Love, Justine

So, on November 24th, 2001, I married Bobo the Sperm Guy. Life got pretty bad. It turned out that we both had a pretty bad vodka problems at the time, made worse by the fact that he was a screamer when he got drunk.

And a thrower-of-furniture.

And a rapist, among other things.

He had Obsessive-Compulsive Disorder something fierce, and if everything in the entire apartment wasn’t just so, he would fly into a blind rage.

We stayed at our year-long lease in Scranton and then moved to Pittsburgh, where I planned to go to The Median School of Allied Health Careers and finally become a licensed veterinary technician, which I did.

We decided around November of 2003 to get a divorce. Then wonder of wonders, I found out I was pregnant immediately after finding out that I had passed the State Board Exam and would be licensed as a vet tech. 

I dumped the celebratory  bottle of vodka I had bought myself down the drain and told Bobo. We decided to stay together “for the baby’s sake.”

We did not stay together. 

I moved out when I was seven months pregnant because I could not imagine subjecting a child to our horrible relationship. I have started substitute teaching at the school I had graduated from, and would soon be working there full-time as a vet tech instructor. 

While my personal life was falling apart, my career was taking off. And I was going to have a baby! I loved my new crappy one-bedroom apartment, and I loved my life for once. I could do it, ex-husband’s-to-be be damned.

I knew I could do it. 

Until I couldn’t.

My son Ethan was born with a fatal skin condition called Junctional-Herlitz Epidermolysis Bullosa. Put simply, his skin would not stay on his body, and you can’t live without your skin. Put no-so-simply, there are protein fibers called anchoring fibrils that anchor the top layer of skin–the epidermis–to the underneath layer of skin–the dermis. People with JEB-H are missing these anchoring fibrils completely or have very few of them. This results in blisters and missing skin anywhere on the body that is subject to any mechanical friction. 

And mechanical friction can mean anything from rubbing to just picking up and holding. They call these babies “Butterfly Babies” because their skin is so fragile, it’s like butterfly wings.

They also call EB “The Worst Disease You’ve Never Heard Of,” because it’s so incredibly rare. But I am a carrier of the gene that causes EB, and so is Bobo. This means that with every pregnancy from the two of us, there is a 25% chance that the baby will have JEB-H. It should be noted that there are less severe subtypes of EB, such as Dystrophic and Simplex, that are more survivable than JEB-H, but nobody gets out of Junctional alive, and average lifespan is six months. 

Ethan lived seven.

I didn’t know how to exist after Ethan died. 

Like–how to breathe or function. He had taken up every second of my time with all of his various special needs, and I couldn’t figure out what to do with myself when he died. 

And I didn’t know this yet, but I had developed PTSD too, somewhere along the way, so I began having nightmares and flashbacks.

I got another job to fill up my time. I also joined an animal rights group called Voices for Animals and started fostering insane numbers of cats. 

I moved.

I quit my wonderful job at the school and went back into practice full-time.

I basically went bat-shit crazy.

I went back to college.

I moved again.

And then–in a supreme fit of agony/loneliness/lunacy,

three years after Ethan died, I got back together with Bobo the Sperm Guy.

Worst. 

Decision.

Ever.

Even though I was on birth control, inexplicably, we got pregnant.

Again.

My nice, sweet, Indian doctor who had delivered Ethan offered me an abortion. 

I thought long and hard about that, but after losing my only child to a horrific illness, I couldn’t give up a 75% chance at a perfectly normal, healthy baby.

There is no prenatal test for EB.

My daughter Kaylee is born.

She has JEB-H too.

I move back home with my parents to take care of her full time (Bobo and I had split at five months pregnant this time).

I spend my days changing bandages and hating myself.

Kaylee Marie Kenley dies at three months old.

* If you have any interest in knowing about the eternal torture of losing a child (or two, for that matter), I published a journal I wrote during the year that Kaylee lived and died on Amazon. It’s called Kidowed–I made up a name for people who have lost children because I was mad that there wasn’t one. Like widowed, but for kids.

Get it?