PTSD sufferers - please post here

[especiallyheather]

I have never been diagnosed with PTSD, but I do believe I suffer from it. I debated putting my entire story on here for fear digging it all back up and reliving it again, but in the end I felt compelled to do it.

My daughter, Emma Grace was born on June 5th, 2001. We were told during an ultrasound on April 4th that her heart was massively enlarged and that she wouldn't survive until birth. I was told to go home and wait; to call when she stopped moving. That if she was born alive that she would not make it.

She was born alive and she did make it. After 4 months on life support in the NICU she finally received a new heart on Oct 2nd 2001. She was diagnosed with Histiocytoid Cardiomyopathy and Mitochondrial Myopathy

The first 5 years of her life were filled with MANY hospital stays (months on end) but she was alive and that was all that mattered to my family. I have 2 other children and to think of all the memories that I missed, my son was only 1 year old when Emma was born. I missed his first steps, his first word... I had major guilt over the fact that I felt I had abandoned my other 2 children.

In 2005 she was diagnosed with autism.

Her 6th year was almost hospital free. She would go in and out, but never for any significant length of time.

In April of 2007 (notice a pattern?) I was diagnosed with a malignant brain tumor {anaplastic astrocytoma} There is a lot to this story, but I will skip for brevity sake. (you can read about it here) In May of 2007 I had brain surgery to remove the tumor that was the size of a 9 iron located in my left frontal lobe. I underwent 6 weeks of radiation and chemo simultaneously and a full year of chemo.

Back to Emma. She was strong and healthy up until February 2010. She contracted a virus that attacked her kidneys and lungs. She spent months in ICU on life support. In March of 2010 she came home and within 24 hours she suffered one of many Grand mal seizures. She continued to subclinically seize (brain seizing but body is still) for 3 days until the decision was made to put her into a medically induced coma. When she woke up, she could no longer speak or see. She was diagnosed with Cortical Vision Impairment and could say a few words. She was neurologically like a 9 month old, requiring 24/7 care. Before the seizures she was fully capable of doing pretty much anything a 4 year old would be able to do (use the bathroom/ feed herself/ brush her teeth with assistance) After the seizures our world as we knew it DRASTICALLY changed. She lived like this until the day she passed away. You can read about that day here, but be aware, pictures and story may be triggers.

Emma passed away on Good Friday, April 22nd 2011. She died of Congestive Heart Failure, truly a broken heart. The decision was made to turn off the machines after 7+ weeks in ICU. During those 7+ weeks I suffered from many panic attacks. I couldn't sleep. I just cried. I suffered major guilt because I signed those papers to turn the machines off, basically ending her life. I couldn't be in the room when she took her last breath, which made me feel like such a coward. When she was born I made a promise to her that I would be there until the end... and when she needed me most I sat outside her door on the floor, numb. For many months I would have nightmares about me digging her up (she was cremated) holding her breathing body in my arms and panicking because she was barely alive.... I had to get her to the hospital.

That was when I could sleep.

I was put on medication to sleep, medication to cope... I finally got off all of my med's 6 months ago and I cannot tell you the difference that has made.

It has been 2 years since the day Emma passed. 2 years of grief, sorrow, guilt, and most of all missing her laugh. My house is so very quiet now. But amidst those two years, there has also been great healing and coming to terms with the fact that I did all I could do for my daughter. I went above and beyond to make sure that her life here was as normal and happy as I could. She was such a joy, so very loving... and smiled all of the time. There wasn't a day when she wasn't smiling. I have forgiven myself for the things that I felt guilty over, and realized that there is grace for things that, at that moment, were out of my control.

I still have moments of panic, usually in my sleep where wake up abruptly, very tight chested. I have not had that dream in almost 6 months.

I still very much miss her... she was my world. There will always be in Emma sized hole in my heart....

 

[Gecko100]

I have never been diagnosed with PTSD, but I do believe I suffer from it. I debated putting my entire story on here for fear digging it all back up and reliving it again, but in the end I felt compelled to do it.

My daughter, Emma Grace was born on June 5th, 2001. We were told during an ultrasound on April 4th that her heart was massively enlarged and that she wouldn't survive until birth. I was told to go home and wait; to call when she stopped moving. That if she was born alive that she would not make it.

She was born alive and she did make it. After 4 months on life support in the NICU she finally received a new heart on Oct 2nd 2001. She was diagnosed with Histiocytoid Cardiomyopathy and Mitochondrial Myopathy

The first 5 years of her life were filled with MANY hospital stays (months on end) but she was alive and that was all that mattered to my family. I have 2 other children and to think of all the memories that I missed, my son was only 1 year old when Emma was born. I missed his first steps, his first word... I had major guilt over the fact that I felt I had abandoned my other 2 children.

In 2005 she was diagnosed with autism.

Her 6th year was almost hospital free. She would go in and out, but never for any significant length of time.

In April of 2007 (notice a pattern?) I was diagnosed with a malignant brain tumor {anaplastic astrocytoma} There is a lot to this story, but I will skip for brevity sake. (you can read about it here) In May of 2007 I had brain surgery to remove the tumor that was the size of a 9 iron located in my left frontal lobe. I underwent 6 weeks of radiation and chemo simultaneously and a full year of chemo.

Back to Emma. She was strong and healthy up until February 2010. She contracted a virus that attacked her kidneys and lungs. She spent months in ICU on life support. In March of 2010 she came home and within 24 hours she suffered one of many Grand mal seizures. She continued to subclinically seize (brain seizing but body is still) for 3 days until the decision was made to put her into a medically induced coma. When she woke up, she could no longer speak or see. She was diagnosed with Cortical Vision Impairment and could say a few words. She was neurologically like a 9 month old, requiring 24/7 care. Before the seizures she was fully capable of doing pretty much anything a 4 year old would be able to do (use the bathroom/ feed herself/ brush her teeth with assistance) After the seizures our world as we knew it DRASTICALLY changed. She lived like this until the day she passed away. You can read about that day here, but be aware, pictures and story may be triggers.

Emma passed away on Good Friday, April 22nd 2011. She died of Congestive Heart Failure, truly a broken heart. The decision was made to turn off the machines after 7+ weeks in ICU. During those 7+ weeks I suffered from many panic attacks. I couldn't sleep. I just cried. I suffered major guilt because I signed those papers to turn the machines off, basically ending her life. I couldn't be in the room when she took her last breath, which made me feel like such a coward. When she was born I made a promise to her that I would be there until the end... and when she needed me most I sat outside her door on the floor, numb. For many months I would have nightmares about me digging her up (she was cremated) holding her breathing body in my arms and panicking because she was barely alive.... I had to get her to the hospital.

That was when I could sleep.

I was put on medication to sleep, medication to cope... I finally got off all of my med's 6 months ago and I cannot tell you the difference that has made.

It has been 2 years since the day Emma passed. 2 years of grief, sorrow, guilt, and most of all missing her laugh. My house is so very quiet now. But amidst those two years, there has also been great healing and coming to terms with the fact that I did all I could do for my daughter. I went above and beyond to make sure that her life here was as normal and happy as I could. She was such a joy, so very loving... and smiled all of the time. There wasn't a day when she wasn't smiling. I have forgiven myself for the things that I felt guilty over, and realized that there is grace for things that, at that moment, were out of my control.

I still have moments of panic, usually in my sleep where wake up abruptly, very tight chested. I have not had that dream in almost 6 months.

I still very much miss her... she was my world. There will always be in Emma sized hole in my heart....

Such a tremendous amount of grief endured for a very long time, grief for the loss of a 'normal' child her potential, her future, and her health, and then it starts for your own issues. Those are the worst possible scenarios that any mother could endure. You were very much there at the end, you didn't leave her at all. You made some incredibly tough decisions that never faces most parents.
Simply heart wrenching choices made from love and the improvement of her precious life. You did your very best with all that she needed, and you never let her down in any way, in fact you saved her from further suffering. Of course she lives on in your heat she belongs there you were
a good kind mother whilst managing some of your own stuff, and that takes courage and determination all of which you posses.
You have unbelievable resilience and strength which you possess.
PTSD or not, you have experienced major trauma.
All the best.

 

[Zuri]

I have read the most heartbreaking stories on this thread and site. My heart goes out to you all as. I can truly sympathize with your losses. Hugs to all of you.

 

[Anna1964]

I want to thank everyone for posting. I have tried to post several times, but have been unable to actually do it. Long story short my childhood was not so great. Then in my late teens I was sexually assaulted. I saw a Dr for a few weeks and he told me I had PTSD because of the childhood abuse and rape. Saw him for a while. Fast forward to a year ago. Something happened. Something very violent.. an incident... don't even know what to call it.... happened in my home to my son and I. We survived. I cannot describe it now... even now I am about to have a panic attack saying this much. Maybe later. Anyway it changed me. I feel like the last year I have not even been a person anymore. I lost the ability to function... if anyone knows what I mean. I really want to thank you all cause it helps so much to know there are others out there and especially others that have been helped by therapy. I am currently seeing a therapist that has ptsd, have medication which seems to help with some things, and I am hoping for the best. Bless every single one of you guys and thank you so very much.

 

[ArianeEmory]

I'm almost embarrassed adding to the stories here, as my situation could have been worse, but like many of you I have been left with panic attacks, hypervigilance, shrieking when someone sneaks up on me, and some control-freak tendencies as a result of a childhood incident.

Like many of you 'childhood wasn't so great'. I am fortunate in that I dodged the bullet of sexual abuse (although my parents' poor choices endangered me many times--we actually had a sexual predator staying in the house with us for a while, but he was never alone with me). But my father was a low-rent drug dealer in the 80s, and as my parents spiraled downwards into drug abuse, the house filled with a variety of low-lifes. There were many incidents I won't go into, and mostly I accepted it as normal because I didn't know any better. (Things started going bad when I was 6 or 7.)

When I was 12, we had a home invasion by my father's 'upstream' drug supplier. The guy was completely crazy on cocaine and whatever and apparently hadn't slept for days. He came into the house with a .357 in one hand, and a baseball bat duct-taped to the other. I was upstairs, so I heard more than I saw--yelling, screaming, him hitting the walls with the bat, and also gunfire. (No one was shot, but he shot the floor very close to my mother.)

I hid in my bedroom closet while listening to the horrible sounds (I think it is why I am very sensitive to loud noises now). My brother jumped from the second floor window (fracturing his ankle) and ran to a convenience store to call 911. Remember, I had no idea what was happening at the time, or who it was, only the sounds of violence and mayhem. I waited for the attacker(s) to come upstairs and find me in the closet and kill me--I was convinced I was going to be dead at any minute. But it was a small town and the cops showed up before he seriously injured anyone (he got my Dad with the bat several times).

There's more to it that makes the situation much worse (basically my parents making me do something, very publicly, that demonstrated they didn't care one tiny bit about how I was affected by the incident), but in the interest of anonymity I have to keep it to myself.

I started having panic attacks and night terrors (waking up and finding myself running down the hall, terrified) pretty regularly. I would imagine I was hearing sirens and that the world was ending. Parents were too drugged up to care, even when I woke them up in the middle of the night with the auditory hallucinations. The panic attacks continued throughout my teens (and could be triggered by social anxiety--dating didn't happen), and then gradually subsided, only to return 20 years later when I was dealing with cancer in several family members at once.

But I've ALWAYS, since the incident, been jumpy, insomniac, and terrified of not being in control. I think because I was trapped upstairs with no way to escape (I was too afraid to jump out of the 2nd floor window like my brother did). I always mentally have an escape route planned in any location now. I have a very hard time flying, and I usually have to be the person driving in any car. I have to keep benzos around since the panic attacks started again (2 years ago). My parents basically still act like it's stupid that I was ever affected by the incident, much less that it ended up being my psychological 'defining moment' which would affect the rest of my life.

I am interested in trying the EMDR therapy. I don't want to be reliant on the benzos (I try to only take them for panic attacks), but I can't imagine not having them right now. I would not be able to fly without them, or occasionally, to function at work.

Thanks for listening.

 

[Gecko100]

I want to thank everyone for posting. I have tried to post several times, but have been unable to actually do it. Long story short my childhood was not so great. Then in my late teens I was sexually assaulted. I saw a Dr for a few weeks and he told me I had PTSD because of the childhood abuse and rape. Saw him for a while. Fast forward to a year ago. Something happened. Something very violent.. an incident... don't even know what to call it.... happened in my home to my son and I. We survived. I cannot describe it now... even now I am about to have a panic attack saying this much. Maybe later. Anyway it changed me. I feel like the last year I have not even been a person anymore. I lost the ability to function... if anyone knows what I mean. I really want to thank you all cause it helps so much to know there are others out there and especially others that have been helped by therapy. I am currently seeing a therapist that has ptsd, have medication which seems to help with some things, and I am hoping for the best. Bless every single one of you guys and thank you so very much.

I'm sure every single person here knows very well knows what the 'loss and ability to function' feels like and are doing it right here with you.
Well done for coming so far, it takes a lot of guts to explain the most terrorising things that have happened in your life. Lucky you found a therapist with PTSD, there is no substitute for experience, your therapist knows what it feels like.
Wouldn't it be great if we could post as a self-help group? We are all very understanding of our need to be sensitive to each other.
We already have a group...

 

[Gecko100]

I'm almost embarrassed adding to the stories here, as my situation could have been worse, but like many of you I have been left with panic attacks, hypervigilance, shrieking when someone sneaks up on me, and some control-freak tendencies as a result of a childhood incident.

Like many of you 'childhood wasn't so great'. I am fortunate in that I dodged the bullet of sexual abuse (although my parents' poor choices endangered me many times--we actually had a sexual predator staying in the house with us for a while, but he was never alone with me). But my father was a low-rent drug dealer in the 80s, and as my parents spiraled downwards into drug abuse, the house filled with a variety of low-lifes. There were many incidents I won't go into, and mostly I accepted it as normal because I didn't know any better. (Things started going bad when I was 6 or 7.)

When I was 12, we had a home invasion by my father's 'upstream' drug supplier. The guy was completely crazy on cocaine and whatever and apparently hadn't slept for days. He came into the house with a .357 in one hand, and a baseball bat duct-taped to the other. I was upstairs, so I heard more than I saw--yelling, screaming, him hitting the walls with the bat, and also gunfire. (No one was shot, but he shot the floor very close to my mother.)

I hid in my bedroom closet while listening to the horrible sounds (I think it is why I am very sensitive to loud noises now). My brother jumped from the second floor window (fracturing his ankle) and ran to a convenience store to call 911. Remember, I had no idea what was happening at the time, or who it was, only the sounds of violence and mayhem. I waited for the attacker(s) to come upstairs and find me in the closet and kill me--I was convinced I was going to be dead at any minute. But it was a small town and the cops showed up before he seriously injured anyone (he got my Dad with the bat several times).

There's more to it that makes the situation much worse (basically my parents making me do something, very publicly, that demonstrated they didn't care one tiny bit about how I was affected by the incident), but in the interest of anonymity I have to keep it to myself.

I started having panic attacks and night terrors (waking up and finding myself running down the hall, terrified) pretty regularly. I would imagine I was hearing sirens and that the world was ending. Parents were too drugged up to care, even when I woke them up in the middle of the night with the auditory hallucinations. The panic attacks continued throughout my teens (and could be triggered by social anxiety--dating didn't happen), and then gradually subsided, only to return 20 years later when I was dealing with cancer in several family members at once.

But I've ALWAYS, since the incident, been jumpy, insomniac, and terrified of not being in control. I think because I was trapped upstairs with no way to escape (I was too afraid to jump out of the 2nd floor window like my brother did). I always mentally have an escape route planned in any location now. I have a very hard time flying, and I usually have to be the person driving in any car. I have to keep benzos around since the panic attacks started again (2 years ago). My parents basically still act like it's stupid that I was ever affected by the incident, much less that it ended up being my psychological 'defining moment' which would affect the rest of my life.

I am interested in trying the EMDR therapy. I don't want to be reliant on the benzos (I try to only take them for panic attacks), but I can't imagine not having them right now. I would not be able to fly without them, or occasionally, to function at work.

Thanks for listening.

Embarrassing, could have been worse? Not at all, and you go to work too? That's amazing!
You were very damaged as a child, and to have parents who disbelieve your experiences is selfish and cruel. I know that from my own experiences.
I believe you and hope you make that a defining moment for the rest of your life.
You were a powerless child and you have the insight to see that it is linked to your need for 'obsessive' control. It's a symptom of a prolonged flashback set in motion by triggers that remind you of a very powerless childhood, and the consequences that went with it to your little developing brain. Your brain as an adult is capable of being retrained to focus on the here and now, not cyclical replays of childhood.
I would try anything to refocus my reality, and have found mindfulness to be a great technique for remaining in the here and now, as well as some desensitising. I was once very afraid of lifts hight's and planes and even bridges because of childhood experiences.
I can completely understand the plane fear, and have used drugs too to overcome it. Handing over your life to complete strangers is no easy task, especially when the people in whom you should have had the most trust in, (your parents/authority) destroy it and minimise it and expect you to 'get on with things' all the while re-traumatising you with disbelief.
That would scare the pants off me.
I have often struggled with concept of almost wanting to die, but being afraid that I might die. It's a paradox when depression accompanies total fear.
You are doing a tremendously good job! And you even go to work...
EMDR, therapy, different techniques, try all of them one or other will work if you put the effort in, and you sound determined, so go for it!

 

[Ausgirl]

One thing I learned from the support communities I found online -- everything is relative. What traumatises one person might seem insignificant to another person, or in relation to what other people have suffered, but that makes it no LESS a trauma, if the victim is truly traumatised by it. Nothing to be embarrassed about!

The reason I'm not linking the various support sites I found is that I wound up with mixed feelings about them -- on one hand, they were truly a blessing, and helped me feel not alone, and provided a lot of valuable info and insights..

On the other hand, I had to step away.. a lot of folks in these places seemed to be perpetually caught up in victim-thinking and unable to talk about anything or anyone but themselves and their victimhood, IYKWIM. And other reasons... I just found it not a healthy thing to spend a lot of time there, once I'd found the info I needed, which was a shame.

 

[especiallyheather]

One thing I learned from the support communities I found online -- everything is relative. What traumatises one person might seem insignificant to another person, or in relation to what other people have suffered, but that makes it no LESS a trauma, if the victim is truly traumatised by it. Nothing to be embarrassed about!

The reason I'm not linking the various support sites I found is that I wound up with mixed feelings about them -- on one hand, they were truly a blessing, and helped me feel not alone, and provided a lot of valuable info and insights..

On the other hand, I had to step away.. a lot of folks in these places seemed to be perpetually caught up in victim-thinking and unable to talk about anything or anyone but themselves and their victimhood, IYKWIM. And other reasons... I just found it not a healthy thing to spend a lot of time there, once I'd found the info I needed, which was a shame.

BBM...
That is the one reason that I did not return to the cancer support group nor the grieving moms support group that I attended... I wanted help, real help to move past those memories in my life... and I felt like they wanted to sit in the same spot and talk about their circumstances over and over again without any real conclusion. I have always been a person who requires a "period to the end of my sentences" so to speak. I will never ever get over losing a child and having cancer- it is just not possible.. but it also doesn't define who I am what I want and NEED to become in my future.

 

[Justiceforever]

To be honest, as I try to catch up and read through each post, I start to "go away" (dissociate) it triggers ALOT of emotion. Having said that , I thank each and everyone of you who has bared your pain and I pray that it is cathargic for you as it has been for me. As I am able, slowly, I Will reread your posts. Thank you again and God Bless !

 

[katiedid2]

I have never been diagnosed with PTSD, but I do believe I suffer from it. I debated putting my entire story on here for fear digging it all back up and reliving it again, but in the end I felt compelled to do it.

My daughter, Emma Grace was born on June 5th, 2001. We were told during an ultrasound on April 4th that her heart was massively enlarged and that she wouldn't survive until birth. I was told to go home and wait; to call when she stopped moving. That if she was born alive that she would not make it.

She was born alive and she did make it. After 4 months on life support in the NICU she finally received a new heart on Oct 2nd 2001. She was diagnosed with Histiocytoid Cardiomyopathy and Mitochondrial Myopathy

The first 5 years of her life were filled with MANY hospital stays (months on end) but she was alive and that was all that mattered to my family. I have 2 other children and to think of all the memories that I missed, my son was only 1 year old when Emma was born. I missed his first steps, his first word... I had major guilt over the fact that I felt I had abandoned my other 2 children.

In 2005 she was diagnosed with autism.

Her 6th year was almost hospital free. She would go in and out, but never for any significant length of time.

In April of 2007 (notice a pattern?) I was diagnosed with a malignant brain tumor {anaplastic astrocytoma} There is a lot to this story, but I will skip for brevity sake. (you can read about it here) In May of 2007 I had brain surgery to remove the tumor that was the size of a 9 iron located in my left frontal lobe. I underwent 6 weeks of radiation and chemo simultaneously and a full year of chemo.

Back to Emma. She was strong and healthy up until February 2010. She contracted a virus that attacked her kidneys and lungs. She spent months in ICU on life support. In March of 2010 she came home and within 24 hours she suffered one of many Grand mal seizures. She continued to subclinically seize (brain seizing but body is still) for 3 days until the decision was made to put her into a medically induced coma. When she woke up, she could no longer speak or see. She was diagnosed with Cortical Vision Impairment and could say a few words. She was neurologically like a 9 month old, requiring 24/7 care. Before the seizures she was fully capable of doing pretty much anything a 4 year old would be able to do (use the bathroom/ feed herself/ brush her teeth with assistance) After the seizures our world as we knew it DRASTICALLY changed. She lived like this until the day she passed away. You can read about that day here, but be aware, pictures and story may be triggers.

Emma passed away on Good Friday, April 22nd 2011. She died of Congestive Heart Failure, truly a broken heart. The decision was made to turn off the machines after 7+ weeks in ICU. During those 7+ weeks I suffered from many panic attacks. I couldn't sleep. I just cried. I suffered major guilt because I signed those papers to turn the machines off, basically ending her life. I couldn't be in the room when she took her last breath, which made me feel like such a coward. When she was born I made a promise to her that I would be there until the end... and when she needed me most I sat outside her door on the floor, numb. For many months I would have nightmares about me digging her up (she was cremated) holding her breathing body in my arms and panicking because she was barely alive.... I had to get her to the hospital.

That was when I could sleep.

I was put on medication to sleep, medication to cope... I finally got off all of my med's 6 months ago and I cannot tell you the difference that has made.

It has been 2 years since the day Emma passed. 2 years of grief, sorrow, guilt, and most of all missing her laugh. My house is so very quiet now. But amidst those two years, there has also been great healing and coming to terms with the fact that I did all I could do for my daughter. I went above and beyond to make sure that her life here was as normal and happy as I could. She was such a joy, so very loving... and smiled all of the time. There wasn't a day when she wasn't smiling. I have forgiven myself for the things that I felt guilty over, and realized that there is grace for things that, at that moment, were out of my control.

I still have moments of panic, usually in my sleep where wake up abruptly, very tight chested. I have not had that dream in almost 6 months.

I still very much miss her... she was my world. There will always be in Emma sized hole in my heart....

Thank you kindly for sharing! This has been hard on you I know I don't know what to say to you to comfort you. I'm sending you a big virtual hug. Words are not enough to express my sadness at your story.

(((((Hugs my friend)))))

 

[katiedid2]

((((((((Hugs To all of you PTSD sufferers from my heart to yours )))))))

 

[Zuri]

After my brother's murder, I was in and out of therapy for the past 30 years. No one knew what to do with trauma. They all wanted to explore my childhood which was a "normal, upper middle class" upbringing. It wasn't until 2010, 28 years after my brothers death that a fabulous therapist diagnosed me. She saw me for 2 years and then referred me to my current therapist who specializes in PTSD.

I have always known there was something wrong. It just took a long time to get the right help. My therapist told me that "Trauma Survivors have symptoms instead of memories". (Harvey, 1990). That simple statement helped a lot as I can't remember things, but I remember every single sight and sound, word, voices etc in that ER when they brought my dying brother in. The EMDR that I am doing is rough, but it is helping. I have descended into hell, but I have come back up. It is definitely a process and it takes time. But now I am gaining perspective and I am not punishing myself for not being able to save my beloved brother like I used to. Even now as I write, I am in tears as it is still so painful.

Thank you for letting me share. I am so so sorry so many of you have had such repetitive horror and traumas. My heart reaches out to you. I just want to hug you all. (((())))))

 

[Zuri]

I have never been diagnosed with PTSD, but I do believe I suffer from it. I debated putting my entire story on here for fear digging it all back up and reliving it again, but in the end I felt compelled to do it.

My daughter, Emma Grace was born on June 5th, 2001. We were told during an ultrasound on April 4th that her heart was massively enlarged and that she wouldn't survive until birth. I was told to go home and wait; to call when she stopped moving. That if she was born alive that she would not make it.

She was born alive and she did make it. After 4 months on life support in the NICU she finally received a new heart on Oct 2nd 2001. She was diagnosed with Histiocytoid Cardiomyopathy and Mitochondrial Myopathy

The first 5 years of her life were filled with MANY hospital stays (months on end) but she was alive and that was all that mattered to my family. I have 2 other children and to think of all the memories that I missed, my son was only 1 year old when Emma was born. I missed his first steps, his first word... I had major guilt over the fact that I felt I had abandoned my other 2 children.

In 2005 she was diagnosed with autism.

Her 6th year was almost hospital free. She would go in and out, but never for any significant length of time.

In April of 2007 (notice a pattern?) I was diagnosed with a malignant brain tumor {anaplastic astrocytoma} There is a lot to this story, but I will skip for brevity sake. (you can read about it here) In May of 2007 I had brain surgery to remove the tumor that was the size of a 9 iron located in my left frontal lobe. I underwent 6 weeks of radiation and chemo simultaneously and a full year of chemo.

Back to Emma. She was strong and healthy up until February 2010. She contracted a virus that attacked her kidneys and lungs. She spent months in ICU on life support. In March of 2010 she came home and within 24 hours she suffered one of many Grand mal seizures. She continued to subclinically seize (brain seizing but body is still) for 3 days until the decision was made to put her into a medically induced coma. When she woke up, she could no longer speak or see. She was diagnosed with Cortical Vision Impairment and could say a few words. She was neurologically like a 9 month old, requiring 24/7 care. Before the seizures she was fully capable of doing pretty much anything a 4 year old would be able to do (use the bathroom/ feed herself/ brush her teeth with assistance) After the seizures our world as we knew it DRASTICALLY changed. She lived like this until the day she passed away. You can read about that day here, but be aware, pictures and story may be triggers.

Emma passed away on Good Friday, April 22nd 2011. She died of Congestive Heart Failure, truly a broken heart. The decision was made to turn off the machines after 7+ weeks in ICU. During those 7+ weeks I suffered from many panic attacks. I couldn't sleep. I just cried. I suffered major guilt because I signed those papers to turn the machines off, basically ending her life. I couldn't be in the room when she took her last breath, which made me feel like such a coward. When she was born I made a promise to her that I would be there until the end... and when she needed me most I sat outside her door on the floor, numb. For many months I would have nightmares about me digging her up (she was cremated) holding her breathing body in my arms and panicking because she was barely alive.... I had to get her to the hospital.

That was when I could sleep.

I was put on medication to sleep, medication to cope... I finally got off all of my med's 6 months ago and I cannot tell you the difference that has made.

It has been 2 years since the day Emma passed. 2 years of grief, sorrow, guilt, and most of all missing her laugh. My house is so very quiet now. But amidst those two years, there has also been great healing and coming to terms with the fact that I did all I could do for my daughter. I went above and beyond to make sure that her life here was as normal and happy as I could. She was such a joy, so very loving... and smiled all of the time. There wasn't a day when she wasn't smiling. I have forgiven myself for the things that I felt guilty over, and realized that there is grace for things that, at that moment, were out of my control.

I still have moments of panic, usually in my sleep where wake up abruptly, very tight chested. I have not had that dream in almost 6 months.

I still very much miss her... she was my world. There will always be in Emma sized hole in my heart....

I am so sorry for your loss. What a great mother you are and how lucky Emma was to have you. How lucky your other children are to have you and to have had Emma in their lives. I bet they are incredibly loving and compassionate kids from what they have learned. I hope you will heal as much as you can. Hugs to you and yours. Thank you for sharing your story. I know it was hard. (((( ))))

 

[Justiceforever]

(((hugs))) to all that suffer. No longer do you have to be alone or silent! We are strong together!

 

[Justiceforever]

What this thoughtful, compassionate thread offers is validation. Validation that we are not abnormal. We are very normal people who have dealt with very abnormal, traumatic events in our lives and we have found ways to survive. Good or bad ways...it makes no difference...we are alive!
We are not piriahs. We are strong. Survival of the fittest!

 

[Gecko100]

What this thoughtful, compassionate thread offers is validation. Validation that we are not abnormal. We are very normal people who have dealt with very abnormal, traumatic events in our lives and we have found ways to survive. Good or bad ways...it makes no difference...we are alive!
We are not piriahs. We are strong. Survival of the fittest!

Well said, we must move forward with every fibre of our being, we have no option but to live fully. We are all normal people who have experienced abnormal events. It doesn't deny us the right to live like 'normal' human beings.
We have survived the most atrocious of events for anyone.
We have zero to be ashamed of whether it was circumstantial or childhood we caused nothing.
It's the ones who caused it who should be ashamed of themselves not us.

I am not a ptsd, I am a woman mother and grandmother etc., and what I like about myself is that I have compassion and empathy and courage and strength and resilience and honesty and integrity and I recognise it in everyone on this thread, because you all have it too!
Or we wouldn't be here.
We were absolutely meant to survive for many many reasons...:seeya:

 

[AlwaysShocked]

Much of the original work on dealing with PTSD came from the work of psychiatrists associated with the Veteran's Administration hospitals. No matter what anyone's opinion is of the VA in general, in this area they did the pioneering work and studies. And they have some of the longest follow-up data on PTSD patients.

Their literature shows that in a number of cases the patient is older, seemed to cope for years, and then became symptomatic later in life, usually when exposed to some great stress. This information led to VA nurses being trained to recognize and be on the alert for the symptoms of PTSD in pre and post surgical patients with no reported history.

Also, remember that while PTSD is a psychological problem, it is also a physiological problem. It involves the release of epinephrine, which causes a number of physical symptoms, including the pounding heart. So, never discount the role of physician prescribed medications to deal with this aspect of PTSD. I can attest that the medication did not last forever.

Re: Therapy and groups

The person who wrote about the online support group put their finger on the problem with online support groups. There is a difference between a "therapeutic group" and a "support group". I've participated in both.

For PTSD, I had weekly one-to-one therapy with a psychiatrist for several months, then began attending a weekly therapeutic group the psychiatrist led. Plus continued with the one-on-one on a once every two week basis. In that way, issues that came up in group could be still be dealt with on an individual basis. In all, it took almost a year.

For Grief recovery, I used an online support group sponsored by a well credentialed Grief Support Counselor. But an online support group is not "therapy". And I knew that.

Immediately upon joining the online group I could see that while there was lots of support there, there were also participants who had been a member for years and who were still obviously not coping very well.

These folks obviously - to me, at least - needed more. Perhaps face-to-face therapy in addition to online support. I don't know. I know that in addition to the online support group, I did a lot of independent reading about dealing with grief. And I also had the direct support of family and friends. Maybe they did not. I also think that with grief, while very, very painful, it is an "expected" thing. PTSD is not. Maybe it should be.

I am not wanting to put down on-line support groups. But I think participants need to be aware of what they are and what they are not.

 

[Gecko100]

Much of the original work on dealing with PTSD came from the work of psychiatrists associated with the Veteran's Administration hospitals. No matter what anyone's opinion is of the VA in general, in this area they did the pioneering work and studies. And they have some of the longest follow-up data on PTSD patients.

Their literature shows that in a number of cases the patient is older, seemed to cope for years, and then became symptomatic later in life, usually when exposed to some great stress. This information led to VA nurses being trained to recognize and be on the alert for the symptoms of PTSD in pre and post surgical patients with no reported history.

Also, remember that while PTSD is a psychological problem, it is also a physiological problem. It involves the release of epinephrine, which causes a number of physical symptoms, including the pounding heart. So, never discount the role of physician prescribed medications to deal with this aspect of PTSD. I can attest that the medication did not last forever.

Re: Therapy and groups

The person who wrote about the online support group put their finger on the problem with online support groups. There is a difference between a "therapeutic group" and a "support group". I've participated in both.

For PTSD, I had weekly one-to-one therapy with a psychiatrist for several months, then began attending a weekly therapeutic group the psychiatrist led. Plus continued with the one-on-one on a once every two week basis. In that way, issues that came up in group could be still be dealt with on an individual basis. In all, it took almost a year.

For Grief recovery, I used an online support group sponsored by a well credentialed Grief Support Counselor. But an online support group is not "therapy". And I knew that.

Immediately upon joining the online group I could see that while there was lots of support there, there were also participants who had been a member for years and who were still obviously not coping very well.

These folks obviously - to me, at least - needed more. Perhaps face-to-face therapy in addition to online support. I don't know. I know that in addition to the online support group, I did a lot of independent reading about dealing with grief. And I also had the direct support of family and friends. Maybe they did not. I also think that with grief, while very, very painful, it is an "expected" thing. PTSD is not. Maybe it should be.

I am not wanting to put down on-line support groups. But I think participants need to be aware of what they are and what they are not.

Oh yes I agree with what everyone has said about online groups, I'm bemoaning my own needs:blushing:
We are already a group who supports. It's a very fraught minefield out there, you never know who is behind a computer, and I seriously take your points. Thank-you to everyone participating, it's very courageous.
The VA has been a driving force for PTSD, there's no doubt about it, I often read their very valuable research and findings, it's a good resource.:seeya:

 

[OEJ]

I want to thank everyone for posting. I have tried to post several times, but have been unable to actually do it. Long story short my childhood was not so great. Then in my late teens I was sexually assaulted. I saw a Dr for a few weeks and he told me I had PTSD because of the childhood abuse and rape. Saw him for a while. Fast forward to a year ago. Something happened. Something very violent.. an incident... don't even know what to call it.... happened in my home to my son and I. We survived. I cannot describe it now... even now I am about to have a panic attack saying this much. Maybe later. Anyway it changed me. I feel like the last year I have not even been a person anymore. I lost the ability to function... if anyone knows what I mean. I really want to thank you all cause it helps so much to know there are others out there and especially others that have been helped by therapy. I am currently seeing a therapist that has ptsd, have medication which seems to help with some things, and I am hoping for the best. Bless every single one of you guys and thank you so very much.

I know exactly what you mean. I never talk anymore about the trauma. It happened over twenty years ago. I could talk about it if I wanted to without the deep suffering now, though. But, it isn't just me. I have to consider the privacy of others, too. I wasn't alone in the trauma. You may have noticed I said in an earlier post that the person I was before the trauma deconstructed. It was the most unbearable feeling. I lost a LOT of sleep functioning on perhaps three hours a night for almost two years. That didn't help at all, and I could barely do more than stare off into space but I had no choice but to keep going. I lost my old identity, but I don't mind that, now. I'm a better, stronger person than I was before. I'm like a rock now. I trust me.

If I had the internet back then, though, I would have been better off. I had tons of therapy, but there is nothing more affirming than talking with people who know what you are talking about.