Libbi Turns 60
As we celebrate Libbi this year, we realize what a true celebration we will have in watching my sister Libbi turn 60. We’ll celebrate her life, our family and all the people whose paths have intersected with hers and made Libbi Thomas who she is.
My family has celebrated every milestone in Libbi’s life in a big way. There is a thought, ever tucked away since her birth, that her length of her time here is uncertain. We celebrated 40 big. We celebrated 50 big. And now 60! It is beautifully uncharted territory.
When my sister Libbi was born on November 4, 1960, it was into a world vastly different from today in terms understanding developmental disabilities, even within the medical community. Premature, and weighing just 4 pounds, Doctor Wharton Brown ordered blood work to verify the suspicion that Libbi had something called Down syndrome, then called Mongolism. There was little hope and the prognosis was not good. Chances were likely that mobility and walking would be difficult, if not impossible. Communication would be challenging. There would be limits on her educational progress. There were so many reasons to be discouraged and our extended family, friends, and the medical team who surrounded Libbi could seemingly see no positive outcome. For a young couple who already had three healthy children at home, it seemed to others unfair to be dealt this.
There were special homes that could provide care, my parents were told by the kind pediatrician.
My mother had a stubborn streak, however. Or perhaps, simply a heart so big that there was never a consideration of not bringing this tiny girl home. And so, at one week old, Libbi was clothed in a dress made from a doll dress pattern, placed in a bassinet and brought home to be introduced to her older siblings Sammy, Joey and me - the oldest at 8.
To my 8-year-old self, this beautiful little baby in doll’s clothes with her full head of curly black hair was immediately, delightfully, “my baby.” One of my earliest memories, is my mother ducking next door for a few minutes, leaving me with this tiny little girl and simply saying "Patti, watch Libbi". And so I have.
Through the years, we have all watched Libbi! Watched her laugh, sit up for the first time, crawl, toddle. We watched her go off to school, watched her become a teenager. We watched her become a fanatical fan of Marie Osmond, then Barbara Mandrell, then Tricia Yearwood, then Carrie Underwood. We have stood at many a backstage door and watched Libbi be invited in! We've watched her master her laptop ,then her iPad, then her iPhone. We've watched her move into her own house and live independently. Watched her become a Godmother to great nieces and nephews.
When she came into our family, our sister Libbi was just that; our sister. She was unique, with her own set of challenges. Special and different in so many ways, just exactly like my brothers and I. The world seemed to see her differently at times. I remember being quickly shushed by my teacher when announcing to my third grade class that I had a new baby sister. Then there were whispers about the new baby while I was visiting my grandmother. I suspect my mother put those comments to rest in short order because the words disability, Down syndrome, slow learner, special child, or any other term of description was never, ever spoken in our house.
We were a typical family of the 60s with a working dad and a stay-at-home mom. A family TV and Walt Disney’s Wonderful World of Color on Sunday nights. We lived the small town life of church and scouts and dance lessons and sleepovers and supper around the kitchen table. The four of us were reared exactly alike. If my mother was here now, she would still say the word “normal” applied to each of her kids. “Normal” life means struggles and bumps in the road and good teachers we could work with and strict teachers we couldn’t. It meant good grades and not so good, home runs and strike outs. It was simply LIFE.
In sixth grade, my classroom was across the hall from the special education classroom and there was a girl with Down Syndrome who walked to class every day. I was astonished that she looked so much like my little sister! When I told my mom, she suggested we take a drive. Driving talks were usually reserved for something pretty serious and this was no exception. She explained that Libbi had a condition that involved chromosomes. She used the “M” word. She explained that Libbi was different and would always struggle to keep up with the rest of us and that she was our sister and we’d always all be around to help her when she needed help. She told me that doctors couldn’t be sure how long little children with Down Syndrome would live and she gave me the book Angel Unaware that Dale Evans and Roy Rogers had written about their daughter Robin.
She impressed upon me that Libbi was just like the rest of us – only a little different… and weren’t we all a little different? I was absolutely stunned! I don’t know if Sam and Joe ever got the same talk - and we’ve never discussed it - but life after our drive simply went on.
Growing up in a college town had many benefits. When Libbi was a small child, the local University, Louisiana Tech opened their doors for her to receive speech therapy, PE, and reading with student teachers before many of those services were readily offered in communities. She attended a laboratory school affiliated with the college and still today is quick to tell others that she went to Louisiana Tech just like the rest of her family!
Libbi grew into a poised, lovely young lady. She traveled to Europe, she became active in the political world like the rest of her family - and she has more friends than all the rest of us combined!
In 1998, our Dad died after a long battle with a diabetes related illnesses and we were all concerned about Libbi and Mom. They nurtured each other into the next phase of their life and a few years later, decided to move an hour and a half down the interstate “so Libbi could be closer to her sister”, as my mother would tell. They settled in, made friends easily and were enjoying their new adventure. Then, a few years ago, my mom died unexpectedly. It was Lib’s faith that was strongest and she comforted us with the knowledge that Mom and Pops were safe and happy in Heaven. She began a notebook of letters to Mom and Dad writing them about her daily activities. Never sad, never negative, always sharing the happiness in her life and the mischievous antics of her puppies.
After Mom’s death, Libbi decided to downsize from their two story home in a gated neighborhood to a smaller home close by that she built and planned herself, right down to the big screen TV over her mantle. She loves to entertain her family and friends and she lives independently thanks to modern technology and two wonderful ladies who “drop in” mornings from 9 until 1. Libbi likes to remind me that she needs her alone time with just her puppies, Suzy Q and Missy. She loves her weekly trips to the beauty shop, her lunches and family dinners out with Joe, who lives nearby - and visiting her new great-niece with Sam who also calls from Nashville. She loves phone calls with our cousin Julie who was born a few months after Libbi. She requests not being called before 9:30 am, she has her tea and cookies at 3:00, and at precisely 5:00 pm she pours her chardonnay.
When Libbi turned 54 she began questioning her choices, confusing the names of her family members and often saying “I just get so muddled” and indeed she did. Alzheimer’s had crept up on us all and we began what became a new journey. Libbi took part in a study on Alzheimer’s, Aging and Down Syndrome. The progression of this disease was heartbreaking and as it does with so many others it took it took the personality of the Libbi we all loved.
It was even more difficult to find out that many who are born with Down syndrome and are living longer today are likely to spend their final years with Alzheimer’s Disease.
There have never been labels or expiration dates for Libbi. If you asked her about Down syndrome she might tell you about someone she saw on television or an adorable toddler. To her, “disabled” means either someone in a wheelchair, like our dad was in the last year of his life, or as someone she can help through a donation or making a holiday basket. Maybe her outlook is due to the very little known about DS in the 60s. Or maybe it was the stubbornness, love and commitment to their youngest child that kept our parents from discussing a diagnosis with her.
For parents today who have received this diagnosis either before a baby’s birth or shortly thereafter, the world is very different from that of the 50’s and 60’s. There is an amazing amount of information available. There are specialists, physical therapists, speech therapists, buddy programs, and more information online than any one person could ever work his way through. Families today have so many wonderful assets. I marvel every day at the pictures of adorable little ones that are posted on Special Miracles Facebook page and I smile that families can so readily reach out to each other for support.
In 1960 in Ruston, Louisiana there was only a clinic and a community hospital that offered the best services they could. Doctors who would become dear friends through the years were always always around to offer support and love. The way our family embraced Libbi was what was right for us.
Every child is born with “special needs”. Each will carry her own mixed bag of blessings and challenges whether born with a disability or not. Be wary of labels and lists of what can and can’t be accomplished. The challenge is to just watch your child and learn the lessons they teach you every day: Lessons of love, patience, awe, frustration, sadness, and celebrating every success!
This month we are celebrating Libbi and are thankful for her beautiful life that, in November 2020 bares no resemblance to the gloomy forecast of 1960. Even today as I wake her in the morning and tuck her in at night she wears a big smile. Recently I kissed her forehead and as I have for years said “I love you Little sis” and as she has said so many times before she smiled back at me, poked me on the nose and said “I know that!”
