My Beloved Waverly
“The greatest of poems is an inventory,” wrote the English writer G.K. Chesterton. His point was that in a time of crisis or tremendous loss, an inventory, a simple list of items, can take on newfound meaning, becoming the loveliest and most important of things. A pack of matches or a blanket is of limited value to a person in the comfort of a well-ordered home. However, these things become invaluable to that same person when stranded and alone on a desert island. Indeed such an inventory at a time of desperation would be more lovely than the greatest of poems.
As I think about my little girl and the fact that she is no longer here to touch, to hold, to comfort or care for, I find myself like that man on the desert island, shipwrecked by loss and unspeakable grief. Instead of my little girl, I am left--we are left--with only an inventory of memories of her. And this inventory is to me the most marvelous of poems. In it, we can see glimpses of Waverly, her life, and the love, the joy, the inspiration she gave to me, to Shannon, to her family, and to you. Such an inventory is, at once, a painful reminder of all we have lost and a consolation, comforting balm for wounded souls. I would like to share with you some of the verses of this great poem that are in my possession.
I remember Waverly, the surprise. In early 2003, Shannon and I hoped to expand our family. The March pregnancy test, unfortunately, came up negative. We talked about our disappointment for a bit, but when we went to throw away the test, we noticed that it had turned positive. This was how we learned that almost nine months after Valentine’s Day, we would welcome our first baby, Waverly Mae.
I remember that little baby, who put her mother through a difficult delivery that ended with an emergency C-section. That was the little baby who laid on my chest for hours on end and miraculously slept through the night after four weeks, who took an hour to eat and hated green beans, who cried when the sun set and had a fever and an ear infection every single month until she had a surgery to put tubes in her ears. As a baby she gave shy smiles to strangers, got compliments in restaurants, and became inexplicably upset when she saw someone who looked like me.
I remember Waverly, the joyful, who danced and twirled and ran, who at three years old wore a Dora the Explorer backpack constantly and a Snow White dress for special occasions. She enjoyed puzzles and mazes and could never pass up a carousel without getting a ride. The little girl who literally hugged trees always found a stick to carry, transforming it in her imagination into the most precious of toys. I easily recall how she giggled through thrill rides--usually roller coasters, and the bigger the better--each turn and twist made her laugh harder until she sounded maniacal, at which point she inevitably got the hiccups. She loved birthday parties, no matter whose, and eating black beans and quesadillas at Chipotle, which she mistakenly called Chicago, and spending time at playgrounds from our local favorites in Ohio and St. John’s Wood Church Park in London, to Clemyjontri right here in northern Virginia.
I remember Waverly, the considerate hostess, who regularly convened tea parties for her stuffed animals, giving each a seat at the table and pouring for her mommy and daddy and even the dog and anyone else who walked through our door. When some of her favorite babysitters, our friends Renee and Keith or “Mr. Peep” as she called him, came over, she would bring all her toys--all of them--and set them on their laps and at their feet as a kind of friendship offering.
I remember Waverly, the music lover. Her love of music was so intense it led me to do embarrassing things like sing “I’m A Little Black Rain Cloud” in crowded public spaces or say things to friends like “Wiggly Wiggly World really is the Wiggle’s White Album.” Her favorite songs always got a response out of her, whether it was the Wiggles’ “Taba Naba”, which soothed her when she cried, or “Twinkle, Twinkle, Little Star”, which she knew as the last song before the lights went out for the night. It was at a weirdly competitive Kindermusik class that we first saw Waverly did not fit in with her peers, as she couldn’t quite keep up with the other kids. On the day she was diagnosed with Sanfilippo syndrome, I watched her singing “If You’re Happy And You Know It” in the backseat as we drove home from the children’s hospital. She could still sing for nearly a year after she lost the ability to talk, and I remember seeing her fight desperately to get the words out even when it was no longer possible for her.
My favorite musical memory, enhanced and preserved because it was caught on tape, is of her singing “Deep In The 100 Acre Woods” to her brother, Oliver, at bedtime. The best part comes after she finished the song and realized I was clapping for her. She looked up at me and smiled this big, joyful, bright smile, all because she knew she had my approval and affection. The feeling, my dear, was quite mutual, and it always will be.
I remember Waverly, the lover of stories who could spend hours thumbing through her books--CLICK, CLACK, MOO; SAMMY THE SEAL; ELMER; IMOGENE’s ANTLERS; CORDUROY; and countless others. A stack of books and an apple could buy her tired parents up to an hour of peace and quiet. As a toddler she would bring book after book to any person in her orbit she suspected of being literate and demand that they “we-e-e-ad it!”. She was always attentive and called out anyone who skipped pages or flubbed words, and in her adorably tyrannical way she would demand that you re-read the book that you just finished. We read together throughout her life, all the way up to her very last days, sharing with her my favorites--The Wizard of Oz, The Wind and the Willows, Roald Dahl, and C.S. Lewis.
I remember a wild child, who would steal food off of other people’s plates, who I can see walking around my parents’ house carrying a glass of red wine left unattended, who loved taking off Oliver’s socks for fun, who would find little acts of disobedience slightly hilarious. I remember how she “helped” me with her brother’s diapers, which I sometimes found a day or so later somewhere in our apartment other than the trash can. Sanfilippo turned her into a rambunctious little girl who was challenging for teachers in her early years. Once when I picked her up from school, I peered into her classroom and saw her run by the doorway, laughing hysterically, and about three steps behind her came a haggard teacher, running and trying in vain to rein her in. The school soon after assigned an aide to the classroom to provide some assistance. Those aides, Erin and Chao-An became two of Waverly’s very best friends.
I remember Waverly, the big sister. When Oliver was born, her grandma Linda brought Waverly to the hospital to meet him. I lifted her up so she could see him better, and first word out of her mouth was “Monkey!” Since I always called her Monkey, it was nice to see her accepting her brother into the family so readily and, I assume, affectionately. Her enthusiasm for Oliver was as cute as it dangerous to him. She always asked to “Hold it!”, referring to her brother, and she would nearly smother him with kisses and snuggles while repeatedly saying “Hi Oliber!” and waving at him, even if they were six inches apart.
She made an excellent big sister and, in so many ways, made life easier for Oliver. We spent the first three and a half years of her life thinking she would grow up into an adult and should be progressing normally. We were frequently frustrated and concerned by her lack of progress, sometimes mistaking it for disobedience. Because of her, Oliver never experienced our unrealistic expectations, and benefitted from early intervention and our improved understanding of the medical issues he faced from the very first days of his life.
I remember Waverly, the animal lover and baby whisperer. As a family, we loved going to zoos, whether in Columbus, DC, or London. Inevitably, an animal at the zoo--a tiger or an elephant or an ape, horse, or pig-- would form an unusual connection with her, fixing their eyes on her and following her through their habitat. I assure you they weren’t just hungry and this happened too often to be coincidence. She loved her dogs, Wylie and Watson, and the animal encounters at Jill’s House. As a toddler, her favorite toy after her Baa Baa, was the baby doll she received for Christmas when she was two. How she loved taking care of that baby, feeding it, changing it, walking it, and hugging it. Later in her life, it became clear that babies inexplicably gravitated to her, leaning in for hugs and kisses, even when meeting her for the first time.
I remember Waverly, the traveler, and early morning pancakes on the shores of Cape May, and Make-A-Wish trips to Disney World where she squealed like a teenage Beatles fan upon seeing Winnie the Pooh characters. We walked all over London together, never tiring of picnics in its parks and riding in the top of the double decker buses because it was just more fun up there. We explored our way through Germany’s Christmas markets, and she fell asleep right as we started our tour of Neuschwanstein Castle, letting me carry her all the way up and down the castle’s 357 steps. Because of the way young girls love Gilbert Blythe, I felt it was my duty as a father to take her to Prince Edward Island, the home of Anne of Green Gables. We made it in 2013, and it remains one of our sweetest memories as a family.
I remember Waverly, the sensitive soul, who cried when her favorite shows ended or when she had to leave her friends. Waverly would regularly take the hand of total strangers, usually bringing a surprised smile to their faces. I used to joke that she would take the hand of an axe-murderer while he still had the axe in his other hand. One of my favorite memories is Waverly attending therapy sessions with a little girl with Down syndrome named Sophie. I doubt you have ever seen two people more excited to see each other than Waverly and Sophie. They would run across a room to greet one another, huge smiles on their faces, and take each other's hands and dance in circles. Wavey would yell her friend’s name, which due to her hearing impairment and speech impediment always came out as “Dopie”, until they broke down in a giggling fit.
I remember Waverly, a student and a teacher. She first started out at the Wellbeck Nursery in London as part of their special needs program. In 2008, some of the other parents protested to the school administrators that including kids with special needs at the school would impair the quality of their child’s education. That’s right, they basically complained, in front of us, that having Wavey at their child’s school would be a bad thing somehow. It made the day of her graduation from this school one of the proudest of my life. I still have the picture of us defiantly showing off her certificate in front of those other parents.
The contrast with Vienna Elementary School could not be more stark. At VES, Waverly was loved by faculty and students alike, who embraced and protected her, read to her, played with her, and invited her to their birthday parties. To the students at VES, you need to understand that your love for Waverly meant the world to her mom and me. You had a choice; you could have been kind or you could have been cruel. Together, you were kinder than we ever would have hoped and your parents should be incredibly proud of you. We know that losing Wavey broke your hearts too. If only those short-sighted parents in London could see now the impact Waverly had on the moral education of the students at Vienna.
I remember the kid with special needs. It started with developmental delays--limited speech and falling behind her friends’ physical abilities--and ended with her in a wheelchair, with a feeding tube and all the incremental steps in between. I remember Waverly as a night wanderer who could not stay asleep and always left her bedroom to look for Shannon and me. How we wished she would sleep! It was hard to remember those days, when in her last weeks all we wanted was for her to wake one more time so we could look into her eyes.
One year after she was diagnosed, we gave her a short bob haircut like she had when she was little. However, by this time MPS had made her very fine hair incredibly thick. Rather than a cute cut, it gave her a bit of a hair helmet. Add to that her chewy necklace, her bright pink wrap-around glasses, and her hearing aids, and you get her first grade school picture. When I first saw it, I wanted to cry at what we had done to her. We were also told that if she was ever missing, that was the photo that would be used to alert the public. With a little time and perspective, that picture became one of my all time favorites of her. Even for her parents, the special needs sometimes loomed large, and we too had to re-learn how to see through the exterior to focus on the image-bearing person. We are incredibly grateful for a place like Jill’s House, which exists solely to serve kids with special needs, like Waverly, and their families. Jill’s House is a place where kids like Waverly were loved, valued, and accepted just as they are. Thank you Jill’s House for supporting and loving our family, and thank you all who support Jill’s House.
There are so many little things I remember about you, Wavey Mae: your pigtails; the little gap between your front teeth; your crooked smile; your infectious giggle and squeaky laugh; the birthmark on your wrist; how entertaining you were playing with your first best friend, Colin; how giddy you got about seeing your grandma or cousin, Mel Moo; the abject panic we felt the time we lost your Baa Baa in the middle of Ohio only to find that a good Samaritan had gone out of her way to save him; how you would say “uh-Oh’d” whenever clocks would chime; that smile on your face the day we met Elmo in the freezing cold after a catastrophic blowout left you wearing only a diaper and your mommy’s sweatshirt; or how you used to beg, excitedly and insistently, for us to let you watch a MOO-bie, MOO-bie, MOO-bie!
DUMBO, by the way, was always my favorite of your movies because there’s a line in it that felt like it was written just for you. When Dumbo’s only friend, Timothy the mouse, realized that Dumbo can use his ears to fly, he tells him, “the very things that held you down are going to carry you up and up and up!”
Like the little elephant with big ears whose differences kept him from fitting in, MPS made you different, Wavey. But your loving heart and gentle spirit, MPS could not steal or hide, and I saw repeatedly how you softened the people around you and make them kinder and more compassionate. We were and are so very proud of you. Yes, the very thing that held you down, Waverly, has carried you up, in this world and into the next. You’ve been called home. But we’re still here, and we miss you terribly. I am so grateful for your life. Thank you for leaving us with these wonderful memories, which are to me the greatest of poems. I will treasure them always. I love you, my daughter. May God bless you and keep you.