Jessica’s Story

I wrote this essay five years ago, when I first discovered the story that Jessica tells herself about her life–apropos of last week’s post on the most important story you’ll ever tell.


“Where is your scar, Mama?” Jessica asks as she brushes her short brown hair. We’re in the bathroom. I elbow her out of the way so I can wash my face. She turns to stand in front of the full length mirror that hangs on the back of the door. She smiles at her reflection, tall and straight and strong. I hope that she will always smile when she sees her reflection.

“I have a scar on my knee,” I say, patting my face dry with a hand towel.

“That’s not a scar,” she says scornfully. She has seen the three small circles on my left leg, remnants of laparoscopic surgery, and to her they hardly count.

I am not as unconcerned as I sound. She always ambushes me when we’re late for school and I’d rather focus on getting dressed. I know she’s gearing up for something that will take time and ingenuity to explain. She is eight years old, with the cognition of a four year old and the body of a twelve year old. Some days I dig deep and do not find the creativity to answer her questions in a way that will not destroy us. On those days I tell her, “No more questions, Jessica.”

“Where is your scar?” she says, as I brush my teeth. I spit out the paste and sigh. “I have a scar on my tummy,” I say. I show her the furrow like a zipper across my lower abdomen, remnant of the c-section that delivered her into my arms. She pats my hip, as if to say, nice try.

“Where is your scar?” she says yet again. “The one on your skull.” A doctor once told her she had a nicely shaped skull – I guess for one that has been broken into so many times – and she relished the word, tapping our dogs gently on their heads and announcing, “Dakota has a big skull. Taz has a little skull.”

The world feels a bit looser around me, as if the laws of gravity have been suspended. I steady myself against the counter. For a long time I have made the rules of our universe, controlling the information and telling her only as much of the truth as I think I can stand. But that doesn’t satisfy her anymore. She doesn’t care how hard this might be for me.

“I don’t have a scar on my skull,” I say. I pick up the deodorant and roll it on, then head into the bedroom to pull on my jeans. We’ve never had this discussion before. Do we have to have it right now? We’re late.

She trails into the bedroom after me, as I button on a sweater. She is already dressed in her school uniform – white collared shirt, navy blue skirt, and Dora the Explorer sneakers. She is supposed to be eating her breakfast, but I am not foolish enough to think I can deflect her.

She has a scar. She has always known this. “Sunblock on your scar,” I tell her all summer long, have told her since the time she was tiny. “Hat to cover your scar,” I said when it was new because in those days I could not bear to see it. These days, I cut her hair and part it a certain way to diminish the appearance of the scar. All right, to hide it.

But I have always known it is there. She has always known it is there. She used to announce to people, “I have a scar!” and point it out to them, the way other children might say, “I lost a tooth” and pull a lip down to reveal the gap. But she has never asked why she has the scar. She doesn’t ever say the word “why.” She won’t. Or maybe I should say, she can’t. I don’t know why. Her brain devises elaborate convoluted ways to ask “why?” without actually saying the word. “What is that door open about?” she asked me earlier today. It is the same thing as, “Why is that door open?” But not quite.

“Are you working today?” she will start a conversation with me.


“Do you work a lot?”


“I would like you to play with Jessica.”

“But I have to work.”

“I don’t understand,” she’ll say. “Tell me the reason.”

“The reason why I work,” I say, emphasizing the word why though she never picks up on this clue, “is to pay the bills. And because I like to work.”

Today she wants to know about her scar but she can’t ask the question. And I’m too chickenshit to answer what she hasn’t asked. I have rigorously and methodically repressed all the memories of the fear and the machines and the brisk doctors and the marriage that failed and the life that got left behind.

“Where is your scar?” she demands again. “Your scar on your skull?”

“I don’t have one,” I repeat. I know she is trying to ask why. I pull on my socks. “We’re going to be late,” I say, reaching for my shoes. She touches my hair as I lean down, sifting it through her fingers.

“Where is your scar?” she says, softer. I feel her fingers on my scalp. She is trying to find my scar. If I have a scar then it is normal to have a scar, it doesn’t matter if no one else has one. If Mama has a scar it will be okay. I capture her small sturdy hands in mine. Her face is serene. It always is. You can never tell what she is thinking by the expression on her face. Her brown eyes are focused intently on me and I know I won’t escape.

“Do you want to know why you have a scar?” I ask, emphasizing the word why without really meaning to. She nods. “A long time ago,” I begin, “you were a little tiny baby.”

“Big girl now,” she reminds me.

“Yes, big girl now. But a long time ago, you were a little tiny baby. And the very first day you were born, you had seizures.”

“Seizures,” she nods. She knows about the seizures because she takes seizure medicine twice a day. I have always been matter of fact about that. Time for your seizure medicine, I say. You don’t want to have a seizure. I don’t think she really knows what a seizure is, but she knows she will have one if she doesn’t take her medicine. So she takes her medicine.

“You seizures never stopped,” I say. This story is hard for me to tell. It always makes my voice shake and my breath come in hard painful gasps and I can never help crying. The story was so hard to live through that I wanted to kill myself so I would not have to endure it.

“I don’t like seizures,” Jessica says, her face solemn.

“Me, either,” I say, and try to block from my mind the frantic emergency room visits, the endless days of testing, all the blood and pain and fear. My tiny daughter disappearing before my eyes, retreating from the world, unable to hold her head up, unable to eat. The seizures never slowed. I watched my daughter die while the doctors dithered.

At night I would log onto the Internet and look up the words they told me: infantile spasms, tuberous sclerosis, megacephaly. I saw the drugs they were giving my daughter could hemorrhage the veins of babies, could destroy her bone marrow and kidney function, render her blind. None of the treatments made any difference. None of them helped stop the seizures, ten, then twenty, then a hundred seizures a day.

“So the doctors did tests and discovered that your brain was sick,” I say. The images were terrifying. When the neurologists showed me what her brain looked like – malformed, misshapen, riven with lesions and tumors – I spent three days vomiting like a cancer patient on chemotherapy. All of the happiness and laughter and joy I had felt on first holding her in my arms disappeared beneath the weight of that reality. My marriage did not survive the strain of it, the CT scans and nuclear medicine studies, the endless endless hospital corridors.

The pain of that failure and the death of a love I thought would never end feels fresh as I tell Jessica the story. I wanted a family so badly, a husband and children and dogs, and those dreams died hard under the glare of the hospital lights.

“The doctors decided they would have to take out the part of your brain that was most sick so you wouldn’t have so many seizures,” I tell her now. She nods. She’s watching me closely; her eyes are bright. The story is enormously absorbing to her. I feel as if she asked me to rip my heart out and show it to her. I understand that she is hearing the story of Jessica for the first time, and so I delve into the memories to add some details, despite the pain this causes. I tell her about the spring snow, and Dr. Buchhalter’s gray goatee, and the neurosurgeon who sang her a lullaby to sleep.

“What lullaby?” she demands.

“The mockingbird song,” I tell her although I don’t know how I remember this or if I’m making it up. She nods with satisfaction. That’s her favorite lullaby. I still sing it to soothe her to sleep.

“Mommy was scared because you were so sick,” I tell her, and I hear my voice waver. I remember offering her up to the surgeons that awful April morning. I touch her head – her skull, she calls it. Her hair is silky and soft beneath my hand. I remember how they shaved it off that day, the golden brown curls piled on the floor.

“The doctors had to cut open your skull” – I trace the red rigid scar with my finger, starting at her forehead and curving over her skull to stop behind her left ear – “and they took out the left side of your brain.” A hemispherectomy, they call it. I have seen the new images on the CT scan, more horrifying than the old. Instead of a misshapen brain on the left side, there is no brain at all. I told them to do that, I thought, appalled, the first time I saw. I could not get the image of emptiness out of my mind for days after.

“Because your brain was sick and they had to take part of it out,” I say, “you can’t see very well. And your right arm and leg don’t move very well. That’s why sometimes you have trouble understanding things. And why sometimes you have trouble saying what you mean.” 

I am trying not to cry now. All of the potential she had, stolen away like that. She might have been anything. But now what she has ahead of her is a long, slow struggle. And she will never achieve an ordinary life. If only, I think, as I have thought for many years. If only.

“I have a scar because my brain was sick,” she tells me, summarizing her knowledge.

“That’s right.”

“But I am big and strong now,” she says. It is true. She has learned to walk and to talk, to run and to play. She has learned to use the toilet and to dress herself. She has learned to read and to write and to add numbers together. She has loved two dogs and buried one; she is not a little girl anymore.

“Yes,” I say, “big and strong.” Those are the words I always use to describe her. They are two true adjectives.

“And beautiful,” she adds.

“Of course,” I agree. I try not to think of the other things I wanted for her: smart, gifted, bright, talented. My Jessica is slow and solid.

She stares at me for a long time. “Are you crying?” she asks.

“Yes,” I say, wiping at the tears.

“Are you mad?” she asks.

“No, of course not, honey,” I say.

She pats her hand against my cheek. She is trying hard to say something. Pat, pat, pat. Her brain is busy finding circumlocutions for her, a series of questions to help her dig out the truth.

“Are you crying?” she asks, starting over, like the way you reboot a computer when it has gotten hopelessly tangled up.

“Yes,” I say patiently. It doesn’t matter that we are late. She stares at me some more, at the tears drying on my cheeks.

“Are you crying because you are mad?”

“No, honey, I’m not mad,” I repeat. I am used to repeating.

“Are you happy?” she asks. “No,” she answers her own question, remembering that people don’t usually cry because they are happy. Then her brows come together in puzzlement: “Are you sad?” she guesses, incredulous, her voice filled with wonder.

“Yes, honey,” I tell her. “Yes. Mama is sad.”

She looks at me, her brain working. “Why?” she finally, finally says. “Why are you sad?”

“Why?” I ask. It is the first time she has ever used the word, but I don’t even know how to begin to answer her.

“Yes. Why are you sad?”

Why am I sad? I ask myself. “Because,” I say. “Because I was so scared when you were a baby. I was so worried. It makes me sad to think about how sick you were.” But even to my ears, this reasoning falls flat. The truth is, I am sad that she is the way she is. And I would give my life for hers to be different, ordinary: to have a life like other people get.

But she has finally heard the story of her life, and I can see from her point of view there is nothing particularly sad about it. She comes out looking pretty good, in fact. She is intrepid and courageous, brave and sturdy, stout of heart and unsinkable. Big and strong and beautiful, just as I have always said but somehow never quite believed. Or never quite believed was enough.

“Give me a hug,” I say, and wrap my arms tight around her.

She complies but has to register an objection: “Mama is silly,” she says in my ear.

“Mama is silly,” I agree.

“But I will always love you,” she promises. Despite my imperfections, my flaws and my silliness. Dismissing my sadness and forgiving me for it, all in one sentence. I will have to add a fourth adjective, I think. I will have to call her big and strong and beautiful and wise.


  1. You made me cry again, Jennifer. How wonderful that the story of her life taught Jessica to ask "Why."

  2. Thank you for sharing….your words are like a painting… You make me "see" when I read them. Jessica, and you, are both amazing. Thanks again.

  3. Your writings about Jessica always make me cry. You capture so beautifully those moments of anguish that are mixed with joy somehow at the same time. What you described above, that inability to talk about "it" with your disabled child – I so get it!! We just put our 8 year old son on a "diet" of sorts, and our verbiage has been, if you lose your belly a little bit, it will be easier for you to walk (he walks with a walker). And we throw in Mommy and Daddy are on a diet too, because we all have bellies, it's a family diet, not just an Evan diet. So Evan wisely says, "Mommy, you have a fat belly, but YOU can walk." And then that question is there, but I can't find the strength to answer it. Thank you for expressing so beautifully what I can't always speak!

  4. Jennifer – beautiful post. I check on "you guys" from time to time. Even though I know our paths will never cross, you and Jessica are in my thoughts often. I love that you go for Chinese on Thanksgiving, which, oddly enough, reminds me of The Christmas Story. Have a blessed holiday season. Deb

  5. I just came across your blog and wanted to say that you tell your daughters story beautifully. I too have a child with Tuberous Sclerosis. He is very severely affected, had to undergo brain surgery at 11 weeks old and then developed hydrocephalus as a result which caused a lot of brain atrophy. He struggles to move, eat, see, play etc…I sat here crying as I read this because I know your pain. I feel it and live it every day. You daughters story gives me hope. Bless you.

    Laura G

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