Tag Archives: Familial Spastic Paraparesis

September Eleventh


So many of us living on September 11, 2001 remember exactly where we were and what we were doing when we heard the horrific news that unfolded for hours in New York, Washington, and Pennsylvania. That date is claimed. “9-11.” A day of terror that forever changed our country. But I want to remember another 9-11, a very happy day for the Graham family.

It was September 11, 1975. We were at last bringing home our adopted five year old daughter. We had waited months, no years, for this day. William, our son, only one year older than Julie, had not realized when we left home that it would take so long before we could bring his sister home–three days of meetings with a caseworker, signing papers, and getting to know Julie.

William had helped us prepare the room for his sister. He made a big colorful poster that read “Welcome Home.” He helped hang curtains and put new spreads on the bunk beds in the room the two would share until we could finish rooms upstairs.

Julie had strawberry blonde hair often put up in two perky pony tails that bounced as she ran, which she did a lot. Her eyes weren’t quite blue but almost green, depending on what she wore, and sparkling with curiosity. Her caseworker had described her before we met as having “well formed legs.” That comment would come back to us in later years. She loved to sing, songs she’d learned, songs she made up. She wanted to hear Glen Campbell sing “A Rhinestone Cowboy” over and over again. She liked pizza and hamburgers, but couldn’t stand seafood, which we all liked, so we would go through a drive-through fast food and purchase her a meal before going to Red Lobster.

Our little girl was instantly fond of several elderly men in our church. Her way of showing her affection was to walk up to them and hit them, then giggle at their startled expressions. She was a big tease and loved more than anything to “get someone’s goat.” She and William had great times outdoing each other with tricks on the front lawn, climbing the tung oil tree, raising two baby chicks named Thunder and Lightning and racing with each other. They were very competitive in the swimming pool and each discovered the others’ strengths: Julie was a fearless diver but couldn’t swim as far nor as fast as her brother.

Julie had been diagnosed with Nephrotic Syndrome of Childhood, a kidney disease, at a very young age, had had exploratory surgery and spent a long time in the hospital. However, she had outgrown that malady and had been taken off prednisone, the treatment drug therefore being freed by the state of Georgia for adoption. The lingering effect of this problem was that she couldn’t have salt or sugar. This led to my creating snacks with salt free peanut butter to take to her kindergarten class, also apples and her favorite fig cookies.

When we took Julie to our pediatrician after a few months we explained her medical history showing what few papers we had. Dr. Malone said there was new thinking on Nephrotic Syndrome. “Get her a big ice cream cone on the way home. Let’s see how she does,” he told us. That was the end of that. Except that Julie was never one to salt heavily–and she always wanted me to make those “Julie Cookies” made with peanut butter, flour, figs, and a little orange juice.

When she was eight Julie made a public profession of faith in our church and was baptized. She always loved her Sunday school teachers and was especially fond of girls’ mission meetings on Wednesday nights. That included wonderful playtime! Julie was very compassionate and was quick to try to help people.

When Julie was a teenager she complained a lot about her legs hurting. Sometimes she described her knees as having bubbles in them. We took her to the doctor but nothing apparently was wrong.

After high school, while attending Lively Vo-Tech studying to be a cosmetologist, Julie met a young man who captured her heart completely. We received a phone call from her one Sunday evening. “Daddy, put Mama on. And ya’ll sit down.” She and Doug had just gotten married at the Leon County Courthouse.

Julie had two babies and was a darling little mother. (When I say little I mean it. She was only five feet tall and weighed about 94 pounds, gaining to a whopping 120 when pregnant.) I remember that moment when first she asked me to hold her tiny newborn daughter. I experienced an extraordinary bonding between her and me and this little pink bundle named Amanda. When Charles Douglas was born she was so proud of him too, proud of being able to name him for her dad and her husband. And proud of being able to have him naturally though Amanda had been born by caesarian.

Julie continued to have pain and severe spasms in her legs and we sought help at three major diagnostic hospitals only to be told the doctors didn’t know what was wrong. It wasn’t until her daughter also showed signs of similar difficulty during early teens that she finally received a diagnosis: Familial Spastic Paraparesis. This rare disease usually affects only the lower limbs but Julie had the complicated form which caused spasms even in her arms and neck. Her hands sometimes shook so hard she couldn’t hold her beloved cup of coffee. Whereas Amanda was a good candidate for a surgically placed pump that would send spasm-relieving baclofen straight to her spine, Julie was not. She was always so happy that Amanda would not have to suffer she had. Julie did, however, with the proper diagnosis, get on medication that allowed her to have successful knee surgeries which relieved a lot of her pain. Spasms had torn meniscus time and time again.

Julie loved to go shopping looking for bargains. But that became too hard as time went on. She did get an electronic wheelchair she could drive like Jehu. Amazingly, sometimes she could walk, almost run. Sometimes she walked when and where she shouldn’t resulting in numerous falls. After many ambulance runs to the emergency room, her veterinarian father put together his own kit just for stapling Julie’s many wounds to her head, hands, and face. Julie was so stoic, would squeeze my hand hard and seldom cry as her dad once again put her back together.

Julie loved her family and her friends and her pets. She was an avid telephone conversationalist. She got a big kick out of good jokes, particularly Papa Graham’s. Some of her favorite shows were “Survivors,”” Criminal Minds,” ” Hawaii Five-o,” and “NCIS.”

On the Fourth of July, 2012, Julie came to a family gathering at our house. She was excited to see her children and her little granddaughter Charli, and all of us. Her face glowed that day. She bragged on the supper being so good. She couldn’t hug everyone enough. We had no idea when she left that night that we’d never see her alive again.

On August 18, 2012 at the age of 42, Julie didn’t wake up. She simply went to sleep and woke up in heaven.

But today, September 11, 2016, I’m remembering that day 41 years ago when we brought that bouncy little girl with ponytails home and watched as she skipped along our driveway.



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