poonwhalla
12-10-2008, 04:00 AM
Some of yous may know that I helped out with a benefit for a 8 year kid with cancer. The benefit raised over 7000 for the family and was great fun with 5 bands and good food. I didn't know the Mom really before it but have became a close friend of hers since. I am just posting this because it is a well written story and it is an inspiration for me to get off my ass and do something positive. Also if you guys could keep this kid in your thoughts/prayers I would appreciate it. I changed the color and font to represent her wrighting Here is her blog story:
this post is going to gut me...literally. it is why i have put it off for so long. well, in relative terms of time being the past six months of my own personal journey on this sphere. i have notes scattered about. they have been sitting beside my computer for weeks now, maybe even longer. they are stained and torn. they have fallen off the desk, been stepped on, relocated and had to be found. they caused me some distress when i thought they went missing, even though i couldn't even remember what words they held.
the first note i jotted down was "from the beginning on.." and then "descriptive." yes, that's it. but i knew it wouldn't be easy or painless, so i procrastinated. it's not that i have tremendous amounts of time anymore to sit on this chair and vomit words, i just know that once i have vomited these words i will feel relieved. a pretty sordid metaphor, i know. but it is reflective of the goings on in my world as of late.
small words jotted down were saving bands, gift shop, door, vacation??, only good/positive, becomes routine, good rooms, parents walking up and down the hallway with or without child in tow, the Ronald McDonald Family Room. i now look at all of these words and in my head they are the complete story. but that is in my head, not you, the reader's. and so, here i go.
most of you know the story thus far. my 8 1/2 y.o. son (who just turned nine in november) was diagnosed early june with ewing's sarcoma, a rare, aggressive childhood bone cancer. things moved at the speed of sound and to surmise, he now has 11 out of 14 rounds of chemotherapy under his belt or should i say throughout his little body, he is now the proud owner of a titanium femur and knee joint, as the bone he was given by his creator was riddled with a tumour. a tumour made of cancerous cells that do not relinquish or stop...they go for the jugular. he has had about six blood transfusions (i've lost count) and has had three emergency admissions for bacterial infections of one sort or another. one was a horrendous bowel infection which is common for chemo patients which presents not only as violent diarrhea and stomach cramping but also releases the stench of it's bacteria through the patient's pores. yes, it's gross. yes, i could have left it out. but, it did not leave itself out of the picture. it felt a need to make an appearance in my child's body. medically, it is a result of the various chemotherapy drugs killing all of the good flora in your intestines and bowels. just as it kills every good and growing cell in your body as it is not smart enough to differentiate between the good, the bad, and the ugly. as cunning and vicious of a disease that it is, i guess one could say it really isn't that smart.
so you begin to take your places in the play that is about to begin. you obviously do not physically or mentally feel exactly what he is going through. you are physically sick with the idea of this intruder in your baby's body. you are mentally distraught and angry for the same reason. you cannot let on to any of this in fear of scaring or crushing this child's spirit. and this is something just as crucial to healing as all of the toxic cocktails and lengthy surgeries he encounters. you plod along. you think you're doing great. everyone thinks you are doing great and they are proud of you and they tell you. they tell him how "brave" he is. how "strong" he is. how "mature" he is in handling this. he's 8, he wants to be brave in scaling a tree or trying out a new adventure. he is 8, he wants to be strong and be able to lift heavy things, and admire his growing muscles in the mirror. he is 8, he really doesn't want to be mature at all. he wants to be 8..well actually he wants to be 8 1/2 and then 9..because that is what kids do. they want to get older because they think it will be more liberating and more fun. no comment. he did not want to be brave for a cancer diagnosis. he did not want to be brave for the insertion of a central line in his chest. he did not want to be brave for two surgeries, one which replaced roughly 80% of his leg, and left him having to learn to walk again. he does not want to be strong when chemotherapy makes him sick to his stomach, makes him lose his hair including eyebrows and eyelashes. he does not want to be strong for nasty bowel infections that leave sores on his bottom, or pressure sores that were caused by a week in bed post operative. he doesn't want to be strong as he watches bags of blood being pumped into his line. let's face it, it makes you queasy. and he certainly does not want to be any more mature than he needs to be right now for an 8 year old. he is tired of being awakened at the crack of dawn by doctors who drill him for information on how he feels..where is the pain? has it changed? is there pain? how does that incision look today? how does it look compared to yesterday, a week ago, a month ago, the day after surgery??? and yes, they expect him to answer. and the sad thing is that he does. because this is all being done to his body..no one elses. and now he is learning to become fearful. he worries about every little change. when his fingernails began to thin and fall off, he cried..he did not know why it was happening. when his incision appeared infected after his biopsy, he shook and cried, because he was afraid this was something bad. please, no more bad. there can't possibly be any more bad. this is more bad than i ever thought was possible. i know this is what he thinks/thought. i was 8 once. i was innocent once. he has had this taken from him and from now on he will be fearful. and that sucks..because we all know the value of fear. none. eastern philosophy, christian philosophy, "there is nothing to fear but fear itself...." and so it goes. but now he is fearful and he doesn't want to be, but it has crept it's way into him.
so now i will try and weave the story i want to weave. the pattern i will make from the words i have jotted. the tapestry, if you will, of our lives these past six months. we save bands. hospital identification bands. we have the option of getting them cut off at the nurses station after each discharge, but for some reason he wanted to keep his on until he got home. let's cut them off with our scissors, scissors that represent us and not an oncology ward in a children's hospital. so, we all started. i have mine in my desk drawer. he has his in one of his little treasure boxes in his room i believe. his dad has them filed with the admission paperwork for the appropriate date. (just an aside, my phone alarm just went off..3:00 a.m...last thursday or friday whilst in hospital for his emergency admission i set my alarm so that i could give him his medicine and that i could hold his hand while he got his nightly shot, this is in between the every 15 minute urine collections that i do throughout the night since he is being so heavily hydrated to flush the toxins out of his tender body) yes, it is 3:00 a.m. and i am vomiting on this screen through the keystrokes of my tired fingers. but at least i am not waking up to give him meds or hold his hand. that is a blessing.
next note: gift shop. yes, the hospital gift shop. for the first 3 or 4 admissions this made it all better. never being denied whatever it is you wanted from this little shop of happiness in this place. this is what being an 8 year old is. not all the other crap. and trust me, i made at least three trips there a day. well, they do have starbucks coffee there that serve up, but...they have all those smile makers. i have left a small fortune there. well, probably a large fortune. and whatever it took, even if the smile lasted only an hour, i bought it. there were those times when his eyes widened so much and he was so excited to play with his new present. but within five or ten minutes, he became exhausted. "can you get these off my bed, mommy?" i want to roll over and get some sleep. crush me. so much for that bit of happiness..the ugly truth has once again crept in.
his "door." on his first chemo admission one of the girls from the child life team came by and had us fill out a questionnaire. favourite food? least favourite? favourite thing to do? interests, hobbies, sibling, pets, where would you like to go?? you name it. it was embellished quite professionally with stickers and laminated. this was his shield. his medal of honor and bravery that we hang on his door for every chemo round to show passersby what a beautiful and strong and brave and mature child is resting behind this door. it's what you do when you are there. you pass by the rooms. you read the signs. you laugh. you pray. you don't want to know what is ravaging that little person in that room. they are six months old, one year old, two, three...on it goes. babies with feeding tubes grazing their cheeks. babies and toddlers with iv poles glued to them like their best teddy bear. they are being cradled and carried by mom or dad and you can't even bear to look into the eyes of mom or dad. because they are feeling the pain and the hurt and the fear. just as much as their child. it is sickening.
when i packed for matthew's first round (they are either three day stays or five night stays) i went to wal mart and got a little cheap cosmetic case. i packed my clothes. i packed a book, some snacks. just as one would do for a vacation. i have had two vacations in the past 14 years. in a sick way, this was exciting for me. it was a change of scenery. it was a place where the good was going to happen. where the bad would go away. i try to still hold on to that, but it is waning. now i look at those little travel size bottles and that wal mart case, and i curse them. i am tired of looking at them. this is a bittersweet trip..good things happening to fix a bad, bad problem. this is becoming way too much for me. it is now becoming routine. waking up every fifteen minutes every night for 3 or 4 nights for pee collection, stumbling half asleep and almost falling down as if you are drunk. answering "mommy?" at least 20 times an hour. being your son's arms and legs and strength. and all the while, keeping on that happy face. as you can imagine, about this time in this story both being typed and being lived, i am falling apart. all the tranquilizers and mood stabilizers and anti depressants and anti anxiety meds do nothing in this situation. your mind is powerful. it is negating every effect of these drugs. i resort to wine. a lot. sometimes wine isn't enough..vodka may do the trick. it is an escape, it is running away..but right now it needs to be done. unless there is someone that can come here and pick me up and whisk me away to "days of future passed" where this never happened. and we know..that is not going to happen.
the "good rooms." you become accustomed to the layout of the oncology floor. the old section, the new section. the new, big rooms with computers and play station and close proximity to a kitchen. the small, dimly lit, poorly heated/cooled rooms, where you get an anxiety attack if more than two people are in the room. you have to move the furnishings around just to get at your case. or his crutches. those rooms suck. the patients know it, the nurses know it, the docs know it. but unfortunately, the hospital is running out of room. there are that many sick kids. something is terribly wrong here. it is sickening.
the Ronald McDonald Family Room. through the generosity of donors and supporters there is a room at the end of the unit with a couch and a tv, it is homey...it has a wooden book case with bookds and magazines and little whimsical, decorative trinkets on it. there is a laundry room provided. there is a kitchen table so you can escape every once in awhile and if your child can be unhooked, you can sit and eat a meal at a table and sitting on a chair. if he needs to take his pole, you can just "plug him in there." there are refrigerators to store favourite foods from home. the Ronald McDonald house makes drop offs a few times a week of snacks and easy to eat foods. a few times a month they provide a dinner and a breakfast. little things that mean so much when you are in this environment for so long.
i am getting tired right now, my friends so i am going to wrap this up the best i can. there is so much i have left out. matthew has just been hospitalized this week for high fever. they believe the source of the infection is his leg. they are not sure if it is superficial at the incision site or further down in the tissue, or even around the endo prosthetic bone. since it is a metal bone, there really isn't any way to tell. we can only hope that he responds well to his new three month course of antibiotics and it goes away. we do not need any more problems. with the end of chemo drawing near, we want this all behind us. we will always have to worry whether it will reappear. i am already making myself sick over this, but i am keeping it to myself. i can only hope for the best. i do not need any odd infection of unknown origin to bed down in matt's body. enough is enough. i am starting to twitch. my nervous induced tourette's is starting to reappear..i talk loudly and erratically alone in my room.. i curse, i scream, i yell at everyone and at no one simultaneously. my long gone ocd is back. i feel that i have caused this to happen. i feel that every now that i do, what i say, what i wear, what color i wear, what way i position things in my bag, i feel these are all going to bring him additional harm. i had conquered this. but as with all mental disease, it waxes and wanes at times of extreme stress and lifestyle changes. i don't have enough time to go into the latter of those two. my close friends know all about that. i am scaring myself. i feel helpless, hopeless and alone. i want to hug this boy and not let go forever. although we know that is not an option. i haven't even touched on my older son. he has a heart of gold. he love for his brother transcends all else. he feels his pain..i see it, i hear it. it has been a horrible year for him and being almost 14, this is a very transitional age to go through something like this. oh did i mention i hear "mom??" in my head every three seconds whether it is there or not..it just happened. but no one actually called.
i am ending his on a very difficult note for me. now i am the type of person that would never say the "c" word in fear that i would happen. i did not buy the lemon tastycakes last year that benefited alex's lemonade stand, because to me that was a sure ticket in. when i was pregnant with matt and they thought he may have had down's i felt as if all i ever saw were down's children, and i would look away...i was scared. i felt as if this was a definite in your face warning to me. i have litte stupid rituals that i do to avoid bad luck, or bad things, and the funny thing is that when something bad happens you say, "ok..so which thing was it that i did that caused this?" and of course, you can't remember. of course, it's a ridiculous assumption and a ludicrous way of looking at things. but the mind is powerful. and it will take your weakest piece and torture you and torment you with it.
so with this i end by saying that a little girl whose name i know from the sign on her door, lost her battle last night. right on our floor, just a few doors down. i am trying to place the face. i know her mom's face. i think i know that baby's face, but i am blocking it out. she was three. she didn't have much of a chance to start with (so i was told) but that doesn't matter. what matters is the hurt to follow. the tease of having this little piece of you for such a short time. one of those ugly, nasty, sickening side effects of life. and if you try and think of every thing to do to prevent this, you will drive yourself crazy..because you cannot control it. and i know this..and yet i don't.
so....my friends. there is so much more i can say..but this is the raw, unadulterated version. this is life. this is that other end of life which i cannot bring my fingers to type, because i just can't.. in fear. my spirituality has not suffered. i am not committed to one belief system, and i am sure many people may have a problem with that, but i truly believe that the good energy comes from more than one historical or hypothesized leader. and i do not feel bad about that. i feel good about that. it is a reassurance to me that disease and bad things do not discriminate. as hard as it is, i have to see it not as a punishment. although i still have that battle of karma within my head. as a child i was slightly clairvoyant, it has followed me in my adulthood. i do not know things that will happen, but i feel change. i am intuitive..i can sort things out and figure them out with the least and vaguest of words. i don't like that about myself. i want to be naive. i can't be for whatever reason.
this piece as written extremely haphazardly. i do not use proper punctuation although i am certainly educated in it. it slows me down. it is not me. i am not a capital person. i am definitely lower case. i hope you read this and feel..not for me, not for matt..but for yourself. feel..and yes, if you can find it in you as awkward as you may feel, reach out to me..yes i am desperate..but i need distraction and reassurance and people that act without a care in the world, that is what i need right now. because for the most part, that is how i am, and i am angry that something is trying to take that away from me.
thanks to all of you who have been and remain there for me. some in particular have surprised me..in between the agitated conversations..i think this chapter in my life has struck a chord. i would feel your despair if it were you, whether it were solicited or not..because that is me.
i have made some friends on line via sarcoma groups and also one/two in particular who i met through fate. through a spirtual intervention that led me to a place i needed to be and a place that i can go to whenever i need to, albeit it virtually.
i want to visit india..i want to visit england. england will give me the smiles and the support of some good mates i have yet to meet. india will give me the spirituality and the self expression i have been trying to release my entire life. i am being drawn there via something that i feel i must follow. i need to release my "self" in order to heal him. i wish you all peace, warmth, calm of mind and happiness of heart. i wish you all love in whatever that means to you, and i wish you the dharma to live your days in the best way you can so as to be kind to your self and your earth mates. peace, shanti, hari om, salaam alekyum (it is late so the spelling is probably way off, i will fix...) and to all of you...my love...xxx
posted by peacegal
this post is going to gut me...literally. it is why i have put it off for so long. well, in relative terms of time being the past six months of my own personal journey on this sphere. i have notes scattered about. they have been sitting beside my computer for weeks now, maybe even longer. they are stained and torn. they have fallen off the desk, been stepped on, relocated and had to be found. they caused me some distress when i thought they went missing, even though i couldn't even remember what words they held.
the first note i jotted down was "from the beginning on.." and then "descriptive." yes, that's it. but i knew it wouldn't be easy or painless, so i procrastinated. it's not that i have tremendous amounts of time anymore to sit on this chair and vomit words, i just know that once i have vomited these words i will feel relieved. a pretty sordid metaphor, i know. but it is reflective of the goings on in my world as of late.
small words jotted down were saving bands, gift shop, door, vacation??, only good/positive, becomes routine, good rooms, parents walking up and down the hallway with or without child in tow, the Ronald McDonald Family Room. i now look at all of these words and in my head they are the complete story. but that is in my head, not you, the reader's. and so, here i go.
most of you know the story thus far. my 8 1/2 y.o. son (who just turned nine in november) was diagnosed early june with ewing's sarcoma, a rare, aggressive childhood bone cancer. things moved at the speed of sound and to surmise, he now has 11 out of 14 rounds of chemotherapy under his belt or should i say throughout his little body, he is now the proud owner of a titanium femur and knee joint, as the bone he was given by his creator was riddled with a tumour. a tumour made of cancerous cells that do not relinquish or stop...they go for the jugular. he has had about six blood transfusions (i've lost count) and has had three emergency admissions for bacterial infections of one sort or another. one was a horrendous bowel infection which is common for chemo patients which presents not only as violent diarrhea and stomach cramping but also releases the stench of it's bacteria through the patient's pores. yes, it's gross. yes, i could have left it out. but, it did not leave itself out of the picture. it felt a need to make an appearance in my child's body. medically, it is a result of the various chemotherapy drugs killing all of the good flora in your intestines and bowels. just as it kills every good and growing cell in your body as it is not smart enough to differentiate between the good, the bad, and the ugly. as cunning and vicious of a disease that it is, i guess one could say it really isn't that smart.
so you begin to take your places in the play that is about to begin. you obviously do not physically or mentally feel exactly what he is going through. you are physically sick with the idea of this intruder in your baby's body. you are mentally distraught and angry for the same reason. you cannot let on to any of this in fear of scaring or crushing this child's spirit. and this is something just as crucial to healing as all of the toxic cocktails and lengthy surgeries he encounters. you plod along. you think you're doing great. everyone thinks you are doing great and they are proud of you and they tell you. they tell him how "brave" he is. how "strong" he is. how "mature" he is in handling this. he's 8, he wants to be brave in scaling a tree or trying out a new adventure. he is 8, he wants to be strong and be able to lift heavy things, and admire his growing muscles in the mirror. he is 8, he really doesn't want to be mature at all. he wants to be 8..well actually he wants to be 8 1/2 and then 9..because that is what kids do. they want to get older because they think it will be more liberating and more fun. no comment. he did not want to be brave for a cancer diagnosis. he did not want to be brave for the insertion of a central line in his chest. he did not want to be brave for two surgeries, one which replaced roughly 80% of his leg, and left him having to learn to walk again. he does not want to be strong when chemotherapy makes him sick to his stomach, makes him lose his hair including eyebrows and eyelashes. he does not want to be strong for nasty bowel infections that leave sores on his bottom, or pressure sores that were caused by a week in bed post operative. he doesn't want to be strong as he watches bags of blood being pumped into his line. let's face it, it makes you queasy. and he certainly does not want to be any more mature than he needs to be right now for an 8 year old. he is tired of being awakened at the crack of dawn by doctors who drill him for information on how he feels..where is the pain? has it changed? is there pain? how does that incision look today? how does it look compared to yesterday, a week ago, a month ago, the day after surgery??? and yes, they expect him to answer. and the sad thing is that he does. because this is all being done to his body..no one elses. and now he is learning to become fearful. he worries about every little change. when his fingernails began to thin and fall off, he cried..he did not know why it was happening. when his incision appeared infected after his biopsy, he shook and cried, because he was afraid this was something bad. please, no more bad. there can't possibly be any more bad. this is more bad than i ever thought was possible. i know this is what he thinks/thought. i was 8 once. i was innocent once. he has had this taken from him and from now on he will be fearful. and that sucks..because we all know the value of fear. none. eastern philosophy, christian philosophy, "there is nothing to fear but fear itself...." and so it goes. but now he is fearful and he doesn't want to be, but it has crept it's way into him.
so now i will try and weave the story i want to weave. the pattern i will make from the words i have jotted. the tapestry, if you will, of our lives these past six months. we save bands. hospital identification bands. we have the option of getting them cut off at the nurses station after each discharge, but for some reason he wanted to keep his on until he got home. let's cut them off with our scissors, scissors that represent us and not an oncology ward in a children's hospital. so, we all started. i have mine in my desk drawer. he has his in one of his little treasure boxes in his room i believe. his dad has them filed with the admission paperwork for the appropriate date. (just an aside, my phone alarm just went off..3:00 a.m...last thursday or friday whilst in hospital for his emergency admission i set my alarm so that i could give him his medicine and that i could hold his hand while he got his nightly shot, this is in between the every 15 minute urine collections that i do throughout the night since he is being so heavily hydrated to flush the toxins out of his tender body) yes, it is 3:00 a.m. and i am vomiting on this screen through the keystrokes of my tired fingers. but at least i am not waking up to give him meds or hold his hand. that is a blessing.
next note: gift shop. yes, the hospital gift shop. for the first 3 or 4 admissions this made it all better. never being denied whatever it is you wanted from this little shop of happiness in this place. this is what being an 8 year old is. not all the other crap. and trust me, i made at least three trips there a day. well, they do have starbucks coffee there that serve up, but...they have all those smile makers. i have left a small fortune there. well, probably a large fortune. and whatever it took, even if the smile lasted only an hour, i bought it. there were those times when his eyes widened so much and he was so excited to play with his new present. but within five or ten minutes, he became exhausted. "can you get these off my bed, mommy?" i want to roll over and get some sleep. crush me. so much for that bit of happiness..the ugly truth has once again crept in.
his "door." on his first chemo admission one of the girls from the child life team came by and had us fill out a questionnaire. favourite food? least favourite? favourite thing to do? interests, hobbies, sibling, pets, where would you like to go?? you name it. it was embellished quite professionally with stickers and laminated. this was his shield. his medal of honor and bravery that we hang on his door for every chemo round to show passersby what a beautiful and strong and brave and mature child is resting behind this door. it's what you do when you are there. you pass by the rooms. you read the signs. you laugh. you pray. you don't want to know what is ravaging that little person in that room. they are six months old, one year old, two, three...on it goes. babies with feeding tubes grazing their cheeks. babies and toddlers with iv poles glued to them like their best teddy bear. they are being cradled and carried by mom or dad and you can't even bear to look into the eyes of mom or dad. because they are feeling the pain and the hurt and the fear. just as much as their child. it is sickening.
when i packed for matthew's first round (they are either three day stays or five night stays) i went to wal mart and got a little cheap cosmetic case. i packed my clothes. i packed a book, some snacks. just as one would do for a vacation. i have had two vacations in the past 14 years. in a sick way, this was exciting for me. it was a change of scenery. it was a place where the good was going to happen. where the bad would go away. i try to still hold on to that, but it is waning. now i look at those little travel size bottles and that wal mart case, and i curse them. i am tired of looking at them. this is a bittersweet trip..good things happening to fix a bad, bad problem. this is becoming way too much for me. it is now becoming routine. waking up every fifteen minutes every night for 3 or 4 nights for pee collection, stumbling half asleep and almost falling down as if you are drunk. answering "mommy?" at least 20 times an hour. being your son's arms and legs and strength. and all the while, keeping on that happy face. as you can imagine, about this time in this story both being typed and being lived, i am falling apart. all the tranquilizers and mood stabilizers and anti depressants and anti anxiety meds do nothing in this situation. your mind is powerful. it is negating every effect of these drugs. i resort to wine. a lot. sometimes wine isn't enough..vodka may do the trick. it is an escape, it is running away..but right now it needs to be done. unless there is someone that can come here and pick me up and whisk me away to "days of future passed" where this never happened. and we know..that is not going to happen.
the "good rooms." you become accustomed to the layout of the oncology floor. the old section, the new section. the new, big rooms with computers and play station and close proximity to a kitchen. the small, dimly lit, poorly heated/cooled rooms, where you get an anxiety attack if more than two people are in the room. you have to move the furnishings around just to get at your case. or his crutches. those rooms suck. the patients know it, the nurses know it, the docs know it. but unfortunately, the hospital is running out of room. there are that many sick kids. something is terribly wrong here. it is sickening.
the Ronald McDonald Family Room. through the generosity of donors and supporters there is a room at the end of the unit with a couch and a tv, it is homey...it has a wooden book case with bookds and magazines and little whimsical, decorative trinkets on it. there is a laundry room provided. there is a kitchen table so you can escape every once in awhile and if your child can be unhooked, you can sit and eat a meal at a table and sitting on a chair. if he needs to take his pole, you can just "plug him in there." there are refrigerators to store favourite foods from home. the Ronald McDonald house makes drop offs a few times a week of snacks and easy to eat foods. a few times a month they provide a dinner and a breakfast. little things that mean so much when you are in this environment for so long.
i am getting tired right now, my friends so i am going to wrap this up the best i can. there is so much i have left out. matthew has just been hospitalized this week for high fever. they believe the source of the infection is his leg. they are not sure if it is superficial at the incision site or further down in the tissue, or even around the endo prosthetic bone. since it is a metal bone, there really isn't any way to tell. we can only hope that he responds well to his new three month course of antibiotics and it goes away. we do not need any more problems. with the end of chemo drawing near, we want this all behind us. we will always have to worry whether it will reappear. i am already making myself sick over this, but i am keeping it to myself. i can only hope for the best. i do not need any odd infection of unknown origin to bed down in matt's body. enough is enough. i am starting to twitch. my nervous induced tourette's is starting to reappear..i talk loudly and erratically alone in my room.. i curse, i scream, i yell at everyone and at no one simultaneously. my long gone ocd is back. i feel that i have caused this to happen. i feel that every now that i do, what i say, what i wear, what color i wear, what way i position things in my bag, i feel these are all going to bring him additional harm. i had conquered this. but as with all mental disease, it waxes and wanes at times of extreme stress and lifestyle changes. i don't have enough time to go into the latter of those two. my close friends know all about that. i am scaring myself. i feel helpless, hopeless and alone. i want to hug this boy and not let go forever. although we know that is not an option. i haven't even touched on my older son. he has a heart of gold. he love for his brother transcends all else. he feels his pain..i see it, i hear it. it has been a horrible year for him and being almost 14, this is a very transitional age to go through something like this. oh did i mention i hear "mom??" in my head every three seconds whether it is there or not..it just happened. but no one actually called.
i am ending his on a very difficult note for me. now i am the type of person that would never say the "c" word in fear that i would happen. i did not buy the lemon tastycakes last year that benefited alex's lemonade stand, because to me that was a sure ticket in. when i was pregnant with matt and they thought he may have had down's i felt as if all i ever saw were down's children, and i would look away...i was scared. i felt as if this was a definite in your face warning to me. i have litte stupid rituals that i do to avoid bad luck, or bad things, and the funny thing is that when something bad happens you say, "ok..so which thing was it that i did that caused this?" and of course, you can't remember. of course, it's a ridiculous assumption and a ludicrous way of looking at things. but the mind is powerful. and it will take your weakest piece and torture you and torment you with it.
so with this i end by saying that a little girl whose name i know from the sign on her door, lost her battle last night. right on our floor, just a few doors down. i am trying to place the face. i know her mom's face. i think i know that baby's face, but i am blocking it out. she was three. she didn't have much of a chance to start with (so i was told) but that doesn't matter. what matters is the hurt to follow. the tease of having this little piece of you for such a short time. one of those ugly, nasty, sickening side effects of life. and if you try and think of every thing to do to prevent this, you will drive yourself crazy..because you cannot control it. and i know this..and yet i don't.
so....my friends. there is so much more i can say..but this is the raw, unadulterated version. this is life. this is that other end of life which i cannot bring my fingers to type, because i just can't.. in fear. my spirituality has not suffered. i am not committed to one belief system, and i am sure many people may have a problem with that, but i truly believe that the good energy comes from more than one historical or hypothesized leader. and i do not feel bad about that. i feel good about that. it is a reassurance to me that disease and bad things do not discriminate. as hard as it is, i have to see it not as a punishment. although i still have that battle of karma within my head. as a child i was slightly clairvoyant, it has followed me in my adulthood. i do not know things that will happen, but i feel change. i am intuitive..i can sort things out and figure them out with the least and vaguest of words. i don't like that about myself. i want to be naive. i can't be for whatever reason.
this piece as written extremely haphazardly. i do not use proper punctuation although i am certainly educated in it. it slows me down. it is not me. i am not a capital person. i am definitely lower case. i hope you read this and feel..not for me, not for matt..but for yourself. feel..and yes, if you can find it in you as awkward as you may feel, reach out to me..yes i am desperate..but i need distraction and reassurance and people that act without a care in the world, that is what i need right now. because for the most part, that is how i am, and i am angry that something is trying to take that away from me.
thanks to all of you who have been and remain there for me. some in particular have surprised me..in between the agitated conversations..i think this chapter in my life has struck a chord. i would feel your despair if it were you, whether it were solicited or not..because that is me.
i have made some friends on line via sarcoma groups and also one/two in particular who i met through fate. through a spirtual intervention that led me to a place i needed to be and a place that i can go to whenever i need to, albeit it virtually.
i want to visit india..i want to visit england. england will give me the smiles and the support of some good mates i have yet to meet. india will give me the spirituality and the self expression i have been trying to release my entire life. i am being drawn there via something that i feel i must follow. i need to release my "self" in order to heal him. i wish you all peace, warmth, calm of mind and happiness of heart. i wish you all love in whatever that means to you, and i wish you the dharma to live your days in the best way you can so as to be kind to your self and your earth mates. peace, shanti, hari om, salaam alekyum (it is late so the spelling is probably way off, i will fix...) and to all of you...my love...xxx
posted by peacegal