For parents & caregivers
You deserve support, too. Ask your care team or family network about respite, care coordination, and help that fits your family.
The Rarely Ordinary Rogers
Our family’s story, from the beginning.
We are a close family who have always loved hard, laughed hard, and made memories together. Our life changed when we learned that Ailyn would be born with serious congenital heart defects. Before she arrived, we began to understand that our family’s path would include medical uncertainty and a lot of waiting.
We share this story in our own words, with love for each of our children and respect for what every family member has carried.
Before Ailyn arrived
A diagnosis changed the shape of our days.
During pregnancy, we learned that Ailyn had severe congenital heart defects. What followed brought specialist appointments, uncertainty, and a long hospital journey. We learned to take life one update, one procedure, and one day at a time.
Every family’s experience is different. We share ours to help people understand how a child’s complex medical needs can reshape family routines, relationships, and hopes.
Ailyn’s early days
Seven months of hope, one day at a time.
Ailyn was born with severe congenital heart defects and spent seven months in the cardiac intensive care unit. During that time, our family stayed close in a small room at the Ronald McDonald House in Wauwatosa. Her siblings gave up weekends, sitting quietly in a CICU room and wondering if they would get to bring their little sister home.
After seven months, Ailyn finally came home. We were elated. That joy lives alongside the strain, fear, and uncertainty we experienced during those months.
Life after the CICU
Coming home was a beginning, not an ending.
Bringing Ailyn home after seven months was a joy we had waited and prayed for. It also marked a new chapter in learning what family life looks like when a child’s health needs remain part of everyday decisions.
For us, caregiving has affected every fiber of family life: how we plan, where our attention goes, and how we try to make space for each child. We are still a family that loves hard and laughs hard, even when life asks more of us than we expected.
The years we hold close
Aaron, in the middle of life.
A few family snapshots of Aaron, remembered with love.
A family is a system, too
When a child needs complex care, every part of family life feels it.
Appointments, hospital stays, therapies, care coordination, and constant concern can touch every fiber of family life. Parents may be stretched between caring for a child with intensive needs and caring for everyone else. Siblings can be proud, loving, frightened, frustrated, or lonely, sometimes all at once. Their needs can be easy to miss when the family is focused on getting through the next urgent day.
This is not about blame. It is an invitation to notice every person in the family, make room for honest conversations, and ask siblings what support would help them feel seen.
For siblings
Make individual time where possible, invite questions, and let children know that complicated feelings are welcome.
For friends & community
Offer specific, practical help and remember that siblings and caregivers may need care long after a hospital stay ends.
Our family, still together
The memories matter. So does making room for what comes next.
We remember the years when the six of us traveled together at least once a year, and all the fun memories we made. Our family has also faced deep grief. Aaron, our oldest, died by suicide at age 20. After a brain injury, he lived with dementia and could not live independently. We miss him, and we hold close his warmth, his empathy, and our time as a family.
The Rarely Ordinary Rogers is a story of love and laughter alongside caregiving, uncertainty, and loss. We hope sharing it helps another family feel less alone.
Resources to explore
You don’t have to figure it out alone.
These organizations offer information and family-to-family or sibling support. We’re sharing them as starting points, not as a substitute for individual medical or mental health advice.
Family Voices
Family-centered information and support for children and youth with special health care needs.
Sibling Support Project
Resources and peer support focused on siblings of people with disabilities or health needs.
Sibshops
Learn about peer-support workshops for siblings of children with special health or developmental needs.
Come along with us
The Rarely Ordinary Rogers, in real life.
On the Vlog & Blog page, Alexa shares the ongoing parts of family life: medically complex parenting, raising six children, makeup artistry, moving into a new home, and the ordinary and not-so-ordinary days in between.
Visit the Vlog & BlogStories we hope to tell
Big feelings deserve words children can understand.
We’re exploring children’s books and family resources about being the sibling of a medically complex child, being the sibling of someone who has died, and talking with young children about difficult topics. These ideas are in development; we’ll share more as they take shape.
This page shares personal experience and general resources. It is not medical advice or a substitute for guidance from your child’s clinicians.