Amy

[From the unpublished Hieroglyphics from an Unremarkable Age]

“The gods are cruel. We humans must be better.”

There once lived a remarkable little girl named Amy Wang. Over a period of several years, the San Jose Mercury News published three extensive articles about her brief life. 

She was born with Fanconi anemia, a rare condition that is eventually fatal. She was almost blind and deaf, and fed through a tube. A doctor told the parents she would never walk. The doctor also told her parents that she might not be worth saving. 

Imagine a parent being told that. Their little baby might not be worth saving. I don’t blame the doctor; he was just trying to be realistic as he saw it. Perhaps he was at a loss for words at trying to explain a horrible situation and indelicate language came out instead.

Amy was also born without thumbs. Doctors transplanted one of her big toes onto her hand, giving her a thumb. One of the first things Amy did was suck her new thumb. This is one of those simple things in life that Amy made us realize is astonishingly important. A child lacking a thumb to suck misses out on an important part of being a baby. That’s what babies do. They suck their thumbs. I’m glad they gave her this for her brief life.    

I often wonder how many people read the newspaper articles about Amy. I’m guessing hundreds of thousands of people read these, and I’m sure many of those were deeply moved, some even to tears like I was. 

Of those who read the articles, I wonder how many actively followed her story. I’m sure it was far fewer. Not because Amy wasn’t worth the effort or because they believed this was the case, but because we are so busy and the news is filled with tragic stories every day. I lay no blame here, either. That’s the way of such things. 

Of those who followed her story, I wonder in what ways their lives were touched or irreparably changed. How many of us were among those in attendance at her funeral? I’m sure I wasn’t the only one. Her tale is too amazing.

I wonder how many of us who read the stories visit her grave several times a year.

She ended up walking after all. She smiled and caused smiles. She loved feeding ducks. She loved snails, and they were her friends. Her parents had another child, a boy named Felix, in the hope that his tissue was a match that would save his sister’s life. It was a match, but she died anyway.

I hope I never have to attend another child’s funeral. The sight of her tiny casket…man, I didn’t expect it to be so tiny. So damn tiny. It brought to mind a quote from John Steinbeck’s The Grapes of Wrath:

“…for a baby must be well buried, since it has had nothing else of life.”

An adult’s funeral, they often say, is a celebration of life. Not so a funeral for a child. A child’s funeral is a well-deserved cursing of the gods, a hopeless lamenting of years that will never be lived, and the inconsolable anguish of parents suffering the most profound of losses. 

They say that God works in mysterious ways. I say that He can keep his fucking mysteries and not let children suffer and die far too soon, their parents left to weep unnecessary tears.

I’d promised myself I’d follow Amy’s story to the end, whatever that end would be. Such promises are inviolate. I came to the funeral thinking that its conclusion would mean the end of her story for me.

It wasn’t.

Because toward the end of the funeral service the minister said that this was not the end of Amy’s story. I immediately realized this is true. 

I know it’s hard for Amy’s parents to visit her grave, and I want them to know I’ll watch over their baby for as long as I can. I hope this gives them a measure of peace. I hope I have another twenty or so years left in me to do so. That’s a long time to visit a grave, much longer than most graves get visited. Amy is worth it.

I visit her grave on Christmas and Easter, and the Sundays before Valentine’s Day, her birthday, and the anniversary of her death. I’ll do so as long as I’m physically able. 

I leave home early on those days, and do some of my best thinking on the drive there and back. Amy is buried in the infant and child’s area of the cemetery. Some of the babies lived only one day, the gravestone etched with a single date. One day less and they would’ve never been.     

A single day and the joy of a new baby becomes the anguish of grieving parents. 

I quietly curse the gods at seeing these carved reminders of their willful impotence and indifference. I, a mere mortal rife with human flaws, would not have turned my back on these babies after a life that was a single, cruel day. I would’ve given Amy many more years to feed the ducks and the good health to fully enjoy it. God didn’t give her thumbs, but he did give her the best parents. I’d have given her both.

There used to be a beautiful tree at the cemetery, which flowered each spring in an explosion of the most incredible purple flowers. The road below the tree became carpeted in purple petals. I always wondered what type of tree it is. Years later I finally found out it’s a jacaranda tree. A shame we don’t know the names of trees, flowers, and other plants anymore. 

When I visited the cemetery for Valentine’s in 2016, I noticed they’d cut down the jacaranda tree. This made me very sad. People don’t live forever. Neither do trees. Though obviously true, this fact does nothing to lessen the sadness.          

I used to worry that my life was wasted. I realize that if given the choice to have met the mothers of my nieces and nephew and goddaughter, and learned of Amy’s story, or have led any other life (e.g., Super Bowl winning quarterback, Nobel prize winner, actor, rock star, billionaire, etc.), I’d not change a thing. In fact, I’d be afraid to change anything, since it was the narrowest of margins that these vitally important things came to pass. What if I’d not met Natalie, Nathan, Jacquelyn, and Allyson’s mothers? What if I’d missed reading the newspapers on those days when the Amy stories ran? 

Amy led me to Rana, of that I am certain. Natalie, Nathan, Jacquelyn, Allyson, Amy, and Rana led to a perspective on life that nothing else could’ve. 

I think of the parents who have sex-selection abortions, which, despite what Liberals might tell you, almost exclusively targets baby girls. I say a person who would have a sex-selection abortion should not be allowed to have any children. They toss away precious life for the vilest of reasons—a baby’s gender—while these grave-markers leave cold testament to the other end of the maternal spectrum—parents who loved their babies, boys and girls, unconditionally with all their heart. Forever. Yes, contrast this with Amy, who had parents who fought mightily for their little girl.

With the sympathy card, I enclosed a letter…

Dear Amy,

I first learned of you from a newspaper article several years ago. I’ve followed your story on the CaringBridge website ever since. I was always scared when I saw a journal update, not sure if it was going to be good news or heartbreaking news, but I tried to be brave like you and did my best, whatever the entry.

You faced many profound challenges in your short life. Your struggles and the heartache of your family are unimaginable to most of us. Despite this you had a measure of happiness as evident by the pictures and postings on your website and from descriptions in the newspaper articles. My favorite picture is the one of you feeding ducks at a park. This is an activity that makes all children happy and you were no different.  Looking at the pictures, I said to myself, “This girl has the most beautiful smile, full of love and warmth, shining brighter than any sun.” The world was very lucky to have your smiles, even for a little while.

Every child needs good parents. A particularly special child like you needs the best parents of all. In this regard, you were a very lucky girl. You had parents who loved you and fought for their little girl with heroic strength. They are truly incredible parents.

A doctor several years ago asked if your life was worth saving. That is a staggering question to pose to parents.  How does one answer such a life-changing question that would stump the greatest philosophers who ever lived? 

I believe that you answered this question yourself. The weight of a life is not measured by wealth, fame, or years. A life is measured by the impact we have on others. In this regard, you are a giant and your life had tremendous relevance.  Most importantly, your life will continue to have an extraordinary impact, and I’ll explain some of the reasons why this is true.

There are the intimate reasons. You have a little brother, Felix, who you loved. You have a mommy and daddy you loved. You have caregivers, teachers, and friends who loved you. You astonished medical providers who were amazed by how far you came despite the mighty challenges you confronted. We hope the medical community learned things from you that may help other Fanconi anemia sufferers, advancing the fight against this disease.

Then there are broader ways you impacted the world, as evident by the many entries in your guestbook from visitors to your CaringBridge website. There were the strangers who cared and shed genuine tears at your plight. You loved and were loved by many people. You changed lives. You changed mine. You made me ashamed for the insignificant things I complained about over the years; you made me braver; you made me hold my nephew and nieces closer and tighter when I hug them; you made me tell them I love them and mean every word of it; you made me hope with all my heart that you’d get better; you made me a much better person. All these things mean that the world is infinitely fortunate for you having blessed us with your presence for these few short years. 

Yes, Amy, you answered the question indisputably: You were worth saving.

Though in the end your heart gave out after a courageous struggle, your spirit endures in each of us whose lives you touched and, more importantly, in the lives that we will touch as better people for having known you and your story. I’m so profoundly sad you died, but I’m grateful for your having been here. I know you are a good big sister and will always look after Felix from Heaven. I am comforted by the fact you are at peace and leave the world an improved place for having been here with us. 

Love,

Joe