Relationships and Raising a Medically Complex Child: Finding Strength Together
When you become a parent to a medically complex child, every part of your world shifts. Your time, energy, and priorities change overnight. What I didn’t fully expect was how much those shifts would ripple out into my relationships, with Josh, my husband, my friends, my family, and even myself.
I want to share a bit about what this journey has looked like for me. This isn’t a story wrapped up with a neat bow, it’s messy and ongoing, just like life. But I’ve learned a lot about how relationships grow, adapt, and sometimes struggle in the face of big challenges.
Marriage: Partnering Through the Storm
Josh and I are partners in every sense of the word, but having a child with a rare disease like Krabbe has tested that partnership in ways I never imagined. There are days when grief sits between us, heavy and unspoken, as we navigate another specialist appointment or make tough decisions about Cassie’s care. There are nights when we collapse into bed too exhausted to talk, let alone connect the way we used to.
But what’s carried us through has been our choice to show up for each other. We’ve learned to lean into the hard conversations, even when they’re uncomfortable. We’ve carved out tiny moments of joy, a shared laugh over coffee, holding hands in the hospital parking lot, or sitting in silence together, just breathing.
One of the most important lessons for us has been letting each other grieve differently. Josh is quieter in his grief, while I tend to need to talk things out. At first, this difference felt like a disconnect. But over time, we’ve learned to honor each other’s needs while still finding ways to meet in the middle.
If I’ve learned anything, it’s that marriage during this journey is less about finding balance and more about building resilience together.
Friendships: Learning Who Stays
Friendships have been complicated. Before Cassie’s diagnosis, I had this wide circle of friends, and I naively assumed they’d all walk this road with me. But when you’re parenting a medically complex child, your world gets smaller in a lot of ways. Some people just don’t know how to show up. And honestly, I’ve had to let go of expecting them to.
The people who have stayed, they’ve been my lifeline. They’re the ones who text me after a hard appointment to ask how I’m holding up, who drop off meals when I’m drowning, and who sit with me in the mess without trying to fix it.
I’ve also had to learn how to let people help. I used to think asking for support meant I was failing, but I’ve realized that true friendship is about allowing people to be there for you, just as much as it is about being there for them.
Family: Redefining Roles
Family dynamics are tricky even under the best of circumstances, but a medical diagnosis can throw everything into sharp relief. Everyone has their own way of processing, or not processing, what’s happening. Some family members have stepped up in ways I never expected, becoming steady rocks of support. Others have struggled to show up, whether because of fear, discomfort, or simply not knowing how.
What’s helped me is trying to extend grace while also setting boundaries. I’ve learned to let go of the need for everyone to understand our reality, because, honestly, unless you’ve lived this, it’s impossible to fully get it. Instead, I focus on appreciating the support they do offer, whether it’s practical help, a kind word, or just being present in their own way.
Loving Myself in the Chaos
Of all the relationships I’ve worked on since Cassie’s diagnosis, the one with myself has been the hardest. It’s so easy to get lost in the constant demands of caregiving and advocacy. For a long time, I felt guilty even thinking about my own needs, as if taking care of myself somehow meant taking something away from Cassie.
But the truth is, I can’t pour from an empty cup. I’m learning (slowly) to find small ways to nurture myself, whether it’s sneaking a few minutes to journal, baking something just for fun, or letting myself cry without judgment. These little acts of self-compassion remind me that I’m not just a caregiver, I’m still me, and I’m worth taking care of too.
Moving Forward
Relationships are never static, and that’s especially true when life throws you into uncharted territory. What I’ve learned is that it’s okay for relationships to shift and change. It’s okay to grieve what was, celebrate what is, and keep working toward what could be.
If you’re reading this and you’re in a similar season, I want you to know you’re not alone. It’s hard, yes. But it’s also filled with moments of deep connection, unexpected grace, and love that stretches and grows in ways you never thought possible.
We’re all just figuring it out as we go. And that’s enough.
