Trusting My Gut: When a Mother Knows Her Child Best

From a 117-day NICU stay to navigating military moves, special education, and an evolving list of medical needs, Kevin’s journey has taught our family what advocacy truly looks like. Along the way, EFMP became more than another military requirement; it gave our family another way to advocate for Kevin’s needs as military life took us from one duty station to the next. Through every transition, diagnosis, and challenge, one lesson continued to surface: trust your gut. Sometimes advocacy begins simply by knowing your child, asking questions, and refusing to stop when something doesn’t feel right.

Kevin’s Journey From Medical Complexity to EFMP

117 Days That Changed Everything

From the moment Kevin entered the world, I knew his journey would be different. What I couldn’t have imagined was how much I would learn about trusting my gut and advocating for my son.

Kevin was born at 27 weeks and 1 day. He weighed just 2 pounds, 4 ounces and measured 13.1 inches long. His early arrival began a journey filled with medical challenges, uncertainty, and more hospital stays than any parent expects. Kevin spent 117 days in the Neonatal Intensive Care Unit (NICU). During those months, his tiny body endured more than I ever imagined possible. Each test, treatment, and procedure became another part of his fight to grow stronger and eventually come home. His NICU journey included:

• Phototherapy and IV fluids

• Multiple head ultrasounds to monitor for intraventricular hemorrhage (IVH)

• Multiple intubations and respiratory support, including CPAP, SiPAP, Vapotherm, and nasal cannula oxygen

• Two blood transfusions to treat anemia

• Cardiac monitoring, including EKGs and echocardiograms

• Eye exams to monitor for Retinopathy of Prematurity (ROP)

• A swallow study to evaluate feeding and aspiration risk

• An upper GI study

• G-tube placement when feeding challenges made additional support necessary

• Two airway scopes that eventually helped identify his tracheomalacia

At the time, every procedure felt like another hurdle before Kevin could come home. Looking back, those experiences also marked the beginning of my journey as his advocate. I learned to ask questions, listen closely, and trust my gut when something didn’t feel right.

Bringing Our Medically Complex Baby Home

After discharge, Kevin came home with a G-tube and nasal cannula. Just one week later, my husband deployed for six months. I became Kevin’s primary caregiver; my mom helped whenever she could, and my sister flew in to help as well.

Kevin was just shy of four months old when he left the NICU and still had significant developmental needs. We enrolled him in early intervention and continued traveling from Bremerton to Madigan Army Medical Center for care. Speech therapy focused on feeding and preventing oral aversion, while pulmonology monitored his oxygen needs and helped us safely adjust his oxygen flow.

Despite everything he had been through, Kevin continued to make incredible progress. On April 28th, 2019, at 10 months old, he was finally able to come off supplemental oxygen. On June 14th, 2019, at 11 months old, he was able to have his G-tube removed. But even as we celebrated those milestones, there were still medical challenges along the way. The day before his first birthday, Kevin underwent another surgery to repair a hernia. For the first time, it felt like we were finally leaving some of the medical complexity of his infancy behind.

When EFMP Became Part of Our Story

For a moment, it felt like we could finally breathe. Then military life took us in a new direction.

While Kevin was still in the NICU, his neonatologists recommended enrolling him in the Exceptional Family Member Program (EFMP). At the time, EFMP felt like one more layer of paperwork during an already overwhelming medical journey. We didn’t fully understand what the program would mean for our family.

Over time, we began to understand just how important EFMP would become. The program helped protect Kevin’s access to care during military moves. His Category 5 classification also limited where we could be stationed. Our options included Washington, California, Florida, Virginia, and Maryland.

While my husband was deployed, he received orders to Ohio. He reached out to his detailer, explained Kevin’s medical needs and EFMP enrollment, and our orders were changed. Ohio was no longer an option; instead, we were heading to Virginia. I became responsible for coordinating the move while he was away. I scheduled the movers, packed up our home and on September 10, 2019, my mom, Kevin, and I flew from Washington to Virginia.

Starting Over After a PCS

Moving to Virginia meant starting over. We needed a new pediatrician, hospital, and team of specialists who understood Kevin’s medical history. I knew he needed continued care, but I wasn’t sure what that would look like in our new home.

What I did know was that Kevin still needed support. So I started asking questions, requesting referrals, and pushing for answers. I was learning to advocate for him, even when I wasn’t always sure what to ask for.

Eventually, Kevin connected with Neurodevelopmental Pediatrics and an aerodigestive specialty clinic. His care team included gastroenterology, speech therapy, pulmonology, and ENT. These specialists helped us better understand the lasting effects of his premature birth and early medical complications.

For the first time since leaving Washington, we were rebuilding the care team Kevin needed. Then, just a few months later, everything changed again.

When the Pandemic Interrupted His Care

The COVID-19 pandemic disrupted the care we had worked so hard to establish. Kevin’s speech therapy initially transitioned to virtual visits, but those services eventually ended, and we also changed therapy providers. Physical therapy was paused as well. In 2021 we were able to resume in-person therapy again for speech and physical therapy and began rebuilding some of the consistency we had lost.

By the fall of 2022, Kevin was ready to begin preschool, but he needed more support than a typical classroom could provide. He was enrolled into Early Childhood Special Education (ECSE) because of the developmental delay and speech delays. Through ECSE, Kevin qualified for an Individualized Education Program (IEP). His IEP included speech therapy and occupational therapy, with goals focused on speech and fine-motor development, including hand strengthening.

Learning to Advocate in a New System

Kevin was incredibly fortunate to have such an amazing teacher and her assistant in preschool. They both became an important part of not only Kevin’s education, but also my growth as his advocate. The teacher really helped me learn how to navigate the world of IEPs and educational advocacy. His teacher assistant helped me understand it is possible to still be positive and happy even when you go into battle to advocate for your child.

His teacher taught me what to look for in an IEP, how to recognize when Kevin’s needs or goals might be changing, and how to request an IEP meeting when I had concerns. She helped me realize that I didn’t have to wait for someone else to tell me when Kevin needed more support. I had a voice in the process, permission to question what wasn’t working, and the right to bring the team back together when his needs changed. Most importantly, I learned to trust what I was seeing in my own child.

And that brought me back to something I had been learning since Kevin was born: trust your gut.

When Medical Complexity Doesn't Simply Disappear

While Kevin was making progress in school, his medical needs continued to follow him. I had spent years learning to recognize when something didn’t feel right with Kevin medically. In 2023, during kindergarten, he developed lower lobe pneumonia in both lungs and became seriously ill. He spent five days in the PICU, including 24 hours on a ventilator and two days under sedation. His neurodevelopmental pediatrician kept him classified as Category 5 within EFMP.

It was another reminder that although Kevin had come a long way from the NICU, his medical complexity was still very much a part of his life. Behind every diagnosis, procedure, and medical record was a little boy who was fighting to grow, learn, and simply be a kid.

Trusting My Gut at School, Too

By first grade, the challenges we were seeing were no longer limited to the developmental and speech delays that had shaped Kevin’s early IEP. Other differences were becoming more noticeable in how he processed information, managed his impulses, interacted socially, and maintained focus. Concerned about what I was seeing, I requested multiple IEP meetings, but I didn’t feel like my concerns were being heard.

Trusting my gut didn’t mean assuming I knew more than the professionals. Instead, it meant knowing my child well enough to recognize when something didn’t feel right and being willing to ask questions. Years of navigating Kevin’s medical needs had taught me to pay attention to those instincts. What I didn’t realize at the time was that the same instinct would become one of my most important tools in advocating for him at school.

Even after raising concerns with both his doctors and his school, I continued to hear variations of the same explanations: “He’s a boy.” “He’s just being Kevin.” “He’s a preemie; he may just need more time.” But Kevin was showing us that he needed more than simply time. There were plenty of things I didn’t know about special education or IEPs, and I certainly didn’t have all the answers. What I did know was Kevin—what he could do, where he struggled, and when something seemed different. That knowledge gave me a reason to keep asking questions and advocating for him.

Having Someone in My Corner

I requested multiple IEP meetings because I was concerned about how Kevin was doing, but my concerns were not being heard, and some of my requests were denied. So I reached out to our EFMP case liaison and asked her to attend an IEP meeting with me. She listened to my concerns, helped me understand the IEP process and my rights, and provided resources explaining how to formally request meetings and advocate for Kevin. When she attended the meeting, the entire demeanor in the room changed. The teacher, IEP case manager, and assistant principal approached the conversation differently.

She wasn't there to take over Kevin's advocacy. She was there as someone who understood the system, understood what I was trying to communicate, and could stand beside me while I advocated for my son. I only wish she had been able to speak alongside me when my concerns were being dismissed.

Sometimes a parent doesn't need someone to take over their voice. They need someone in their corner who understands the system well enough to stand beside them and help make sure that voice is heard. And for Kevin, being heard mattered.

Another Piece of the Puzzle

Kevin was growing, but so was our understanding of his needs. His early childhood had been shaped by prematurity and a complicated medical history, and for years it was difficult to know which challenges were temporary and which would follow him as he grew. As he approached seven, we needed to look beyond developmental delay and understand what was actually affecting him so we could make sure his education and support matched the child he was becoming.

Every time I voiced my concerns to friends or family, I was always told, “He is a boy, they are hyperactive.” “Leave him alone, he is fine. There’s nothing wrong with him.” For the record, I knew there was something different about him. I just knew he was wired differently, like me.

In January 2025, Kevin was formally diagnosed with ADHD by both his neurodevelopmental pediatrician and an outside psychologist. The diagnosis gave us a better understanding of some of the challenges Kevin had been experiencing, but it didn't explain everything. His medical history, developmental delays, speech and motor delays, and the way he processed and interacted with the world were all pieces of a much larger picture.

The ADHD diagnosis wasn't an ending—it was another piece of the puzzle.

An IEP That Evolved With Him

As Kevin approached age seven, we knew his IEP needed to evolve with him. His ADHD diagnosis became an important piece of understanding his needs and determining what support he needed at school. His IEP evolved with him. Instead of focusing primarily on developmental and speech delays, his goals became more structured around the needs he was experiencing at school, including social skills, impulsivity and behavior, and executive functioning and maintaining focus.

His team also found him a teacher whose approach was a much better fit for the way Kevin learns and processes information. That year ended up being the best year of his primary school experience.

For Kevin, the right support made a difference. The goal wasn't to change who he was or make him fit into a mold—it was to understand how he functioned best and give him the tools and structure to succeed.

Understanding What EFMP Really Means

EFMP continued to be part of our support system as Kevin grew. We had an EFMP Case Liaison assigned to our family, and when we ran into challenges navigating the school system, I knew I could reach out for help. Our liaison helped me better understand Virginia's special education process and provided resources, guidance, and connections to services and specialists when we needed them.

EFMP also became something I thought about differently as we looked toward the future. Kevin was still classified as a Category 5 EFMP, and that designation remained important when thinking about future PCS assignments. We had already experienced firsthand how EFMP could change where our family was sent. Now, I understood that it could also help ensure that Kevin's needs were considered if we ever had to move again.

That reassurance mattered. Military families are accustomed to moving, but when you have a child with complex medical and educational needs, a PCS isn't simply about finding a new house or learning a new duty station. It means asking whether your child will be able to access the specialists, therapies, educational services, and support systems they rely on. EFMP gave me confidence that Kevin's needs would remain part of that conversation.

Kevin Today

Today, Kevin is getting ready to enter third grade. His current IEP continues to focus on functional skills, including social skills, behavior and impulsivity, and executive functioning and maintaining focus. He does not currently receive additional services through his IEP, although we are exploring whether speech therapy may be helpful for a stutter that sometimes causes him to get stuck on or repeat words.

Academically, Kevin is doing great. Math is one of his strengths, and outside of school, he is happiest being active. He loves American Ninja Warrior (ninja), bowling, and baseball. More than anything, he loves spending time with his family and his pets.

Medically, Kevin's life looks very different from the one we brought home from the NICU. He still sees neurodevelopmental pediatrics, pulmonology, and ENT, and he takes daily medications for asthma control and ADHD. When he gets sick, he may still require additional medical care and intervention, but most days, Kevin gets to simply be an 8-year-old boy; getting dirty, going to school, bowling, playing baseball, and running around doing parkour. His days are filled with activity, laughter, and time spent with the people and animals he loves.

From a 2-Pound Baby to an 8-Year-Old Boy

When I look at Kevin now, it is hard to reconcile this energetic, funny, active eight-year-old with the 2-pound, 4-ounce baby who spent the beginning of his life in the NICU. His medical complexity didn't disappear. It evolved as he grew, and so did the ways we had to advocate for him.

Our journey through EFMP has been about much more than a duty station. Through every move and transition, we have advocated to make sure Kevin has access to the medical, developmental, and educational support he needs. EFMP helped our family navigate a PCS when Kevin was an infant, helped connect us with resources as his needs changed, and gave me someone to turn to when I needed help navigating the educational system.

Trust Your Gut

If there is one thing I hope another military parent takes away from Kevin's story, it is this: trust your gut.

You may not always know what the answer is. You may not know which specialist to ask for, what service your child needs, or how to navigate the next system in front of you. But you know your child.

Ask the questions. Keep learning. Keep advocating. And don't be afraid to speak up—even if your voice shakes.

Meet the Author

Abigail “Abby” Newcombe is a Navy spouse, boy mom, healthcare administration professional, and lifelong advocate for military families. Through her experiences as a military spouse and her involvement in Family Readiness Groups, Abby has developed a deep appreciation for the importance of community, connection, and making sure military families know they are not navigating challenges alone. When she’s not working or supporting her military community, Abby is usually spending time with her husband and son, reading, bowling, cooking, or working on one of her creative projects. She believes that sometimes the smallest acts of support can make the biggest difference, and that military families deserve to feel seen, heard, and supported.