First, a little background for me....it's LONG....
I had a daughter who was born with severe brain damage, who I had institutionalized when she was about 18 months old due to constant pneumonia, ear infections, and inability to keep food or formula down. Her handicaps weren't the issue, but her constant poor health. I dreaded her dying in my care. It was the hardest decision I've ever made. By then, I was a single parent, with her older brother to care for, and I was sinking farther and farther into severe depression. During her 9 years there, she had multiple surgeries, and ended up with a permanent stomach tube. I always kept custody of her, visited as frequently as possible, and had an active part in her care.
Fast forward 9 years, and our state, Kansas, decided to close the State hospitals, and put patients into private residential homes. My daughter lasted 3 months. Her care was COMPLETELY changed, and unbeknownst to me, she was having fevers, and being sent to school with the fevers. (They had mainstreamed her into regular school.) She did not speak, but could "drive" her own wheelchair wherever she wanted. She was smart in a way that couldn't be measured. She knew what "give Momma hug" meant, and could do a "high five". She seemed to understand time, with her ability to "show up" in the nurses station for the shift change before the care team showed up.
One week after her 11th birthday, I got a call in the middle of the night to come to the hospital in the city where her foster home was, about an hour away. (I was unable to care for her due to my job, and physical/mental health.) When I got there, she was obviously very sick, and in ICU, with pneumonia. I had been there for maybe 20 minutes when her doctor had my parents and I go into a consultation room. He told us that she was gravely ill, and asked if I wanted them to take extreme measures if she coded (went into respiratory failure). I declined, knowing how sick she was, and how traumatic it is to have CPR etc. He almost immediately left the room, leaving us to discuss what we do if/when she died. She was not comatose, which I knew because she had raised her hand and touched my cheek when I came in.
He returned just a few minutes later, and informed us that she was failing and to come to her bedside. We did, and they placed her in my arms, and she died, as I had always prayed for...in my arms...with my voice being the last voice she heard. I told her how much I loved her, and told her "thank you" for all she had taught me.
About 6 months later, I ordered all of her medical records, as I had planned to all of her life, just for my own closure. (I was a medical assistant for 25 years). When I got them, I discovered that the night she died, when he left the room, he had ordered a very strong sedative (Nembutal) to be given to her in her IV. She weighted 50 pounds, and the amount he had given her, was what would be given to a normal child for surgery. Basically, he euthanized her. Her records clearly indicated that, though no one had ever told me exactly what had happened. (I did know that when I had arrived to her bedside, her heart rate was around 180 per minute, and after he ordered the sedative, it had dropped to 70 when I was called to her bedside. He had come back into the room, not mentioning what he had ordered.
I am sorry for the long history...but it is part of why and how EMDR helped me. I kept having flashbacks of that night, and the dates and times that clearly showed that she was VERY sick long before that night. Her autopsy said that a foot long part of her bowel was dead, which meant she had had a bowel obstruction probable the whole time...3 months...that she was out So she also had blood poisoning that night. (Septic shock)
My therapist, very well trained in EMDR, helped me "install" a new "memory" of her death, that I can "bring up" if necessary. It has truly become what I "remember" about that night. I can literally picture her, in the sky (brilliant blue) holding Jesus' hand, He facing heaven, with her half-turned to me, with her big smile, saying "thanks for everything Momma, I love you, and you will be okay." I could describe it to a police sketch artist, and they would be able to draw my "memory" completely. What an AWESOME DIFFERENCE this has made in my healing and recovery.
After finally finding a "resting place" for her death, I have accepted that if the doctor acted out of a desire to cover up her lack of care that night (there is more to the story, but this is already long enough) that God will be the final judge. I also realized that if he had not done that, that it's a possibility that I might have had to make the decision to terminate life support, and I KNOW that I would not have been able to deal with that.
I already felt guilt that I had not realized what was going on with her. I know now that my guilt was really unfounded, as I did not know what was happening, but since no one else took the responsibility, I thought her lack of care, and the neglect had to be my fault. I know that the State had kind of "pushed her out of an airplane, without a parachute."
I really hope this wasn't too much to digest, but I felt a background of my trauma would help. EMDR also helped me deal with the HUGE anger that I had with the State, and the doctor who handled her "care" or lack of care.
In the end, I realized that my prayers had been answered. When she was born, is was obvious that her condition was very severe, and that she would not live a long life. I had asked God for 2 things when she did die. One, for her to be in my arms, and two, for it to happen fast. Both of those things happened. Since she had lived away from me for 9 years, that was kind of a tall request.
I know there is no easy way for a child to die, but I did get those 2 things. Plus, they thought she might live till she was 3 years old, and we had her for 11 years. I am who I am because of her life, and my son is who he is also. A great daddy, appreciating the health of his children.
I wouldn't trade the experience, and her life of love and smiles for anything.
I do hope that you have high hopes for EMDR. Sometimes the changes are subtle, and they also can affect different areas of your life, all good in my experience. Depression, anxiety, and guilt dissipated greatly. My faith also has been a HUGE help. I hope this helps a bit.
Best of luck!
AKJ
