Becoming an Adult Sister’s Caregiver One Family’s Story of Hope

Becoming an Adult Sister’s Caregiver

By Janice Corrado (USA, mum, educator, advocate for diversity)

Tiffany McDowell was a busy wife and mother of three daughters when she received devastating news: Her beloved mother had been diagnosed with terminal breast cancer. Tiffany’s sister Mallory had lived her entire life in her mother’s care, and suddenly her family was left to figure out how to navigate life without her. Though Tiffany had a lot to learn, she was determined to provide the best possible life for Mallory. Tiffany shares what she has learnt along the way and how together she and Mallory created their business, Mallory Paige Designs.

Tiffany McDowell loved her little sister Mallory from the moment she laid eyes on her. “I felt like my parents had brought Mallory home just for me, like she was my special gift after so many years of living with four brothers,” Tiffany recalls. The two girls remained close all through their years at school. Mallory loved to accompany Tiffany as the older sister shopped for clothes, got her hair and nails done, or prepared for special date nights with her boyfriend (now husband) JJ. Even after Tiffany and JJ married and moved into their own home, Tiffany and Mallory would have “girls’ night” at their mom’s house each weekend, where they would fix their favourite snacks, watch their favourite movies, and stay up way too late enjoying each other’s company. “I knew my mom did a lot to help Mallory, but until she was gone and I had to take over, I hadn’t realised how truly difficult that could be.”

Although Tiffany and JJ had always known they would become Mallory’s caregivers, they never expected that it would happen so soon. “Our mom died at the age of fifty-three when Mallory was a senior in high school,” Tiffany says. “Luckily, because we had been close all along, having Mallory move in with us went very smoothly. JJ and our three girls welcomed Mallory with open arms, and Mallory really enjoyed being a part of our household from the start.”

Transition to Adult Services As is the practice in the United States, Mallory remained at her high school in a postgraduate programme until she turned twenty years old. At that point, Tiffany was faced with having to help Mallory navigate the world of adult services. “At our first appointment with the Department of Vocational Rehabilitation, I felt so defeated! I knew nothing about how the system worked, and I wasn’t at all impressed with what was offered for my sister,” Tiffany remembers. Tiffany was determined to provide something better for Mallory. Initially, she enrolled Mallory in a day programme that promised to help her develop employment skills. The programme was so expensive that Mallory had to hand over her entire Social Security Disability Income (SSDI) cheque each month to cover the programme cost. “I honestly wasn’t seeing the progress that I thought Mallory was capable of, and this programme was costing her everything, leaving her no opportunity to save any money,” Tiffany recalls. “That was the moment I realised I needed to educate myself in order to effectively advocate for Mallory to help her achieve a meaningful and fulfilling life.”

Through her research, Tiffany learnt that the State of North Carolina had approved a bill to create the ABLE Access initiative — Achieving a Better Life Experience — which allows adults with disabilities to save up to $15,000 per year in a tax-free account without affecting their SSDI. Fortunately, Tiffany discovered a new adult transition programme nearby called Wild & Free at the ARC of High Point, NC, created specifically for people like Mallory looking to set goals and achieve a fulfilling life experience. Those in the Wild & Free programme meet up to five days a week to work on individual goals based on members’ interests, their skills, and the training required to meet those goals. In addition, programme members develop important life skills that benefit the entire community. “Wild & Free members have created a community garden that provides food, they have chickens who produce eggs, and they are looking forward to the arrival of a new bunny,” Tiffany says. “They also learn about their rights and responsibilities as members of the community and of society, addressing real issues that they will need to understand in order to succeed in the world.” Because the programme is subsidised, the cost is $35 per day, a much more reasonable rate than the ‘adult day care’ programme that had taken Mallory’s entire monthly income. “Without this programme, chances are that Mallory would be forced to live in poverty and without any hope of learning how to navigate society,” Tiffany says. “We are so thankful she is able to be a part of it.”

Creating Mallory Paige Designs Shortly after the disheartening experience at Vocation Rehabilitation Services, Tiffany set her sights on helping Mallory set up a small business she could do at home to keep happy and busy on the weekends. “I thought, ‘Well, I’ve got a business degree and have been in sales my entire career, I know how to establish and market a business. Let’s create a business that Mallory will love!’ So Mallory and I sat and thought about the things she loved to do and what we might work on together.” Tiffany’s faith had always been important in her life, and she spent a great deal of time quietly seeking guidance. “Two words kept coming back to me,” she shares. “‘Inspire’ and ‘Empower.’ One evening, I happened to read

Mallory joined Tiffany and JJ’s family when she was a senior in high school. Tiffany shares, “The girls welcomed Mallory with open arms, and Mallory really enjoyed being a part of our household from the start.”

Facebook: @mallorypaigedesigns TikTok: mallorypaigedesigns (561K followers!) Instagram: @mallorypaigedesigns Website: mallorypaigedesigns.com

one of my favourite Bible verses, ‘If you have faith the size of a mustard seed, you will say to this mountain, “Move from here to there,” and it will move. Nothing will be impossible for you.’ And I knew then what it was that Mallory and I were destined to do. We wouldn’t be selling a product, we would be sharing HOPE. From there, we created the tagline, ‘Moving mountains for adults with disabilities.’ We decided to create bracelets with mustard seed charms that would offer hope to everyone, whether they are battling cancer as our mom did or need faith to face a mountain of their own. And that’s how Mallory Paige Designs was born.” Creating and selling their line of bracelets has led Tiffany and Mallory to share their story of hope with a wider audience than they ever thought possible. “We started by making the bracelets over weekends and selling them locally, and then we discovered the power of social media,” Tiffany says. “Our goal now is to change the way everyone thinks about Down syndrome through our website and our videos. Mallory and I have an amazing, incredible life, and we want everyone to know that it is possible for them to have that too. I sometimes think that maybe there is a fourteen-year-old girl who sees one of our videos or receives one of our bracelets; in ten years’ time, maybe she will learn that she is carrying a baby with Down syndrome, and she’ll think back on our story and realise that anything is possible.” Mallory’s Life Today One area where Tiffany had to do some adjusting in her family’s daily life was in terms of providing a schedule for Mallory that would help her become independent. “Here’s where being a sibling caregiver differs from being a mom,” Tiffany smiles. “I had to structure Mallory’s day so that it provided enough challenge while at the same time allowing Mallory to take responsibility where she could.” Since Tiffany and her husband both work from home, they needed to have some quiet time to devote to their businesses. Based on her observations and interactions with Mallory, Tiffany worked out a daily itinerary which Mallory continues to follow to this day. “It’s been nice to see just how independent Mallory has become,” Tiffany says. “Each evening, she prepares her clothes for the next day and has come up with a system where she has a ‘Monday outfit,’ a ‘Tuesday outfit,’ and so on, so she has a week’s worth of clothes lined up. So her mornings are incredibly easy! Because we know that people with Down syndrome may have certain health concerns such as heart issues and weight gain, Mallory makes sure to eat a healthy breakfast and to pack a really healthy lunch for herself each morning. At home, we incorporate lots of dancing and movement throughout our day, just because it’s fun!”

“If you have faith Mallory also has a boyfriend, Stephen, whom she met through speed datthe size of a mustard ing at a local coffee shop where Stephen worked. They celebrated their one-year seed, nothing will be “dating anniversary” on February 22, impossible for you.” although they had to do so virtually due to Covid-19. “We see each other every night at 7 p.m.,” Mallory says, “on the iPad.” Stephen now has a job as a doorman, and the two plan to marry in the future. “I’m so happy that Mallory has found someone she wants to spend her life with,” Tiffany says. “We could all take advice from Mallory. Although she didn’t meet Stephen until the age of thirty, she never wasted her time on a boy who made her cry. She went from zero to perfection on the first try!” As delighted as Tiffany is to see Mallory and Stephen so happily planning a future together, she knows that this next transition for Mallory will also need to be thought through and planned for. “Now I’m again asking myself, ‘How will we make this work? What happens after the wedding? What resources are out there to help us plan this next stage of Mallory’s life?’” Given their faith and Mallory’s successful transition, the sisters have confidence that great things lie ahead. “We know from our own experience: When you open your heart and share your love, you will continually be amazed at all that life has to offer,” Tiffany says. “‘If you have faith the size of a mustard seed, nothing will be impossible for you.’”