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237 pagine
3 ore
Jun 16, 2014


In this book you'll find the the struggles, sorrows, and triumphs of the author after she has two children with a rare and universally fatal genetic disease. As she travels through her hellish journey, you will experience unexpected humor, endless love, and learn how strong one family can be while they walk beside her.

Jun 16, 2014

Informazioni sull'autore

Jessica Bonczar Kenley was born in Buffalo, New York and has since lived many places in New York and Pennsylvania. She has been married and divorced twice and has had a total of 5 children. The first two, Ethan and Kaylee, were afflicted with Epidermolysis Bullosa, a rare and under-researched (because of under-funding) children's disease that causes serious and very painful skin wounds. Ethan and Kaylee died from the Junctional-Herlitz subtype of EB in 2005 and 2008, respectively. Jessica wrote Kidowed as a journal while caring for her daughter Kaylee and coping with the medical system in the United States and her own emotional rage and pain. The book, Kidowed, serves as a tool for awareness for EB, which has been called, "The Worst Disease You Never Heard Of."

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Kidowed - Jessica Kenley




Copyright © 2021 Jessica Kenley

All rights reserved.

Distributed by Smashwords

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this ebook with another person, please purchase an additional copy for each person you share it with. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then you should return to and purchase your own copy. Thank you for respecting the hard work of this author.

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THURSDAY 1/31/2008

I have been told that I should write a journal. Two, actually—one for all of the Good Thoughts and one for all of the Bad Thoughts. This will be the bad one. I’ve decided to call it……….

Fuck You.

And Other Things I’d like To Say To God.

By Jessica Kenley

Hm. That would go off really well with the fam. Or maybe:

The Pursuit of Happiness

After Everything You Have or Hoped For Is Taken Away…Repeatedly

Okay, I’ll stop—you get the picture—I’m not pretending to be on a healing path, and I’m not an expert in grief, although I’ve had more than my fair share of it.

Anyway, the lady who told me to write it is a grief counselor of sorts named Joy. Joy’s story is that she lost her husband twelve years ago.

…..Well, she didn’t actually lose him, as in she couldn’t find him, he died. I just want to be clear, because I’ve started to hate euphemisms about death. People don’t actually get lost, or pass on, and animals don’t actually just go to sleep forever. They die die and then they’re gone gone. We seem to have our emotions completely ass-backwards—we sensationalize death on TV, which desensitizes us to it, and then are profoundly emotionally and mentally crippled when it happens to somebody we love in real life and have no idea how to cope. Well—that’s a rant for later, I guess.

I was talking about Missus Widow, Joy, that was running the grief therapy group that I’d seen a flier for at my last PAP smear, and this is what I wrote about meeting her for the first time:

When you look at Joy, you can feel her sorrow, as if it is a palpable, tangible living thing. It seems to pour from her eyes as if she is always crying. When I met Joy, I thought to myself, "Is that all there is??" Twelve years later I will still be that sad?"

Oh man.

Am I in for it.

The moment Kaylee was born I knew she was going to die. There was a nurse standing next to me prattling on and on about how very long her fingernails were and Oh My Gosh, how we’d have to cut them right awAaayyy! (in a sing-song-y voice) so that she didn’t scratch her adorable fAaaaayccce! What a cutie pie, I just can’t believe those fingernails! I’ve never seen anything like it!

Well I have. I told her to shut up. Shut up and don’t touch her. Don’t do ANYTHING that you would normally do after a baby is born. Don’t you dare rub her dry, and don’t even reach for that plastic diaper, and if you poke her with anything Goddammit I will haul my battered and bloody body off of this bed and stab you back.

Give her to me. Just give her to me. And go away now. Your job here is done. You got her out alive, I’ll take her home to die. I got it from here. I’ve done this before.

During her entire lonely, silent birth by myself in that white room and metal bed with nothing but strangers in scrubs and machines beeping and booping for company, my brain and body and heart were screaming—screaming—BEGGING: PLEASEPLEASEPLEASE for the love of Christ, NOT ANOTHER DEAD BABY.

And it was strangely ironic because her umbilical cord was compressed so that every time I had a contraction, her heart rate slowed…reeeeeeally slowed. I watched it go down to 30 and I panicked, and the doctor told me to lay on this side and lay on that side and put an oxygen mask on my face because I got so scared they could see the whites of my eyes, and they finally said, the nurses— "Don’t worry, hon. We gotcha. Listen, if we have to turn this dayumn delivery room into a crash C-section operating room—we will, but just let US worry about that, okay?

That’s our job.

You just worry about your job, okay?

Just breathe, honey.

Just breathe."

It seems like those are the things your mother would say to you when you were in that situation. But it was just me. Thank God for nurses, I guess.

The irony is that I was worrying about a baby dying who may actually have been born to die.

Anyway, it was not to be. She was born alive, but doomed, terminal, bound for death.

My mind was just…..sort of blankly despairing….I couldn’t believe it. The cruelty of it all. She was so beautiful. How could this happen?

And again?

And why?

Oh, the pain.

The room was silent for the rest of the time the medical staff were cleaning up the mess having a baby makes. The doctor asked me in a hushed, concerned voice if I wanted to be sedated. I shook my head and thought, "Why? and looked at her incredulously and said NO."

Oh, yeah, that’s the solution! Ha! That’ll make it go away. As if somehow I wouldn’t have to deal with this horrible reality eventually. I think she herself wanted to be sedated. She had delivered my Ethan three years before and we had all been shocked and surprised together when he was placed in the NICU mere hours after his birth with blisters and bleeding from everywhere that he was touched.

In practice for 30+ years, she kept saying in her distinguished Indian accent, shaking her pretty head dazedly. She had never seen anything like it. Epidermolysis Bullosa, you say? But otherwise he was so perfect—how could it be? We did everything….

I was so very careful with his pre-natal care—I had checked every box…run every test…consulted geneticists and perinatologists because I have Systemic Lupus Erythematosus…..Ha! Lupus antibodies I was worried about! A heart defect!

No such luck.

Five minutes after Kaylee was born, my Aunt Sweet and mother got there. Late on purpose. They had driven four hours. My mother paused in the doorway, saw that the baby had been born, walked over to the bed I was lying on and bent to hug me.

I said: She has it too, Mom.

She said nothing, and left after that for a long time to cry.

My aunt watched her leave, and then her eyes turned to me. She moved swiftly across the room to take me in her arms and started to cry, while telling me that I was brave.

I hope so, I remember thinking to myself. In the coming months I would need more strength and courage than a Roman Gladiator.

I stared down at Kaylee and wondered idly in my foggy head how long she would live.

It turns out that the fingernails meant that she had the same fatal disease that her brother had died from three years ago. And that’s why, the very first thing I wanted to know the second she exited my body, from the depths of my soul and the whole of my heart, was that her fucking fingernails were normal!!!!!

They were not.

That’s why I was mean to a nurse that day.

With the insidious, evil, almost impossible to diagnose preterm in this country-unless there has already been someone in the family with it-Epidermolysis Bullosa, or EB, is now coined, The Worst Disease You’ve Never Heard Of. This disease predetermines the parents of the child afflicted by it to being a lone soldier in a sea of misinformation, usually given to them by a mob of medical professionals that they desperately want to believe and trust. Usually, both ironically and also surreptitiously, the worst subtypes present with normal looking skin at birth, and the ones that are survivable present as nightmarish—missing skin on entire limbs, hands, and feet at birth. Skin that literally slides off of an infant’s body with the touch of a finger dragged across it unless it is covered and held in place immediately with the same ultra-specialized dressings and wound care management protocols used for the worst-of-the-worst of burn victims.

Add to that a premature birth, a multiple birth, or any other sort of complication with mom or baby, and this situation becomes critical. Most of the time, hospitals have absolutely NO ONE who knows this. In the entire hospital. Sometimes—many times, there is not an EB expert, or even someone with any kind of familiarity with it, in the entire city. People can have doctorates and board certifications and bla bla in pediatrics and dermatology, and never see a single case in their entire career in the United States.

So, it’s super rare.

Believe me—I’ve done the legwork on this one—and heard these words verbatim out of PhD’d to the enth degree mouths over and over again: And how do you spell that again?

Anyway, with the universally fatal Junctional-Herlitz subtype of EB—you look at the fingernails first—not the skin.

I spent most of my time when Kaylee was alive wishing that she would hurry up and die so that I could start over again. Again.

Again again.

So that I could start picking up the endless pieces of my life again.

It sounds horrible to say out loud, but it’s the truth.

You see, when you know that the end result is inevitably death, and that there is absolutely and positively NOTHING that you can do about it…

Well—it’s all that you can think about. Today? Tomorrow? Next week? Next year? It’s maddening. And infuriating. And It hurts so much that you just wish it were you instead of that sweet beautiful innocent baby so you could be put out of your MISERY….but……….. it just… isn’t.

So. You just have to do it.

Like my mother would say: Just do it. Just get through it, do what you have to, shut up and do it, what’s the alternative anyway?

You can do anything for a year, she always said. Suck it up and do it. Like when I went to college. And when my first marriage was eating me alive. That was her advice.

Boy, I sure did it.

I think of this brief but profound period in my life as:


Like, an epoch, an era. It’s like B.C. and A.D. in the markings of time according to humans or whatever, except for me, in the timeline of my life—it’s B.E. and A.E., B.K. and A.K.—this is how my brain categorizes things—

Wellll….did it happen before Kaylee? Oh, after? Well that’s not surprising. Oh even before Ethan?? KKGH! Can’t be accounted for. That was another lifetime

I don’t even know that girl.

Not to say that I didn’t love her to pieces, and God, she was so beautiful to look at that you wouldn’t even believe it, but I couldn’t help but wish that there was a way to speed it all up. Or a magical crystal ball so I could stop going crazy in my head wondering when and how her death would happen and if I was missing an important, happy moment that I could cling to later, when she was gone—or a crucial, decision-making-moment that could affect her care or comfort—every time I stepped away from her, whether it was leaving for the bathroom or leaving for the store.

Everything around her was hazardous—even the dry, warm air that surrounded her from my parent’s pellet stove that winter. Never mind outside influences—other people, pets, hair, dirt, dander, and other possible physical contaminants to wounds—not to mention invisible things, like bacteria and viruses!

And of course, THE biggie—any sort of Mechanical Friction.

And that just means touching.


Picking up and holding.

Hugging and kissing too.

All of the things that make babies thrive and bond with their caretakers…

I was the only one who knew how to keep her safe, I was the only one who knew how to care for her best, and I was the only one who seemed to know that the best life that I could offer her was just to exist, with as much joy and happiness as I could give to her, and without as much pain and suffering that I could spare her, until the day she died.

But isn’t that what makes up every mother’s dream?, I would often think to myself.

So, in order to let her be, just to maintain the status quo, took things like the most concentrated sedatives and narcotics available in this country, and also extremely specialized wound and burn care products, as well as endless rolls of gauze and mesh netting to keep those dressings in place without friction, and then sheets upon sheets of tacky on one side, medicines smeared on the other, thin, foam-like wound coverings that let the treatments seep through them where there is no skin.

Not to mention phone calls to multiple insurance companies and wound care companies and DME [Durable Medical Equipment] suppliers, and agonizing over every diaper and every blanket…aaaaaaaaaaand then there’s detergents and calories and what kind of specialized nipple should I use, and what fortified booster should I add to my breast milk??

…….it never ends.

The worry, the Guilt.

The Could I be doing something more? The thoughts never stop.

You constantly think about whether it was enough to sustain her permanently healing, continuously struggling, temple of a body; because it was continuously breaking down around and inside of her.

Every movement, every touch—a possible catastrophe.

I can say these things now, in the present, while she’s still alive, as if I’m looking back, because in a way I am. I know what I am going to feel guilty about later, right now.


You See







Part One: Blame, Shame, and Reality Bites

Chapter 1: Kaylee Marie

Chapter 2: Okay, So Here’s the Story

Chapter 3: Ethan Tyler

Chapter 4: ResponSUHbility

Chapter 5: Kaylee’s Time On Earth

Chapter 6: A Woman On a Mission:

Chapter 7: Licking, Wrinkles, and Love

Chapter 8: The Beginning of the End

Chapter 9: The End

Part Two: The Aftermath

Chapter 10: Aunt Sweet/Superior

Chapter 11: Rejoining the Living

Chapter 12: Reality Check

Chapter 13: When Somebody Dies Etiquette

Chapter 14: Memories

Chapter 15: Disappointments

Chapter 16: Two Stones

Chapter 17: To Wrap Things Up

Note from the author:

Part One: Blame, Shame, and Reality Bites

Chapter 1

Kaylee Marie

(Miss Kay)

January 31, 2008

Oh, the never-ending, persistent, perseverant, crippling guilt that comes with a fatally ill child—these things run through my head on a constant reel—

What if I didn’t enjoy her enough?

What if I didn’t spend enough time staring at her, memorizing her gorgeous face?

What if I didn’t smile at her enough, sing and play, and do happy things?

These are the regrets that already badger and bloody my soul, my sense of purpose and worth. Because most of the time that I was with her, I was wishing I was somewhere else, somewhere where mothers and babies are protected from these pains, this kind of savagery, where when children do die, they die nicely in their sleep, not horrific deaths caused from things like missing half of their skin, which leads to hypovolemic shock from constant fluid and blood loss or sepsis from invading opportunistic bacteria like some disgusting parasite.

I am a passive observer of my life now from somewhere outside of it, from somewhere in some hopeful futuristic alternative universe, because reality is simply too much to bear right now.

The pieces of my life—I hadn’t picked them all up from the last time this happened, at the time that Kaylee was born. I didn’t think I would ever have to, so I left some behind intentionally, hoping I would never have to go back and retrieve them.

But that’s reality for you—always there to catch you when you fall. No one tells you that reality has bedrock for hands. Which reminds me of the Rock Eater in the Never Ending Story. Maybe I’ll call my journal, "The Never Ending, Repeating Story." Groundhog Day—The Horror Show Version.

God….Joy is religious. Everyone I meet these days is religious. Jehovah’s Witnesses even came to the door the other day. It’s as if God is stalking me. Keep in mind that my parents live off of a dirt road that is off of—a dirt road. It’s also a good eight or ten miles from the nearest town.

The Jehovah’s Witness Lady talked a mile a minute from the second I cracked the door. She told me that she saw my bumper stickers and realized that I must be an Animal Lover, and that GOD loves animals, so imagine how much more he must love people!

I thought, "Yerrrrr sayin’ what now to the vegan vet tech whose life’s work used to be saving the lives of all animals?" with my eyebrows raised at her joyfulness and enthusiasm.

And THEN she told me a story about GOD saving animals that took much too long.

This made me furious.

It made me furious because when she came to the door and asked if I had a minute, I told her that I had one minute, because I had a baby upstairs, so pitch it quick. This was before I saw the Holy Bible she was clutching next to her purse. I must have, somewhere around here in her story, gotten a pinched look on my face, because she finally paused in the middle of all her ridiculous ramblings and asked me if I had ever questioned GOD.


I let her have it.

Whether she deserved it or not, I still don’t know.

Through clenched teeth, I told her that GOD was NOT my friend right now, that I REEEZZENTED the fact that her religion says that GOD loves people MORE than animals, AND that I hadn’t had a whole lot of TIME for conversations with GOD lately, because by the end of this year I was going to bury my second child at the top of that hill over yonder, right next to her big brother, and yes, THAT is the baby that I mentioned before who is upstairs, and that if THIS was GOD’S Plan for me, no wait—lemme take a breath, cuz this is gonna come out a scream:

That if some magical, twisted, dude in the sky actually PLANNED all of this pain, torture, and misery for me, my children, AND MY FAMILY,


I thought

That her version

Of GOD was:



She left after that.

I doubt that she’ll be back.

Joy says that anger is my biggest issue.

Who knew?

After Ethan died, my friend Nickel (I call her that because she’s one of those people that, if I had a nickel for

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