Messages

Thank you soooooo very much for all of your kind words and suggestions. I did feel so much better getting that out today...my counselor always wanted me to do group therapy with others who were suffering similar symptoms and could be understanding, but I didn't know if I could do that face to face or not and never did. I am anxious to hear your stories and hear what things help you heal and cope with your symptoms. Thank you for listening and offering kind words. If I did not have a sister, brother and understanding friends to talk to I would have gone mad by now. Thank you so much again

I just found this website today and hope to learn more about C-PTSD from all of you.

I grew up in a physically and emotionally abusive home.  After 27 years of marriage, my parents lost their business and nice home and divorced. I, being the oldest daughter, was the "rock" for each of them through their depressions, venting sessions, suicidal tendencies and financial disasters. I even gave them my student loan to try and help them survive one time, but nothing I did ever helped for more than a minute or an hour.  I was very grateful to have an opportunity to marry and get away, but the day before my wedding my dad dropped the bombshell that he was going to leave my mom after the ceremony.  I don't know how I smiled for the pictures...

After their divorce my dad lived with me off and on in between five disastrous marriages and divorces to other women. He was broke so we kept helping him financially. He kept looking for the perfect woman he could be the "best of friends"  with "with no problems."  Meanwhile, my second daughter was born with severe life threatening issues due to cystic fibrosis. Half of her intestines had twisted off and died and fluid was backing up in her stomach. She looked 9 months pregnant when she was born and couldn't breathe due to the swelling... She had to be intubated and have several surgeries, an ostomy and IV fluids for six months until her body was healed. She had a collapsed lung, a bout of septicemia and a blood clot in her chest catheter...I had to do IV fluids into her chest catheter by myself every night at my house for six months. They taught me how to do it at the hospital for a week and then we took her home. I was stressed out...so worried about her cystic fibrosis outlook and the IV infusion complications I'd been warned about and that happened!

My daughter healed very well and they closed the ostomy and took out the central line at six months of age. I started to relax. By the time she was four years old she had gained weight and was the most special angel imaginable. Dr's told us there would be a cure for CF in the next 5 years. We were hopeful and optimistic and had two more children. Another daughter was born with CF.

I was 2 months pregnant with our last child when all * broke loose.

We moved to a new city for my husband to start his new job. Our second to oldest four-year-old daughter had a slight fever and seemed flu-ish. We were moving into a new apartment that day and I put her on a pillow in the middle of the floor for a nap as I unloaded the car and put things away. She asked me for a drink of water at some point and that was the last conversation we ever had. She had developed a case of meningitis which proceeded to a coma and when I couldn't wake her up to go to the bathroom I rushed her to the hospital.

The Dr. said it could be meningitis, but his pager went off and he left us to help someone at another area of the hospital. He ordered some tests for our daughter before he left, but failed to call someone in for back up at that time. Two hours later she started screaming and having seizures and I was crying and begging for a Dr. The nurse told me to calm down... that a Dr had been paged and she was "monitoring" the seizures, but everything in my body was screaming for me to get help for her.  Twenty minutes later a new Dr was on the scene and she was furious at what hadn't been done. She started from scratch and thought maybe our daughter had been poisoned. An hour later she admitted it might be meningitis and ordered a spinal tap. By then the pressure was too great in our daughter's brain and when they put the tube in her back it let off the pressure---like letting air out of a balloon. Our daughter's brain collapsed. She immediately coded and they inserted a breathing tube and called for a life flight. My husband saw the Dr. shine a flashlight on our daughter's eyes and shake her head, but she didn't say anything to us. I thought we were being life flighted for help...but later learned that is when she had actually died.

As we entered Children's hospital from the life flight the Dr. took one look at our daughter's pupils and screamed, "When was the last time someone checked her pupils?" The life flight nurses looked at the ground and said, "They were like that when we picked her up."  The Dr. looked at me and asked if I was mom and said we needed to talk. She sat me down and explained what had happened already and that she just needed to run some tests to determine brain death. I could NOT believe what she was saying. I was so shocked and stunned. I figured God had a great purpose for my child's life after going through what we went through at her birth. It did not feel at all right that she had died...and that if she did die it was only because of neglect and malpractice not because it was God's will.

I was all alone. I would lay down on my daughter's chest and cry and cry and wonder how I was going to live without her. I felt so guilty and horrible for not getting her the proper help. I was so angry at myself for going to that hospital.

My husband was driving with our other kids to the Chidren's hospital but was still hours away. I watched the brain death tests one by one. As they squirted a 50 cc syringe of cold water into my daughter's ear blood would ooze out due to the T-tubes she had in her ears. She didn't flinch at all. When they poked and prodded for a big vein in her crotch to inject dye...she didn't flinch. When they turned off the breathing machine to measure the C02 in her bloodstream...her chest was so still...for 3 minutes she didn't take a breath and I was so numb and completely distraught.  Organ donation people descended like vultures. I was in a daze but somehow managed to tell them they could have anything but her eyes. I just didn't want them cutting out her beautiful eyes.

They sent her kidneys back East, but in the end the tissues weren't a good enough match so they discarded her organs and sent us a letter thanking us for trying. But that was yet another devastation. I at least wanted a story of where her organ(s) helped to save someone else's life, but no, it wasn't to be. There was nothing positive to our story at all. Nothing. Everything was traumatizing and horrible.  And then three months later we were talking to a cousin who is an ER Dr. and found out that if the original ER Dr. would have given her antibiotics within the first 30 minutes she could have been saved. I didn't sleep for 3 straight days. My mind would not shut off. I had to call my OBGYN and get some sleeping pills because I was 2 months pregnant at the time. Even with sleeping pills I could only sleep two hours. My husband was horribly grieving and my oldest daughter who was 7 was griefstricken and wanting to "kill herself to see if there was really a God."

To make matters worse there were family members who were not sad our daughter had died. They were "relieved" that she "died quickly" and didn't have to live a life of cystic fibrosis.  Uhghghghhghg! I am still not over the fact that we were mourning and others around us were relieved. That still hurts so badly I can not be around those people. Are they going to feel equally relieved if my other children pass away from something?

I called a counselor to get help for my daughter, but found I had more questions about what I was experiencing than anything else. I spent YEARS getting help for my original PTSD symptoms. There was no mention of any other diagnosis than that....but more trauma keeps happening and all the things I learned to do to cope with my original trauma is being greatly tested.

After our daughter died I had a very difficult pregnancy. I had placenta previa and at the 6 month mark went into pre-term labor. I was admitted to the hospital--2 floors above the ER where I lost my daughter 4 months earlier. Every time I would think of her dying, my contractions would go off the charts. I was so worried I was going to bleed out and lose another child. During delivery I did almost bleed to death. All I could do was cry and cry after the baby was born. It was so crazy having one child go and another one come. In all honesty I didn't even want another baby to worry about and deal with, but it was a beautiful healthy baby boy.  I just cried and cried with relief that the baby was out of my body and that he was fine.

Two years later that "healthy" baby started having all the same signs and symptoms as our other daughter's meningitis! Repeated hospitalizations and tests revealed a serious genetic immune deficiency.  (Dr. said our other daughter probably had that and that's why she developed septicemia as a child and eventually meningitis and that is why it went so quickly to a coma) It was the WORST possible news ever. We had lost a child to this deficiency and now we were going to be threatened at every turn by it AGAIN?  Absolutely unbearable to watch. Every cold and sore throat turned into septicemia and lengthy hospitalizations. We were constantly in the hospital, going to new Drs to find answers. I felt abandoned by God. That I was crying "uncle" and He didn't care. He helped others and sent miracles to others (I knew this cuz people were always anxious to share their miracles every Sunday at church) I kept asking why God didn't have one small miracle for me. Why he would take my daughter when she was so young and sweet and one of the FEW sources of unconditional love I have ever received. Why would He take so much from me after all I had suffered in my childhood.  I have never questioned IF there was a God. I have questioned WHY he allows so much suffering sometimes. I do not understand how I can be an influence for his name and plan if I am so broken and of no benefit to anyone.

During this time my Mom developed Alzheimer's and I was the only kid at home to care for her. She had always made it clear she did not want to be in a rest home so in spite of my husband's protests I had her come live with me.

I took care of her as long as I could (in spite of her abusing me growing up and against my husband's protests of having her come live with us)... and I have been taking care of special needs kids now for 21 straight years.  My daughter with CF is a senior in high school. She is doing really well. She has 100% of her lung capacity because of the awesome new meds/treatments and running she is doing. She has been running Varsity x-country and track for her High School for four years as one of their top runners. My baby is a Sophomore in High school. He has chronic colds/infections, but because of prophylactic antibiotics and bi-monthly IV gamma globulin infusions at the hospital, he has been out of the hospital for years and can participate in sports and he starts on his HS basketball team. He is doing really well. These are no small miracles and I appreciate them greatly.   

The trouble IS. I've struggled with PTSD symptoms off and on ever since my daughter died and found out it was a wrongful death. I have never recovered and felt peace and prosperity for any length of time because there is always a trigger sending me back into the pit. My dad suffered a series of health problems, heart attack, kidney failure...eventual stroke and partial paralysis. My Mom suffered 13 years with Alzheimer's and passed away last year. I have suffered terribly living their lives and gearing up for their deaths. I got through the initial nightmares, panic attacks, flashbacks of Bailey's death and don't suffer from that part of PTSD anymore...but I deal with have chronic triggers from kids Dr. visits and sicknesses. I have never gotten over the sleeplessness (3-4 hours max at night...catch up with a nap or two later in the day) , hypervigilance and worry about the future for my kids. There is no cure for CF, and in spite of the medications and improved outlook there is great fear there. She is going to go off to college this year and I can't fight the feeling that that is when I will have "lost" all three of my girls. My oldest daughter is married and just announced she is pregnant. I am so excited, but nervous for that too. I don't know how I will ever handle anything happening to my other kids or a grandchild. I feel so worn down, burned out, fragile...I have survived everything that has happened so far, but I don't know how many more things I can handle/survive. I DREAD going to church and hearing others say God will never give you more than you "can handle" and how much "stronger" everyone else is for all they have been through. All I feel is "depleted" and resentful that I don't feel that way and thus don't like going to church. I only like being around a very few understanding people. My husband doesn't seem to understand my feelings and keeps waiting for me to get through this phase... I still call the counselor every once in a while when things are overwhelming. I guess I just want to talk to people who go through chronic trauma and get what I am going through. Complex PTSD seems to be the diagnosis that fits my situation more than just the "Classic PTSD" diagnosis that my counselor gave me.  Maybe he can't help me if he doesn't know how to treat me? If there is additional information you guys have that can be helpful to my situation it would be greatly appreciated.  I don't have hope that I can ever fully "heal" from my trauma, because the chronic illnesses of my kids will always be with me. It says one of the things that helps heal is to remove yourself from traumatic situations, but it is like I can never heal because I can never come home from my Vietnam.

Thank you for listening. I appreciate any help I can get from you who are living this with me.