Advocacy, Instinct, and Finding Your Voice in Medical Spaces

After sitting and waiting for others to tell us what was happening with Baby L, I was more than ready to jump in and become the mom she needed. During the week I wasn’t able to hold her after her tracheostomy and gastrointestinal tube’s were placed, I watched intently as the nurses and respiratory therapists cared for her. I paid attention to every movement, every routine, every decision, preparing myself to be able to do these things on my own as soon as possible.

For a while, I thought that being the best mom meant learning how to physically care for her. But I quickly realized I was going to become so much more than just her mom.

I had heard the therapists and social workers tell me that would become the expert in L’s condition – that I would always be the person in the room who knew her best. I didn’t realize how early that would happen. I didn’t understand yet that being an expert in L would extend beyond our family and friends and into medical spaces. I had always assumed that when it came to the medical side of things, someone else would know better than me.

At our hospital, there was a checklist of skills parents of children with a tracheostomy were required to learn. It was a standard list the nurses tracked closely – things like daily care of the trach, changing gauze and cleaning around her stoma on both her neck and her stomach, learning how to change a trach, setting up feeds and cleaning the bags afterwards, and safely loading her into a car seat while packing all of the necessary equipment.

There was an estimated timeline for completing this checklist. Most families, we were told, finished in about six weeks. Ryan and I – with the support of his parents- completed it in closer to a month. We were eager, focused, and ready to bring L home.

Once we felt confident in those skills, we requested a meeting with Dr. T. We were ready. He was not.

I believe this meeting took place on a Monday. When we told Dr. T we felt ready to go home, he responded by laying out everything that could- and, in his opinion, would- go wrong. He explained why he felt we needed to stay in the hospital longer.

One of his biggest concerns was that we wouldn’t have in-home nursing support immediately after discharge. To us, this felt unnecessary. I had already an emergency in the hospital on my own. One day while L and I were snuggling, her trach came out. There was no nurse in the room. I calmly asked a neighboring nurse to let the respiratory therapist know I needed help- and then I got to work. Before the RT arrived I had replaced and secured her trach. I remember looking at his panicked face and saying “Can you come check that I did this right?”

At home, my mom and brother would be with us, and Ryan worked just five minutes away. Our house is extremely small. L would be sleeping in the front room and so would our visiting family. An additional person in the space felt overwhelming rather than supportive.

Dr. T leaned into what I now understand as a necessary approach for many families- outlining worst-case scenarios to ensure caution. But it’s important to not that L’s trach serves a different purpose than it does for many other children. L can breathe on her own. The issue is that she doesn’t take deep enough breaths to keep her carbon dioxide levels in a safe range. For many babies with trachs decannulation is immediately life-threatening. For L, if she is awake, it is not.

Sitting in that room, hearing statistics about how little time it takes for a child without oxygen to suffer brain damage -and eventually die- shook me. I sat there quetioning everything. Maybe she did need to stay. How could I possibly care for her at home?

And then Ryan spoke up. He reminded the room that we weren’t discussing averages or worst- case projections- we were talking about our daughter. Not a number. Not a general case. L. And in that moment advocacy didn’t sound loud or confrontational. It sounded like love, clarity, and someone willing to speak when I couldn’t.

Ultimately, we walked away from that meeting being told we had at least two more weeks before discharge. We were discouraged, frustrated, and feeling unheard. We headed back to see L because we all needed a reminder of why we were there- and it wasn’t over.

Something in me shifted after that. I decided to become even more knowledgeable about her medical care than I already was. I attended morning rounds with a notepad in hand, ready to understand what still needed to happen for us to get home. I stopped waiting passively and started participating fully.

The next morning, our advocacy paid off. Dr. T met me at L’s bedside and asked, “How would you like to take her home on tomorrow?” I burst into tears, He had heard us. And I learned then that advocacy doesn’t always lead to immediate change or instant answers. Sometimes it takes time to be heard. But it is always worth speaking up- even in rooms where your voice feels small next to the degrees on the wall.

I jumped in feet first once I learned to trust my instincts in the presence of medical professionals. Advocacy doesn’t require perfection or certainty. It begins with caring deeply, paying attention, and believing that knowing your child matters. You learn by showing up, asking questions, and staying engaged -one conversation at a time.

If you’re early in this journey, know that you don’t need all the answers to deserve a seat at the table. Your voice belongs in the room. Even when it feels small. Even when it shakes. Even when it takes time to be heard.

Here with you,

Katie