I'm a fixer by trade, both personally and professionally. At work, I design and build furniture. At home, I'm the husband who fixes the lawnmower, the dryer, and the water heater. Most days, the list never ends.

Since having my daughter, Olive, I've learned how to fix wheelchairs, standers, and lifts. I've built ramps, designed an accessible changing table for her room, and modified her bed.

Dad fixes stuff.

But the harsh reality is that there are some things, many things, I can't fix.

• I can't fix brain damage.

• I can't fix Dystonia.

• I can't fix Cerebral Palsy.

• I can't fix how a large part of our society views and treats disabled children like Olive.

• I can't fix broken healthcare and education systems.

• I can't fix the fact that my wife and I rarely get a break from 24-hour caregiving at the same time.

• I can't fix how inaccessible much of the world still is.

• I can't fix how expensive everything Olive needs is.

• I can't fix the fact that some people simply don't, or won't, get it.

As a dad, that's a hard pill to swallow.

The hard part about raising a medically complex child honestly doesn't have much to do with Olive. It took me a long time to come to that realization. Olive is easy. Olive doesn't need fixing. She is perfect. She's a really cool kid with a wicked sense of humor, and she makes me proud every single day.

What's hard is everything that comes with having a disabled child. Most days, we're like any other family. Then something happens, or something is said, that knocks the wind out of you. Recently, it was the delivery of adult-sized diapers. Olive has outgrown the cute pediatric ones. There is no in-between. Holding up a diaper designed to fit a grown adult is like a slap across the face. It reminds you of expectations you once had and the countless adjustments, concessions, and recalibrations you've made along the way, because that's what dads do.

Balancing love and joy with cyclical grief for twelve years running is like walking a tightrope that is actively on fire. Everyone else is admiring the act while I'm focused on keeping my balance and moving forward, fully aware of how high the stakes always are. Things can change on a dime.

I love everything about my daughter, and I will continue fixing every single thing I can for her. I just wish so much of the world around my daughter wasn't so broken. Because the truth is, Olive was never the thing that needed fixing.

The Courageous Parents Network (CPN) seeks to provide parents of medically complex children the courage and confidence to function, thrive and grow, knowing that they are not alone.

Additional Resources:

• To hear from other dads, check out resources from Courageous Parents Network that feature the father’s perspective.

• Courageous Parents Network offers resources on living with grief, learn more about how it can show up during the journey.

Read More from the Ronald McDonald House Resource Link:

• Fatherhood: It Takes a Village

• Find Resources for Grief Support

• Find Resources for Mental Health Support

The Courageous Parents Network (CPN) seeks to provide parents of medically complex children the courage and confidence to function, thrive and grow, knowing that they are not alone. Kelsey shares her story alongside resources from the CPN.

My daughter Zoey was three and a half years old when she became a big sister. Like many parents expecting a second child, I spent my pregnancy thinking about how to help her adjust to sharing our attention with a new baby. What I couldn't prepare for was helping her become the sibling of a child with complex medical needs.

At five days old, her little sister Stella was diagnosed with two rare genetic conditions. She spent 35 days in the NICU before coming home under the care of eleven medical specialists. When Stella finally came home, Zoey’s introduction to sisterhood included learning about oxygen, feeding tubes, and infection control.

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, and lean on available support and resources.

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 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. The Courageous Parent's Network offers a toolkit to help navigate these conversations and early experiences.

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. The Courageous Parent's Network offers resources for coping with 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.

This guide from the Courageous Parent's Network may help as you navigate your unique parenting journey: What Do We Mean When We Say, "Good Parent"? Guide by Courageous Parent Network

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.

Read More from the Ronald McDonald House Resource Link:

• Support for Siblings

• Palliative Care: What is it and Who Needs it?

• Parenting a Child with Special Needs: Diagnosis & Infancy

Becoming a parent is a journey full of milestones but when your baby needs the NICU, that journey can feel overwhelming. You suddenly find yourself navigating monitors, medical terms, and unfamiliar surroundings no parent expects. It’s a lot to take in. The last thing you need to worry about is figuring out how to support your baby’s feeding, motor, communication and sensory development, both in the NICU and after coming home. That’s exactly why Pathways.org is here: to provide trustworthy, expert-approved, easy to understand support so families feel informed and empowered to help their baby’s development.

Who Is Pathways.org?

Pathways.org is a nonprofit organization dedicated to early childhood development that has been trusted by parents and healthcare professionals for over 40 years. Their goal is simple but powerful: help babies reach their full developmental potential for motor, sensory, communication, and feeding by empowering parents with tools, activities, and guidance grounded in research and reviewed by pediatric specialists.

Essential NICU & Preemie Resources on Pathways.org

Whether your baby is still in the NICU or has recently come home, Pathways.org offers free, accessible materials tailored to your family’s situation. Download the Pathways.org app to start tracking Baby’s information.

NICU Support Content

• Guides and brochures specifically for NICU families, offering practical tips for bonding, early development activities, and what to expect after discharge.

• Information about prematurity, including how being born early influences developmental expectations.

• Ideas for play and interaction while in the NICU, such as safe Tummy Time suggestions and bonding activities.

These resources help make sense of the many emotional and developmental questions that come with having a baby who was born preterm or required extra care.

Massage+ 30,10,5: A Simple, Research-Backed Tool for Growth

One of the standout Pathways.org resources for NICU and preemie families is Massage+ 30,10,5, a short massage intervention designed to support your baby’s development and parent-baby connection.

Here’s what you should know:

• What It Is: A focused 15-minute session that includes gentle massage, rocking, and talking all in ways babies love and benefit from.

• Why It Works: This intervention is based on over 40 years of research. It’s also known by healthcare professionals as part of Audio-Tactile-Visual-Vestibular (ATVV) stimulation.

• What It Helps With:

  • Improved sleep and feeding habits

  • Stronger parent confidence and bonding

  • Sensory growth and communication cues recognition

  • Support for motor and sleep regulation

• How to Learn It: Pathways.org offers a course and brochure so parents and caregivers can apply these techniques at home. Use Code: RMHCFree to get course for free.

This practice isn’t meant to replace medical care, but it offers parents an active, loving role in their baby’s development.

Why Milestones Are Different for Preemies — and What That Means for You

When a baby is born early, their corrected age—their age based on the due date, not birth date— is often a more meaningful way to track development. Pathways.org explains how prematurity affects milestones and helps parents set expectations based on adjusted age, which can relieve stress and support healthier development tracking. Learn more about corrected age.

The Pathways.org App — Your On-the-Go Development Partner

One of the most practical tools Pathways.org offers is the Baby Milestones App, designed to support parents daily. This free app is built to:

• Track developmental milestones based on your child’s age.

• Adjust automatically for prematurity, so you see milestones tailored to your preemie’s corrected age.

• Provide therapist-approved activities and games that support motor, sensory, feeding and communication development.

• Offer videos, expert answers, and Tummy Time tracking to help make parenting more intuitive.

Many NICU parents find that having a tool like this helps take the guesswork out of development and gives them confidence especially during the transition from NICU to home.

Quick Links

• Download Pathways.org app

• Access preemie & NICU resources

• Learn Massage+ 30,10,5

• Explore milestone explanations and guides

Since 1975, Canine Companions has provided more than 8,400 service dogs, free of charge, to adults, children and veterans with disabilities. Service dogs are bred to be calm, reliable and affectionate, and assist their partner in completing simple daily tasks at home. The dogs can also serve as a social bridge to the public.

Not only does this type of assistance make the physical life of a child with a disability easier, but it can boost their overall confidence and independence.

Canine Companions' service dogs are trained in more than 45 skills. They can pick up items, open doors and drawers, provide calming pressure across a child's lap or body, assist with developing independent living skills, be integrated into structured therapies, help facilitate social interactions, make the recipient’s physical life easier, and boost confidence, self-sufficiency and responsibility

In addition to service dogs, Canine Companions is proud to provide medical alert dogs to individuals experiencing life-threatening blood sugar fluctuations due to insulin-dependent diabetes. These life-changing partnerships are made possible thanks to our organization merging with Early Alert Canines. 

Training & Matching Service Dogs

Children aged five or older can be placed with service dogs with the support of a facilitator. The facilitator is typically a parent or caregiver who handles and cares for the service dog, encourages a strong bond between the client and the service dog, and is responsible for the customized training needs of the dog.

Each Canine Companions service dog spends the first year-and-a-half with a volunteer puppy raiser who teaches the puppy basic commands and socializes them in public and private settings. Then, the puppy will enter professional training at a Canine Companions regional training center for six to nine months, where he or she will learn advanced skills. Once a dog has completed professional training, he or she is ready to be matched with a person. Matching takes place at one of our regional training centers during a two-week group class. During the class participants learn to manage the service dog’s behavior, direct the dog to respond to cues it has learned and to assume responsibility for maintaining the health and well-being of the dog.

Learn More & Apply

Visit the Canine Companions' webpage to learn more about the process of applying for a service or medical alert dog, or to find a Canine Companions training location near you.