This story is about anguish, about devotion, about dedication and steadfastness but mostly it’s about love. The kind of love that’s enduring – no matter what one faces, no matter the day-in and day-out frustrations of watching your child’s mental development come to a standstill. And there is nothing – nothing – you can do to change the situation. This story is about Lamar, Sally, Robbie and Sandy Beaty. If you know them, you know – at least from a distance – the road they have traveled for fifty-one years. Sometimes that road was pretty rough, sometimes they couldn’t see around that next bend and wondered if they could keep it between the ditches, but somehow, they did – because of that devotion and that love.
Lamar and Sally’s life, individually as well as together, began in Chickasaw County. They belong to ‘us’, they are a part of ‘us’. Their families have lived here for generations. Like all of us, when they were married, the life they envisioned was to be all happy and rosy with hardly a bump in the road. Lamar had graduated from Mississippi State University with a degree in education – had a job on the coast as principal of a school – his wife, little son and baby daughter rounded out the circle and they were on their way.
It was in March of ’69 before Hurricane Camille devastated the Gulf Coast the following August they noticed that Sandy didn’t hear well, or hardly at all. Lamar remembers a time that Robbie, Sandy and their puppy were sitting in front of the TV, watching one of their favorite programs. He intentionally slipped up behind them with two pans in his hand and banged on them as hard as he could. Robbie and the puppy literally jumped off the floor. Sandy made no move at all. So, okay, now we have a daughter, about two years old and she’s deaf. Through the intervention of a family doctor who confirmed that she was indeed deaf, they were referred to the New Orleans Speech and Hearing Center. After testing there, a staff physician came out and said, “We don’t know what happened with the diagnosis of the referring physician, but your daughter has perfect hearing. Why don’t the three of you go to lunch and come back this afternoon and we’ll do more testing”. After this episode of tests, the physicians came out with a very strange look on their face and told Lamar and Sally that indeed, Sandy was totally deaf. They suggested they go back to the referring physician and start over. This is when Lamar had to get back to Starkville and finish his Master’s degree or else he would not have a job. Sally and the two children stayed on the coast for a while. Finally, she had to have some help so she took a leave of absence from her job and came home to Houston. Through another referral, Sally took Sandy to Mobile to a team of Neurologists. She was admitted to the hospital there and began more testing. Meanwhile, Camille is destroying the Mississippi Gulf Coast. While with her daughter in Mobile, Sally is watching the destruction on television. Lamar (with no cell phone at that time) is in Starkville and can’t find out about his family. The family survived. The house they were living in at that time did not fare so well. Nothing was left but the studs. No furniture, no clothes, no photos, nothing tangible of their past is theirs anymore.
However, now the physicians tell Sally that Sandy is Autistic. Not much was known about autism at this time. It was not a word you were exposed to very often by a physician or an ad on television as we are today. They could find only one book in the entire state of Mississippi about autism and it was in a library in Clinton, Mississippi – on the campus of Mississippi College. Meanwhile, the Beatys are back on the coast where Lamar is principal of a school. There Sandy seemed almost normal – she fed herself, she played with toys, she smiled, she grabbed a hunk of her 2nd birthday cake, as evidenced by photographs. However, in a few months’ time, Sandy had lost it all and as Lamar has expressed – thus began an eighteen-year journey before there was a definitive and correct diagnosis of Sandy. And it was not a good one – Sandy had Rett Syndrome. When I searched online about this condition, most of the words were totally over my head – words like mutations on the X chromosome or a gene called MECP2. Strangely enough, this condition is almost always found in girls. It is often misdiagnosed as autism, cerebral palsy or just a ‘developmental delay’. Brain function responsible for learning, speech, mood, movement, breathing, cardiac function and even chewing, swallowing and digestion is affected.
Frustrations abounded. I have said to them more than once that I don’t see how they kept from running out the back door – to which, with a laugh, they responded that there were times when they did – BUT, the important thing is, they always came back in that door and once again shouldered the day to day care of their daughter. Too, during these early years, they tried to make life as normal as possible for their son.
Through the years and with more education about Rett Syndrome, they learned that often the girls with this condition were prone to have a favorite singer and that music seemed to calm them. Physicians have expressed curiosity about this – why and how can one whose mental function is so low, be so aware of just who they are hearing. For some it might be Willie Nelson, or even some rock group. For Sandy, it was no one but the one and only Elvis Presley! Soon Lamar and Sally had a library of Elvis – tapes, records, then later CD’s and DVD’s. Sandy liked to watch Elvis as much as she liked to hear him. Thus, has been the Beaty’s life for the past fifty-one years. Can you imagine this? Could you have taken care of your developmentally challenged child in your home for fifty-one years? That’s over eighteen thousand mornings when you get out of bed and along with other duties of day to day life, you take care of her. You love her and give her nothing but the best care that you can give her. That’s love. Sandy passed from this life on July 8. And, who knows, perhaps Sandy is at this very moment singing a duet with her Elvis Presley and they are rockin’ it!!