Before three months passed, I had jabbed my infant daughter with a needle at least a dozen times. The number would have been higher, but most frequently my wife wielded the instrument in her own hand, steadied by two decades of sewing and her own lifetime of blister care. She was very good at it, and I would become very good at it, but in those first months I was afraid.

We were unsurprised when it came to pass. I heard our daughter’s first cry, and then the second sound was our OB/GYN telling nurses, “She’s got what Sara has – look at the thumb – be careful.” And it was true: there was no skin there. In utero, her tiny mouth had sucked it all off. She wanted so badly to suck on it again after birth, but of course we couldn’t let her. We denied her the healing thumb by placing socks over her bandaged hands. It was the ankle that worried us more, actually. The law required a security anklet. She constantly wore specialized bandages developed for burn victims, but nonetheless, 72 hours in the hospital left her with a gash of rawness that took two months to heal.

A few hours ago, her long and perfect fingers played “Ode to Joy” on our thirdhand piano; a few hours before that, she ran the fastest mile of any girl in the fourth grade. It’s hard to connect our nine-year-old to that fragile infant. She has a few active blisters currently (and she probably always will) but hasn’t needed a bandage on an area since a fall at Girl Scout Camp this summer. Just like her grandmother’s and mother’s before her, her skin has grown more accustomed to casual friction as she’s grown. We knew she would have a 50-50 shot at inheriting the dominant gene for epidermolysis bullosa simplex, so we were ready, and we knew from the experiences of her mother and grandmother that as the years passed and the skin toughened, the blisters would grow less severe.

Comfortingly, we also knew it was impossible for her to inherit the recessive gene forms of EB. Barring breakthroughs in ongoing research, those do not get better. People with dystrophic EB experience blistering on a far more traumatic scale: continuous bandaging throughout life, scarring, often fingers and toes fusing. Many afflicted with it must wear shirts inside out because seams cause enough friction to blister, and there’s also an extremely high risk of an exceptionally aggressive skin cancer prior to age 35. Junctional EB is worse, with blisters on internal organs and in the esophagus frequently leading to death before age one.

But my daughter’s condition would have no impact on her life expectancy, and while foot blisters would delay walking by several months, today, her form of EB simplex in no way restricts her day-to-day life. All of which is to say, we are very blessed and had no fear of this familiar hereditary condition. But I wasn’t fully prepared for the needle.

Lancing blisters is necessary. Single use sterile needle, cotton ball to drain. If the blisters grow large enough and get bumped or scraped, they can burst and leave the raw skin beneath, leading to yet more problems. Lancing and draining gives the developing skin beneath the blister protection; small pain prevents big pain. It’s an unpleasant necessity, and not an easy one to explain to a toddler. Her speech didn’t need to develop too far before she could put together the phrase, “No, mama, no!” One of us would hold the tiny crying child still to prevent sudden movements, and the other used the needle. We are thankful that she had not yet developed long-term memory.

She understands it now. By the time she was three she could tell inquisitive adults, “I have a skin condition called epidermolysis bullosa. It’s not contagious.” Around the same time she could use the cotton ball herself, and not long after, the needle, though we still help her with awkwardly placed “bubbles,” as we’ve always called them. Bubble care is a periodic, rather than daily, undertaking.

I still hate it. Occasionally she’ll let up the pressure on the cotton ball a little early, and I have to remind her to make sure to drain all the fluid. “Deal with the pain longer,” in other words. She hurts, but if I tried to keep her from that hurt, I’d only make it worse. Rationally, I recognize it’s the only sensible thing, just as I know I need to let her run down the sidewalk. An incessant chorus of “be carefuls” might make her timid, but it won’t keep her from ever skinning her knee. And once she’s skinned that knee, I need to encourage her to run again, and at some point, I’ll watch her skin it again. This is the formula for growth and resilience. Memories of feeding her, pushing her stroller, or snuggling her on my chest at 3 AM while she screams for the duration of a Truffaut film (subtitles!) don’t enter into this equation; they can’t. Sometimes she needs to hurt.

Adolescence is coming. The needle was the easy part.

# #

What happened that day

That thing you said

Makes it especially difficult to remember

A time

When you weren’t this other person

That you are now

I have never endured anything traumatic enough to experience any slow-motion effect, but as September slips into October, I wonder if this is what you are. A rental car racing into a head-on collision at the intersection, speeding, and yet time slows just long enough to catch the bobblehead perched upon the dashboard of the Lexus. A childhood house engulfed in flame, thick smoke curling over the white picket fence like syrup over Sunday morning pancakes.

You are an accident in the making. I watch you decompose over time, devolve into nothing but trembling fingers and empty promises. I am young and stupid and I don't know how to fix this, but I try. I have to try.

The gas station liquor burns the back of your throat like a bed of hot coals and every cloud of cigarette smoke chokes me in tandem with your lies.

"I love you."

"Sorry, I can't help it."

"I just need this right now, you know its been a long day."

I laugh and shake my head because it has been a long day, but its always a long day and its been quite a long year watching you break yourself to pieces like this. You aren't getting better. The unspoken truth of it hangs between us like a physical weight.

You're burning yourself out like a match. Soaking your brain cells in vodka and TV static until you can't think straight enough to hurt anymore. I look away because I love you too and you're breaking my heart.

I didn't understand yet, but watching things play out in slow-motion didn't change the outcome. Vivid details burn themselves onto the inside of my eyelids, melting plastic Barbie dolls sprawled across the burning lawn, red traffic lights caught in the polished surface of the Lexus, fingers curled in a white-knuckle grip around the neck of a bottle.

In the end, the house still burns. The car still crashes. You still break yourself to pieces.

September slips into October, and I learn.

What really is hope,

But a frail little thing?

Is it nothing but a false tale,

Waiting to sting?

It lures you in with sugary songs,

Until you are weak at the knees,

Every word uttered from its silver tongue,

Being nothing but a tease.

Reality is harsh,

And bitter and cold,

Auctioning off false pretenses,

Until they are all sold.

Do not trust hope,

With it’s softness and care,

Because you’ll just end up abandoned,

In the bowels of nowhere.

Loyalty is brittle,

Trust is weak,

But low self esteem is strong,

High hopes forever weak.

Do not ask for hope,

Stay away from the lies,

Or the next time you believe yourself happy,

You’ll find it’s nothing but a disguise.

It’s true, you were!

And I was SO slow to arrive at the inescapable truth that we don’t work and that this is not a healthy relationship.

I never meant for things to get so out of control.

I have been so angry at you ..... mostly because it was much easier to focus on your inadequacies, to cast my blame and rage outside of myself.

My anger now replaced by a deep longing and silent sadness.

Letting go sounds so easy in theory but I just couldn’t. I’m sorry I persisted, clinging obsessively with both hands to something that was rotten on the inside.

You were my golden ticket,the means to end my empty void.

I was the broken promise of happiness and forever yours.

You were my favourite mistake and the hardest lesson I ever had to learn.

And perhaps....... the most important lesson?As I have been resurrected deep within and never again shall I be so trivial and wreckless when it comes to matters of the heart.

Not so long ago I thought you set me free, I let you invade without keeping my guard up, I suffered the attack and I endured each strike that grew stronger over time as I struggled to survive. For some reason I can see now it was a battle, but you broke my guard and I still leave myself open to attack for you. What feels like eons ago I thought it was true love, it turns out you didn’t feel the same way about me even though I gave it everything.

The world chained me down and put me on weights to trap me because I was too fast for them in the race. You stopped dead on the tracks, and you cut me loose, we left the race together and I felt nothing after that but gratitude. I decided to pay you back with my eternal love and dedication to serve your every need and want. I still wasn’t good enough for you I suppose. One day a spell of silence struck your lips and you glared at me like I casted it, I tried to manifest a cure but it only empowered that curse, you left me to find the cure on your own. I didn’t understand at first, now I see it clear as day. You never set me free but instead you stole me and called it love, I was too blind to see your little plan. I was the shining diamond that you sought for and you ended up shattering me to make me worthless, yet my pieces have come back together and now I shine in a different light, my value has returned to me and here you are crawling back to collect the treasure. This time I have security that you can’t get past and you think you have remorse. You were just sorry that you were caught.

dear me,

"you were the hardest lesson i ever had to learn"

the biggest, most bitter pill i had to swallow.

that no matter how many gulps of water i drink,

you never seem to go down as smoothly as the others.

you don't want to fall short, but you don't go the extra mile either.

you want to be known, but you keep acting like a stranger.

things aren't going to move if you won't take a step.

fear isn't your friend, and sadness isn't your home.

ego isn't holding you up, it's pulling you down.

you couldn't catch shooting stars because your rope wasn't long enough.

couldn't reach heaven because the tippy toes are in pain.

you shouldn't let things happen to yourself.

you should let yourself make things that happen to you.

i drowned in the river of styx.

i didn't think the heel would be as big as you.

The kisses. The way your body melted with mine. The heat in the room caused by our love. Love. A word that's tossed around so freely. I never should have associated you with that word. You used my love to fill your void, leaving me holding my hands against a hole in my chest. I felt like Alice, drowning in my own tears and sorrow as I tried to forget you.

Days turn to weeks, turn to months, turn to years. I saw light at the end of the dark, cold tunnel. It was warm. The damage you caused was fixed. I found someone who loved me naturally, instead of for desire. Someone took this miserable girl, and turned her into a queen. You may have won the game, but I got my life back. And that's the better prize.

"You were the hardest lesson I ever had to learn..."

You know how the story goes,

Knight in shining armor comes to rescue the Princess locked away in the tower and they are immediately taken with each other. The physical attraction is insurmountable, plus they connect on a spiritual level. Wow, they are just perfect for each other...

Cut to 6 months later...

The Princess is pregnant

The Knight makes the princess quit her job and stop talking to her woodland friends.

The Knight convinces the princess that her family are all evil step mothers and brothers and sisters.

The Princess is isolated and her heir is in danger.

The Princess must go to the midwife 3 times before anyone discovers that the baby did not survive.

The Knight tells the Princess that it is her fault.

The Princess is devastated, having lost her heir and having to take care of her illegitimate child while the knight fights virtual dragons all day.

Now the Princess must also take care of the knight's new steed as well as the step child.

Isolation consumes the Princess and makes her go insane.

The Knight corners the Princess, forcing her to preform her "duty."

The Princess is dead inside.

There is no more light left in her eyes.

When she finally escapes, it is for a short while for she gets sucked back into the vortex

3 more times.

Finally, the Princess gains control with her calculated self preserverance.

But for how long ?

When will the lesson be over for the princess?

When, will she learn?

If, she will learn.