My husband and I had been married five years when we decided to start trying for a baby. We got pregnant right away. At the time, we were living in a tiny 500 sq. ft. cabin on a private lake in Washington State, and life felt perfect.
At 41+ weeks, my water broke. I’ll never forget my husband smelling the carpet because he didn’t believe me and wanted to be sure it wasn’t just pee. We headed to the hospital, labored for hours, and finally met our baby girl—Hazel Rose. Her Apgar scores were perfect. She was perfect.
We brought her home the next day, and the only concern was a slightly elevated bilirubin level. But overnight, something changed. Hazel wasn’t feeding well, and she kept arching her back. We thought it was gas. At one point, we prayed over her and she settled. But in the morning light, she looked pale—and we both knew something was wrong.
When we arrived at the hospital, the doctor took one look at her—and Hazel stopped breathing.
My world froze.
A nurse grabbed me, pulled me down the hall, and rushed me into a room where seven people were working on my tiny girl. That moment changed everything.
For the next month, we lived day and night in the Seattle Swedish NICU. When we finally left, we had no answers. All we knew was that Hazel had global brain damage, and her future looked grim. Doctors didn’t believe she would survive, but they couldn’t tell us why.
Hazel’s first year is a blur of therapy, EEGs, appointments, tears, and very little hope. We didn’t know if she would ever talk, walk, sit, or even roll over.
As her first birthday approached, I desperately wanted a way to explain to other kids why Hazel wasn’t developing typically. One night at 3 AM, I woke up with a children’s book in my mind. I wrote my very first book, “Hazelnut, It’s Time to Get Up,” simply to help children understand Hazel.
Over time, we adjusted to life raising a child with special needs. We had been dismissed from genetics—they told us Hazel’s condition wasn’t genetic—so we decided to try for another baby.
We got pregnant with Russell, and that pregnancy uncovered something completely unexpected: I had cervical cancer.
Because of the pregnancy, I was finally seen by the right doctor. I had a massive tumor hanging off the end of my cervix. How I got pregnant was a miracle in itself, and I truly believe that Russell saved my life.
We moved quickly. I had a cone biopsy, but the margins weren’t clean. Thankfully, the cancer hadn’t spread to my lymph nodes. At 35 weeks, we met Russell via C-section, immediately followed by a radical hysterectomy. Today, I am cancer-free.
Russell was born perfect—perfect Apgar scores, breathing on his own, no concerns.
Then day two came.
I noticed his lip turn blue. I didn’t want to say anything because I knew what would happen—they would take him away, just like Hazel. But two minutes later, the nurses saw it too, and Russell was taken to the NICU.
Because we now had two NICU babies, genetics finally took another look. When Russell was one and Hazel was almost four, the doctor called—on my birthday—to tell us they found a variant on the LIAS gene.
Both our children had variant NKH—Nonketotic Hyperglycinemia.
Most children with NKH pass away within the first 10 days of life. It is a degenerative disorder. Many would see this diagnosis as devastating.
But our kids lived.
And we knew immediately—they were miracles.
As we researched further, we learned there were only two known children with their exact variant who had lived past age eight, the oldest being sixteen. And yet, when we finally had a diagnosis, my husband and I felt an incredible peace. The weight we had carried for nearly four years lifted. We finally knew this wasn’t something we caused—it was simply the exact way our genetics came together.
Over time, I took our pain and turned it outward. I started reading my Hazelnut book in local schools. What began as a simple author visit grew into a movement—The Hazelnut Movement, now partnered with Luke 14 Ministries in East Tennessee.
We’ve spoken to thousands of students, visited more than 25 schools, and given away over 2,000 books to educators and kids impacted by disability. My heartbeat has become helping people understand that you can still have joy in the middle of pain—that hope is possible even when life takes a turn you never expected.
Today, Hazel is eight and Russell is five. We don’t know their future. We take every day as the gift that it is.
Both are nonverbal. Hazel walks—by miracle. Russell uses a wheelchair. They are full of energy, joy, and love. They thrive around people far more than toys or screens. They attend school assemblies with me, and those moments are always the most powerful—watching them change the narrative of how children think about disability.
My deepest hope is that through our story, you see our faith—ultimately, that you see Jesus. I think often of families walking a similar road without hope, and I don’t know how they survive it. Hope has changed everything for us. It’s how I can look forward to the day when Jesus will heal my kids—the day Russell will walk, Hazel will talk, and all will be made new.
And that will be a very good day.