Finding Resilience Through Connection: Danielle's Story

When I look back on the day Ryan was born, the memories still feel sharp and heavy. His birth was traumatic. He wasn’t breathing when he came into the world, and within seconds I was watching a team of doctors and nurses fight to stabilize him. He was whisked to the NICU, where he underwent days of therapeutic hypothermia — a procedure to cool his body in the hope of protecting his brain from the damage caused by asphyxiation. Those first days were terrifying. Nothing about this was how I pictured bringing a baby into the world.

In the hospital, Ryan had a newborn hearing screen. He partially passed, so no one pressed the panic button. They also took a CMV swab, but we were told nothing about it. No one ever followed up. We didn’t know that the test was sitting there, unread — or that the window for life-changing treatment was quietly slipping away.

At two months, we went for Ryan’s hearing check-up. That’s when everything shifted. We were told he was profoundly deaf. Later, we found out that the CMV test had, in fact, been positive — but it had never been read. That delay meant Ryan missed the critical early treatment with antivirals that could have preserved some of his hearing. I still struggle with that truth. It feels like the system failed him, failed us.

By ten months, Ryan had bilateral cochlear implants. We were making enormous decisions before we’d even had a chance to grieve or process what they meant. Everything was moving at lightning speed, and I was stumbling behind, barely able to keep up.

Losing Myself in the Process

Before Ryan, I knew myself through family, volunteerism and my work. I had built a career in nonprofit philanthropy, and I carried that identity with pride. I was used to managing details, juggling projects, and making things happen. But nothing in my career — nothing in my life — prepared me for this.

Suddenly, I wasn’t just “mom” or "colleague." I was case manager, Uber driver, scheduler, insurance negotiator, project manager, social worker, and medical translator all rolled into one. Ryan had a whole team of specialists — and I know they all meant well — but I couldn’t process everything they handed me. The binder of resources. The to-do lists. The “next appointments.” The acronyms and medical jargon. Everyone expected me to lead this team, to keep track of every moving piece, while also loving my baby and holding my family together.

It was too much.

After Ryan’s traumatic birth and the avalanche of diagnoses and decisions, I was diagnosed with PTSD and bipolar disorder. At first, those labels were terrifying. But they also gave me language for what I was experiencing — the panic attacks, the exhaustion, the feeling like I was unraveling while I thought everyone else expected me to “stay strong.”

The Gaps That Hurt Families

Ryan is almost three now, and we’re deep in the IEP process for preschool. I’d love to say it gets easier, but the truth is: the gaps in services make it harder than it should be.

Mental health support for parents like me is practically nonexistent. Financial support is incredibly limited, even though raising a child with complex needs has real costs that go beyond medical bills. Families are expected to absorb everything — the time, the emotional toll, the logistics.

We become the case managers, the chauffeurs, the schedulers, the advocates, the ones filling out endless paperwork. And on top of that, we’re supposed to be emotionally present, patient, and hopeful. I don’t say that to complain. I say it because it’s real. And it’s not just me. Every parent I’ve met in this journey has described the same exhaustion, the same impossible balance.

This isn’t just my story. It’s a family story. I have a husband and two other children, ages eight and six, and it’s hard on them too. The kids love their brother fiercely, but the developmental and behavioral challenges, communication gaps, hospital visits, the therapy schedules, the constant appointments — they shape our whole family rhythm. Sometimes I feel like I’m pulled in a million directions at once, never fully able to give each child what they deserve.

We’re also learning sign language together as a family. For our family, bilingualism means giving Ryan access to both spoken English and American Sign Language (ASL). I wish it came faster — but 40-year-old brains only pick things up so quickly. Still, every new sign we learn feels like a victory. We believe that language is connection, and we don’t want to limit his opportunities to communicate, learn, or build relationships.

Finding Resilience in Connection

What’s saved me, over and over, has been other parents. The ones who have walked this path before me. The ones who could say, “I’ve been there. I know it’s hard. You’re not alone.”

These parents have been my lifeline. They’ve listened without judgment when I admitted how overwhelmed I felt. They’ve offered strategies and encouragement, yes, but more importantly, they’ve simply been present. They’ve shown me that resilience isn’t about doing it all on your own. It’s about connection. It’s about vulnerability. It’s about asking for help, even when you’re not sure what kind of help you need.

When Ryan was four months old, we started at The Learning Center for the Deaf in Framingham. That community became our anchor. The parents we’ve met there have become family. They’re the ones who celebrate every small victory, who show up when things are hard, and who remind us that we don’t have to walk this path alone. That circle of support has been just as important for Ryan’s growth as the therapies and lessons, because it gives all of us the strength to keep moving forward.

Why Massachusetts Hands & Voices

That’s why I said yes when the chance came to help launch Massachusetts Hands & Voices. In those early days with Ryan, I remember feeling like I was drowning. Every appointment came with more information than I could take in, every decision felt impossibly high-stakes, and yet I had no clear place to turn. I was confused, overwhelmed, and scared — trying to smile and nod in rooms full of professionals while inside I was falling apart. No parent should have to feel that way, so alone at a time when you most need support.

Massachusetts Hands & Voices exists to bridge that gap. It’s about walking beside families without judgment, no matter what communication or technology choices they make. It’s about cutting through the noise when a parent feels buried under binders of resources and stacks of decisions, and simply saying, “ou don’t have to figure this out alone.”

I believe in this mission with everything in me. Because I’ve lived the difference it makes. And if sharing our story helps even one other family feel less alone, then it’s worth it.

Closing

Ryan still has challenges ahead, and so does our family. But we’re not walking this road alone. And if you’re reading this as a parent who just got the diagnosis, or who is deep in the middle of it all, I want you to hear me: resilience doesn’t come from doing everything perfectly. It comes from connection, from leaning on people, from being honest about how hard it really is.

You don’t have to do this alone. And with Massachusetts Hands & Voices, I promise — you won’t.