Dejectedly, I grabbed a plastic bowl from the counter and emptied the contents of the blender into the bowl.

It was the usual boring routine; stirring the puree just to double-check there weren't any lumps, measuring out the exact amount using the syringe, pushing that into the measuring cylinder and fitting the long narrow feed-tube.

I sat on my chair, dragging the portable IV stand with me and hung up the cylinder. I really didn't want a stomach full of air, so I unclamped the roller clamp, letting the orange liquid flow through the tube until it overflowed a little into the bowl. Job done, I put the clamp back on.

This was my private time: I made sure the door was firmly closed, before I dragged up my pink crop-top, careful to avoid all the white-gauze bandages around my stomach and limbs. They were all that were keeping my fragile skin in place.

I flipped open the little plastic cap that protected my gastrostomy opening, and fitted a 10ml syringe.

This was the part that I really hated, aspirating the contents of my stomach... This time a clear, yellowish fluid appeared. Just gastric juices, no blood or pus, nothing green, everything was in the right place; no sign of infection.

I've had the opening since birth — Great hey. I've got blisters all over the mucous membranes and down my throat. It's difficult to swallow anything. The condition has a fancy name — dysphagia.

And since I've had this and the gastrostomy from birth I should be used to a life of enteral feeding.

Pushing back the last of the gastric juices, I fitted on the tube for the feed. It was easy, now I knew how to fold the tube to stop the air entering. No kinks — everything was ready.

I set the drip speed and with my arms behind my head, I settled back in my chair for the next 45 minutes of my life... Another fifteen or so once the food was finished, to grind my medication, prepare it in much the same way.

One day I'll do the math — work out how many hours it's robbed me of...

Life was tough; boring, stupid — monotonous... I just wanted to be like everyone else!

But I guess destiny and the Three Moirae had something else planned for me...

"Phoebe!" my mother's scream woke me with a start. The sound echoed through the room, bouncing off the walls.

"Mom?" confused, I tried to sit up and almost fell off the stupid chair.

"Your tube; Phoebe you didn't clamp it off!" She grabbed the line, rolling the clamp to close it.

"I...I must've dozed off..." guilt made me queasy.

"If you've got air in your stomach, you could have serious problems..."

"Alright, Mom," I cut off her lecture mid-sentence. "Please don't fuss. It's just a bit of air."

It took me moments to detach the tube and few more to flush it with water. Then I clamped my gastrostomy Mic-Key tube closed.

"You're too casual with everything, Phoebe. This is serious. Anything could have happened. Do you have any idea how afraid I was when I walked in here...? Do you like upsetting me like that?"

"Okay — I said I'm sorry, Mom," I wrapped my arms around her trying to soothe her.

But the anger was still there. Her cheeks were scarlet and she was talking so fast it was hard to keep up.

It made me want to laugh.

My mom is never like this.

She is beautiful, even though she's in her late thirties — with translucent skin and just the beginning of lines around her eyes. Everyone else thinks she's really strict, with her round glasses and her quiet, careful speech.

But the mother I know is amazing. She's an angel, the most enthusiastic, hyper-excited person, especially when it comes to me... although why, I've never worked it out.

She pulled away, avoiding my gaze.

"It's okay, leave it," she said.

The sloppy, wet kiss I planted on her cheek finally brought a smile to her lips, even if it was a small one.

"Mom, I'm sorry," I whispered. "I shouldn't have said what I did..."

"I know," she wrapped her thin hands tenderly around my fragile form, pulling me to her chest. "I know that you didn't mean it. I guess I would have said that, had I been in your condition. You know how hard it is for me to let you live through that condition over and over again. But since you're growing up, you should actually know what to say and when to say it."

"I understand," I mumbled into her shoulder. "It's just so hard living with EB... I'm fed up with the pain. It hurts to eat, just to talk sometimes. All the sores and blisters are a nightmare. Even walking around the stupid room hurts. I've read about so many people who've fought this, Mom... and some have been real heroes. But that's not me, I'm no hero. I don't think I can fight. Why can't I just accept death..."

"Not there again, Phoebe," she interjected. "Enough of reality and dark thoughts. Give it a rest. I have something we can do together, now that you're full."

"What?" I shrugged.

"What do you do after a party?" she said, gushing like a teenager.

"Ummm, clean up and tidy the mess in the living room?"

"'I know I prayed for a girl who would become mature and understanding, but today you sound about thirty, Phoebe"

"Oh you mean opening my gifts?" I asked, pleased to see her eyes light up with excitement again.

"Definitely — Let's go unwrap your presents."

Edited by lindajonesAuthor

A/N Everything is scientifically correct. This book is actually to provide an awareness through an engaging story.

Glossary: Moirae

They are the most unfeeling and relentless. The Moirae Sisters, also known as Moerae, are the Sisters of Fates in Greek mythology, known as the white-robed personifications of destiny and fate. The Moirae controls the metaphorical thread of life of every mortal, including Gods from birth to death, and such, their powers are feared by the Gods. They are also the agents of their older brother Moros, the god of doom.

Clotho (/ˈkloʊθoʊ/, Greek Κλωθώ [klɔːˈtʰɔː] - "spinner") spun the thread of life from her Distaff onto her Spindle.

Lachesis (/ˈlækɪsɪs/, Greek Λάχεσις [ˈlakʰesis] - "allotter" or drawer of lots) measured the thread of life allotted to each person with her measuring rod.

Atropos (/ˈætrəpɒs/, Greek Ἄτροπος [ˈatropos] - "inexorable" or "inevitable", literally "unturning",[18] sometimes called Aisa) was the cutter of the thread of life. She chose the manner of each person's death; and when their time has come, she cut their life-thread with "her abhorred shears".

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