Mothering Them Both: A Parent’s Perspective on Showing Up for Siblings of Medically Complex Children
My name is Kelsey, and I am a mother to two incredible daughters.
Like many parents, my journey into motherhood began with learning how to feed, soothe, and care for a newborn, then navigating the joys and challenges of raising an opinionated toddler. When I became pregnant with my second daughter, I prepared as best I could to help my oldest, Zoey, adjust to becoming a big sister.
What I didn’t, and couldn’t, prepare for was how to help Zoey share her parents with a sister who would need far more than a typical sibling.
Zoey was three and a half when Stella was born. At just five days old, Stella was diagnosed with two rare genetic conditions. She spent 35 days in the NICU and came home with the care of eleven medical specialists. Because this was in 2021, during COVID restrictions, Zoey first met her sister over FaceTime and spent more time apart from us than together in those early weeks.
When Stella finally came home, Zoey’s introduction to sisterhood included learning about oxygen, feeding tubes, and infection control, all at just three years old.
Supporting a Sibling Through Complexity
Caring for a sibling of a child with a serious medical condition isn’t something most parents feel prepared for. What helped us most was keeping things simple, honest, and centered on Zoey’s experience.
We learned to:
Be honest, even when it was hard
Use simple, age-appropriate language
Follow Zoey’s lead in conversations and emotions
Lean on available support and resources
Explaining Stella’s medical needs to a young child felt overwhelming at first. But we found that simple explanations worked best.
We talked about how our bodies have “blueprints,” and that Stella’s worked differently. Zoey understood that everyone learns and grows in their own way, Stella included. Stella not walking, talking, or eating the same way wasn’t “bad”, it just was.
Her questions were direct, and our answers were simple:
“Why can’t Stella eat this cookie?”
“Because her tummy works differently, and she’s still learning how to swallow. Her tube helps give her what she needs.”
“Okay. Can we do a puzzle now?”
Children process information in small, manageable pieces and then move forward. That’s something we learned to respect.
Letting Your Child Lead
One of the most valuable lessons we learned was to follow Zoey’s lead, not just in what she said, but in how she behaved.
When things became especially heavy, like preparing for Stella’s death, we approached those conversations the same way: with honesty, simple language, and openness to Zoey’s cues.
The days leading up to Stella’s passing were spent together at her bedside, talking, creating art, and being present as a family. Zoey would shift between conversations about unicorns and questions about death. That emotional back-and-forth was how she processed and how she protected herself from becoming overwhelmed.
When it came time to say goodbye, we gave Zoey choices and honored them. She chose to be present. After Stella passed, she wanted to hold her and spend time with her body and we allowed that, for as long as she needed.
It wasn’t easy. At times, it felt unnatural and deeply painful. But it was what Zoey needed to understand, grieve, and begin to process her loss.
You Don’t Have to Do This Alone
We could not have navigated this journey without support.
Child Life Specialists, nurses, physicians, and psychologists helped guide us in supporting Zoey. They provided insight into how children understand illness, death, and grief at different developmental stages. They encouraged us to include Zoey in Stella’s care, to invite her questions, and to create space for her experience as a sibling.
They also reminded us of something important: You don’t have to have all the answers to be a good parent. Showing up, being honest, and asking for help when you need it is enough.
The Lasting Impact of Sibling Love
Stella passed away just before her second birthday. In their two years together, Zoey learned more than we could have ever imagined about love, sacrifice, resilience, and connection.
Today, Zoey is eight years old. She loves school, sports, drama, and her friends. Many of her friends never met Stella but they know her through Zoey’s stories, the photos in our home, and the way Zoey carries her forward.
When Zoey sees white butterflies, unicorns, or heart shapes in nature, she believes Stella is saying hello.
I see in Zoey a deep empathy and emotional awareness that goes beyond her years. She is curious, inclusive, and eager to help others. Being Stella’s sister has shaped who she is and always will.
There are many things I continue to learn as Zoey’s mom. But one thing I feel certain about is this:
We walked alongside her, honestly, openly, and with support as she became a sister, and as she experienced loss.
And in doing so, we helped her hold on to the most important thing of all: her connection to Stella.
Additional Resources and Support
Support for Siblings - In this guide you will find resources designed to help siblings of children with medical and other special needs understand and cope with their new circumstances.
Courageous Parents Network - mission to orient, equip and empower families and others caring for a child with a serious medical condition.
After the Injury or Illness: Tips for Siblings - worksheet is designed to help children cope when their sibling is experiencing an illness or injury.
Kelsey lives in Tacoma, Washington with her husband, daughter Zoey, and dog Lincoln Beans. Kelsey is a mother to two, an RN, and Nursing Professor at Pacific Lutheran University. Her younger daughter, Stella, was born with two rare chromosomal abnormalities: Ring 9 Syndrome and a microduplication on chromosome 17. Stella lived with a variety of complex medical conditions and died right before her second birthday. With fourteen years of experience as a nurse, many of that working with palliative care, Kelsey is committed to bridging her experiences as Stella’s mom and caregiver and as a healthcare provider through her work as a Parent Champion for Courageous Parents Network. Through this role, Kelsey aims to support and empower other families who have or are currently providing care for medically complex children and to advocate for palliative minded care in honor and memory of Stella.