Grieving For Our Two Lyndas

Between the fourth and fifth weeks after Lynda died it seemed that my grief was becoming deeper and I found myself thinking more and more about Lynda when she was a little girl.  I know part of that was because I was going through all of the pictures of her to use for visitation and her service but I wasn't prepared for the reactions that I was having.  I went back to the doctor.  I tried to rest as much as I could but my mind would keep going back to Lynda before she went to Millcreek Rehabilitation Center in Magee, Mississippi.  Lynda before she was abused at Millcreek.  Lynda before she suffered a grand mal seizure that no one noticed until it was too late.  Lynda before the stroke that literally wiped out all of the skills and memories she had from the previous ten years of her life along with her ability to walk, use the right side of her body or even swallow in the beginning.

Lynda at 9 years old before going to Millcreek

Lynda at 40 years old after a stroke affecting right side

I struggled with all of the "what if's" and then one day it hit me.  I was grieving for the loss of two children at once.  I had never allowed myself to dwell on the changes that happened to Lynda after Millcreek.  Larry and I had decided from the beginning that we were not going to sue even though we had a pretty open and shut case.  Lynda was still critically injured and needed all of our attention.  We didn't want to spend years in legal battles.  When we picked up Lynda's things from Millcreek we met with all who worked with Lynda in one large room.  They were all expecting us to announce that we would be bringing a lawsuit against the facility.  Instead I told them that they knew what they had done to Lynda was wrong.  They knew they were guilty and one day they would have to answer to God for the abuse and neglect (she didn't have any seizure medications in her blood when tested after the stroke) and then I left and tried to never look back.

I couldn't look back because it was too painful.  I couldn't look back because I had a daughter who was more disabled  than when we had sought respite care for her on September, 2 1981 and we had a young son, as well.  I didn't look back because I felt blessed that we had Lynda at all.  It would benefit no one for me to look at what she could do before and what she was not able to do as a result of the stroke.  In our minds, I think we just dealt with it as having two Lyndas.  There was the Lynda prior to January 23, 1982 and the Lynda that we loved from January 23, 1982 until August 3, 2013.  It was the death of the "second Lynda" that brought me to my knees in grief over the "first Lynda" that I had never fully grieved for.  It truly was like having one child die in 1982 at the age of ten at the hands of multiple abusive people and then having another child pass away 31 years later.

The pain that I'd buried after Lynda's abuse and stroke was as raw as it was 31 years ago.  I allowed myself to think about her sweet voice and the things she was able to do before the stroke.  I blamed myself for sending her to Millcreek although my rational side knew even through the grief that I had done everything possible to find the best possible temporary care for Lynda at a time in our lives that we needed help.  I allowed myself to process the "what if's" and I looked through my eyes of  25 years of experience working with children with autism  and allowed myself to imagine what she might have been like as she grew up had our paths not crossed with Millcreek.  I didn't want to think about these things but I had to.  As long as I had Lynda, I didn't mourn the child we had lost because of the stroke.  When I found myself with neither version of the child we adored I had no other choice but to mourn her loss from the beginning to the end.

When God finally allowed me to realize what was going on in my mind it really helped me to process my feelings.  I had compartmentalized emotions for so many years to be able to continue taking care of Lynda.  I will always be Lynda's Nana and she will always be in my heart.  I will take with me memories of her first day as our daughter in Brewton, Alabama and all of the memories right up until her last minute on earth in hospice in Oxford, Mississippi.  Some of the memories that come flooding back are bittersweet but I am thankful for the journey with Lynda through all of the years.  I'm going to be okay but I'm not there yet.  It's hard to process almost 40 years of a mother's memories....the good ones along with the bad ones.  The happy ones with the sad ones.  The range of emotions that surface from a single picture or the sound of her voice on the tape I found.  I've chosen through the years to be Lynda's voice and to treat her as I would want someone to treat me if I was in similar circumstances.  I've also chosen to not waste energy on hating the people who have abused Lynda during her lifetime.  What satan meant as evil....God used it to His glory.  Lynda has eternal life with God while satan will soon be banished to darkness and eternal damnation.  Now that just makes me want to shout!  So glad God has already told us how the story ends!

More Information About Lynda's Stroke To Better Understand the Story:  Lynda was extremely hyperactive and had some behaviors such as biting after the abuse she suffered at the child development center in Batesville a year or so earlier.  When she went to Millcreek the doctors and nurses were told NOT to give her any medications for hyperactivity for two major reasons:  1) we had tried them all and none worked  2) the medications lowered the effectiveness of her seizure medications---We were not able to visit for the first month while she was there.  In November, we could take her out on a day trip.  We noticed that day that her hair was thinning but no one at Millcreek had any idea why.  In December, we were able to take her home for Christmas break and her hair was really thin.  Again, no one knew why.  I began to suspect that there was some abuse going on and asked our friend Rims Barbour from the Children's Defense Fund in Jackson, MS to send someone in that Millcreek wouldn't recognize to check on Lynda.  The person reported back to Rims that Lynda appeared "drugged" and wasn't moving around much.  Rims reported this back to us and also the information that while he was on the floor at the state capitol, he heard Lynda's name mentioned by our representative who had helped us secure a developmental disabilities grant for funding since Millcreek was a private institution.  He was talking to another person saying that Millcreek couldn't handle Lynda and were going to call us the following week to come and get her.  We were incredulous that our daughter was being discussed on the floor of the state capitol and began making plans to go and pick her up.  We had a huge ice storm that year around Jackson and the day that it was clear enough to drive we received a call saying Lynda had had a seizure and was in the hospital in Magee.  We left going down to Magee, Mississippi thinking it was one of her usual seizures.  We were not prepared for what we found.  We were told she had had a seizure in the middle of the night and wasn't found until the morning (they were supposed to check on her every hour).  They called the nurse at home (they had been told to transport to the ER immediately) who came to the center, took her temp which was 106 and then...only then did they transport her to the emergency room.  By then, it was too late.  She suffered a stroke affecting the right side of her body although the doctors didn't think she had anything wrong with her but a lot of medicine to stop the seizure.  We later found that her blood levels showed no anti-convulsants in her body and most likely the hair loss was from abuse;  either the result of stress from her treatment or actually being pulled up by the hair on her head.  From the way she looked, I feel both happened.  For sure, they were giving her medication for hyperactivity that was forbidden and they were not giving her seizure medication properly or keeping up with the levels through blood tests.  This led to the seizure.   Lack of supervision allowed her to seize for hours causing prolonged status epilepticus which leads to brain cell loss and decreased oxygen in the body as the temperature rises.  Her little brain and body couldn't withstand the assaults and responded with a stroke on the left side of her brain affecting the right side of her body.  Now go back and read the last sentences in the post before this note.

What satan meant as evil....God used it to His glory.  Lynda has eternal life with God while satan will soon be banished to darkness and eternal damnation.  Now that just makes me want to shout!  So glad God has already told us how the story ends!