Today we were supposed to extubate Maddox but I am just not ready. There are so many things going on in my head right now, I dont even know where to begin, which is also probably why I have been putting off my blog. I really need to sort things out upstairs though. Ive been kind of a mess inside...
Anyway, we decided not to extubate him kind of on a short notice. A few days ago, he was SO awake. We were interacting so well. He was listening to me and looking at me and moving around and it was just amazing. I couldnt leave his bed side. The next day he was like that again! Today he wasnt like that all that much. Some people have said that when death is near, they get this rush or something and seem better for a day or two. I dont know. I want to extubate him before the end of the week though. It doesnt seem real yet. I feel like I am still waiting for a miracle. There is no miracle in this situation. All I prayed for was just a few more days with him, and thats what I got was a few awesome days, so I guess this is it for us. I just dont want to see him not alive.
Thinking about the future helps me a lot. There are so many things I want to do. A few people gave me some great ideas. I am definitely going to be an RN now. Someone suggested that I could volunteer at a hospital and help out the kids whos fam never really comes and stuff and just do something like that with my time. This was brought up because I am always talking about the kids in the intensive care units whos family is never there. It makes me so sad. I understand some people have work but a lot of them just dont give a shit. The nurses and my aunt had told me about some horror stories about these horrible parents with sick children and it just made me really angry and I wanted to do something so my aunt suggested I could do that and now I have kind of been obsessing over the idea. Like there is this kid who was all alone all day and all he did was watch TV and play games by himself. I just wanted to go in there and hang out with him and let him know I cared. Idk. I am like that everywhere I go. At the store, at school, at home, in a hospital. I guess thats why I would make a good nurse. There need to be more caring people in this world. If I can make a difference, and which I can, I will...
I have been finding tons of parents with children who have Alagilles, Congenital Heart defects, and have just suffered child loss. Even though Maddox is still here, it kind of feels like I have already lost a part of him, cause I have. I lost his brand new smile, his voice, his scent, his snuggles, and eventually I will lose him all together. Thinking about it hurts so bad. Some moments more than others. Some times I will think and be like, okay its not that bad, everyone dies, I will see him again. Then some times I think OMG I will never see my baby again, my sweet baby, I will never hold him or smell him again, he will be buried in the ground, he will not look the same, I will miss him so much how will I handle this?! and then SOME TIMES I think like, okay, my son will pass away, it will be beautiful, he will not suffer, I will see him again, I will make the best out of my own life, and not dwell on the loss of his, I will remember him always and keep him close to my heart, I will cherish now and when the day comes when he goes to Heaven, I will keep it together and remember that this is not good bye. When I think like that, it doesnt hurt so bad. The thing is though, is that I hardly think like that at all. I think like that when I am around other people so that it doesnt hurt them as bad either. When I am alone is when I find myself feeling the complete hopelessness and tragic loss feeling.
I feel guilty all the time. Like when Maddox goes to Heaven, I feel like I will always be on my toes. Like he can read my thoughts or something. Like if I have a bad thought or a sexual thought or something, I try to block it out as if he would be watching everything I do. I feel like this would ruin any personal relationships I have. I dont know. I probably sound stupid. I guess when the time comes I will know how I will feel and what I will do. I have always kind of been like that when someone passes. Like when Andy passed away, the next day I was taking a poop, and thought to myself, is Andy watching me poop? LOL or if I dance in the mirror or do something stupid when I am alone, I feel like they are watching me and making fun of me in Heaven LOL I know it sounds silly but I think like that on a daily basis. I dont know if God can read my thoughts either but I always find myself asking him for forgiveness for my bad thoughts. As if he knows. He probably does but idk but I ask for forgiveness anyway.
I have these horrible nightmares that mess up my entire morning. I wont go into detail right now but they are so intense and I wake up confused with what reality is. Whether my life is a dream or my dream is my life. Its crazy. It makes me not want to sleep. Every night for the past week I have dreamed of Maddox dying and other horrible things. They are always bad. I have yet to have a good dream. I will try praying about it tonight, I want to have a dream where I meet Maddox in Heaven! That would be an amazing dream and would give me some peace of mind!
We have been doing a ton of memorial like things of him. Like we have done foot and hand molds and still have more to do. Also the kind where you press there hand into the plaster heart thing. I am working on a story book of his life with colored pencil pictures. Nothing spectacular but its cute. Ron and I have also been writing everything down so we dont forget. We have decided what items of his we want to keep, like his hospital bands, his finger nail clippings, his sheets and things like that. I will only keep the clothes he wore often and the outfit he came home in and stuff. Most of his stuff his brand new with tags so I plan on giving it to some friends that have little boys. I dont have a problem with giving his stuff away. Some people keep it all forever and are really anal about it and dont let anyone touch anything. I dont think I will be like that. Maddox is not a selfish baby. He would want me to share all of his things. Of course the really personal stuff I will keep but like all the toys and diapeys and crap that we never even used, I have no problem giving them away. After all its helping people out and thats what we want. I dont want people to feel weird like their kid is wearing a baby who passed aways stuff or something. I hope no one feels like that. Again, Maddox is not a selfish babe and likes to help people like his mama.
A few people have asked me if I plan on going back to regular school again. The answer is NO, in fact, I dont think I plan on even going back to my alternative school. Hopefully they will work with me and allow me to finish online because I really dont like other people my age. Like I went to a thanksgiving dinner at my school a few months ago, and I was so annoyed with everyone in my class. I seriously love all my teachers. If I could go to school and only have to deal with the teachers, Im game but I just cant deal with my annoying peers. Idk if thats how I am supposed to act but its just annoying. Even before Maddox I never acted like they do and was always annoyed with them. Plus, sometimes they disrespect and make fun of the teachers and it pisses me off bad. They also always keep secrets and break the rules in front of me, and me being friends with my teachers, I would probably want to say something. I dont understand why they have to act the way they do. They say such gross stuff. I wish they could just come to school, do their work, have some nice conversation when appropriate and leave lol Call me a teachers pet, I have cool teachers :O AND if I went back to regular school, I would feel weird as if I wasnt a mom anymore, like I am taking advantage of my sons death and going back to regular school. Even though I left regular school before I got pregnant, it wouldnt feel right. And once again, high school kids annoy me.
I am going to church tomorrow with Ron, at a friends church near Oak Lawn. The pastor has stopped by the bedside a few times and has given us some really good insight. I have been praying more and more the past year. I feel like God and I have developed some type of relationship. I dont feel the LOVE and WARMTH yet that everyone talks about but I think I may soon. I am straight up with him. I tell him of my skeptics and ask for help with them, I let him know that I am confused sometimes and I ask for help. I also thank him for every little thing lately. I think it will get better with time. I dont know about church yet but we are going tomorrow so I guess I will see how I like it. I have not been to church in ages so we will see. The church I used to go to would drag on for hours and by that time we were all kickin to get out of there. The pastor made this church seem more simple and it is only for an hour so I can actually enjoy the time there instead of itching to get out. I feel like this could be something good and I am excited to go. It starts at 11 so its not terribly early. I might just like this lol. Also, might I add that a few of my prayers have been answered. I asked for peace and I have been more peaceful lately, I asked for my family to be here more and they are here more, I asked for a few more days with Maddox and I got a few more great days! This God guy might not be so bad. I have always doubted him thinking God and Heaven is just a bunch of shinanagins and that people just believe it because it makes them feel better. In which is DOES make you feel better. If I did not believe in God and Heaven, I would be even more devestated that my babys life is ending. But because I believe, his life is not ending, it is just beginning. I love the saying
"we are spiritual beings in a human experience"
It makes me feel better. After all, the human experience is not that great. Ive been hurt so many times and had so many things go wrong, and to think that my baby boy will not suffer anything I had to go through, brings me comfort. In a way he is kind of lucky. He gets to skip the hard ships of life and move on straight to Heaven. The most beautiful place one could be. I know as selfish as I am I would rather have him here but I cant so I might as well look at the bright side of it. I cant always look at it this way but I try to as much as I can, and when I start to think negatively, I just remember these things...
Anyway, we decided not to extubate him kind of on a short notice. A few days ago, he was SO awake. We were interacting so well. He was listening to me and looking at me and moving around and it was just amazing. I couldnt leave his bed side. The next day he was like that again! Today he wasnt like that all that much. Some people have said that when death is near, they get this rush or something and seem better for a day or two. I dont know. I want to extubate him before the end of the week though. It doesnt seem real yet. I feel like I am still waiting for a miracle. There is no miracle in this situation. All I prayed for was just a few more days with him, and thats what I got was a few awesome days, so I guess this is it for us. I just dont want to see him not alive.
Thinking about the future helps me a lot. There are so many things I want to do. A few people gave me some great ideas. I am definitely going to be an RN now. Someone suggested that I could volunteer at a hospital and help out the kids whos fam never really comes and stuff and just do something like that with my time. This was brought up because I am always talking about the kids in the intensive care units whos family is never there. It makes me so sad. I understand some people have work but a lot of them just dont give a shit. The nurses and my aunt had told me about some horror stories about these horrible parents with sick children and it just made me really angry and I wanted to do something so my aunt suggested I could do that and now I have kind of been obsessing over the idea. Like there is this kid who was all alone all day and all he did was watch TV and play games by himself. I just wanted to go in there and hang out with him and let him know I cared. Idk. I am like that everywhere I go. At the store, at school, at home, in a hospital. I guess thats why I would make a good nurse. There need to be more caring people in this world. If I can make a difference, and which I can, I will...
I have been finding tons of parents with children who have Alagilles, Congenital Heart defects, and have just suffered child loss. Even though Maddox is still here, it kind of feels like I have already lost a part of him, cause I have. I lost his brand new smile, his voice, his scent, his snuggles, and eventually I will lose him all together. Thinking about it hurts so bad. Some moments more than others. Some times I will think and be like, okay its not that bad, everyone dies, I will see him again. Then some times I think OMG I will never see my baby again, my sweet baby, I will never hold him or smell him again, he will be buried in the ground, he will not look the same, I will miss him so much how will I handle this?! and then SOME TIMES I think like, okay, my son will pass away, it will be beautiful, he will not suffer, I will see him again, I will make the best out of my own life, and not dwell on the loss of his, I will remember him always and keep him close to my heart, I will cherish now and when the day comes when he goes to Heaven, I will keep it together and remember that this is not good bye. When I think like that, it doesnt hurt so bad. The thing is though, is that I hardly think like that at all. I think like that when I am around other people so that it doesnt hurt them as bad either. When I am alone is when I find myself feeling the complete hopelessness and tragic loss feeling.
I feel guilty all the time. Like when Maddox goes to Heaven, I feel like I will always be on my toes. Like he can read my thoughts or something. Like if I have a bad thought or a sexual thought or something, I try to block it out as if he would be watching everything I do. I feel like this would ruin any personal relationships I have. I dont know. I probably sound stupid. I guess when the time comes I will know how I will feel and what I will do. I have always kind of been like that when someone passes. Like when Andy passed away, the next day I was taking a poop, and thought to myself, is Andy watching me poop? LOL or if I dance in the mirror or do something stupid when I am alone, I feel like they are watching me and making fun of me in Heaven LOL I know it sounds silly but I think like that on a daily basis. I dont know if God can read my thoughts either but I always find myself asking him for forgiveness for my bad thoughts. As if he knows. He probably does but idk but I ask for forgiveness anyway.
I have these horrible nightmares that mess up my entire morning. I wont go into detail right now but they are so intense and I wake up confused with what reality is. Whether my life is a dream or my dream is my life. Its crazy. It makes me not want to sleep. Every night for the past week I have dreamed of Maddox dying and other horrible things. They are always bad. I have yet to have a good dream. I will try praying about it tonight, I want to have a dream where I meet Maddox in Heaven! That would be an amazing dream and would give me some peace of mind!
We have been doing a ton of memorial like things of him. Like we have done foot and hand molds and still have more to do. Also the kind where you press there hand into the plaster heart thing. I am working on a story book of his life with colored pencil pictures. Nothing spectacular but its cute. Ron and I have also been writing everything down so we dont forget. We have decided what items of his we want to keep, like his hospital bands, his finger nail clippings, his sheets and things like that. I will only keep the clothes he wore often and the outfit he came home in and stuff. Most of his stuff his brand new with tags so I plan on giving it to some friends that have little boys. I dont have a problem with giving his stuff away. Some people keep it all forever and are really anal about it and dont let anyone touch anything. I dont think I will be like that. Maddox is not a selfish baby. He would want me to share all of his things. Of course the really personal stuff I will keep but like all the toys and diapeys and crap that we never even used, I have no problem giving them away. After all its helping people out and thats what we want. I dont want people to feel weird like their kid is wearing a baby who passed aways stuff or something. I hope no one feels like that. Again, Maddox is not a selfish babe and likes to help people like his mama.
A few people have asked me if I plan on going back to regular school again. The answer is NO, in fact, I dont think I plan on even going back to my alternative school. Hopefully they will work with me and allow me to finish online because I really dont like other people my age. Like I went to a thanksgiving dinner at my school a few months ago, and I was so annoyed with everyone in my class. I seriously love all my teachers. If I could go to school and only have to deal with the teachers, Im game but I just cant deal with my annoying peers. Idk if thats how I am supposed to act but its just annoying. Even before Maddox I never acted like they do and was always annoyed with them. Plus, sometimes they disrespect and make fun of the teachers and it pisses me off bad. They also always keep secrets and break the rules in front of me, and me being friends with my teachers, I would probably want to say something. I dont understand why they have to act the way they do. They say such gross stuff. I wish they could just come to school, do their work, have some nice conversation when appropriate and leave lol Call me a teachers pet, I have cool teachers :O AND if I went back to regular school, I would feel weird as if I wasnt a mom anymore, like I am taking advantage of my sons death and going back to regular school. Even though I left regular school before I got pregnant, it wouldnt feel right. And once again, high school kids annoy me.
I am going to church tomorrow with Ron, at a friends church near Oak Lawn. The pastor has stopped by the bedside a few times and has given us some really good insight. I have been praying more and more the past year. I feel like God and I have developed some type of relationship. I dont feel the LOVE and WARMTH yet that everyone talks about but I think I may soon. I am straight up with him. I tell him of my skeptics and ask for help with them, I let him know that I am confused sometimes and I ask for help. I also thank him for every little thing lately. I think it will get better with time. I dont know about church yet but we are going tomorrow so I guess I will see how I like it. I have not been to church in ages so we will see. The church I used to go to would drag on for hours and by that time we were all kickin to get out of there. The pastor made this church seem more simple and it is only for an hour so I can actually enjoy the time there instead of itching to get out. I feel like this could be something good and I am excited to go. It starts at 11 so its not terribly early. I might just like this lol. Also, might I add that a few of my prayers have been answered. I asked for peace and I have been more peaceful lately, I asked for my family to be here more and they are here more, I asked for a few more days with Maddox and I got a few more great days! This God guy might not be so bad. I have always doubted him thinking God and Heaven is just a bunch of shinanagins and that people just believe it because it makes them feel better. In which is DOES make you feel better. If I did not believe in God and Heaven, I would be even more devestated that my babys life is ending. But because I believe, his life is not ending, it is just beginning. I love the saying
"we are spiritual beings in a human experience"
It makes me feel better. After all, the human experience is not that great. Ive been hurt so many times and had so many things go wrong, and to think that my baby boy will not suffer anything I had to go through, brings me comfort. In a way he is kind of lucky. He gets to skip the hard ships of life and move on straight to Heaven. The most beautiful place one could be. I know as selfish as I am I would rather have him here but I cant so I might as well look at the bright side of it. I cant always look at it this way but I try to as much as I can, and when I start to think negatively, I just remember these things...
So the doctor just came in and told me that he is scared Maddox will not even make it to Sunday. FOUR more days. I think my little guy can do it. Maybe this is the one thing we will get. Just to make it to Sunday. That is all I want right now. I have cut my prayers down to such small things.
"God thank you but please let Maddox at least make it til hes 20s"
"God thank you but please let Maddox make it till he is 6"
"God thank you but please let Maddox be well enough to live and go home for a few weeks"
"God thank you but please let Maddox just make it two weeks"
"God than you but please let Maddox make it to SUNDAY PLEASE"
Its like a burning sensation of hopelessness. I have no control over this. It hurts so bad. It is so scary.
Last night I had a dream Maddox passed away. He passed away and he didnt look real. He looked like a little plastic doll. Then he came back to life and then passed again. That is my fear, is that his heart will stop and then start again. I know it sounds silly. I even asked the nurse if that could happen and she said she has never seen it happen. It probably wont but idk I am just stupid. I always have those kind of dreams though. Where he dies then comes back to life and so on.
It is becoming more real. I just really hope it doesnt happen suddenly. I just want it to happen Sunday. Thats all I ask. Sunday.
"God thank you but please let Maddox at least make it til hes 20s"
"God thank you but please let Maddox make it till he is 6"
"God thank you but please let Maddox be well enough to live and go home for a few weeks"
"God thank you but please let Maddox just make it two weeks"
"God than you but please let Maddox make it to SUNDAY PLEASE"
Its like a burning sensation of hopelessness. I have no control over this. It hurts so bad. It is so scary.
Last night I had a dream Maddox passed away. He passed away and he didnt look real. He looked like a little plastic doll. Then he came back to life and then passed again. That is my fear, is that his heart will stop and then start again. I know it sounds silly. I even asked the nurse if that could happen and she said she has never seen it happen. It probably wont but idk I am just stupid. I always have those kind of dreams though. Where he dies then comes back to life and so on.
It is becoming more real. I just really hope it doesnt happen suddenly. I just want it to happen Sunday. Thats all I ask. Sunday.
Big prayers your way Brooke... I am glad you got to know your little Maddox... Wish I could give you a great big hug!
ReplyDelete