The Rainbow in the Window
35 days before Abby died, her family brought her to the children’s hospice in a pain crisis. She wanted to stay at home. It was the only place she wanted to be. In her own bed, in her own room. But this morning her head had started to hurt in a new way. Instead of the usual dull pressure she had become used to, the pain came sharp and fast. Her parents called the palliative doctors and gave her the new dose of pain medication as directed. But when Abby couldn’t keep the medicine down, they decided as a family to go in for help. Abby squinted at the light as her mom pushed her wheelchair towards the building. She was having a hard time focusing but she was relieved to see the building looked like a large colorful house and had plenty of windows. If she had to be here, at least she could still have her rainbows.
33 days before Abby died, she took an amazing bath. With the help of the doctors and nurses she had come out the other side of her pain crisis and could no longer stand the way she smelled. Yes she was sick, but she didn’t want to look sick. Her nurse and her health care aide for the day pushed her bed to the room with the big bathtub while her mom followed close behind. Her nurse turned on her favorite music. The health care aide asked how many bubbles she wanted. Abby said, “All of them!” and her mom helped her get undressed. This wasn’t like her bathtub at home. She could stretch her arms and legs out completely and the tension that had been in her neck and shoulders for weeks, ebbed. She could float. She decided it was wonderful. She stayed in the water until her fingers and toes pruned and her mom made her get out.
30 days before Abby died, she made a new rainbow sun catcher with the help of the Child Life Specialist. She still knew how to do it of course but her muscles felt so tired lately. Her parents let her put a rainbow in every window at home. There was nothing she liked more than the seeing the sun shining through the windows in so many colors. It was hard to talk about home, but it also felt good because it was all she could think about. So while she painted she shared how much she missed her big brother, who was at home with her grandparents. And how much she wished she could be with their dog Marty, who usually slept in her room at night.
28 days before Abby died, she started school again. It wasn’t the same as going her to junior high school but at least she knew the teacher. It was the same cheerful lady who had spent time with her when she was in the oncology unit. Abby was glad she could see her in this new house. In weeks past they would have worked on homework and school projects but today, Abby wanted to write letters. Two months ago Abby wrote in her journal every day but now using a pen for even a few minutes was difficult. So with the teacher’s help, Abby found the words for her parents and her brother. They put the letters in colorful envelopes and Abby asked her dad to keep them safe.
27 days before Abby died, she had a headache that ruined her day. It started before lunch while she was playing a board game with her parents and it kept getting worse. They moved her back to her room and her dad noticed that she kept turning her face away from her window. The light was making her headache worse. There was nothing she wanted less than to be stuck in a dark room, but she was too tired to find the words to tell him that. And so, her dad closed the blinds and unknowingly shut out her rainbow. Abby tried not to think about it while she tossed and turned.
26 days before Abby died, her favorite health care aide was working. She spent 40 minutes in Abby’s room giving her the most amazing neck massage. It helped, and Abby whispered, “Thank you.”
24 days before Abby died, they had a family meeting. The doctors, her nurse and the Social Worker were there. Abby liked her too. She made talking about sad things easier. Abby could see that her parent’s shoulders were tense as they all discussed how Abby had been feeling lately. Family meetings had been part of the deal she and her parents made 2 years earlier when they’d received her cancer diagnosis. Abby would always be included and today was no exception. The consensus was, that the best way to manage her pain at this point, was to stay at the hospice. Abby felt the tears come as she realized she would never again sleep in her own room. Her parents held her hands. She cleared her throat and made a request. The room listened closely as her voice was weak.
23 days before Abby died, her family officially moved into the hospice. Her whole family. Abby’s room reminded her of a hotel. Her bedroom door opened into the living area, which had its own small kitchen. Beyond that she could see the door to her parent’s bedroom. Her brother chose to sleep on the fold down bed next to Abby’s and even her beloved Marty was there. The nurses loved Marty immediately and it seemed like everyone in the house came to say hello and give him a pat. That night Abby announced that they were overdue for a family movie night. Even though she didn’t eat much of anything anymore, Abby insisted the popcorn was made and enjoyed. She smiled to herself as she watched her family and the movie started.
20 days before Abby died, her nurse talked to her family about mementos. They decided to make them in the afternoon once Abby had a good nap. They looked at the list of options and had a good chuckle about the ‘lock of hair’ idea. Abby’s hair had grown back a bit since the treatments stopped and she even had faint eyelashes, but unless they wanted to shave her head, there wasn’t much to work with. The handprints were cool. Abby chose all of the colored paper and made sure Marty and his paw prints were included as well. The Child Life Specialist came in to help with the hand molds. It was a bit tricky finding a comfortable way for them all to sit and get their hands in one bucket but somehow, they did it.
18 days before Abby died, she was excited. Her family and the house staff were working their hardest to organize a belated birthday party for her. Her 13th birthday had come and gone in the middle of her last round of radiation, and she had been so tired that they hadn’t done much that day. They told her that this party had no limits. So, she said yes to dancing, decorations, friends – all of it. She just hoped she would feel well enough.
17 days before Abby died, she had a spa day with her mom. Some wonderful volunteers came to the house, and they put a “NO BOYS (EXCEPT MARTY) ALLOWED” sign on the door. Abby felt like a princess as her nails were painted. Then she spent an hour picking out which clothes she would wear to her party the next day.
16 days before Abby died, she wanted to cry. It was the day of her party and she woke up feeling very sick. Her friends weren’t coming until the afternoon, so the doctors and nurses worked closely with her the whole morning to get her nausea under control. By lunch time she felt steady enough to sit up and her dad gave her the special surprise of a professional makeup artist who was there just for her. Once she was changed into her special outfit (she hoped she didn’t get sick on it), her nurse and health care aide moved her to the party room. Abby gasped when they brought her through the door. She had only been in this room once before when the floor to ceiling windows had the blinds down. But today, the blinds were up and all around her were dozens and dozens of rainbow sun catchers. She had no idea how they had made so many, but she had never seen anything so wonderful. For the rest of the afternoon Abby managed to forget her nausea. She laughed and smiled, soaking up every moment with her family and friends. She hoped that the sun would never set so the rainbows could glow forever.
12 days before Abby died, she couldn’t bring herself to eat or drink anything. It rarely felt like she had any breaks between headaches now. After a short bath she remembered feeling her muscles stiffen and then nothing else. She was told she’d had her first seizure. The looks on her parents faces told her it hadn’t been good. Her body was exhausted. The doctors and her nurse met with her family again. A new medication plan was made and this time they said, she would feel like sleeping a lot. Abby looked to her window and winced at the sun. Her parents hugged her as tightly as they dared. She reminded them of her one request. She turned her head away but watched the shadow of the window blinds as they slowly went down.
9 days before Abby died, she lost track of time. Sometimes she would wake up and for a few minutes see her loved ones close by. She caught glimpses of her grandparents, her aunts and uncles. Even her teacher and the oncology team who had seen her through the last 2 years came to see her. Her heart filled with love and then her eyes would close again.
6 days before Abby died, the morning shift staff learned that her breathing was starting to change. The charge nurse used words like “dusky,” “coldness to extremities” and “funeral plan.” A special lamp was placed on a table near the entrance to the house.
1 day before Abby died, her family slept in shifts. They were all determined to be with her when the time came. Marty never left her side.
The day that Abby died, the doctors stayed close by. The family’s favorite nurse was working. Abby’s room was still dark when her brother went to her window and started opening the blinds. Her parents watched as the shadows lifted and the rainbow glowed. “She made us promise,” he said. The last thing Abby felt was the sun warming her tired body. Surrounded by the people who loved her best, she took her last breath.
In the first minutes after Abby died, tears flowed. Her family wept. Her nurse wept. The doctor confirmed a time of death and wept in her office. The health care aides and the unit clerk consoled each other. The cleaning staff and the house chef shared hugs. The office staff spoke in hushed tones. The special lamp at the entrance to the house was turned on.
In the first hour after Abby died, her body was cared for like it was when she was alive. The pumps were turned off and the nurse removed her IV line. Then she called the health care aide into the room, and they worked with her parents to gently wash and re-dress her. The unit clerk organized the special vehicle to take her to the main hospital. Abby had insisted that they do tumor banking to help with cancer research.
Two hours after Abby died, they came to take her. The staff lined up to show their respect and to say their silent goodbyes as she passed. Her parents and her brother walked beside her. They had placed a quilt with rainbows across her but they never covered her face. She could have been sleeping.
Three hours after Abby died, her family was together again. Her grandparents sat with her brother. Her favorite aunt took Marty for a walk. The staff brought in a cart with tea and snacks as the kind Social Worker came to check on them. Her parents worried that they should leave but her nurse insisted there was no rush, and they could stay until they were ready.
Six hours after Abby died, her family had packed all their belongings. They said their thank you’s and hugged the staff. Her dad held her special letters tight as they left through the same door that their daughter had just hours before.
The day after Abby died, her room was cleaned. A condolence card for her family was readied by the unit clerk for staff to sign. Her chart was dismantled. That afternoon, the staff gathered to bless her room. They stood quietly, remembering her spirit and acknowledging her special life. They steadied themselves and readied themselves – not forgetting, but keeping their hearts open for whichever family needed them next.
20 days after Abby died, her room at the hospice became someone else’s room. A small boy snuggled into his mom, unsure about the unfamiliar place. A nice lady came to say that she heard he liked dinosaurs and was it ok if she found him some special dinosaur toys? He nodded shyly and his mom smiled. Then he noticed some light dancing on his wall. He turned his head and smiled at the rainbow in his window.
Stacey Walz was born and raised in Calgary, adjacent to the stunning Rocky Mountains. She considers laughter and time with her family to be most important to her. If she’s not out in the yard with her husband and her son, you can find her at the dog park with their Westie, Norman. She has spent the last eight years as a Unit Clerk in Pediatric Palliative Care, where she has been privileged to witness love at it’s most powerful. The Rainbow in the Window is Stacey’s first short story.
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