The Day I Became Lynda's Advocate

When Lynda became my foster daughter, she received Medicaid.  Because she received Medicaid, she had to see certain doctors and we had to go though the welfare department and social workers to make most decisions about Lynda's health.  It was a very frustrating situation to say the least.

When the social workers left Lynda the first day, they handed me two bottles of medicine.  One they called "the red medicine" and the other they called "the orange medicine."  Both were liquids and had dosages on the bottles.  However, it became evident very quickly that Lynda's family hadn't given her medications on any particular schedule.

It was decided that the best thing would be to admit Lynda into  Sacred Heart Children's Hospital in Pensacola, Florida to try and determine more about her seizures.  We were to be there for five days of tests.  We also had another foster child who was ten years old and in school so Larry had to stay with her and also work.  I went with Lynda to the hospital alone.  Nothing could have prepared me for the education I was going to receive that week.  We had been in the emergency room with Lynda in Brewton but never in the hospital more than just overnight.

Remember that this was 1975.  Public opinion of children with disabilities was not very informed (putting it nicely).  Congress passed Public Law 94-142 (Education of All Handicapped Children Act), now codified as IDEA (Individuals with Disabilities Education Act).  I can tell you from experience it took a long time to get to the point of the law being passed in 1975.  It took even longer for it to actually be implemented and it has never been fully funded.

When Lynda and I arrived at Sacred Heart, they came to get her to take her for her first tests.  I asked about going with Lynda to help hold her and was told that I couldn't do that.  I had always been in the emergency room with her in Brewton and was pretty good at keeping my cool.  When the nurses told me that I couldn't go with Lynda, I explained to them how hyperactive she was and about her problems with communicating.  They assured me that they could handle it and I wasn't needed.  In fact, when the neurologist came by later that afternoon he told me that I should go home and get some rest while she was in the hospital having tests run.  His idea was to just come back and pick her up at the end of the week.  I was stunned.  I explained to him (again) that she was my foster child.  I had chosen to take care of her and that was exactly what I was going to do so I would NOT be going home.

So Lynda went off for her first test and her first test was my first real test as Lynda's new mother.  I remember the way the room looked.  I remember where the door was and I remember the nurses bringing Lynda back in a wheelchair.  The expression on her face was absolutely heartbreaking.  She had wide pink bands all around her arms and legs and torso.  Some had blisters.  When I asked the nurses what had caused this condition, I was told rather matter of factly that she had been wrapped in duct tape to restrain her while she had been given a spinal tap.  No sedation.  No pain medication.  Wrapped in duct tape that when it was pulled off, took the skin with it.  Lynda was allergic to adhesive tape;  the kind on regular bandaids.  Imagine how duct tape would react with just about anyone's skin but a four year old blond, blue eyed and fair skinned child with allergies to adhesive?  It was like burns.  Besides this absolute atrocity, patients who have spinal taps back then were supposed to be kept reclining to avoid spinal headaches.  Obviously, Lynda hadn't been afforded this opportunity.  So for days I played with her in the big bathtub they had on the floor.  She loved water and as long as she was in the water floating the pain was reduced.  When she had to get out of the tub I put blankets into the green wagons they had in the hospital and pulled her around for hours and hours that turned into days.

When the nurses brought Lynda back after having wrapped her in duct tape instead of letting me go with her (and not bothering to tell me she was having a spinal tap), this 23 year old quiet, trusting person became a mother tiger and an life long advocate for Lynda.  I learned things I didn't want to know about.  I saw the world through different eyes as the parent of a child with disabilities.  I even saw the world that week through the eyes of a trusting little girl who called me Nana and I vowed to her that day that I would never, ever be conned into believing that a mother's instinct isn't important and worth following.

That first day at Sacred Heart in 1975 was heart wrenching.  Unfortunately there were more difficult days to come throughout the next 39 years.  There was never a doubt that God had placed Lynda into my life and I believe that in doing so I joined hands with the angels that surrounded Lynda throughout her life.  There was never a doubt that Lynda didn't need another angel.  God had plenty of those.  He needed for Lynda to have a Nana and an advocate for life. There were plenty of those too but for some reason He chose me.

"There is nothing to be afraid of if you believe and know that the cause for which you stand is right. You are ready to face anything and you face it with a humble smile... because you know that all of eternity stands with you and the angels stand beside you..."
Martin Luther King, Jr.