How do I make this horrible decision? - Mothering Forums

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#1 of 30 Old 03-15-2008, 05:23 PM - Thread Starter
 
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My 88 year old mother has to have a full arm amputation due to a cancerous tumor in her left arm that has been removed and returned 10 times. It appears to have spread to the bone now and for the last three or four days she has been in alot of pain. She went to the doctor Fri. and he admitted her due to the swelling in her arm. He's calling in an orthopedic specialist on Monday and we'll know more then but he's fairly sure he knows what's going on.

How do I make this decision? My choices are to leave the arm on and medicate her for the remainder of her life until this disease (or the pain meds) take her, or opt for this radical surgery and hope it solves both the pain problem and the cancer issue. She is 88 and in very good health otherwise. She could make it through the surgery just fine, or she could die on the table or succumb to any one of a hundred complications and risks of performing this type of surgery on an 88 year old woman.

I am a wreck. I have twin brothers who are at opposite ends of the spectrum on this issue and I seem to be in the middle. Mom, meanwhile, is her usual happy (but a bit loopy) self. She's in good spirits and tells me she's tired of this pain and if taking the arm will cure it, then she's ready. Her mind has gone a bit in the past few years, but over all, for 88, she's great. She's very independent (or has been) until this arm thing got her down. SHe doesn't want to drive anymore. She is in quite a bit of pain most of the time and can't use the arm for much of anything this last year. I just don't know what to do. Do I willingly send her into surgery knowing she could die from it or do I take her home, dope her up and keep her comfortable but sedated the rest of her life (however long that will be...)

This is HORRIBLE. All I do is cry.
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#2 of 30 Old 03-15-2008, 05:31 PM
 
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I'm so sorry! I couldn't read this and not post. I wish I could tell you what to do. I know how difficult caring for an elderly parent can be. This is a very difficult choice and I hope you can come to a decision that will bring peace to both of you.

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#3 of 30 Old 03-15-2008, 05:34 PM - Thread Starter
 
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Thank you. It is nice to have someplace to post this for gentle feedback. This has almost become an adversarial situation between my brothers and me. I am grateful for soothing words.
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#4 of 30 Old 03-15-2008, 07:32 PM
 
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You said your mom's mind has gone a bit over the last few years... how "gone" is she? If she's still relatively OK then you and your siblings can council her but it's her decision in the end. What do her doctors say?

You might want to check out the "parenting our parents" tribe for some people who've been through some similar things.

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#5 of 30 Old 03-15-2008, 11:21 PM
 
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Hey mama,
I so wish you weren't dealing with this. It sounds like she wants to have the surgery. Having dealt with cancer in both my folks, I'd say if the amputation will likely be the end of her illness, and she is likely to be able to have good quality of life afterward, I'd do it. Having said that, though, as you are aware, a major surgery like this could very well result in complications. It is definitely something to sit with and come to terms with as best you can. I know it FEELS horrible, but I am going to tell you something that may sound very strange. This situation is a gift. It is the universe showing you what you are made of, which is love. Your love for your mama, and her love for you, will see you through this. Just stay awake for it. Be as fully present as you possibly can. This will vary a LOT, depending on your state of mind. I honestly don't think there's any one right or one wrong answer here. But, the more awake and present you are, the better you can be of service to your mama. And that will leave no room for regret, whatever happens. You can do this, mama. Lots and lots of s
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#6 of 30 Old 03-16-2008, 02:39 AM
 
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Originally Posted by MomToKandE View Post
You said your mom's mind has gone a bit over the last few years... how "gone" is she? If she's still relatively OK then you and your siblings can council her but it's her decision in the end. What do her doctors say?
Yeah that.

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#7 of 30 Old 03-16-2008, 02:52 AM
 
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She's in good spirits and tells me she's tired of this pain and if taking the arm will cure it, then she's ready.
This would be my answer. Being in pain daily is no way to live. If she is even partially capable of understanding that she may not make it threw the surgery and still wants it then I would have it done. If something were to happen then I would be ok knowing that I did what she wanted and she no longer had to live in pain.

 
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#8 of 30 Old 03-16-2008, 06:13 PM - Thread Starter
 
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I had several really good, very lucid conversations with her yesterday about all of this. She realizes she is 88, there could be complications, the surgery is dangerous, etc. But the bottom line is, as horrible as the surgery is, she's tired of being in pain. I likened it to pruning her azaleas (we live in South Georgia). The only way to keep azaleas blooming and healthy is to cut away the dead wood. Then they thrive. She understood that.

Last night she lost touch with reality. She is very addled and not aware she's in the hospital. But she's happy, overall, so we just go with the flow. I think maybe her pain meds have thrown her over the edge a little. I figure that the more out of touch she is, maybe the better.

There is so much to think about and so many decisions to make. This is a gift, though, and there are many positive and good things that are coming through it. Sometimes its just hard to stay focused on that. That's why I post here.

I also feel very much alone. I have a friend who I have shared everything with. We were (I thought) extremely close. What I think I have realized is that maybe that was the case as long as I was giving and not needing to take. I think that this situation has made me realize that perhaps the support I had hoped for from here is just not there. Its wonderful as long as I'm giving it but when I need it frm here, it just doesn't work for her. That has been painful during this awful process, as well.
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#9 of 30 Old 03-16-2008, 08:22 PM
 
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I haven't read the replies already posted; so I apologize for repetition. First of all; I'm sorry for this position your family's been put in. It isn't always easy to make choices. But I have to tell you; this one looks pretty clear to me.

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Originally Posted by GenB View Post
...She's in good spirits and tells me she's tired of this pain and if taking the arm will cure it, then she's ready...can't use the arm for much of anything this last year...
Sounds to me like she's ready to just get rid of the source of pain (the arm) and move forward. After not really using the arm for a year; she's already adapted to it missing; and now she'd like to adapt to being pain-free.

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Originally Posted by GenB View Post
...Do I willingly send her into surgery knowing she could die from it or do I take her home, dope her up and keep her comfortable but sedated the rest of her life...
Logically speaking (and I hope this doesn't make you further upset); but we could die at any time of any cause. She's a happy and sane woman; let her live her life free of the pain; and clear-headed.

And most specifically; if you're having trouble with it; then talk to HER. What does she want? Maybe she's at peace with the possibility that she might die; in exchange for a happy life if she survives. I don't really understand why the decision isn't hers to make....are you just looking for peace for YOURSELF with the choice she made already...?

I hope everything goes well; one way or another.


WARNING: The comments and opinions expressed above do not necessarily reflect those of the community in which I reside; or those of the internet parenting network.
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#10 of 30 Old 03-16-2008, 08:49 PM
 
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I feel compelled to first give you a . Secondly, I wanna tell you that her not surviving the surgery is one possibility and another is her surviving, but being unable to fully recover and being incapacitated. My dad had sorta similar "elective" surgery (either have it or die sometime in the next 5 yrs) and he was unable to fully recover from the surgery. It was to repair an abdominal aortic aneurysm and actually, that is fully repaired now and you could count that a success, but he walked into the hospital 5.5 yrs ago at 76 under his own power and he hasn't walked on his own since. He's in a nursing home now and my mom goes to take care of him daily because she feels duty- and love- bound to. I am not saying at all that surgery for your mom is the wrong thing, but I just wanted to let you know about that third possibility — complications.

I would also say that taking the arm away might not take all the pain away. I don't know, but I'd be asking the drs some questions. I've read about the phantom pains of amputated limbs.

Do come by the Parenting Our Parents thread. You'll find lots of shoulders to lean on there — http://www.mothering.com/discussions...d.php?t=796388 .

That said, if she's fairly lucid and you think she understands everything that might happen then I think it's okay to let her make the call. My dad did although we certainly all talked about it and he asked our thoughts.

My dad's surgery was very involved and very long. He bled out afterward and had to go back in and he was on a respirator for gosh I dunno several weeks or a month after that. He stayed in the hospital for 3 months and then was disharged to a rehab hospital and from there eventually made his way to the nursing home where he is now. I think it was the loss of blood and being on the vent so long that made his recovery so difficult and incomplete. I would imagine your mom's surgery wouldn't be as long or complicated so her survival/complication rate would probably be better.

Man, I sound like such a downer. I'm not trying to. It's just that after my dad's surgery I remember my mom saying that she thought about him not surviving, but she just didn't think about the complications and him not really recovering. I wanted to be sure you were aware of the possibilities.


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#11 of 30 Old 03-18-2008, 03:09 AM
 
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My dad lost his foot due to an infection just this december. There wasn't a choice, it was spreading too quick, it had to be made in the space of 10 minutes. I don't envy you agonizing over this After this experience with my dad and seeing his amazing will to live, I'm not of the opinion that an amputation is so horrible. I was absolutely devastated at first, but seeing him pull through it showed me more about human strength then anything else has (kinda just realizing this as I type it out). If you mom is in good spirits about it and the docs can handle her care, it might be the best decision...the quality of life question: will she be happier on ungodly amounts of horrible medicines or with a missing arm?

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#12 of 30 Old 03-18-2008, 08:50 PM - Thread Starter
 
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Well we are home now and she's got a doctor that wants a second opinion. Imagine that. We're headed to another hospital in Fla. (Shands) to let an expert in this field take a look at it. We also found out that her mind is not what we thought it was. She is now on Aracept because she seemed to take a downward spiral mentally over the last few days.

You all are so supportive and there is so much good advice and feedback here.

All of these new developments complicate an already complicated situation, but I am coming to terms with the fact that the best thing I can do for her is that which will ensure her the best quality of life possible. I think that that's all that any of us, as children, can do for our parents. I'll update when we get the results of this second opinion. Thank you mamas; you have all helped so much!!
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#13 of 30 Old 03-20-2008, 04:17 AM
 
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GenB I'm so sorry about your Mom's health. I was my Mom's caretaker from 1999 until she passed in 2006. My Mom has serious diabetic issues which slowly stole her from us. In 2002 she had a series of surgeries on her leg starting with amputation of toes, then between the knee and ankle, then up beyond her knee. She had also lost two fingers on her left hand.

It's a hard choice when Dr's are telling you well this will save you, but it could make things worse, it could help your pain, but it could create new problems. It's all these outside voices telling you what to do, but never slowing down to make true sense.

I still am conflicted with my choices over my Mom's care. Sometimes I wonder if I fought too hard to save her, allowing her to become a science experiment. But in the end I know that I followed my heart, tried to listen to my Mom's wishes when her mind was clear, I did my best. It's all we can do, we don't have all the answers.

I know it is very common for older people to become mentally unstable at times while they are in the hospital. It's not only the drugs, I did a lot of reading on this years back, I don't remember the exact why it happens, but it's basically a coping mechanism. It's hard being in the hospital, having people disrupt your sleep to take your BP, being drugged, not being in your own comfortable surroundings. It's quite normal for the mind to take a vacation during this time so the patient can get threw it.

When you feel overwhelmed you need to take a minute, and take a breath. If you pray, say a silent prayer of clarity. Take a few slow breaths and remember that you have your Mom's best intentions, and focus on making any situation coming her way as comfortable as you can.

When my Mom lost her leg I was convinced that she would die shortly after. She was a very independent woman when she was well, and I thought this would mentally push her over the edge. She actually did far better than I thought. We all learned how to keep her as active as she could be. She learned how to use a wheelchair, and could get around quite well. If it wasn't for the fact that she has so many other health issues I'm sure she would still be wheeling around now.

My thoughts, well wishes, and prayers are with you and your Mom. Nobody knows exactly what your going threw, as all our situations are unique, but we're all here if you need a friend.

-Janna, independent mother of dd, Ms. Mattie Sky born on my 25th birthday, 06*23*2000. My Mama Feb.21,1938-Sept.10,2006
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#14 of 30 Old 03-20-2008, 12:13 PM
 
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s, mama. I just want to tell you how amazing it is that you are caring for your mother. You can just feel the strength coming out of your posts. I don't have a lot of advice...

I know that this is an emotional issue for you and your brothers. Are you the oldest? Is there anyway that you can just tell them "Hey! I need your support here!" For me, especially with my younger siblings, I get so caught up in taking care of everyone that I forget to ask for help when I'm at the end of my rope.

And you can always post here on MDC, the thread that beanma posted has helped me alot.

And I want to second the suggestion to ask the doctor about phantom pains.

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#15 of 30 Old 03-20-2008, 12:17 PM
 
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#16 of 30 Old 03-20-2008, 12:57 PM
 
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Just wanted to pop in and let you know that I am thinking of you and your family. I understand. (Hugs)

~Melissa
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#17 of 30 Old 03-20-2008, 01:11 PM
 
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. . I am coming to terms with the fact that the best thing I can do for her is that which will ensure her the best quality of life possible. I think that that's all that any of us, as children, can do for our parents.
This is exactly how I feel - and I would do the same thing in your situation. Quality of life is so important - and good for you for being willing to make the tough decisions. Many hugs to you & your mom as you go through this together. I'll be sending good wishes your way.

Also - My grandmother was at Shands from January - April of 07 - the staff there was very compassionate, and on the ball. We knew that my grandma got excellent care there.
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#18 of 30 Old 03-20-2008, 05:49 PM - Thread Starter
 
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This is exactly how I feel - and I would do the same thing in your situation. Quality of life is so important - and good for you for being willing to make the tough decisions. Many hugs to you & your mom as you go through this together. I'll be sending good wishes your way.

Also - My grandmother was at Shands from January - April of 07 - the staff there was very compassionate, and on the ball. We knew that my grandma got excellent care there.
Thanks KellMck. I'm not sure that she's up for chemo, more radiation, etc., but at least this doctor will take a look and give us another opinion. Having worked in a cancer clinic myself, I'm honestly not sure which is worse...weeks of chemo and all that it entails, or the amputation of a limb.

Trinity, you are so right. We realized with my FIL that taking elderly people out of their environment can really wreak havoc with their minds. She has leveled out a bit since being home with me. I don't give her pain meds if she is not in pain (which she hasn't been!) and she is still confused and forgetful like she has been the last 2 years, but she isn't out of touch with reality (not realizing she was in the hospital!).

You know, getting old really can be a sad process. My sibilings seem to have forgotten she exists, or that I have teenage children and a husband. They are quick to tell me what to do when they occasionally call and, needless to say, their "directives" are usually not at all realistic or helpful.

Fortunately, I have the incredible mamas on MDC and a wonderful dh. My children are even falling in line and helping!
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#19 of 30 Old 03-20-2008, 05:56 PM - Thread Starter
 
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Kellmck, do you mind if I ask about your grandmother's experience at Shands? Specifically, did a family member move down there with her? I'm sure that moving mom down there for an extended period for treatment might be one of the options we're going to have to decide on and truthfully, I'm not sure I can move down there with her and I know my brothers and sils will not assist with that. Any feedback you are comfortable giving me would be appreciated....Thanks!
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#20 of 30 Old 03-20-2008, 06:07 PM
 
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She is now on Aracept because she seemed to take a downward spiral mentally over the last few days.
I just had to comment on Aracept. I cared for my elderly grandfather in law and we had wonderful success with this drug--and I am usually pretty antidrug. Before taking it he didn't really know who anyone was, including his beloved immediate family. He couldn't dress himself and sometimes forgot how to walk and was very aggressive. Within a few months he was coherent, coordinated, kind and his memory was worlds better. When he died last year, he knew who everyone was, he knew I was about to have his great grandson and passed away feeling loved and ready.
I hope your mother has this luck too
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#21 of 30 Old 03-20-2008, 06:57 PM
 
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You know, getting old really can be a sad process. My sibilings seem to have forgotten she exists, or that I have teenage children and a husband. They are quick to tell me what to do when they occasionally call and, needless to say, their "directives" are usually not at all realistic or helpful.
Yeah, it is sad. My brothers both live around a 45 min. drive from here, and my sister moved across the country while my Mom was sick. I guess I'm lucky they didn't try to direct me much, but they also didn't lend much support either. I'm the youngest of my siblings I thought I was suppose to be the spoiled one.

In my Mom's last year she didn't have the strength to get out of her chair on her own. So I would stay up late, my Dad would get up early so that she could go to the bathroom. One night I was helping my mom in the bathroom and she looked up at me with the saddest look on her face and said "You know, getting old sucks". Then we laughed. Our family has a way of bringing humor into really sad situations. That memory makes me want to laugh and cry at the same time.

-Janna, independent mother of dd, Ms. Mattie Sky born on my 25th birthday, 06*23*2000. My Mama Feb.21,1938-Sept.10,2006
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#22 of 30 Old 03-20-2008, 07:12 PM
 
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If it were up to me and my mom was asking for the surgery I would agree to it. It seems unfair that she is needlessly in pain from this recurring tumor, as tragic as it is for her to lose one of her arms. I wish you peace in whatever decision you do finally come to.
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#23 of 30 Old 03-20-2008, 08:41 PM - Thread Starter
 
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Oh Trinity, my mom said that just the other day! We laughed, too. My husband's family has that incredible knack of bringing humor into bad situations too and it really helps so much!!

Hanno, I'm very glad for your response. I have had two other people tell me not to put too much stock into it; they didn't see any improvement. Mom is not quite as addled as she was in the hospital. She just repeats herself alot and gets confused easily. I think it will help. After your comment, we're definitely going to give it a try!

She wanted this surgery last week; now she doesn't. It didn't happen when it was supposed to, and maybe we needed this break. I am just trying very hard to keep in touch with her feelings and wishes.
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#24 of 30 Old 04-23-2008, 10:40 AM
 
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GenB how's your Mom doing? Plus, how are YOU doing?

-Janna, independent mother of dd, Ms. Mattie Sky born on my 25th birthday, 06*23*2000. My Mama Feb.21,1938-Sept.10,2006
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#25 of 30 Old 04-23-2008, 01:09 PM
 
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It sounds to me like you are being so thoughtful and loving in this tough decision. I don't have anything to add to all the suggestions made here, just wanted to say, I think you are doing your very best and clearly are a very loving and thoughtful person.

Agnieszka wife to Kevin, Kalina (Jan 7, 2005), Tosia (June 4, 2006) , and baby Emmett (Dec 27, 2009)
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#26 of 30 Old 04-24-2008, 05:16 PM - Thread Starter
 
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Thank you so much for all these wonderful words of encouragement! I do have an update. We had the surgery Tuesday. They took off her arm above the elbow at about mid-bicep. She came through the surgery beautifully and her attitude is great. She's suffering a bit today from post surgery fatigue, etc. and is sleeping alot but her frame of mind is really good. I hope and pray this keeps up. She is tons stronger than I am and I have really learned alot from this experience.

Thankfully we got her moved last week into an assisted care facility full of people that adore her. She came home yesterday morning (yes, it was just an overnight stay!!) to balloons, hugs, kisses and lots of attention!!!

She walked the halls and visited people, has had a constant stream of company and is doing better than I ever imagined!

Thanks to everyone for the incredible support I got on this thread! It was really so helpful to come here to vent and get feedback. I didn't get that so much from some of my family and was there with her by myself for the surgery and pre-op. It was hard, but we did it! I am very grateful to all you wonderful mamas for your good wishes and advice.

She is an amazing person and I hope I'm just like her when I'm 88!!
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#27 of 30 Old 04-24-2008, 05:33 PM
 
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Hoping for a swift recovery for your mom. I'm sorry you had such a heartbreaking decision to make, but I'm glad she is doing well.
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#28 of 30 Old 04-25-2008, 01:28 AM
 
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Oh, Gen, that's wonderful! Your mama is one lucky woman to have such a wonderful daughter . I had been envisioning a total amputation, but mid bicep actually preserves some function, so that's a great outcome. I am so glad she is doing better!
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#29 of 30 Old 04-25-2008, 06:05 PM - Thread Starter
 
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Thanks mamas! I talked to her today and she's really doing well. Her sense of humor is really kicking in which has helped tremendously! This whole thing has been a nightmare and a extraordinary gift as well.
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#30 of 30 Old 04-28-2008, 02:48 AM
 
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Quote:
Originally Posted by GenB View Post
Thanks mamas! I talked to her today and she's really doing well. Her sense of humor is really kicking in which has helped tremendously! This whole thing has been a nightmare and a extraordinary gift as well.
I love how that works!! I am starting to recognize that no matter what happens, if I simply acknowledge what IS without judgement, my heart can open to everything about the situation and I can just BE It always turns out great!
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