The Avant family may face unique challenges, but their days are filled with love, resilience, and a sense of togetherness that shines through everything they do. Amanda and Mike are the proud parents of three children: Liam, Ruby, and Tate.
Ruby, 7, lives with Rett Syndrome, a rare genetic disorder that affects her ability to walk, talk, and eat on her own. Yet despite these challenges, Ruby is thriving in her own way. At almost two-years-old, Tate doesn’t have an official diagnosis yet, but he’s already undergone multiple surgeries, uses a feeding tube, and requires a catheter. Still, his energy and zest for life are unstoppable.
For the Avant family, every day is filled with the care and support Ruby and Tate need, thanks to a structured routine and a strong support system that includes their dedicated nurses, Mary and Christi.
Ruby's Day: School, Care, and Play
Each morning starts early for the Avant household. Mike and Amanda sends their two older kids, Ruby and Liam, off to school, making sure Ruby’s feeding tube is properly in place and that she has everything she needs for the day. Ruby has a 1:1 aide to help her in school, and while she enjoys her art and music classes, she’s not too fond of math. Ruby participates in both general and special education classes. Her day is a mix of learning and fun, with the support she needs to thrive.
After school, one of Ruby’s favorite moments is the bus ride home. She absolutely loves the bus, and when she arrives, Mary is there to greet her. Ruby’s afternoons are filled with care routines—medications, breathing treatments like her percussion vest, and therapies that help her stay healthy and comfortable.
Despite all of the care she requires, Ruby’s day isn’t all about medical tasks. She loves watching TV, playing with her dolls, and—perhaps most of all—spending time with Mary. Ruby has a special way of connecting with her nurse, often ready with a picture she’s colored to give to her, and she loves their playtime so much that she’s been known to shoo her mom away with a firm, “Not you.”
Tate’s Day: Energy and Care
Meanwhile, Tate is a ball of energy at home. It would be difficult to get Tate into a daycare with the higher level of care he needs. He’s had multiple surgeries—heart surgery, bladder surgery, and more—but you’d never know it from the way he runs around the house. Christi, one of the family’s nurses, comes over to help a couple of days a week, making sure Tate gets the care he needs while also setting up everything for when she’s gone. She prepares meals, cleans up, and queues up the next doses of medicine, all while managing Tate’s catheter and feeding tube with ease.
Tate’s genetic condition is still a bit of a mystery, but one thing is for certain—he doesn’t let anything slow him down. His infectious energy is a bright spot in the Avant household, and his family works together to make sure he gets the care and attention he needs, all while allowing him to just be the active, joyful child he is.
A Team Effort: How Tendercare Supports the Avant Family
Thanks to Tendercare’s Structured Family Caregiving program, Amanda, a former hospital social worker, is able to stay home and provide care for her children. With the support of Mary and Christi, Amanda can juggle Ruby and Tate’s medical needs while still keeping their household running smoothly. Both nurses play a vital role in the family’s day-to-day life, offering not just medical support but also emotional comfort and peace of mind.
For Ruby, communication can be a challenge, but her family has found creative ways to give her agency. They use a yes-no board and printed cards to let Ruby make decisions about her day, like choosing what TV show to watch or what music to listen to. This simple system empowers Ruby, giving her a voice in her care and a sense of independence in a world that can sometimes feel overwhelming.
Resilience and Joy in the Everyday
Life for the Avant family isn’t easy, but it’s filled with moments of joy and connection that make the hard days worth it. Whether it’s Ruby’s excitement for her favorite school activities or Tate’s boundless energy, these kids bring light and love into every corner of their home.
The routine may be demanding, but it’s balanced with laughter, play, and a deep sense of togetherness that keeps the family strong. Amanda, Mike, Liam, Ruby, and Tate—along with their dedicated nurses—show us what it means to face life’s challenges head-on, with courage, compassion, and an unwavering commitment to each other.
The Avant family’s story is one of resilience, love, and the power of support. With Tendercare by their side, they continue to thrive, finding joy and strength in the everyday moments that matter most.
Key Takeaways for Families of Medically Complex Children:
- Empowering children with communication tools like yes-no boards or visual cards can help them make choices and feel more independent, even when verbal communication is a challenge.
- Respite for caregivers is crucial. Having a professional nurse or caregiver as part of your team provides relief and support, ensuring that parents can take time for themselves to recharge.
- Celebrate small moments of joy. Whether it’s a favorite activity, a successful therapy session, or just watching your child’s excitement for their favorite show, those moments help sustain and uplift families during challenging times.
Join the Tendercare Family
If you’re interested in learning more about how Tendercare can support your family, contact us today to explore our personalized care options.
