Showing posts with label CYSTIC FIBROSIS. Show all posts
Showing posts with label CYSTIC FIBROSIS. Show all posts
Tuesday, June 1, 2010
Verbal Vomit
Nothing good is coming in my mind today...so today I'm allowing myself to expel all of this negativity out of my brain, so that maybe it won't continue to eat me alive today. i'm going to now shut off my brain and just type whats in my heart...hope maybe it makes sense...
i'm so pissed off.
today i'm so beyond emotional. i don't think there's an emotion for the way i feel today. i want it to end. all of this crap. i want to get up tomorrow morning and not think about death. wish so much that i didn't have to walk thru this valley of the shadow of death...but that i can run thru it. that it will stop following me. everywhere i go. clouding my every single thought. i want to pick up and go to the store with my children if i so choose. i dont' want to have to find someone to sit with Conner or to pick up groceries for us. i want to not feel so overly helpless any longer. i want to recall conners childhood with fond memories, not ones now filled with bitterness because at the time i didn't understand just how blessed we used to be. we are still so very blessed now, but it's different. he used to eat. he used to run. he used to smile without pain. we used to go thru days without once thinking or talking about heaven. i used to be able to drive past a cemetary and not even think twice...didn't have to glance in to see what its like. not anymore. our blessings are different now. but they all revolve around death. i'm so angry. so angry. actually anger doesn't even sum up a fraction of my feelings. there is just no word strong enough. he used to be free to dance and play and sing and run and smile and laugh and go to school and see his friends and go to bible camp in the summer and swim in a pool and live without iv's and go to the hospital knowing we'd be going home healthier and go to clinic and gets smiles from the doctors...we used to plan for the future, take family vacations, hell even just plan family vacations knowing we'd all be there. going thru a day without thinking about or planning in my mind even just one aspect of a funeral is just not my reality anymore. thinking about finding a plot for my sons body to rest, listening to him cry because he wants his doctors to help him breathe, having to think about what size of a coffin would best fit a 7 year old boy, listening to others take all of this life so for granted. yelling at their kids cus they couldn't tie a shoe or because they'd be a moment late to something of unimportance...it's just frustrating. going to mine or my husbands doctor appointments and even our own doctor crying over what we're going thru. the simpathy. the piles of cards. the prayers. the well wishes. it's all just so discouraging to me today. because why is this for us?
why does this have to happen to us?
to our family?
to our son?
why is there money waiting in this beautiful account from beautiful people, just sitting there, mocking me...waiting for him to die so it can be spent? why? how in the hell am i supposed to run thru this valley of death....when i cant hardly find the courage or the strength to stand up in it? to find a way to really live in it. i can't imagine living past it. this anger is so deep and is directed at nothing. not a person. not god. nothing. it simply is. a new part of my daily life, or hopefully just a few days here and there of my life. i still have to function. i still have to cook. to clean. to wipe noses. to gather ivs and meds and supplies and breathing treatments and bolus feedings and grocery shop and mow the lawn and hug the kids and my husband and order everything we need...the world simply doesn't stop for death.
it pushes you right thru it.
and it's not fair.
how in the hell am i supposed to greive or be FULLY aware and living in each moment with this damn reaper on my neck...sitting at our doorstep. just mocking us. just waiting. there can never be enough time. each day flies by and blends with the next one, and the one just before it. i try so hard to make each day quality. i hope that it is. because i don't feel alive. i only know that i am because of this despair in my heart. in my brain. in my body. each and every second.
i'm tired of hearing people say that this will pass. it won't. it never will. sure the time will come and he will earn those beautiful wings and be free from pain. but it will never pass. it will never be done. it will forever alter the way i live my life. how my family lives their lives. how can we be forced to grieve publicly the most intimate loss of our lives? it's horrific. theres no words for it. no person can fully understand these feelings. unless they've lived thru the loss of a child. no aunt or grandparent or cousin or friend or great grandparent can ever come close to imagining how we as parents are feeling. i remember planning his birth. how we spent months decorating his nursery, picking out clothing, fighting for his survival then finally meeting him. the fight in me grew ten fold that second i first held him. and now we're forced to plan his death. why? all of this is crowding my brain each and every second, i'm so absolutely exhausted just from what goes thru my brain each second....its no wonder i just can't find the energy to clean the house up or even make a sandwich to eat.
living....breathing....this upcoming disaster....my heart is fully raw, and broken and angry. there really just are no words. i'm just broken. and nobody i know quite understands. i'm more overprotective now than ever over our family of 5. i refuse to let others ruin the time we have with our son. i'm very selective who gets to spend time with us. because it can be a distraction. while they are good here and there, it really is time taken away from my sweet son. and i'm not willing to do that. where does this all end......where does it all go????????????? how will i ever learn to live with this new way of my life??? when will i be ok?
answer probably, is simply....never.
Monday, April 19, 2010
Won't you help us please...
Uhg.
I've met so many wonderful cystics this past week....honestly, some of the most well wishing, loving, supportive and god loving strangers I've ever had the pleasure of meeting. I've been weeding thru my hundreds of emails from these amazing people...and I just can't help but to think of that ugly bond we all have.
Cystic Fibrosis
Hearing all of the love given to our family, to our sweet Conner, and then in the same post to be introduced to those they are fighting for. Oh that is simply overwhelming. There are hundreds of tiny souls batteling this disease...and I hear..."my so-and-so is this old with CF and I simply can't imagine what you're feeling...." oh my heart is heavy. For you.
All of you.
Each person whose reached out to me this past week with loved ones suffering silently, and even not so silently with this disease...my heart is broken for you. My tears for you are endless. Because I pray that you will never know what I'm feeling today. With all my heart I pray you will never see your 18 month old angel fighting for their life...for your 5 year olds...for your 25 year old daughter and sons waiting for transplant...oh my. The burden I feel for all of us, in this horribly close community ravaged by this monster disease...is just overwhelming to me tonight. I wish for one moment I could list out each of your angels. I'm sure many of you, follow other cystic blogs and even have many CF friends on FB and other forums, and I have as well, but this past week God has opened the door up for so many hundreds of you to introduce yourself to me, to send us love and support...and at the same time he's shown me just how many lives are on their way to devestation. and that is crushing. Safety is in numbers, wouldn't you agree? just plain old numbers....leave it at 30,000 people have CF and you can turn from it, unscathed. But when in one week you've been reached out to, and introduced and been given NAMES of almost 1500 actual PEOPLE, living, breathing PEOPLE fighting this internal fight each day, that simply is overwhelming...and it's a call to action. You simply can't turn your back at that. I think what Im' feeling now is a turning point in my life. I think we can use this for good.
This is how we should fundraise for all of our loved ones. Give CF a name...not just one name, and 29,000 other strangers...but names...people. pictures. lives. How can someone turn their back when they see faces to these countless people fighting...? How easy is it to say, "gosh ya too bad for Conner...glad it's not my child...." but how could people turn around and walk away hearing "this is 7 yr old conner whose dyeing, this is precious Ginger Blue, or the brave and witty Piper Beatty, and the remarkable Josh Mogren with CF, etc etc...see what I mean? Lets give CF a face...30,000 to be exact...
we have to do everything for a cure...
meeting all of you and learning of your loved ones has moved me so much this past week and i feel honored to be a part of your journey as you are a part of ours...
Please if you have CF, or a loved one with cf please email me a pic of them/you to connersfightagainstcf@hotmail.com and include the name, age, where you/they live and one thing they love the most to me...lets give CF 30,000 faces AND names
I've met so many wonderful cystics this past week....honestly, some of the most well wishing, loving, supportive and god loving strangers I've ever had the pleasure of meeting. I've been weeding thru my hundreds of emails from these amazing people...and I just can't help but to think of that ugly bond we all have.
Cystic Fibrosis
Hearing all of the love given to our family, to our sweet Conner, and then in the same post to be introduced to those they are fighting for. Oh that is simply overwhelming. There are hundreds of tiny souls batteling this disease...and I hear..."my so-and-so is this old with CF and I simply can't imagine what you're feeling...." oh my heart is heavy. For you.
All of you.
Each person whose reached out to me this past week with loved ones suffering silently, and even not so silently with this disease...my heart is broken for you. My tears for you are endless. Because I pray that you will never know what I'm feeling today. With all my heart I pray you will never see your 18 month old angel fighting for their life...for your 5 year olds...for your 25 year old daughter and sons waiting for transplant...oh my. The burden I feel for all of us, in this horribly close community ravaged by this monster disease...is just overwhelming to me tonight. I wish for one moment I could list out each of your angels. I'm sure many of you, follow other cystic blogs and even have many CF friends on FB and other forums, and I have as well, but this past week God has opened the door up for so many hundreds of you to introduce yourself to me, to send us love and support...and at the same time he's shown me just how many lives are on their way to devestation. and that is crushing. Safety is in numbers, wouldn't you agree? just plain old numbers....leave it at 30,000 people have CF and you can turn from it, unscathed. But when in one week you've been reached out to, and introduced and been given NAMES of almost 1500 actual PEOPLE, living, breathing PEOPLE fighting this internal fight each day, that simply is overwhelming...and it's a call to action. You simply can't turn your back at that. I think what Im' feeling now is a turning point in my life. I think we can use this for good.
This is how we should fundraise for all of our loved ones. Give CF a name...not just one name, and 29,000 other strangers...but names...people. pictures. lives. How can someone turn their back when they see faces to these countless people fighting...? How easy is it to say, "gosh ya too bad for Conner...glad it's not my child...." but how could people turn around and walk away hearing "this is 7 yr old conner whose dyeing, this is precious Ginger Blue, or the brave and witty Piper Beatty, and the remarkable Josh Mogren with CF, etc etc...see what I mean? Lets give CF a face...30,000 to be exact...
we have to do everything for a cure...
meeting all of you and learning of your loved ones has moved me so much this past week and i feel honored to be a part of your journey as you are a part of ours...
Please if you have CF, or a loved one with cf please email me a pic of them/you to connersfightagainstcf@hotmail.com and include the name, age, where you/they live and one thing they love the most to me...lets give CF 30,000 faces AND names
Tuesday, February 9, 2010
Conner's famous again!!!
Well I guess I shouldn't be too surprised...but our home away from home, Long Beach, WA did a remarkable article in this weeks paper (yep...only one paper a week!!) Conner's had articles in papers before, but this one is truly exceptional. The writer, Amanda Frink did an AMAZING job capturing CF and our lives!!! You can read it HERE.
In other news, last night was Brad and I's counseling appt where we discussed the when and how to talk to Conner and Hunter about Conners declining health, CF, and dyeing. ICKY! Thats not a good talk to have! I feel we've made a solid plan, and I have complete faith that God will help to give us the words to speak, and the strength to do so. Part of me is still in denial of it all, quite honestly. I mean here's the best way I can explain it. So back in October when Dr Link sat me down and told me how serious Conners condition was, I went thru a good 2-3 week mourning period, where I just felt broken and was easy to cry...but as time went on, even though we kept going back to the hospital week after week up thru January it kinda wore off. I got numb to it. and life went on. Then when the second peds pulmonary cf doc sat me down in mid January before our trip to Hawaii and said the same things, i was completely taken back! why? because i was so numb. i refused to waste time FEELING the grief, and honestly, I just didn't want it to be true. So when he said that to me I again went back to that intense feeling of despair, but as we got home from Hawaii and his health is stable (not great, but it never has been) I'm back to my numbness. I don't believe it. It's easy to see and believe when he's in the hospital, horribly sick, but when he's home and doing ok I just can't believe it. So I pray that our plan will fall into place, that it'll open up a dialogue between us and Conner, to let him vent because we just know he knows whats going on but has been too afraid to say it, and to let us all just love each other and hug and support each other. Our plan with Hunter is very similiar, only the conversation will be different. He's only 4. It will be very devestating and quite confusing. It is a grown up conversation being given to a 4 year old child, with child like feelings and understandings. It won't be easy. But I pray that it'll be effective, and it will just continue to help us grow closer in this time that we have together.
Nothing else is really new, I think that's enough for one day, don't you?! Continue to love and support those with CF and their families. We all need strength and love and support to navigate thru life with his disease. But I still say we're the lucky ones, who learn in a very short amount of time the true meaning of life. and love. and living each day to the fullest. and that tomorrow is never a guarentee!
Lots of Love!
In other news, last night was Brad and I's counseling appt where we discussed the when and how to talk to Conner and Hunter about Conners declining health, CF, and dyeing. ICKY! Thats not a good talk to have! I feel we've made a solid plan, and I have complete faith that God will help to give us the words to speak, and the strength to do so. Part of me is still in denial of it all, quite honestly. I mean here's the best way I can explain it. So back in October when Dr Link sat me down and told me how serious Conners condition was, I went thru a good 2-3 week mourning period, where I just felt broken and was easy to cry...but as time went on, even though we kept going back to the hospital week after week up thru January it kinda wore off. I got numb to it. and life went on. Then when the second peds pulmonary cf doc sat me down in mid January before our trip to Hawaii and said the same things, i was completely taken back! why? because i was so numb. i refused to waste time FEELING the grief, and honestly, I just didn't want it to be true. So when he said that to me I again went back to that intense feeling of despair, but as we got home from Hawaii and his health is stable (not great, but it never has been) I'm back to my numbness. I don't believe it. It's easy to see and believe when he's in the hospital, horribly sick, but when he's home and doing ok I just can't believe it. So I pray that our plan will fall into place, that it'll open up a dialogue between us and Conner, to let him vent because we just know he knows whats going on but has been too afraid to say it, and to let us all just love each other and hug and support each other. Our plan with Hunter is very similiar, only the conversation will be different. He's only 4. It will be very devestating and quite confusing. It is a grown up conversation being given to a 4 year old child, with child like feelings and understandings. It won't be easy. But I pray that it'll be effective, and it will just continue to help us grow closer in this time that we have together.
Nothing else is really new, I think that's enough for one day, don't you?! Continue to love and support those with CF and their families. We all need strength and love and support to navigate thru life with his disease. But I still say we're the lucky ones, who learn in a very short amount of time the true meaning of life. and love. and living each day to the fullest. and that tomorrow is never a guarentee!
Lots of Love!
Friday, December 18, 2009
When the docs say there's nothing else we can do, I go on my own...
So Conner's on every medicine and therapy available for a CF patient...and the Docs have said there is nothing else they can do, and they have even admitted to me, that sometimes they just guess at what to do for him...because they're out of ideas. My son is not a transplant candidate due to having another disease (prune belly syndrome...meaning lack of abdominal muscles) because with PB he can not cough up his CF secretions...making intubation and ventilation too much of a risk for him....fine i'm at peace with that....
but....
that doesn't mean i've stopped when the doctors have given me a red light. they are NOT god, they DON'T know everything, and it is MY son....like my dear friend has said...my son does NOT have a choice to have CF, so I do NOT have a choice but to fight for him...anyway i can. I've been looking ALOT into alternative therapies and natural medicine for him, into chiropractors, supplements you name it...i've googled it all! And I think I've found a winner...
NAC...click here for NAC info because i am NO expert in it all....and just FYI, the article refers to glutithione...and NAC increases the levels of glutithione in the body...so now it should make sense...
so my plan is to try it out when Conner is off Iv's for awhile and get a good sense of what it does. I have found NAC in the "fizzy" form is most effective and can be purchased thru Canada where the supplement is regulated and is pure and guarenteed to contain what the label says it contains, whereas here in the US supplements and herbs are not regulated and they can say one thing on the bottle, and you are NOT at all guarenteed to be getting what the bottle says....
we shall see...but for today I am hopeful....
but....
that doesn't mean i've stopped when the doctors have given me a red light. they are NOT god, they DON'T know everything, and it is MY son....like my dear friend has said...my son does NOT have a choice to have CF, so I do NOT have a choice but to fight for him...anyway i can. I've been looking ALOT into alternative therapies and natural medicine for him, into chiropractors, supplements you name it...i've googled it all! And I think I've found a winner...
NAC...click here for NAC info because i am NO expert in it all....and just FYI, the article refers to glutithione...and NAC increases the levels of glutithione in the body...so now it should make sense...
so my plan is to try it out when Conner is off Iv's for awhile and get a good sense of what it does. I have found NAC in the "fizzy" form is most effective and can be purchased thru Canada where the supplement is regulated and is pure and guarenteed to contain what the label says it contains, whereas here in the US supplements and herbs are not regulated and they can say one thing on the bottle, and you are NOT at all guarenteed to be getting what the bottle says....
we shall see...but for today I am hopeful....
Monday, December 14, 2009
Blog numero uno...the introduction

So here we are a new beginning. I have decided to cross over to the dark side so to speak...to blog. To have a space in my unraveling world where I am free to just be me, say what I wanna say, and at the same time be free to be honest. No holds barred...
I am a mother.
I am a wife.
a daughter, a sister, an auntie, a cousin, a granddaughter, a friend, a confidant, an organized OCD freak, who sometimes gets lost in the shuffle of life in the Jones house of boys! I have real honest emotions that attack me every chance they get. On any given day I am happy, fearful, sad, pissed off, hopefully optimistic, frightened, worried, ok maybe overly worried, but I somehow manage to hold it all in. Along with all of the above, I am also a full time nurse, full time stay home mom, full time respiratory therapist, full time medicine and appointment scheduler, full time boo-boo kisser and bandaid applier, full time researcher...phew...
I am a mother of a child with Cystic Fibrosis...
you can get caught up with my son's medical history at his caring bridge site at www.caringbridge.org/visit/connerreedjones for background on his story and our journey, but this site is my site of freedom. With this site I am allowing myself honesty. To cry when I need to cry. To scream when I need to scream. To vent when I need to vent. My son is very sick...and I need this for my sanity, not so much for people to read as it is for me a great way to journal my frustrations....get it out of my head so that maybe i can catch a few z's at night (HA!)
I am doing the best that I can juggeling all of this, but it has become apparent that in CF (cystic fibrosis) there is a lack of the big, dark, horrible TRUTH. Cf is a DEVASTATING, horrific disease with no cure. NO CURE. Life with it isnt always as "Bright and Shiny" as the CF foundation wants you to believe. I am on a quest for more information. Better, more honest answers. I will never give up hope that CF will one day be cured, and I will always fundraise towards a cure, but I pray that it will be soon enough for my son. Uhg. There it is...the very un-bright and un-shiny Cf that I live with everyday.
I am a mother.
I am a wife.
a daughter, a sister, an auntie, a cousin, a granddaughter, a friend, a confidant, an organized OCD freak, who sometimes gets lost in the shuffle of life in the Jones house of boys! I have real honest emotions that attack me every chance they get. On any given day I am happy, fearful, sad, pissed off, hopefully optimistic, frightened, worried, ok maybe overly worried, but I somehow manage to hold it all in. Along with all of the above, I am also a full time nurse, full time stay home mom, full time respiratory therapist, full time medicine and appointment scheduler, full time boo-boo kisser and bandaid applier, full time researcher...phew...
I am a mother of a child with Cystic Fibrosis...
you can get caught up with my son's medical history at his caring bridge site at www.caringbridge.org/visit/connerreedjones for background on his story and our journey, but this site is my site of freedom. With this site I am allowing myself honesty. To cry when I need to cry. To scream when I need to scream. To vent when I need to vent. My son is very sick...and I need this for my sanity, not so much for people to read as it is for me a great way to journal my frustrations....get it out of my head so that maybe i can catch a few z's at night (HA!)
I am doing the best that I can juggeling all of this, but it has become apparent that in CF (cystic fibrosis) there is a lack of the big, dark, horrible TRUTH. Cf is a DEVASTATING, horrific disease with no cure. NO CURE. Life with it isnt always as "Bright and Shiny" as the CF foundation wants you to believe. I am on a quest for more information. Better, more honest answers. I will never give up hope that CF will one day be cured, and I will always fundraise towards a cure, but I pray that it will be soon enough for my son. Uhg. There it is...the very un-bright and un-shiny Cf that I live with everyday.
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Did You Know....
There are over 100,000 people, the size of a small city, on the transplant list in the US.
There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).
In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.
From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.
click here to join the organ donation registry
BECOME AN ORGAN DONOR, SAVE A LIFE!
There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).
In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.
From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.
click here to join the organ donation registry
BECOME AN ORGAN DONOR, SAVE A LIFE!