Embracing the Art of Living

By Sharon King

It has been one of those weeks — a week of busyness, stress and grief. Some (okay, a lot) of it was self-imposed, yet I let it cloud my focus on the precious things that I should have been doing.

So, here I am on this cool and gray weekend morning reading — really reading — the messages and love notes friends sent to Taylor in celebration of Valentine’s Day. As I read their many thoughts and memories, I’m overwhelmed with the love, kindness and appreciation for my sweet girl. Each letter touches my heart in a special way.

There is a beautiful and frame-worthy drawing from Taylor’s cousin, Morgan. The drawing is bursting with Taylor’s preferred purple and pink.

Cousin Madi described Taylor using each letter of her name: Terrific, Appreciated, Youthful, Lovely, Optimistic and Resilient. Right on, Madi — I agree! Taylor has a lot to share about the value and power of optimism. I wish more people could know her and benefit from this important lesson. Talk about changing the world. And resilience? I’m immediately reminded of visitors to our home after Taylor lost her vision. Taylor would dash around and run up and down the stairs without her white cane. I always got a quizzical look that said, “I thought she was blind.”

Our friend, Linda Talmadge, has long served as Taylor’s “Director of Mischief,” and her leadership skills have not gone unnoticed. In her three-page letter, Linda shared memories of catching a five-pound bass on a hot summer afternoon in the Ormond family pond. I’m not sure we expected to catch anything, but we did, and we ate it.

big fish

Linda also assumed the role of assistant to Taylor’s physical therapist and occupational therapist when needed. When Taylor struggled with aquatic therapy, Linda showed up wearing her bathing suit, jumped into the water and sang the Carolina fight song as she helped Taylor walk in the pool.

There were the afternoons when Linda and Taylor danced around the house to “Go You Chicken Fat, Go.” (You’ll only understand if you were a child in the 1960s.) There were trips to peach orchards (it’s therapy when you reach overhead and pluck the peaches from the branches) and strawberry fields, where we picked buckets of berries. Those orchard trips always happened in the name of therapy, but the fruit was certainly a bonus. We made bread (stirring is therapy!) and Rice Krispie treats, because again, it’s good therapy. Eating all of the treats also served as emotional therapy. And as for all of those sunny afternoons filled with singing to Linda’s harmonica accompaniment…’nuf said.

I wish that I could single out each and every card and note Taylor received in this post. When I read the message from our longtime family friend, Polly, I smiled thinking of Taylor dancing on Polly’s hearth.

Thanks also to the folks at Abeona Therapeutics for the many cards and messages of care and encouragement. Abeona is named for the Roman Goddess who protects children. Thank you for being a testament to your namesake.

I’ll end with Linda’s closing thoughts to Taylor:

Taylor, I could write forever for I have had a front row seat watching you grow up. You showed me the joy there is in celebrating the moment and having fun just for the sake of savoring the day. There is freedom in not worrying what others think, or what tomorrow may bring or what society may view as important. There is love in holding hands, being together and sharing secrets. There is peace in simply embracing the art of living.

I knew freedom, joy and love before my friendship with you began. You taught me that they can come at unexpected times from unexpected places. Perhaps that is life’s greatest lesson.

Respectfully submitted,

VP of Mischief

Linda Love Talmadge

Linda and Taylor

Love Notes to Taylor for Valentine’s Day

By Laura King Edwards

I get paid to tell stories, yet I’ve always struggled to find the right words to tell my sister what she means to me. It became even more difficult after she lost her ability to talk, turning our verbal communication into a one-way affair. But for Valentine’s Day this year, I wanted to do something special to show Taylor how much I love her.

Which got me thinking: given the chance, what would other people say to my sister on a day set aside to celebrate love and affection? People whose lives Taylor has touched, or whose actions and words have touched hers?

That’s why, on a cold day in January, I sent a simple email request to friends and family, asking them to send “love notes” to Taylor. How has she changed their lives? What are some of their happiest memories of her? If they could say one thing to my sister, what would it be?

I hoped and prayed I’d get at least a few responses – enough for a short blog post or a few photos on social media.

I should have known better. In fact, I had to create a separate folder in my inbox for all of the typed responses I received, and when I returned home after a week in Arizona, I’d received so many written letters, they almost didn’t fit in the box.

Now, what started as a small, simple idea has become one of my favorite projects since we founded Taylor’s Tale more than 10 years ago. My sister’s valentines are scattered across my desk and the floor of my home office. Their heartfelt words echo in my mind when I lie in bed at night. They are a physical rendering of real love for my sister and our family. A reminder of how that love is changing the trajectory for children and families who have and will receive the devastating diagnosis of Batten disease.

I hope you enjoy reading Taylor’s love notes as much as I did.

Dearest Taylor,

I will always remember the special day — where I was, the time of day, the circumstances, and the weather — when I learned your mom was expecting you. Your mom was president of the Junior League of Charlotte, and the two of us were finishing up a meeting at our home away from home, the League building, when she said that she had some news.

I followed your mom to her League office and walked through the door. We were about to get on a chartered bus and go on a tour of Charlotte. I can still see her now, standing behind her desk, and then she bent down to get something out of a drawer. Then she stood up and said, “I’m going to have a baby!”

I was so surprised, and it took about two seconds for surprise to turn into utter joy. I fell in love with you right then and there while you were nestled, safe and sound, a little miracle God was sending our way.

You were eagerly anticipated and completed the King family. No child could be more loved, adored and treasured.

I talked with your mom right after you were born and saw you for the first time soon after. This memory I share is one that I will hold in my heart forever. Your life has touched my life in innumerable ways, and I love you and am grateful for you and for your family.

With love,


Dear Taylor,

I wish I could have known you as you were. I wish I could have known you as you should have been. I mourn for what might have been, but I celebrate the future that you have inspired. You’ve had a greater impact on me than you could imagine. Enough to change the lives of many children that you and I have never met. One day in the future, you and I will talk, and we’ll look at all the kids that you’ve helped. We’ll look at the movement that you inspired. I’ll tell you the little piece that I know of “Taylor’s Tale,” the amazing story that it is.

With love always,


Dear Taylor,

Where do I start?  You, dear Taylor, have changed my life. I have often questioned some of the decisions I have made in my life, but you are the reason I no longer do that.

You, dear Taylor, have made me realize my purpose in life, and that is to fight for those patients and caregivers living with rare disease. You are the reason I met your amazing mother, who is my hero. She is relentless in fighting for all of those living with rare diseases, and she is making a difference in so many people’s lives because of you, dear Taylor.

Dear Taylor, you are such a brave, beautiful soul. You are a fighter, a warrior who is living a life to help so many people. You are a trailblazer to lead us all down a path that can improve the quality of life of so many people. If not for you, dear Taylor, I would have never had the pleasure to meet your wonderful mother, who is like a sister to me.

You have been so instrumental in a campaign to change the world and make it a better place for those living with rare disease, and we are all so grateful for the gift of light you shine on us each day.

Happy Valentine’s Day, Taylor, with much love and admiration.


Dear Brave, Beautiful Taylor. I so admire you for being so strong and inspiring throughout your journey. During my recent illness, breast cancer, I thought of you often, and how you are always smiling.

Lots of hugs,


Dear Taylor,

Through the years we have shared some fun times together. Before you were born, I spent a lot of time with your grandmother — in fact, I considered her one of my best friends and one of the nicest people I have ever known. She was always telling me stories about you when you were a baby — then later, when you learned to walk and talk – and still later, when you liked to sing and dance. We both had grandchildren, so one of our favorite things to do was to talk about what our grandchildren were doing.

One night when you were visiting her in Raleigh, your grandmother and your family wanted to go out for a few minutes, so Cecil and I said you could stay with us. Cecil and you got back to our house before I did, and when I drove into my drive, I could hear music blaring out to the driveway. I wondered what was going on and who was playing that music. When I walked into the living room I saw that it was you — you knew all the words to High School Musical and had decided to put on a show for Cecil and me. You used the hearth on the fireplace for your stage and the hall outside the living room for your offstage area.

You were beginning to lose your eyesight just a little, and I was so worried that you might fall, but no — you just hopped up on the hearth and sang your songs, took a bow, jumped down and ran to the hall. Then came act two, when you rushed back onstage and sang more songs from the movie. You knew all the words to the songs from High School Musical and sang them beautifully. You were still performing when your mom came to pick you up. What a happy evening that was for Cecil and me!

I also have beautiful memories of the first playathons when you came to hear the students play for you — one after another. You would sit all afternoon just listening to the piano solos. We tried to give you some refreshments, but even as young as you were, you seemed to prefer to listen to the music than eat cookies. I always think of you when I listen to music, because I saw what joy music brought to you.

I did not know your mom as a young girl but got to know her through Halloween parties and sharing trips to see A Christmas Carol before you were born. I did know your brother and sister a little when they were young. But through the years, I have gotten to know your whole family through you, and that is a wonderful gift you have given me. You have given so many gifts to so many people — your life has brought people together and taught us how to love — your smile lights up the room and makes others smile — the way you strive to do your best makes others want to do their best — and when you do not complain, it makes us ashamed of when we complain — and your love of music inspires us all to stop and listen and enjoy.

Taylor – you are a gift to us all.


Dear Taylor,

You don’t know me well…but when I found out you could still enjoy your sense of smell, it made me pay more attention to the things I’ve planted in my garden. I have tried to bring them for you to enjoy as well as your family. I’m not sure how I helped you…but you have changed how I look at things…through the eyes of one who can’t.




I remember watching you and your PFO buddy, Nicole, during the visual art event we had at Creative Campus. The connection between the two of you is so beautiful, and to watch you both creating art together filled my heart. Then, it was such a gift to be able to honor Taylor’s Tale and create a stunning dance piece. Thank you for inspiring everyone around you…you are so loved. 🙂

Big hugs,


I remember getting the page that told me about Taylor and said the words, “Batten disease.” I had no idea what that meant, so I went home and looked it up.

Frankly, what I saw scared me. I didn’t know how to get close to someone who potentially couldn’t walk or talk or plan into her adulthood. All of the things that I was thinking about with college on the horizon were things I knew this girl I was going to meet would miss out on. So how was I supposed to relate to her?

But this is no sad story. I met Taylor at the first Playing for Others buddy event, and my fears could not have been more shattered. Taylor was probably the most expressive child, or I should say teen, at the event. We made art and music and explored Discovery Place throughout the year; at each place, she smiled and laughed and took on every activity with her whole heart. At each place, she also taught me a new lesson. The first thing Taylor taught me: you don’t have to see to know what’s going on or appreciate your surroundings. And by this, I mean not just physically view what’s going on, but that life is more about the feelings. The feelings you get when you do something you love, or when someone is kind to you. The feeling of being in a room full of people letting loose and having fun! The feeling of being reunited with someone you haven’t been around in awhile. All of these things aren’t great because of the sight, but because of the overwhelming emotions that accompany them and make those moments joyful.

On top of this, Taylor taught me no challenge is too large. Some days are hard, and some days are easier, but each day is a blessing, and it is important to do what you can each day.

The last really big thing that Taylor taught me, amongst many small life lessons, is that keeping your head up and your heart open makes a world of difference. Even with what most of the world views as limits, Taylor is more open than anyone I know. Project openness and kindness, and that’s what you’ll receive in return. I can’t even begin to write everything Taylor has meant to me, but she sure did change my perception of reality.

Taylor — I just want to thank you for challenging me every day to see the world through better eyes and take each day by storm. You will always have a special place in my heart.


It has been a long time since we have seen Taylor and your family in Portland. I appreciate Taylor and your family for showing me that the love between family members can move mountains. My small experiences with Taylor are a reminder to those of us in healthcare to keep patient and family needs at the center of the care we provide. Keep reaching for answers, keep asking for support, keep challenging us to do more, think harder and bigger, be better.

Best to you — a hug to Taylor and your parents — I think of you all often.



Dear Taylor,

Where do I seriously begin? I am SO truly honored that I was given the opportunity to be your teacher for six years!

I will never forget that day I first met you. You walked in with the prettiest blonde hair and spunkiest little personality. You talked my ear off as if you knew me your whole life. At that time you were only in third grade, and little did I know that I would have the chance to teach you for six years!

When I was given the news that you had Batten disease and that I was going to be your teacher, I was determined to keep your little brain going! We were going to fight a hard fight with this ugly disease!

People told me you would never learn braille and to not even try to teach you, but I knew you could do it! We became a team! You were determined, and so was I. You worked so hard at braille, both reading and writing it. I was so amazed that a little girl who had lost her vision so fast was able to learn a new way of reading and writing. What I love about you, Taylor, is you did it with pride and surprised everyone around you. You never gave up, said it was too hard or complained. I admire you for that. If we all could have the determination you have, this world would be a better place.

One of my favorite memories of you is when we played Braille Twister. We would laugh so hard twisting our bodies, falling all over the place while reading braille at the same time. At the end of the day, we would have a party for working so hard. You wore high-heeled glitter shoes and danced and sang to your favorite music. There wasn’t a song you did know! You reminded me so much of myself when I was your age, singing and dancing like no one was watching! It would put a smile on my face every time I was with you.

We spent a lot of time together T, and not all of it was happy. We cried together and talked about things that would break my heart. I saw with my very own eyes how Batten was robbing you of your childhood. It was so unfair. No little girl should ever go through what I witnessed. Gosh I miss you! I miss talking to you and hugging you.

I feel so privileged that you came in my life and taught me so much. You made me a better person and teacher. You are an angel on Earth that has changed so many lives. Thank you for changing mine.

I love you always,

Ms. Jill — your vision teacher


You stole my heart and blessed me with your beautiful soul. I am in awe of your tenacity to fight and prove that the “typical” doesn’t apply to you! You’ve been such an inspiration to me, and I think of you daily. I will forever be grateful for the time I was blessed to share with you and your wonderful family. Love you girl!



You have meant so much to my life, and every single moment with you is a blessing. One of my favorite memories of our many days and weeks in Portland was taking the streetcar to Pioneer Mall, where we would make our way to the fountain to make wishes and toss pennies. After a required stop at the candy shop for jelly beans, it was on to Starbucks for Scrabble and decaf lattes.

You have taught me many lessons of life: you have turned fear to courage, despair to joy, trepidation to anticipation, you inspire words to become actions, and mountains to move, and…you turn darkness to light, and then the path is seen.

Taylor, I love you more than life itself! Happy Valentine’s Day, my precious Taylor.


Dear Taylor,

You came into my life as a surprise, but I know now that you were meant to be. At 40, I still had a lot to learn about life, love and priorities, and you were a good teacher. I was always so busy when Laura and Stephen were little. Your sassy little self made sure to remind me what’s important in life.

When I learned my third child would be another daughter, I told your grandmother that I certainly hoped you would be a girly girl. (Your lovely sister was such a sports-loving tomboy!) Grandma Kathryn simply said, “Be careful of what you wish for.” Your love of fashion and ability to accessorize — legendary! How many trips did we make to Claire’s for jewelry and hair bows (always followed by decaf lattes at Starbucks!)?

Your siblings never hosted birthday parties for the dog, but you did…multiple times. Cookouts with cake, streamers and party hats. And canine guests.

I wouldn’t trade the hours we sat cuddled in a chair watching The Little Mermaid for anything. You knew every word to every song. In fact, you loved to sing and dance so much, I was convinced you would someday be a star on Broadway.

Yes, Taylor — you have been an unexpected blessing and, indeed, a bright star helping to change the world in more ways than you know. You have changed my world — you changed me. The key to happiness has new meaning because of you.

You are so loved, Miss T. Happy Valentine’s Day, Sweet Girl!



It’s not too late to send a valentine to Taylor. Share your love note with us via email now, and I’ll make sure she receives it! Send a Love Note

Root Beer and Rameses

By Laura Edwards

Yesterday marked the 12th Valentine’s Day my husband and I have shared.  We’re renovating our kitchen and hate going out on Valentine’s, so he brought home a takeout feast from one of my favorite Italian restaurants and gave me a nice card.  I gave him a card and…root beer.  Four glass bottles of Stewart’s root beer, actually.

Twelve years ago, we were high school juniors and best friends.  Often, on the days that I didn’t have soccer practice right after school, we’d watch movies, play basketball on the elementary school’s blacktop court or walk up to the grocery store, buy a four-pack of Stewart’s root beer and drain all four on the sidewalk outside. We had a blast; it was the best fun $3.99 could buy.  I was dating someone else at the time.  Nevertheless, through all those empty glass bottles, I glimpsed the future and knew that I would marry John.

All it takes to make a happy memory is two people and time.

Something else special happened that year: my little sister was born.  And before she could crawl, she taught me that lesson all over again.  One of the first times I held her, she wrapped her tiny hand around my pinky finger and didn’t let go, even after she drifted to sleep.  When she first started talking, she couldn’t say my name, instead calling me ‘Rar-Rar.’  Later, as a toddler, she often marched around the house chanting this phrase at the top of her lungs.  Halfway through my senior year, T celebrated her second Christmas.  I’d gotten accepted to Carolina a month earlier over the Thanksgiving holiday, and waiting for me under the tree that Christmas morning was a stuffed version of Rameses, the UNC mascot, which played the Carolina fight song when you squeezed its hoof/paw/whatever you call a fuzzy ram’s foot.  Well, Taylor adopted Fuzzy Rameses as her frequent dance partner, and suddenly, ‘Rar-Rar’ replaced ‘ Rah rah Carolina’ in the song’s lyrics.

I left for college eight months later.  A few weeks into my freshman year, I got an email from my mom – or so I thought.  When I opened it, I discovered that it was actually from T.

‘Dear Rar Rar,’ it said. ‘I wanted to send you a message too!  Here goes!  (insert two lines’ worth of randomly assorted letters of the alphabet here).’  I printed the email and stuck it to the corkboard on the wall in my dorm room.  I moved every year that I was in school, and that corkboard got tossed into cardboard boxes and car trunks many a time.  But when I packed the corkboard a few days before graduation, there was the email, a little worse for the wear but still capable of making me smile. Nearly seven years have passed since my graduation day, and I still have that email.

These days, I can’t hold T quite the way I used to, because she weighs almost as much as I do.  Fuzzy Rameses lives on the bed in my guest room – the room I decorated with my sister in mind but that she has never slept in.  Rameses’ batteries are long dead, but he’s got a home under my roof for as long as he wants.  And T hasn’t called me Rar Rar regularly in a long time.  When she talks – which isn’t as often lately – she calls me Laura.  But one thing hasn’t changed.

A few weeks ago, I watched T on a Saturday night so my parents could go to a party.  After dinner, we watched one of her girly girl movies.  Her favorite chair isn’t big enough for both of us, so I sat on the floor in front of it and leaned back against her pretzeled legs.  Ten minutes in, she found my pinky.