My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Thursday, August 26, 2010

Good GRIEF!

this week has been as close to hell as i can imagine it to be. unsupportive friends and family, uncaring, unknowing strangers, a pressured visit to CF clinic at the very hospital that we fought the battle at so frequently, seeing my family there again…tears tears tears. hes only been gone two months. yet that seems like forever ago. i need to just spew a bit because that is why i started this blog…it’s my journal and its for me not really for you.

i’m mad that so many of my friends and family leading up to conners death urged me to not be so strong, to allow myself to be vulnerable and to cry. call on them they said day or night to cry or cuss or whatever i needed to. guess what? i’m crying, i’m screaming and i’m alone. those who pledged their unending support and who said it was great to cry not only have walked away but then openly started critisizing my grief. screw you. you have no right to my life or to my family. how can you show up at my house and watch my son die, physically see the anguish and pain that brad and i felt in that instant that nothing in this world will EVER compare to ever again and then walk away from us? how dare you call us friends. we are not friends. and family who treats and judges us in the same manner…we can never remain family. plain and simple.

this death shattered us people. shattered! and perspective occurs inthis…our son’s dead. as in buried now 6 feet under ground all alone enclosed in a beautiful grover casket sealed in a cement liner for all eternity. thats whats important. we will not let anyone else even attempt to selfishly hurt us right now…it’s uncalled for. it’s horribly cruel. and rather then be mad at you…i pray for you. because my dear “friends” one day you will have to answer to that in a court higher above any supreme court we know on this earth and i pray that god shows mercy for your choices and more so maybe that by then you will have asked for and recieved his forgiveness and blessing. i’m only human. he is god. end of story there.

i only write on this blog when i’m emotionally about to explode. i think the name of this blog really says it all. this is not a jones happy happy joy joy story land blog here people, its the crappy truth of cf and death. it’s not about how much i love my children and how much tulips are my favorite flower blah blah. this is my journal. this is my lifeline. you have no idea a fragment of what i’m feeling every 24 hours, this is only one tiny 20 minute reflection of a moment in my day. if i hear one more time that i need to remember that my kids need me, and that my husband needs me and that i have so much to live for and wow how much i should cherish that he’s free now…i tell you i will explode.

I LOVE MY CHILDREN.

I LOVE MY HUSBAND.

MY LIFE IS NOT OVER.

I AM NOT SUICIDAL.

THIS MY DEAR FRIENDS IS GRIEVING.

do you even understand that by trying to prevent me from feeling these feelings further surpresses them inside of me. do you realize that if it builds up too much i will explode. do you understand that my marriage is under an extreme amount of stress from the loss of our firstborn child…and that by writing such things on my blog you are adding to our stress, thus creating a much more stressful and tense home environment for my children and my husband and i? do you realize that by watching our son die that nothing else in this world could ever hurt us that way ever again? that our whole view of this short little life is completely altered?  that mama bear will hunt you down and take you out w/o a second thought if you keep threatening and causing undue hardship for myself, my husband or my children? right now the 4 of us with conner angel at our side are taking a collective stand to say that if you are not helping us you are then hurting us. so pick your side and be ready to carry it out. either be there for us in silence, prayer, support, encouragment and love or walk away. there is no gray area.

no more gray area in our life.

i’m so pissed about some comments left on my facebook page the other day and the one who posted it knows because it’s been removed by the author. you know what you said was wrong. you know you hurt me and my husband. you know you are simply alienating us from you. there is nothing like the loss of a child. i’ve lost grandparents and close friends and nothing even comes close. nothing. so by saying that “we’re not the only ones who life throws some DISCOMFORT at” is a load of crap and you know it. a discomfort is wearing a shoe a size too small cus they’re cute a death of a child that we’ve fought for each and every single breath is NOT at ALL discomforting. it’s life altering, shattering, intense, heartbreaking, defining, horrific, tragic, rip your heart out with a fork kind of excruciating pain that can never be fixed, bandaged up or left behind. the brad and sarah that we were do not exist anymore…so as we’re redifining ourselves and our lifes goals and dreams we will be able to build a gate of dear close family and friends who we truly know now like never before, are 1000% for us and not against us. so please make your choice which side of the gate you wish to be on “family” i’m very happy to see the comment gone but wow…no apology, no explanation, nothing. no words to that…

i’m so tired of begging people thru my blog to help me. how is it that some of the people whove meant the most to me are people i’ve never, nor will i probably ever will meet? all over the country and all around the world? what happened to my “friends” who’d help me out here when i needed help with the kids while stuck in the hospital? wheres all the people who’ve offered their support before he died…

how many times do i have to say that we can NOT do this alone. we’ve been trying to hold together and pull thru the past 60 days mostly alone. and we can NOT do it. why am i begging YOU for help? shouldn’t YOU be coming to help me??? is this normal? please someone whose been thru this help me out here…give me suggestions and advice. what the heck is going on here???? why is family causing so much extra pain? why are our friends gone now like we’re diseased? and please tell me…oh lord where in the world do we go from here alone??? how the heck are we going to do this? cus i’m so damn tired of trying to beg for help from unwilling people. i’m so tired of trying to figure out why we’re alone. why nobody’s coming by or checking in. why my son is gone and our family has to rebuild each and every relationship from the floor up…

because honestly if this is a normal thing that happens…then i can see why some people can’t take it and feel suicidal. w/o a deep rooted faith and love of God how could anyone take this in?

because i love god more than anything in this world and he’s my best friend and he’s caught each and every tear i’ve shed…and if i didn’t have HIM to lean on, because humans can’t or won’t…i’d not want to live either…

YES…I’M ASKING FOR ADVICE….BRING IT

50 comments:

  1. I have never met you but have a daughter with Cf and I just wanted to let you know how sorry I am for your loss. I did not see the comment that was left but it must have been horrible to have upset you this much. I am so sorry that you are having to go through this right now in your still time of need. No amount of time can ever help people get over a loss of a child. You will be forever grieving and people should understand that. If you ever need anything I am in Mukilteo Wa. and we are continuously at Seattle Childrens. I am also a friend on your Facebook page. I hope things get better for you soon as far as your family is concerned and that people will realize that people never get completely over the loss of a loved one especially a child.

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  2. Gosh I am heartwrenched that you are not being supported right now. Like I feel sick and queasy about it!!! UGH!!! When our daughter was being diagnosed we had family walk away, friends walk away... they just couldn't handle something that wasn't rosey and perfect and the thought of our child being broken and then one day possibly dieing was too much. I have NO advise, because I have NOT walked in your shoes. But I will tell you that I read every word of your anguish, and I cried, literally sobbed when I read your posts that he was going to pass and then floated into gods arms. I know god is right there with you in holding you now while you grieve, and I have faith that your friends and family that are there will hear your cry THIS time and embrace you and at least give you some actually physical support to help ease your burden just a fraction. Much love to you Sarah, I wish I was there to just give you a hug and to get my kiddos together with yours to play for the afternoon while you and I folded laundry... That is what I would do for my grieving friend while we cried and became boogery messes remembering your sweet boy.

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  3. I am with you 100,000% Sarah Jones! I so wish I lived closer to you, I would love to be that person to just stop in unannounced to make sure you and your family in doing ok. To hug you. Whatever. I so can't relate to your situation. And I am beyond thankful for that. I just want you to feel the love and support and not feel isolated. I am not sure what I can do so far away from you to show you I think about you and Conner everyday. But if there is anything and I mean ANYTHING I can do to help, please know that I will be here for you! Love you Jones's Family <3 always, always, always

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  4. Oh Sarah - I wish, more than anything, that I was not so many states away and could be there to help. To help with the boys, make dinner, run errands, do laundry, listen, anything - ANYTHING AT ALL - and for the life of me, I can't figure out why those you are there will not or are not helping. It puzzles me, and it hurts me that the "so called friends" cannot get over their own crap, see beyond themselves and do the right thing, the loving thing, the CHRISTIAN thing for you, Brad and the boys at the time you need it most.

    As for family doing and saying stupid stuff like this, that is something I can relate to. I have an entire group here that even though related they are all worthless. They do not care about anything but themselves. Once we got our CF diagnosis all they cared about was pointing fingers at who was to blame. Never once did they say "what does he need, what can we do, what do you need" - they only wanted to know what the mutation was so they could see if any of their other kids had it so they would not end up with the same fate as ours. Even now 4.5 years later it still ticks me off that people can be so unbelievably selfish and not care about the child right there in front of them, not care about the parents of that child, and not be there to offer love and a support system. The best advice I could give you there is if you are able to remove them as much as possible to do it. You do not need that poison in your life, and that is what those kinds of people are - poison. Just because they are "related" doesn't give them an automatic right to be part of your life and offer insight into it.

    The only other thing I can say my friend is this, YOU do what you can handle each day. YOU decide what is ok and what is not. YOU go ahead and cope, grieve, heal in the ways that works best for YOU and no one else. This is not about them, and shame on them for even thinking it is. YOU are an amazing woman, YOU are an amazing mother, and YOU are an amazing child of God - and NO ONE can ever take that away from YOU! <3

    All our love, prayers and blessings - The Wyman's

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  5. I wrote a long post..then deleted it on accident GRR...
    I was not going to write anything however as I went to leave I could not. I have to say SCREW THEM... anyone that can not support you and your family completly. They are not worth your energy. Just because you share memories, a past or DNA with them does not mean you have do deal with their "abuse" no person is the same and no grieving process will be the same how dare anyone judge you for what you say or do. I don't care if they have been through this or not they are not you and their child was not Conner. GRR this makes me so upset that people would do this. Like one of the other posters said do what you can each day, the boys (and Brad ) will not remember if the dishes don't get done, or they eat top ramen for dinner but they will remember the stories you tell them about conner and the time you just cuddle with them. Do what you can if that means spending the day in bed then do it. I wish I was closer I would love to be there for you physically. I am here and reachable either on the phone or email (hollymarie1122@hotmail.com) I wish I had the magic words to make others stupidity not hurt... I hate how people will tell others that are grieving "it will get better with time" or "everthing happens for a reason" I just want to scream SCREW YOU.. I mean I have not lost a child (THANK YOU GOD!) but I have helped a cousin get through the death of her son...NOT THE SAME I KNOW... anyway I just want to say you will always have a friend and a supportive ear I will never "feel sorry for you" I will wish and pray every day that I can take your pain even if for just a moment so you can fully and freely breathe but since I know I can't I will just thank you for allowing us all to get to know Conner as well. I feel as though he has blessed so many of us. I hope the boys love their lego alarm clocks

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  6. After Liberty passed everyone vanished. No more phone calls or emails. I have exactly 3 ppl who stayed by my side. That sent me email after email no matter if I didn't write back or how hard I pushed to isolate. Were they close friends before? No, but they have been there day in and out, supportive no matter how I feel and are my best friends now. Hold on to the people who support you, let go of the others, family or not, you have gotten to see what they're like when it comes down to when you need them the most.

    Everything you have wrote about, I have felt at some point in my grieving and it is completely normal, and anyone who tells you it isn't probably hasn't lost their child.

    You and your husband are probably at different points of grieving or have different styles of grieving,(like me and mine did/do) but just try to be as understanding for one another as you can and accept the others style of grieving (easier said than done).

    If I can ever help you with anything or you need an ear, feel free to write.

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  7. Sarah - I wish I lived closer so that I could come and be a support "in person". I am so sorry that you are experiencing this...especially from family. I have not lost a child - so I can't and won't try to give you advise.

    I do have a best friend who is slowly dying from a genetic disorder called Ataxia. Like MS but more aggressive and worse. It sucks. She is a beautiful Godly woman and it hurts to slowly watch her suffer.

    She has a friend she has known for 20 years. When she started to get sick the friend couldn't "deal" with it so she cut her out of her life. It hurt Karlena SOOO bad. She continued to try and reach out to her and this "woman" just can't respond in the way Karlena needs.

    I have to believe that people like this must not have a solid relationship with Christ. Because I understand that it isn't about how I feel about Karlena's disease...but how I can be a support to her during this time because Christ gives me the strength...it is what God wants of all of us.

    I can't speak for your family and your friends hearts but to say you are doing the right thing by praying for them and hopefully God will convict them to be sharing His love and His comfort and His support to you...even if it isn't "easy"....because it isn't about their "comfort" with the situation...but rather what God wants them to learn from it.

    I will continue to pray for you and for them also. You continue to walk this road in the way BEST FOR YOU. Let no one judge you for your journey!

    God bless you!
    Kristin

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  8. Sarah: I'm one of those people that cheered when Connerman was doing well, and cried when things did not go well. No one will EVER understand what you and your family went through or are going through. As long as you and your family are together in the decisions that you are making, than don't even let those other comments into your life.

    You are a very strong person and went through more than most people ever will. It's nice to actually read your raw thoughts rather than hearing some candy coated crap. Keep going through what you have to.

    I wish I was was there to cry with you and just scream. My only hope is that you stay strong in your faith. I will continue to lift you and your family up in prayer.

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  9. Sarah, I will continue to pray for the people in your physical everyday life. As you said so well those of us in the blog and fb community are so supportive. SO here's the thing if you know Sarah personally jump in! help her with the mundane every day of life. Sit with her. Give her whatever she needs. For those of us not in Sarah's physical proximity if there is someone in your life who has suffered the loss of a child that could use your help, love and prayer bring it. If neither is the case for you pray pray pray. That Sarah gets what she needs. That Brad gets what he needs and that all the other moms & dads in that horrific club gets what they need. And that maybe someday you find yourself with a friend in those shoes you know your role and that you are there to back up the words.
    As always Sarah prayers and love!

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  10. Sarah, it's painful to read what you're going through right now but sadly I'm not surprised one bit. It is times of hardship that truly bring out the best of people and the worst! Our family has experienced the same abandonment, criticizing and neglect...not me to this degree but to my mother-in-law. When her son committed suicide she got the nastiest letters by people who read the obit and just had to tell her her son was in hell now because he had committed a sin. Can you believe that!?! UGH, it pisses me off every time I think about it. How dare one hurt a mother who has lost her child!? Unless someone has gone through the most horrific event any parent can live through-losing a child-no one, absolutely no one can even come close to knowing that pain. And it was actually her church "friends" that pulled away the fastest. I'm to angry to cry right now...but please know that I think of you and your family often. Rely on the few that are truly there for you. I hope they help you not only with your grieving of Conner's death, but to help you through times of disappointment from family and friends as well. Hugs from Iowa!!!

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  11. I am fully aware of the fact that I do not know exactly how you feel. That being said, my heart breaks for you and your family. For strangers to make comments that sting you can try to brush it off. But family? That just hurts so much more because it's...well, unexpected. They're supposed to be there to support you. I wish I could some way be there for you through this. You should not be facing the biggest hurt anyone can feel all alone. No one should. Just know that I am still praying for you and Brad and your boys, all of them.

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  12. Hey Sarah, I can't believe you have to deal with this!! I really don't have any wonderful advise on this. Sorry.... Scream, yell, cry whatever you have to do!! You are his MOTHER, HELLO!!!!They don't get it, sadly probally never will. OMG, hang in there.. Are you sure your not from NY? Say it like it is ,sista friend : )

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  13. I don't remember how I found your blog, but I have been keeping up with it.

    We lost our third baby to spinal muscular atrophy (SMA). When we shared that we were expecting again (HUGE surprise), we lost some 'friends,' likely because they considered us irresponsible (another story). When Jeffrey was diagnosed, we lost some more 'friends,' likely because they were uncomfortable. (One reply from an old 'friend' to the announcement I sent about Jeffrey's death was quite telling: "I don't know how you did it. We had the best time at DisneyWorld!" Um, okay.) As 'friends' fell by the wayside, however, several of those we'd known only casually stepped up to the plate in amazing ways and continued after Jeffrey's death. They sent cards, called, donated to SMA causes.

    My family, which has always been close in all ways, was supportive throughout the entire time; my husband's family, too far away to help physically, prayed a lot and helped spread the word, which we appreciated. One rather close in-law said after Jeffrey's death, "I know how you feel. I had 3 miscarriages." My husband and I begged to differ with her because I'd had a miscarriage, too. I know those who struggle with fertility also grieve, but there simply is nothing like looking at the tiny casket, knowing your child is inside, and then looking at the hole in the ground, knowing that's where the casket will be placed.

    After Jeffrey's death, I chose - and continue - to submerge myself in SMA matters as much as possible. Long ago, some family members thought I was doing too much of that, figuring it was keeping me in a depressed state. I didn't feel abnormally depressed at all; I was grieving during my obsession with helping other SMA families, which in turn helped me.

    I keep up with another blogger whose 20-year old son committed suicide in April. Yesterday she wrote basically the same things you have - people are beginning to suggest that she has grieved 'enough.'

    Ha.

    I can say after 13 years that the grieving never goes away completely. I don't sit and sob daily, but I COULD if I dwelled on it long enough. I still have to remind myself on occasion that Jeffrey is in the perfect place, and I'm most appreciative of the signs :)

    I haven't read the other comments to this post, but I skimmed them and agree with what I saw - keep yourself surrounded by those who understand and are willing to be patient and supportive. The CF family may be the cream of the crop in that respect, as they DO understand. I've always been grateful for access to other SMA families; I don't have to explain or excuse anything.

    Please know that there ARE folks who can relate all too well with what you're going through and that time does help. LOTS of it.

    Hugs from North Carolina,

    Helen/'Lucy'
    thejeffreyjourney.com

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  14. The only advice I have to offer is this:

    If I didn't have family, I wouldn't have any enemies.

    So sad, but so true. I especially love the inlaws who send me "pamphlets" and shit on seizure disorders and related stuff. I laugh in the face of those pamphlets. Like my MIL is going to uncover something that a magnificent pediatrician and 3 DIFFERENT NEUROLOGISTS have not. Piss on them all!!

    Sorry, that's just how I feel about what is happening to you. No one should be telling you HOW to feel/do/be/act/etc. That is just ridiculous to me.

    I wish I could come give you a real hug -- and tell you what an inspiration you have been to me as a mother.

    xoxo
    julie

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  15. This is awful to read--that people don't think you're "grieving" the right way. Perhaps that is at the heart of it: judgement. You didn't "behave" weakly enough when he was alive and now you're too weak/grieving/upset and that makes some people unsettled b/c that's now how THEY would do it. I am starting to feel that all my personal problems come from people (including me, at times) being judgmental. In other words, you're not acting how they think they would (altho how does anyone know how they would act in such a horrible, horrible circumstance?) so they feel it's OK to say "corrective" things. Or perhaps people just suck. But I hope for all our sakes that some people know how to be true friends: silent, supportive, enduring.

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  16. Hi Sarah. I am so sorry that friends aren't around to give you support. I so wish I was still in Longview. You have been on my heart for the last couple of day especially. Although I can be there physically, I am praying for you and your family daily.

    With much love and kindness,
    April

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  17. This path we seem to walk alone. But in the shadows are many others walking (or maybe stumbling ahead is more accurate) similar journeys. I've felt abandoned and mad, hurt and confused. I still do. Each time an acquaintance or friend or family member is suddenly hurled down this path, my own wound festers open again. The acute agony causes even my ear drums to hurt. It's bizarre. As others have mentioned, we have to let go of those around us who want us to "hurry up". We know the world moves on. That's one of the most maddening parts about this. We don't want it to go on. I cursed the sun for rising. But I cursed it for setting as well. Keep the darkness of night away from me. Journaling is a wonderful tool. At one of m therapy sessions, the counselor suggested that if I had trouble journaling try it from a letter writing approach. Each day write a letter to someone who helped me or hurt me or for whom I was carrying a grudge. These of course are never mailed but gave me a way to express myself with words that came from very dark places. I'm glad that in our modern era when we can't cure every disease and we can't stop the spread of social blights, that we do at least have this cloud communication system to hear how others are doing and to express how we are ourselves are managing. Sarah... you are entitled as a grieving mother to every thought you have and every word you write. Discard those who bring you down and reach to those who appear to reach out to you. Sometimes they are afraid to fully extend their hand but the nod of a head or the fumbled embrace or inquiry is an opportunity to bring them into your circle.

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  18. Hugs – not everyone is strong enough to deal with reality. You do what you think is best for your family. Surround yourself with positive loving people, don`t worry about the rest. Love to you and your family. (I know it isn`t any of my business, but I hope you have had the chance to do something for yourself. I know that taking care of a sick child is demanding and taxing in a way no one can ever imagine, I can`t imagine what you`ve been through. My wish for you is that when you`re ready that you take some time to think about yourself and not just your family. Read a book, go to the spa, take care of yourself – you deserve it, when you are ready)

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  19. Bravo, Sarah! For speaking the truth and calling people out on their despicable behavior. The unfortunate thing is most people are totally involved in their own small drama's that they can't tell the difference between minor life annoyances and catastrophic life events. The death of a child is unlike any other kind of death. It is profound, life altering and all the things that you write about. People always want to liken it to a death of another family member, but it is just not the same. People also like to "one up" each other, even when it is about death. "Well, your pain can't be as bad as mine because of...and they list off their examples". As I often tell my older daughter, most of us will be lucky to have one or two close friends in life. The type that are there no matter what, through thick or thin, non-judging, non-critical,etc... If I were you, I would delete all those "friends and family" from your FB page that fall in to the judging, non-helping department. You don't need that kind of stress in your life. As bad as this sounds, you might not have any friends left that knew you before your Conner's death, but I do believe that you will be blessed with new ones, those relationships will be much richer and fuller than the old ones.

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  20. This is very, very sad. You should maybe consider psychiatric assistance.

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  21. Hi Sarah! I don't want to say this the wrong way and if I do I am sorry, but I have wondered how it is now for you and your family. SOOOO many people were interested in your story before Conner passed as if they were waiting for his death and then when he was gone it was like the story ended for them, but people seem to forget it continues for you and your family. Everyone says they want a happy ending and to see the good, but why is it that people are so captured by sadness, evil, grief... Everyone wanted to help when they thought you were going through the worse thing in your life, but they need to realize it is now that you need help! Conner is gone and now you need people the most. I hope you understand what I am trying to say and that this in not coming out wrong or offensive. Please feel free to contact me if you need anything, a phone call, lunch, coffee, pedi's, so on... Help cleaning your house, but please not the bathroom, I hate cleaning bathrooms :)... I am sorry you are having such a hard time and I am not sure that anyone can comfort you, besides God at this time, but I would like to try!

    Tia Heidler

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  22. While I've never walked in your shoes, I suffer from CF myself and mourned the unexpected death of my dad at age 16. My thoughts on the matter are this: As for anyone's opinion on how you should handle your grief...Eff them. You are your own person, you have your own mind, you have your own healing processes and it's in your own time. Anyone who doesn't respect that doesn't respect you and doesn't deserve your true friendship. There are people out there who don't even KNOW you who grieve and cry with you on a daily basis...If a stranger is a better friend to you than these "close companions" of yours, maybe they're just strangers, too. My mother is the strongest woman I know, and I can 100% guarantee you that if she were to lose me, she wouldn't even be handling it as well as you are. God bless you, Sarah. You're maintaining through something that these so-called friends would never even be able to survive. I repeat: EFF THEM!!!!!

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  23. Sarah-
    I dont know you, I am not sure now how I found this blog, but I've been reading for awhile, since before Connor's passing. It is heartbreaking. It is raw. It is real. I think I read because it isnt all sunshine and roses. It is real life, and sometimes real life is excruciatingly painful.

    I cannot beleive you are finding a lack of support. That shouldnt be. You shoudl not feel alone in this.

    Please dont think I am crazy because I have never done something like this, but I feel a strong urge (God?) to reach out to you. I think we live in the same town. If you need to cry over a cup of coffee, let me know. aliciajill @ gmail . com , I will meet you. And I wont judge you.

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  24. Oh sweet dear Sarah. I write this and I am so heartbroken for you. I wish there was something I could do for you. I am going to start posting on your FB page as well methinks. I want to check in on you there from time to time :).
    I am so so sorry that you feel so alone. Please know that now unfortunately is the time of transition. This is when you are your most angry (I have been there. I threatened to kill Noah's funeral director once. Well, not to his face but I still did. The mama bear instinct can be SUPER strong). I can't tell you how good it is for you to get it all out. I can only hope that when you write these blog entries that you feel a sense of relief.
    I wish I had some advice to give you here. I don't know your family or your friends so I can't see how bad it has been for you. However, seeing your rage and anger, plus the fact that you actually beg for help should be a HUGE wake up call to your friends and family right now. SARAH NEEDS HELP. I think then the advice should be to your friends and family rather than you. They should research on how to take care of someone is grieving. They should get involved. They should stop worrying about you committing suicide, grief can be very scary for some but TRUST ME PLEASE this is the process!!!! ANGER is part of the process. Read up on the stages of grief it is RIGHT THERE in black and white!!! Sarah IS strong for her family. Every day that she wakes up, feeds the kids, does ANYTHING, it means that she is strong for her family. NEVER DOUBT THAT!!! To Sarah's friends and family, even if you just bring food, take the kids for awhile, clean the house, or just sit there and love her you will be doing such a wonderful thing for Sarah and her family. EVERY LITTLE THING NO MATTER HOW SMALL COUNTS!!! I understand that everyone has busy lives of their own. However, THIS IS SOMEONE WHO NEEDS YOUR HELP NOW!!!! A kind e-mail, a hug, setting aside time in your day. If you care about Sarah then do this. No judging, no criticizing. The judging and criticizing is simply a cover up for fear. IT IS OKAY THAT THINGS WILL NEVER BE THE SAME AS THEY WERE BEFORE! IT IS OKAY FOR SARAH TO BE ANGRY!!! SHE LOST HER SWEET BABY AT 7!!!
    Sarah, I check your FB page every day and see all the support you have online. I hope at least a few of those people are nearby you. People are scared of grief. People want to just get over it and move on. THIS is the process people!!! Grief is a PROCESS!!!! My goodness it has only been 2 MONTHS!!!! I also can't say this enough THE ANGER IS NORMAL, THE ANGER IS NORMAL!!!
    Okay, okay...I will stop my ranting. Oh Sarah, I so wished that I lived closer to you. My friend you need food, comfort, and hugs. Please just know that I check your blog every day and am thinking of you and your family every day. I can only wish that you can take some comfort in that.

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  25. I'm not very qualified to give you any advice, but I think that if I were in your situation, I would surround myself with people who could meet my needs with the kind of support that worked for me. All others I would say limit exposure to, or eliminate exposure all together. Surround yourself with wonderful people who love you and support you. You don't have any time to waist with people who hurt you, annoy you, criticize you, find fault in you, etc.

    I wish you the best on this unwanted journey in your life and hope you find a new Sarah in time.

    Janna Mills-cfparent.com

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  26. Hi Sara. Like many others, we have never met. We have something in common in that I've lost a child too. My daughter died just about 3 years ago. I can only tell you that your friends and many of your family don't know what to say and don't know what to do and so they aren't saying or doing anything at all. I experienced this with many of my closest friends and it finally came out several months later nobody has a clue of how to act or not act. Talk or not talk. Do or not do. Everyone is just walking on egg shells because they don't know what to do. I'm sure most/many/all of them love you and Brad and your entire family soo soo much but they just don't know. You are right, your family will never, ever be the same. I feel your hurt just by reading your blog and I hurt for you. My situation was very different, I never had the chance to meet my little girl. She died at birth. I have a close friend with a son with CF and I came accross your blog and have been reading it since. I'm so sorry for your loss and I have been praying for you and your family since I first heard your story. PS...I love the blogs about the red legos. Feel free to reach out to me if you want, and if not that is fine too. Jill ajjolliff1004@yahoo.com

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  27. Sarah, I don't really have advice and I have never lost a child. I worked with a dear sweet woman who had lost a son and I know you don't get over it. She said you learn to laugh and love and live all over again. She also told me that after the funeral was over and everyone went home, she felt abandoned. She said the biggest thing she learned during that time was who were the REAL friends and who were NOT. She got unasked for advice from family which in her weakness some of it she took and now regrets. And the people who she thought would be there, disappeared. So all I can add to that is I don't think it's uncommon in spite of it being painfully sad. I just cry for you. My eyes well up and I can feel it in my throat some of the sadness you are going through.
    I believe in you Sarah. You are a champion. I am so glad you love Jesus and I know He has your heart and hand. He will lead you. He is leading you. I would consider it a privelege to come up there soon and hang with you. Play with the kids, Cry with you, complain, laugh, stare at the walls, go for a walk, eat cookies(after my cleanse), clean out your linen closet, watch a little tv etc...WITH YOU! So now the ball is in your court!
    Love, love, love....Bonnie

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  28. I didn't read any of the previous comments so I don't know if I'm repeating myself. Anyway it so seems that people forget that things don't just suddenly end once the "predicament" is over. ie. car accident. If you're in the hospital (and lucky to have ppl visit you) they shower you with affection. As soon as you leave the hospital they forget that you've not completely healed, there is rehab and the struggle to recuperate, however, people think well they're out of the hospital so they're fine. If even that, bc honestly most ppl just selfishly forget about you from being consumed in their own life. True we all think our own problems are the biggest and most difficult, but nothing compares to the loss of a loved one. I have not lost any family member, so I do not know how you feel other than what I am able to grasp from what you share with us. I have, however, been in the situation where I was in serious accident and also very ill and ppl barely ever showed up other than MAYBE by force or the first couple of weeks. Then it just stops. My mom tells me that part of it is that they don't know what to say or do so they say nothing at all, but honestly the other part is they just DON'T WANT TO, which effin sucks! Look... I can't say your family and friends will get a damn hint ever... but hopefully by those of us who read and have compassion toward you... then you can use us as pillars. But you are right loneliness and helplessness to equate to suicidal thoughts and action, but I am glad you have a strong relationship with G-d that at least gets you to get up in the morning.

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  29. Sarah,

    I'm not sure what to say, I'm terrible with words. My heart aches for you, your husband, and your other darling children.

    Your blog has caused me to sob as I read the trials your family has had to endure, and smiles of conviction and the smallest taste of empathy of the phrase FUCF!!!!!!!

    I hope this isn't the wrong thing to do. I randomly fell across this 4 min. video the other day. It is from a woman who lost a child in a very different way than you lost Conner. I don't know if it will help. But some of the last words she speaks about Christ are very comforting to me. http://www.mormon.org/me/1JWZ-eng

    You are in our prayers. And I'm not just saying that, we literally pray for your family every day! I'm so glad you have such a strong faith in God!!

    Love,
    the Pearson family

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  30. You know what's beautiful about your story, Sarah? Yes, I said beautiful.

    You're real.

    In life. In pain. In grieving.

    Dirt, pain, tears, joy, laughter, bitterness, anger, hope, grace...REAL. Problem is people can't handle it. They can't get their hands dirty. I wish I new why. They can't grieve. They're scared. Sometimes I think people don't know what to do. So they don't do anything. They freeze. What friends we think we have melt away like snow in the sun when the going gets tough.

    Thank the Lord we have the Lord because HE doesn't mind the tears. He doesn't mind the pain. He doesn't mind at all! He loves us through it.

    I am praying. I mean that. I am praying that soon you feel the compassion and love of a few good friends. {somewhere in the Bible it talks about this...wish I could remember where.} That soon you are lifted up in arms that will hold you tight. Make you dinner. Wash your floor. Friends that will bless you! Friends that will continue to reach out to you even though at this moment you may not be able to give anything back.

    I am praying a friend like this comes into your family's lives and not just one but, two, three, four, five people. That all that love you've given to others will come back to you. This is your moment to be "given to." {{{hugs}}}

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  31. John, my guess is that you are one of two people. You are either an internet troll who writes hateful comments on people's blogs to hurt them, or you are someone who knows Sarah and is insisting that this is about you. In either case, THIS IS NOT ABOUT YOU. Please, let Sarah share her heart with the thousands of us that love her and pray for her and grieve with her, and leave her alone. Do not come to this blog and belittle her. Take your judgments and your negative comments and leave. You have obviously never experienced the anguish and terror of grief, and the feeling of utter devastation and abandonment when your family and friends all turn their backs while you try to find your way back to some sense of normalcy--ALONE. May God Bless you and keep you from the hellish pain that Sarah is feeling and that you obviously cannot understand.

    Sarah, I am sorry. Shame on your family and friends. I too was abandoned in my darkest hour, and it is a HORRIFIC thing to experience. I am so thankful that you have the Lord to hold you and love you everyday. But it would be such a blessing if family and friends could share His love with you in a more tangible, physical way.

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  32. when i read your blog i feel some of your pain, it makes my head hurt and I begin to cry. i know as a mother myself that you feel a million times worse. all i can say is people make mistakes, god forgives and you can too (but its your choice). what was said was hurtful and he should have thought about what he said before he said it. i hope I am not offending you. because I believe you need to grieve and the process will never end. feel the pain, don't let yourself go numb because of it. I grieved for the death of my grandma- who was like my mother for over 10 years. I CANNOT imagine how you are feeling about losing precious connorman.
    you know once someone told me when I had a miscarriage that it was god's way of telling me that i am not ready to be a mother. i believed them but it mad me very angry what they said, and i read about other peoples loses. then i read a passage that said god doesn't do bad things, and that people often say the rudest, dumbest things to you trying to comfort you. how true that is!
    your response to him was legit. you were very brave to post it. IT WAS DISCOMFORTING! it was horrific to watch your baby suffer, and unimaginable pain to watch him pass. no matter if he feels no pain now or not, his pain is now your pain.
    it will never get easier, but your strength will return.
    have you ever read about John Vredevelt recently his family lost a son, because he was ran over by a car on 1-5. his wife writes books and they are christains.it was her book that I read when I had a miscarriage. google them, they have a church in gresham. i am sure his wife can offer you some advice. she is a very good woman, and has lost 2 children.

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  33. omg i mean it wasnt just discomforting...please forgive me for not proofreading.

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  34. hey one more thing... i cut some family members out of me life because they bad mouthed my parenting style, so I 100% support you if you do the same you don't need people who are negative in your life! you need someone to support you and your family.

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  35. I have never lost a child...so I can't even begin to imagine how you feel. I am sure that I would not handle it in a way that people would approve of. I'd probably lock myself away and stay in bed and wish I were dead. I can't understand how anyone can judge anyone else's grieving, or criticize their actions at a time like that. It blows my mind.
    My friend Hallie lost her almost 21 year old son 4 months ago, and she is going through so much of the same things you are going through. Maybe the two of you could talk, share your frustrations with each other. Her blog is http://wonderfulworldofweiners.blogspot.com/.

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  36. Sarah I have been reading your blog for a while now and Nobody has to right to tell you how long or how much you should grieve. I think your family may not know how help you right now. I have been thru quite a few deaths within my family, and went thru my son being robbed and shot in the little town of St. Helens or. he survived thank God, but there was a brief time I thought he was gone and the pain was unbearable.The only thing that will help to heal your heart is time. I also worry because you are in so much pain right now. When I lost a boyfriend a few years ago in Kelso there was a group I went to called compassionate friends. They really helped me alot. the group is mainly for parents who have lost children. Sarah they under stand your pain because they have been there. You really need to reach out to a group like that so you can grieve and not feel guilty for it.I know you don't know me but I feel like I know you from your blog. Please try not to be to angry with your family i am sure they are hurting too. Time is what it's going to take, the hurt will probably never truley leave you but you will see in time it will subside and you will start to learn to live again. I don't know if this helped yo but I sure hope it did.

    Sue

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  37. I dont know what its like to have a CF kid. I do know what its like having a kidney kid. I dont know what its like to lose a child but you have reminded me that I dont want to. You have also showed me just how strong of a mother, woman and "chronic" kid caretaker you are. I dont even remember how I found your blog but I feel so blessed that I have gotten to "know" you and Conner.
    I dont have anything great and amazing to say that will cure your greif. Greif...that is what you are going thru and eventually you will get thru it.

    Get pissed, get mad, get whatever you want to. It is your right and a normal part of greiving.

    You are strong, You are Conner Reed Jones' Mother and Super Mom/Wife to your other babies and hubby.

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  38. okay, sarah you asked for advice - my advice is get over it. and i'm not talking about the death of your child - you will never get over that. get over it - in reference to all the people who said they would be there to help you - they are not - they're gone - but i bet there are still a lot of others who are willing to just sit and listen, do your laundry, cook your meals or just be with you. there are people out there who are willing to walk this terrible walk with you - concentrate on them - get over it with the others - most people don't know how to deal with something like this.

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  39. Sarah-I do not know what it is like to lose a child. Being a mother to a CF son, I do know what it is to grieve. I have to tell you how eerily similar your blog is to my recent thoughts. I think we are cursed because our family thinks they know and they have no idea and they don't support the way we need. I have had MANY conversations lately about this. Friends too, my closest ones are you guys. CF family. No one else gets it. I wish I lived by you. I check on you everyday in FB and blog land and I would do it in real life too. Death isn't contagious, they won't get anything from coming around. Praying for you always.

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  40. I think most people are scared and simply ignorant; they don't know what you want or need right now. The best advice I could give you comes from Someone who also was very much alone during His greatest trial- "Forgive them, for they know not what they do."

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  41. I recently lost my fiance to CF. I know that it is very different than what you are going through, but I've felt this same way too. It seems like everybody else has moved on with their lives, and why can't we?? They were sad, but then they 'got over it' and just assume that we have too by now. It's the worst feeling in the world. You need people to just inherently know how to help without you having to ask. The worst part is, I think a lot of people who want to help just don't know what to do. Right after my fiance died, of course the phone calls and messages started pouring in. There was one person who kept insisting that she knew exactly what I was going through because her grandmother died two years ago from natural causes in her 80's. There is nothing NATURAL about a young person dying from CF! It made me so mad. My family just kept telling me that people just don't know how to act when someone dies. Some people live in naive worlds and can't grasp the pain that others are going through. I'm so sorry that you have to deal with people like this right now, but just remember that the people who matter are there. You have support from so many in the CF community and beyond. You grieve the way you need to and don't mind what people have to say. They will get over themselves one day. I'm far away but if you ever need anything please let me know.

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  42. *hugs* Thoughts and prayers now and always.

    My mom once said, that Sally Field's monologue when her character's daughter Shelby dies in Steel Magnolias says things well.

    Another thing I remember my parents saying is how losing a child can destroy a marriage. They had seen it happen,and were determined to not let that happen to them. I believe you have that same determination and spunk.

    My mom felt abandoned by her family and friends -- however, the ladies from church pulled through for her. Remember, you are not alone, even though it may feel like it.

    Thinking of you and your family.

    Families are Forever!!

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  44. Wow wow wow....people never cease to amaze me. It saddens me to the core to hear you beg for something so obvious from friends and family. I wish I could be there to help you. All I can say is as you and your family redefine yourselves together as a family and individually I hope you 4 find you are better off with the new friendships and stronger bonds made through this grieving process. I truly believe you will be better off even if you lose some "friends" along the way. You will fight your way through this just like you did for all of Connerman's 7 years. Hang in there...

    You, your husband and your 3 boys amaze me! It would be an honor to have friends like you!!!

    One of my favorite quotes ever...

    "God doesn't give you the people you want. He gives you the people you NEED. To help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be." -unknown

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  45. Discomfort? Really. Wow. What a very insensitive comment. My husband lost his brother to CF. He also has CF. Mike was 25 when he passed. I don't care if the child is 2 minutes old or 25 years old, the loss of the child cannot possible compare to anything. I could "deal" with losing my spouse. My children-forget it. I have 3 as well. I have no advice for you. Just wanted you to know that you do have people in your corner praying for you. Your grief process is yours alone and no one else's. You get to choose how you grieve. There is no "How to Grieve for Dummies" book that I'm aware of. Just do what you need to do for your family and yourself with no regrets.

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  46. Sarah~

    I know you don't know me but I read your blog at least once a week to see how you and your family are doing. There are no words of advice to make you and your family feel better but IF you ever need to vent I am a GREAT listener and would be happy to listen. You can email me at jpoynter1998@yahoo.com or I can give you my phone # for you to just let it out. I have a 3 year old and CANNOT imagine how you feel...So please know that I may be in Illinois but I am there in spirit for you and your family. your blog friend..

    Jessi

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  47. I have, in no way, experienced what you have, or lost what you have. But I know that CF battle. Yes, Azer is one of those "healthy" CFers, but your experience has changed me forever. And I thank you for that.

    Advice wise? If it is at all possible to tune out the idiots, then do so. I know it probably feels like isolation, because it is, I suppose. There is just no way to fix it, even though we try. There is no reason why people are the way they are. I have given up trying to change people that are afraid, or selfish, or whatever it is they are. I try to remember that even though I feel like I scream at people and they don't "get it" to move on and cling to the ones that do "get it". Wish I could give you an everlasting hug. ((hugs))



    @Rhonda: There is actually a book called "Grieving for Dummies" :)

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  48. Never commented before, but supported Conner through cf.com and facebbok. I dont normally read the comments either so not sure if you have seen this saying before...

    "Don't Tell Me Please don't tell me you know how I feel,
    Unless you have lost your child too,
    Please don't tell me my broken heart will heal, Because that is just not true,
    Please don't tell me my son is in a better place,
    Though it is true,
    I want him here with me,
    Don't tell me someday I'll hear his voice,see his face... Beyond today I cannot see,
    Don't tell me it is time to move on,
    Because I cannot,
    Don't tell me to face the fact he is gone, Don't tell me to be thankful for the time I had,
    Because I wanted more,
    What you can tell me is you will be here for me,
    That you will listen when I talk of my child, You can share with me my precious memories,
    You can even cry with me for a while,
    And please don't hesitate to say his name, Because it is something I long to hear everyday,
    Friend please realize that I can never be the same,
    But stand by me and maybe one day I will be ok."

    I was on a family friends facebook (who lost her son, 12 in February in one day b/c of menigitis)... that was posted on her wall by a friend and I immediately thought of you.

    (I have CF as well.)

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  49. my only advice to you, sarah, is to be your beautiful, wonderful, amazing self and to continue to feel your way through this never-ending storm. your strength, your love, and your inner beauty is all evident in your writing.

    one more time, because it deserves to be said again: you. are. awesome.

    when i left the hospital after a life-changing operation, my surgeon looked at my impatient and somewhat traumatized face and said one thing: "remember that there is no proper timeline for healing. you have to let yourself go at your own pace and be kind to yourself."

    sarah, that was just a transplant. it was NOTHING compared to losing a son, i know that. but the message still holds. no one -- not a doctor or a therapist or a "friend" or your family or anyone else on god's great earth -- can tell you how fast or how slow you are meant to heal, or even what "healing" looks like. and you, in turn, cannot force your body or your soul into healing, no matter how much you might like to try. be as kind to yourself as possible, sweetie, and know that so many of us around the world love and appreciate you.

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  50. Sarah, I'm just catching up on your blog. I can't even begin to imagine what you're going through. If I lived closer I would be there in any way I could regardless if we met before or not. People that bring unneeded stress to your life isn't a friend and doesn't have your best interest at heart and I know what I would do, but I doubt you're as harsh as I am lol I would tell them to eff off. During my life I have learned that sometimes people don't show their true colors right away and once they do you know what you have to do. That goes for family as well, which is an even harder thing to go through.

    I'm really sorry that you and your family is going through even more hardship than you should. It is not fair and those doing this should know better. The people that are close to you should know that not only did your child lose his life way too young, but you and your family have to change everything about your life. You have grown accustom to treatments, meds, life revolving around appointment, therapy, home health etc. Even going to the bathroom seems to be scheduled...Now you're left with an a much easier existence and you don't know what to do, because no matter what you never feel like you're doing enough. I assure you that you are. I can understand, but I can't say I have gone through it. Honestly Sarah, I'm sorry and if I were there I would be there for you and your family in anyway you needed me even if it were to wash your car.

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