May 3, 1992 – April 5, 2001
Our Ray of Sunshine
We want to tell you about our daughter, Erica—and what it truly meant to love and care for her.
When Erica came into our lives, nothing unfolded the way we had imagined. The path was harder, more complicated, and often overwhelming. But somehow, wrapped inside all of that, was a kind of joy and love we never could have planned for. Erica changed us in ways we’re still discovering, even now.
It’s been nearly thirty years since we lost her, yet she’s never really left us. She’s in the way we see the world, in how we face difficult days, and in the quiet moments when we remember her smile. Sharing her story feels like keeping her light alive—honest, sometimes messy, but always full of love.
Our “Lisskid”
You might hear us use the word “Lisskid.” It’s a nickname we—and other families like ours—used with affection. Sometimes, when life feels heavy, you find small ways to bring in light.
Children like Erica, despite everything they face, have a way of giving love so freely. Erica did that every single day. We spent our time trying to meet her there—to give back even a fraction of what she gave us.
Raising Erica meant living in two worlds at once. There were constant challenges, but also incredible blessings. As a family, we made a choice early on: we would face everything head-on, and we would search—intentionally—for moments of joy.
And we found them.
Even now, she continues to shape how we think, how we trust, and what we hold close. We often leaned on the belief that we were given exactly what we could handle, even when it didn’t feel that way. Somehow, we made it through—together.
Life With Erica
Erica never developed beyond what you might expect from a two-month-old baby. But in so many ways, she understood more than we could explain.
She felt everything—our moods, our energy, even the tone of a room. If something bothered her, she let us know. And when something made her happy, you could see it instantly.
Music was her joy. Elvis, especially. Her teddy bears would play his songs, and in the middle of hospital stays—machines beeping and nurses moving around—those songs could calm her in seconds. You could literally see her body relax.
Sometimes, she would even laugh during blood draws. And somehow, her laughter would spread through the room, lifting everyone with it.
It often felt like she could read your heart. If you slowed down enough to really be with her, she had a way of teaching you things without ever saying a word.
Unless she was sick, Erica almost always smiled. That smile became our anchor. We started calling her our rainbow—because even on the darkest days, she reminded us that light still existed.
That was her gift to us: pure, unconditional love.
Everyday Life
Over time, our home slowly transformed. What once looked like a typical house began to look more like a small hospital. There were feeding pumps, oxygen tanks, suction machines, wheelchairs—everything we needed to care for her. We even had two hospital beds, one in her room and one in the family room.
Friends would walk in and gently joke about it, and we’d smile—because it was true.
As Erica grew, so did the challenges. We moved into a one-story home just to make things manageable. Even something as simple as giving her a bath took planning and teamwork.
But we never wanted her life to feel like it was only about medical care. We made space for laughter, for music, for family time. Those moments mattered just as much as anything else.
And through it all, life stayed a little chaotic—with three dogs running around the house, adding their own kind of energy to our days.
Memories Remain
Illness was always something we had to watch closely. Pneumonia, especially, was a constant threat.
In the fall and winter of 2000, Erica was in and out of the hospital several times. Each stay seemed to take a little more from her.
Just before her ninth birthday, we said goodbye.
Pneumonia was the final cause, but it never feels that simple. Losing her left a space in our lives that can never truly be filled.
And yet, what she gave us didn’t end there. Her life—though short—left a lasting imprint on all of us.
Understanding Lissencephaly
Lissencephaly is a rare brain condition where the brain doesn’t develop the folds it’s supposed to have. Those folds help control movement, thinking, and so many other functions. Without them, development is severely affected.
There’s no cure. Care focuses on comfort, support, and giving these children the best quality of life possible.
Many children with severe forms don’t live long, often due to breathing complications or seizures. Every child’s journey is different, but all of them need deep care, patience, and love.
And that’s what we tried to give Erica—every single day.
If you’d like to learn more, organizations like the National Institutes of Health and the Child Neurology Foundation offer helpful information.
But for us, lissencephaly will always mean one thing first:
It gave us Erica.
More information is available through the National Institutes of Health (NIH) and the Child Neurology Foundation.
A collection of stories and photos
Selected adventures and lots of photos of our short time with Erica are saved here: Our Lisskid
