Holding This Together

In the midst of navigating systems, advocacy, and everything that comes with it, I’ve come to realize how much this experience was never meant to be held alone.

There have been moments in this process where I’ve felt like I was carrying more than I knew how to hold — not just the logistics, but the constant responsibility of making sure everything continues to move forward.

And what I’ve come to understand is that while the systems can feel heavy, it’s the people who help hold you within it that make the difference.

There are a few people who have become anchors for me in this process.

Some within the systems we’ve been navigating, and others within our everyday life — each showing up in ways that have helped me carry what at times has felt like too much.

The One Who Stepped In

One of those people has been a member of our clinical team who stepped in at a time when I felt like I was holding everything on my own. She recognized where things were falling through the cracks and helped bring clarity to a process that had felt overwhelming.

More than that, she became someone I could be honest with — someone who could hold both the logistics and the weight of what this experience was asking of me.

The One Who Shows Up Everyday

Our daughter’s aide is someone who goes far beyond what is expected.

The way she shows up each day — with care, attentiveness, and a deep commitment to understanding what our daughter needs — has created a level of support that doesn’t go unnoticed. She is also one of the people who has made us feel welcomed within the school, never once making us feel like we were asking for too much.

Even without a background in speech therapy, she took it upon herself to learn. She enrolled in online courses offered by the AAC device company so she could better understand how to set it up in a way that truly works for our daughter — not just in theory, but in the rhythm of her daily life.

There is something deeply comforting about knowing your child is being supported by someone who is not only present, but willing to grow alongside them.

The One Who Advocates Alongside Us

Her preschool teacher has been someone who advocates alongside us in ways that have made a meaningful difference.

She has supported our daughter within the classroom, while also working behind the scenes to ensure her needs are seen and taken seriously beyond it. One of the ways this showed up was in how hard she worked to help us be heard by school administration when it came to creating a safe and accessible wheelchair loading and unloading zone.

It wasn’t a simple or immediate process, but she stayed engaged — helping to communicate the need, reinforce its importance, and ensure it didn’t get overlooked.

Alongside her, our daughter’s aide has been part of that same experience — and together, they have been the ones who made us feel truly welcomed within the school. In a space that can sometimes feel overwhelming to navigate, they never made us feel like a burden.

Having people within the school system who are willing to advocate and hold space in that way changes how these environments are experienced.

The One Who Helped Me Find My Voice

We’ve also been supported by Leadership in Disabilities and Achievement Hawai‘i, a nonprofit that has helped equip me with tools to better advocate for our daughter within the DOE system.

Through their support, I’ve been able to better understand the language and structure of IEP meetings — and they have also been present alongside us in those spaces, helping ensure that our daughter’s needs are clearly understood and properly supported within what can often feel like complex and overwhelming conversations.

There were times when I felt apprehensive about speaking up. At times, the way things were communicated made it feel as though I was asking for something extra — a special privilege — rather than what was needed to support our daughter. As things moved to the district level, I also began to feel as though my reaching out was being viewed as a nuisance, as if this was something that should have already been resolved at the school level.

At times, it felt less like collaboration and more like being guided toward conformity, rather than working together to create an environment where our daughter could truly thrive.

Through all of that, LDA Hawai‘i helped to ground me in something really important — that not only was I allowed to ask for these things, but that our daughter has a legal right to the support she needs.

There is something incredibly reassuring about having someone who can help translate what’s being said, and who is there to make sure your child is not overlooked within the process.

The One I Turn To

My aunty is who I turn to when everything feels like too much — my “ace in the hole” in ways that have carried me through this process.

With her background as a speech pathologist working within early intervention in the state system, she understands these systems from the inside. She knows how they function, where things can fall through, and what to look for — and that perspective has been something I’ve leaned on more times than I can count.

There have been many moments where I’ve found myself unraveling — sharing the frustrations of the systems we’ve been navigating, how they don’t always work the way they should, and how at times it can feel like they are built in a way that makes it harder for families to advocate for their children. How easily children with special needs can fall through the cracks because of it.

She listens — patiently and without interruption — holding space for all of it. She makes me feel heard in moments where I feel like I’m pushing against something much bigger than myself.

And then, in her own way, she helps rebuild me — offering perspective, clarity, and just enough steadiness for me to keep going.

The One Who Holds Me Steady

And then there is my husband.

He has been my steady place through all of this — the one who holds space when things feel heavy, who reminds me to come back to center, and who stands alongside me in every step of advocating for our daughter.

He also finds creative solutions to the challenges that come up while navigating these systems — helping me, and those involved, think outside of what’s being presented and find ways forward, even if they are temporary. He has a way of seeing possibilities I might not have considered, and of holding systems accountable in ways I can’t. When he steps in, there is a steady, unwavering presence — one that makes it clear we are going to stay the course on what our daughter needs.

He is the one who steps in when I feel myself losing my composure, when it becomes harder to stay level-headed in conversations. The one who steadies me when everything starts to feel like too much.

He is also the one who catches me when I crumble under the weight of it all — when I unravel completely, tears streaming down my face. The one who not only holds me metaphorically, but physically, as I fall apart in his arms. The one who understands how hard it can be to keep pushing forward when all I want to do is stop.

And in those moments, when I feel like I have nothing left to give, he is the one who picks up the sword and shield and helps carry us forward.

There is a kind of strength in having someone who doesn’t need to fix everything, but simply stays.

As I reflect on all of this, I’m reminded again and again that this was never meant to be held alone.

There are so many layers to navigating care, advocacy, and everyday life — and while the systems can feel heavy, it’s the people who step in, who stay, and who help carry pieces of it alongside you that make it possible to keep going.

I also hold deep gratitude for my sister and my mom, who support us in ways that are just as meaningful — stepping in to care not only for our daughter with CP, but for our oldest as well, and helping to carry the everyday rhythms of our home when my husband and I need space to breathe. That kind of support doesn’t go unnoticed.

This is still unfolding. There are still pieces we are working through, still systems we are navigating.

But if there is one thing I am learning, it’s this — we are not meant to do this alone.

And in the moments where it has felt like too much, it’s this circle of support that continues to help me hold this together.