Support, Grace and Showing Up When a Child is Medically Complex

They say it takes a village to raise a child. When you have “typical” child, you can often get by with a very small village. But when you receive the news that your child will be medically complex, you feel deeply alone. What you don’t see- at least not right away- is the village that already surrounds you.

I remember clearly the moment I lost sight of my village.

The day after Baby L’s diagnosis, this started moving fast. Ryan had offered to go into the NICU with me that morning, but I was sure I would be ok. I walked into her room eager to pick her up, to just hold her. Instead, the nurse looked up and said, “Oh good – the doctors have been waiting to talk to you.”

What followed felt like a whirlwind. Doctors and nurses filled the room, each one needing consent forms signed to test for additional conditions that can accompany a CCHS diagnosis. Everything was urgent. Everything felt heavy.

That day is still hazy in my memory. I remember one incredibly kind doctor explaining the need to test the nerve endings in Lillian’s colon to rule out Hirschprung’s disease. It was something they could perform in her room, but for obvious reasons, I couldn’t stay with her.

I went to the waiting room. I know at least one other doctor stopped to talk to me, but I can’t remember about what or why. What I do remember is sitting there thinking, What just happened? What did I just sign? Why did I sign it?

So I called Ryan. Crying, I told him I was wrong – I couldn’t do today alone. I begged him to come be with me. From what I remember, he told his boss “I have to go be with Katie and L,” and he left work.

At this time, this felt like desperation. Looking back, it was a small glimpse of a growing village. Ryan’s work was – and still is- incredibly accommodating, giving him the flexibility to be present when we need him, even when that time can’t be scheduled in advance.

Once the diagnosis was official, our hospital became its own kind of village. Over the course of that day, specialists began to appear one by one, not all at once, not urgently, but intentionally. They introduced themselves, explained their toles and let us know we’d be seeing them again, mostly outside these hospital walls. Pulmonology. Gastroenterology. Genetics. People who already knew our daughter’s name and story before we ever learned theirs.

At the time, it felt overwhelming – a reminder of just how much life was about to change. Looking back, I see it differently. These weren’t strangers bringing bad news. They were people stepping forward to help carry it with us. building a medical village around our family that would walk along us long after the NICU days were over.

At first, your village may look like only medical professionals. Doctors, nurses, therapists – people teaching you how to help your baby, how to advocate, how to function inside this new reality. But what you don’t yet see is the village waiting quietly in the background. Other moms, dads, grandparents – people who have walked this road before and are eager to answer your questions. They sit in the shadows, knowing everything feels overwhelming. They want to hold your hand, offer their knowledge, and help carry the weight – but they also understand that some of this learning requires you to find your footing on your own.

Another part of our village came from places I never expected. Early on, I was given the contact information for Mollee, a mom who has CCHS herself. Just about six months before L was born she had welcomed a baby with the same diagnosis. She became a lifeline. I could message her the questions I didn’t even know how to ask yet – the scary ones, the practical ones, the ones that felt to heavy to say out loud. She answered from a place of lived experience, not theory. She knew the language, the fear, and the hope, all tangled together.

I still message her often to better understand how certain things might feel for L. As someone who lives with a tracheostomy and everything that comes with it, she has given me invaluable insight- not just medically, but emotionally. She helps me imagine L’s future with honesty and hope, grounded in real life.

Through her, and later on our own, we found an online community – a Facebook group made up of families from all over the world walking this same road. Different countries, different hospitals, different systems, but the dame shared understanding. It was comforting to see names and faces of people whose lives looked like ours- families years ahead of us and other just beginning. It reminded me that while our diagnosis felt rare and isolating, we were not alone.

As time went on, that community grew smaller and more intimate. A chat was created for moms whose babies were all around the same age. We celebrate milestones that might seem small to others but feel monumental to us. We ask questions at all hours of the day and night. We grieve setbacks together. We hold space for each other in moments both big and small. Even from behind screens, these women became part of my village- proof that support doesn’t always look like proximity, but always looks like understanding.

Not every part of the village knows how to show up right away. sometimes support comes from proximity rather than understanding -from people who love you deeply but have never lived inside this kind of fear. They want to help but, but they struggle to find the right words. Empathy can feel clumsy when it hasn’t been shaped by experience, and sympathy – even when well-intended- can land in ways that feel heavy or misplaced.

Its hard to know what to say when you haven’t lived it yourself. And its hard to hear words meant to comfort when you’re carrying something that feels impossible to explain. This doesn’t mean the love isn’t real- only that learning how to support a medically complex family takes time, patience, and grace on both sides.

Sometimes, no words are needed. I remember deeply wishing people would stop asking me how L was doing. She had an entire medical team taking care of her – but I didn’t, I needed people to check on me. While our village was forming, there was a lot of grace given, and sometimes a message thread had to be silenced until I was ready to open them again. Sometimes that only took a minute. Other times it was days or weeks because I just wasn’t ready.

Prayers were deeply appreciated, but I also had to learn not to roll my eyes or feel frustrated when someone would say, “We’re praying she’s healed.” The reality was that healing wasn’t going to look like that. What we needed most was to learn how to live now.

Your village of close family and friends surrounds you with love – with prayers, meals, a willingness to learn, and a readiness to step and care for your miracle. While you may feel alone, one day you will look back and see just how supported you were. There are people waiting to carry some of that load with you.

There is also a village of community members – people willing to learn to share your words, to raise awareness, and sometimes to help fund research that will make life better for children like yours. As the fog of diagnosis begins to lift, you will start to see your village more clearly – its knowledge, its depth, and it’s love.

It’s there. I promise. In imperfect ways, with a lot of grace, the village shows up.

And if you can’t see it yet, reach out. I’ll be part of your village.

Here with you,

Katie