sleep, it will be with 'our' IPOD shuffling through the many tunes Grace and I had shared of the past three months. When Justin Bieber's tunes played, I would do my best to experience Bieber Fever, which was a pinky swear between Grace and I.
"Promise me you will get Bieber Fever, he is good you know."
"Yes Grace, I promise. I will let the Fever hit me"
Her dad would meet her and her mom at the ER, where she would be admitted to a room, where in a matter of days, possibly hours they said, she would take her final breaths. She would hold off on any further treatment until she was prepared to take them. She stayed strong and showed no fear. There would be no life support, only morphine and an IV. They had said that most often patients will die in their sleep, very peacefully. Grace corrected them, she would not die until she said her final goodbye. In her darkest hours, she stayed sassy, and bossy.
Grace told me to carry on with my week as I normally would, and visit her in the hospital as I normally would if she was at home. I chose to spend the nights with her in hopes her parents would trust she was in good hands while they submitted to her wish for them to get sleep at night. Right up until the end, Grace was keeping her parents life as near normal as she wanted it to be. I had already asked the question a couple of weeks ago to Grace, why she is choosing to spend her final days in the hospital, and not at home. "Seriously? Jett?", she would answer me, "If my daughter were going to die I would not want it to be in the house we live in." Once again, just like she left very little of herself in the bedroom she lived all her eight plus years in, she wanted to make it all easier for her parents to be able to return to their home and not have to take care of Grace's things. Most of us kids could only wish to be that thoughtful when it comes to our parents. For over seven years they took care of Grace's every need, and this final year of her life she was paying them back for the love they showered her with.
The first night I stayed with Grace she would sleep every couple hours and be awake for a couple of hours, then back to sleep. The only behavior difference I noticed is she was a bit more snappy in her responses to the nurses that were there to care for her. It wasn't her normal bossy sassy self where she was being funny yet demanding. It was as if they could do nothing right for her. I do not think she even realized she was being this way, but they clearly understood the reason behind it and just let it roll. She always thanked them when they left her room.
The second night I stayed with Grace she was even more tired, drifting in and out of sleep as we talked. I took note of her speech becoming less clear and her memory seemed to be short, often repeating something we had just talked about. More signs of her final breaths approaching, more of the reality I wish we could avoid. It helped that I had been prepared for these changes in her personality, but it did not make it any easier to witness her going through this. She was at the point now that she was constantly asking if she was being mean. She worried a great deal about this, but really had no control over any of it.
The third night I spent with Grace, which was last night, we played Go Fish. With her leaning back in a sitting position against the back of the hospital bed, and me sitting on the edge of her bed facing her, we used her table tray to play cards. In mid sentence Grace was drifting off to sleep, and in a matter of minutes would wake up and continue with the game. No matter how much I pleaded with her to quit the game and just sleep, she insisted we finish this game. One game of Go Fish took us almost an hour to play.
When Grace finally settled down into her bed and drifted off to sleep, I took note of the room she was in. She did very little to make this room "home" to her. She did not have it decked out with her personality and art work all over the place. Each time flowers would be put into her room she would ask they be taken away. If you questioned her about it, she got demanding and told you to remove them at once. If you walked into this room and looked around, you would be able to pick out a few items that made this room Grace's room. Her pink suitcase she brought with her own pajamas along with a few personal items. Her pink bag with her journals and letters in them that she kept under her pillow. Her pink kicks, which she insisted on wearing during the day, that sat next to her bed at night when she had on her pink fuzzy slippers to sleep in. I looked at Grace as she slept, so tiny in that bed, smaller than the first day I met her.
I noticed a small notebook on the bedside table with a pink pen on top of it. It was the pink pen I had given Grace several weeks back. I walked over and picked up the pen and notebook. I opened the notebook to the only page that had writing on it. Across the top in big letters written by Grace was 'my good byes". Under those words were a list of names, as I counted them I would reach the number sixteen. There were four names that had yet to be crossed off. Mr Pauling, Jett, Mommy, Daddy. I read the names she had crossed off this final list Grace had made. I noticed several I recognized, Zander, Charlie, Kristy, George, Tommy were a few. I looked in the pink suitcase that Grace used to dwindle down all signs of her existence. The necklace my friend Kristy had loaned to Grace the day they met was gone. I reached under the pillow where Grace kept her pink bag with her things in it. I sifted through the cards left for her to hand out. Kristy's was no longer there. I was sad when I thought about the names left on the list. I had guessed that Mr Pauling would be crossed off soon, that being my dad, who was not Mr Pauling at all, but Mr Felix. I liked how she knew this, but still called him by my name. After my dad's name would be crossed off, I knew it would be my name next. I could tell by how quickly Grace started to show the signs of Stage 4 cancer it would be very soon. A couple of hours had gone by since Grace had fallen asleep and during that time the nurses would move in and our of her room as quiet as angels, making sure she was doing the best she could be doing.
I never wanted to leave when her parents arrived in the early morning hours, but I knew it was their shift, their time with Grace. After about an hour visit with them each of the last three mornings I would tell Grace I would be up to visit and check in with her and bring her a treat. A treat she would hardly even taste, but still brought a smile to both of our faces. A tradition, a memory, that would carry me to the day I take my final breath and am reunited with my little angel sister Grace.
I visited Grace a few hours ago and took her a jelly doughnut. I knew the tiniest of bite would be all she would take but it is the most favorite treat we shared together and I knew this would be the last time we did. When Grace sent me packing for the night, with instructions to sleep in my own bed and come see her first thing in the morning it was probably not going to be a good day for me tomorrow. There was a calm about her and I had noticed that my dad must of at some point today visited Grace as well, as his name had been crossed off her list and his card was no longer in her bag. She had asked that her mommy and daddy share this night with her, which also told me Grace is probably going to take her final breath on earth in the next 24 hours. Tonight when I was able to lay in my bed and drift off to sleep, it will be with 'our' IPOD shuffling through the many tunes Grace and I had shared of the past three months. When Justin Bieber's tunes played, I would do my best to experience Bieber Fever, which was a pinky swear between Grace and I.
"Promise me you will get Bieber Fever, he is good you know."
"Yes Grace, I promise. I will let the Fever hit me"
