Fairies Live Forever

**THIS STORY CONTAINS MATERIAL RE: HIV/AIDS**

She was mature, albeit 8 years old. Her father died and her mother had left her. It didn’t seem she could handle the commitment of a sick child or even the emotional demands of being a mother at all. A single mother at that. Sure, Shay hadn’t had it easy but what about her daughter?

Grandma Pat was who Jess sat with, as she waited in the packed children’s emergency room.

“Thank god for good healthcare here in Canada,” Pat muttered to Jess.

You could smell the vomit off the child’s sweater collar.

Jess, too weak to play with the toys, nodded and put her head on Grandma’s lap. This wasn’t her first rodeo in a hospital. She’d always been coming to this hospital forever. With IV lines hooked up to her, she’d swoop into the playroom with a smile and willingness to make friends. Sadly, today she was too weak to act like her eager self. She was too sick to act like a child at all.

Today, she had been supposed to start her first day of school. She’d been looking forward to seeing her friends. She hated the feeling of missing out. She didn’t like being different, being the ill one. People were always treating her different.

For the last 3 days, Jess had barely eaten or drank anything, and she’d vomit from coughing so much. Today, she had been dry heaving since there was nothing left to throw up.

As Jess lay with her head in her treasured grandma’s lap, she was left wondering how long she’d spend here, this time.

“Jessica Galiway,” a woman would call on the intercom, “please follow the blue arrows to Patient ward one.”

Ward one. Neither of them needed blue arrows to direct them there. Grandma grabbed her fragile child’s hand in hers. Jess’ hand felt so warm and clammy. She had been running a very high fever, which is what brought them into the ER at 2 am.

Pat analyzed the walls as they walked slowly through the halls. Green, pale green. She hated it. Why wouldn’t hospitals choose a nice, uplifting colour to use on the walls, she’d thought to herself.

Pat was a widowed woman in her late 50’s. She worked only part-time in a blood lab and managed to get a welfare cheque to help offset some cost of caring for her diseased minor. Her wallet was thin, her waist and heart, not so much. The blue, sad eyes on her face told a story of pain. The wrinkles on her forehead and frown lines were deep. Her only son had died, and Jess was her only grandchild. From doing her hair everyday to playing at the park, Grandma did everything she could to make Jess happy. The bond was so strong, it could never be broken. Jess was her baby, and it was left to her, forcefully, to make sure she did everything she could to keep Jess safe.

There was no understanding how Shay could just leave her child. Pat figured she’d ‘let her go’ emotionally, long before she actually left. For Jess wasn’t supposed to live to see her first birthday. Next, she wasn’t supposed to make it to see five. Yet, she beat the odds. At six years old, Shay dropped Jess off at Grandma’s for a sleepover and Jess never went home because Shay never came back. She’d call every six months or so and send a card now and then but that was it.

They were aware that once they made it to this waiting area of ward one, it wouldn’t be long before they would get a bed and eventually see a doctor. It was 4 am and Pat was exhausted. She’d never let Jess know though.

“Let’s grab the couch seat, honey, then you can lay down.” Grandma suggested as she moved toward it.

Jess had sat beside her and decided to look around. Her head felt like it was going to explode. The intracranial pressure was way too high.

She was trying to focus on the fairies painted on the wall. She never noticed one of the fairies was pointing her magic wand at a rabbit in a hat.

“I want to be a fairy grandma. Fairies live forever. I want to take away people’s troubles and sicknesses. Wouldn’t it be nice to make the world a sweeter place? I could use magic!” Jess exclaimed with the most energy she had used all day.

“Oh honey, wouldn’t that be beautiful. I wish I was a fairy so I could take away your sickness, love. Why don’t you lay down?!” Grandma whispered, holding back tears. She had to be tough. She just had to find a way to hold it together for her grandbaby.

“Jessica Galiway, bed four,” the voice behind the intercom instructed.

Grandma stood up again, grabbing the two bags and helping her most precious cargo up. Slowly, they walked hand-in-hand to bed four. Grandma lifted the young girl onto the bed and removed her shoes. She had no socks under, which in any other situation would have been unacceptable but today was excused. After she placed her shoes aside, along with the bags, Pat grabbed a seat on a chair next to the bed.

She was looking at Jessica now. She hadn’t noticed just how much the little girl was sweating. How come she hadn’t noticed it in her hair? The blond curls were a disorganized mess, since she’d been sweating so excessively. Her pale face had blue sunken-in eyes and rosy cheeks. Grandma was taking in just how sick she looked now and was fighting the tears back again. Jessica’s lips were pasty. She was a skinny girl, almost every bone had definition but today, there was even more definition. Grandma gulped. She didn’t have any good feelings about this but had to remain strong.

With that, she partly whispered and whimpered, “Honey, why don’t I pet your head and tell you a story. I’ll tell you a story about the fairies I know. From a far away land.”

Jess gave a small nod and forced a smile. She closed her eyes and listened with intent to her grandma’s voice.

“The fairies create a beautiful world for themselves out of magic dust. They have beautiful castles that are so magical and so small, you’ll never see it but if you close your eyes and ask, sometimes they’ll show it to you. Lady fairy is a beautiful fairy that introduced herself to me. She has beautiful, long, golden hair. It looks like it’s made of diamond tinsel, sparkling with every shake of her mane. Her skin is so flawless and smooth, her green eyes have a small amount of purple and silver eye shadow on her upper eyelid and lower line. Her eyes are big, and beautiful. Her lips are bright red. She loves her makeup…” Grandma loves telling stories.

“I love makeup.” Jess would say interested.

Grandma continued, “Her complexion is pale, you can almost see through her, like a ghost. I think that’s the magic. She had on the coolest outfit. Black platform boots that go to her knees. She had a pair of ripped jeans and a crop top! Can you believe it?!”

Jess chuckled.

“She invited me into her castle. She wanted me to see how some of the magic works and what she can do with it. I took her up on that offer immediately." Grandma stopped, as she noticed Jess drifting to sleep.

Pat had an opportunity at 5 minutes of shut eye before the doctor walked in.

“Hi, I’m Dr. Myles. We have Jess here today. I have her labs from last month here. I am seeing a very high viral load... 75,000 copies. Her CD4 is also not great.”

Grandma was frowning. She already knew this. She had an agenda where she kept all her baby’s weights and important lab numbers from every month’s appointments.

“We’ll get more labs now, and an x-ray. We will connect her to some fluids and get her hydrated. The nurses will come in and take some vitals, listen to her chest and get a mucous swab. I’ll see you soon Ms. Galiway, we’ll figure out what’s going on with Jessica,” the doctor stated as he left the room.

Pat couldn’t help but admire him. He seemed so gentle. He was young, maybe 25. With slender legs and a torso that extended longer than average, he must have been about 6’2. The height of her son, she thought. He had green eyes and a remarkable smile. The kind of smile that makes you take a second look.

Within 10 minutes of him leaving the room, two young nurses came in to get Jessica set up. They started by reiterating what the doctor had planned and touched Jess’ shoulder gently to bring her into conscious state.

“Hi Jessica, I’m Amy and this is Nora. We hear you aren’t feeling too well. We have a nice cold cup of water you can help yourself to. We need to take your blood pressure, get a temperature on you. Blood work will also need to be taken, at that time we will put in an IV and give you some fluids through your blood that will help you feel better. I’d also like you to take this Tylenol, please.”

Jess struggled but sat up. She knew the protocol and lacked the energy to make the usual protest. She put out her tiny arm, as Nora wrapped the small cuff around her. She didn’t even need to be told to open her mouth, so her temperature could be taken. She had no motivation to fight the swab.

“You’re a pro,” Amy complimented.

Jessica smiled. She liked Amy. Amy’s blond hair reminded her of her own. Jess thought she might help people someday. Maybe she’d be a nurse.

“Thank you, you can put the IV in now. I’m ready. And I don’t like when they count down.” Jess said softly.

“Alright darling, you’re the boss!” Stated Nora with only compassion. Her heart just ached since she started the job here 3 months ago.

Pat noticed something about her granddaughter as the nurses worked on her. Something that she hadn’t taken note of before that second. She was noticing her precious baby looked as if she didn’t want to fight her illness anymore.

“Okay Ms. Galiway, the doctor will be in to talk with you shortly.” Nora said as they left the room.

As much as Grandma Pat needed to sleep, there was no way she could shut her eyes. She didn’t need to be a doctor to know her grandbaby still had an elevating high fever and a very low blood pressure. Instead, she just sat there in silence, as Jess drifted back to sleep.

Dr. Myles walked in, this time there was no smile, “Ms. Galiway, Jessica has a very high fever, as you know. And it’s continuing to grow. We’re seeing a lot of congestion in the lungs. She most definitely has pneumonia again. We will be admitting her now and running more labs. You will be heading to the 4th floor.”

Another man walks in before Grandma could respond. She knew he was the transporter that would bring them up, based on his scrubs.

“I’m sorry we don’t have better news.” The tall Dr. Myles said whilst patting her shoulder.

Grandma couldn’t help but tear up. She’d been so brave and held it in for long enough. Now she would cry quietly, as she followed the porter and her grandbaby’s bed.

They were immediately taken up, where a new bed was waiting. Jessica started to cry as she tried standing to change beds. The intracranial pressure was unbearable now and she was back to dry heaving. The Tylenol seemed to be doing nothing. She needed something stronger.

Up here, the chairs turned into beds so that caregivers could stay more comfortably with their loved ones. Grandma was familiar with how they operated. She’d been in the room beside this one before.

Pat grabbed her and lay beside her in the patient’s bed. She’d always wished she could take her pain.

“Hi Pat,” it was Dr. Lanny, whom she knew very well, “Jess is not doing well, huh?”

The doctor and grandma spoke about the symptoms and how long they’d been going on for. As Pat spoke to Lanny, she was petting her baby’s hair. She knew Jess was going in and out of sleep, between the coughing. She looked horrible and had absolutely no energy.

“Things aren’t looking too great, Pat. Her viral load today has jumped up very high. It’s raising in short periods of time and that concerns me, as she might be developing resistance to her drugs. It’s 150,000 copies now. Her CD4 is 25. We’ve confirmed she has pneumonia and suspect brain swelling. I don’t think the daily and monthly treatments are working anymore. I will keep running some tests with the blood we took downstairs. We’ll also order more imaging tests,” Lanny trailed off... Sometimes she hated her job. “We’re running out of medications, Pat. We’re trying to figure out a plan.”

Lanny was the doctor’s first name. She liked to use it, since it seemed to make parents and kids alike, feel more comfortable. She had been working with Jessica since Jess, her dad and Shay were diagnosed with AIDS, back in 1983. Jess was one year old at that time. Unfortunately, when dealing with AIDS, the outcomes were not often great.

Two more hours later, some of the results came back and Dr. Lanny would be the one to report the awful news to the older woman. Lanny and Grandma moved their conversation to the hall, so Jess didn’t need to hear to sorrow-filled news.

“Pat, it’s not good. From the MRI and CT scans, we’ve confirmed there is brain swelling. She appears to be slipping in and out of consciousness due to the high fevers. We have also confirmed she is in septic shock. Unfortunately, we believe her best shot at a chance to recover from this would be to give her body a rest. We would do this by putting her into a medicated coma. This is done by delivering medication that will take her to and remain in an unconscious state, until we can hopefully reverse it. She won’t feel any pain.” After wiping a tear, she quickly composed herself. “It would be ideal to start as soon as possible, we just need your...We need your consent. I know this is difficult.”

“Oh my god,” grandma let out a cry. There was no way she could hold in her sadness. “My heart is just broken. My poor baby, I, I…”, she was blowing her nose now.

“I’m so sorry, Pat, Jess has been through so much already in her short life. I know that you love her and I know this is hard. I’m going to call the grief counsellor to come see you. It really is best we get started as soon as possible… Do we have your permission, Pat?” Lanny extended the clipboard in Pat’s direction.

Crying uncontrollably, the defeated woman obliged.

“Go say some words to her Pat, before we begin,” the doctor directed her in while touching her back. She knew Jess and Pat only had each other.

Grandma wiped her tears and gained composition before getting to the sickly child’s bedside. She pulled up a chair and held the small-sized hand.

“Hi baby,” she began. “I love you so much. You’re so brave. The strongest person that I know. Heck, that we all know.”

“Grandma, I’m so tired. I love you too, more than fairies!” The young lady said shakily and weakly. “Can you tell me more about your?”

“Absolutely baby, where were we? Oh yes, suddenly, the castle was life size and a lot less see-through. Lady walked up the narrowing steps and I was following closely behind. Lady used the door knocker attached to the sparkly purple door, to knock twice. It opened and the cutest little creature appeared named gadget. He was like a miniature black fairy-poodle! So friendly and so cute.”” she tried, with enthusiasm. “When I got in the front door, I noticed dolphins painted on the circular walls.”

She noticed Jess was out again and kissed her on the forehead before stepping out of the room to breakdown.

“You will have to wait here, Pat. We’ll call you in shortly.”

Pat wanted to be there with her baby. So badly, she wanted to hold her. Instead, she just wept.

---

It’d been days since the doctor’s put Pat’s beautiful granddaughter into a coma. She hadn’t been well enough to reverse it, though they had thought about waking her up long enough to check for neuro-deficits.

Grandma Pat sat beside her bed as much as possible, leaving only at night. Soon though, she would need to go back to work.

Several days in, Grandma received the bloodwork results for medication resistance, only to find out she was resistant to most current HIV drugs. But, she believed in science and maintained faith that things are forever changing in medicine. Hopefully it will change in time… she pondered.

Some days Grandma believed Jess would be ok and move on from this, while some days she experienced a gut-wrenching feeling that this would be the finale. Sometimes she’d be thankful for the extra time she had and sometimes she would feel angry at the world for her baby’s suffering at all.

She continued to tell stories of fairies, for she hoped Jess could hear. Maybe there’s fairy magic somewhere and if so, she hoped and asked for the fairies to use it.

Take me and save her, she’d often bargain with herself.

For now, she’d just have to wait. And pray.