By Tausha Lembke
Mommy to Aspen
Holoprosencephaly, Hydrocephalus and Epilepsy
Born October 2023
Our journey with Aspen began during pregnancy, when she was diagnosed with congenital hydrocephalus and holoprosencephaly. From that moment, we knew her life would be filled with challenges, but we had no idea just how much strength she would show us along the way.
When we received her diagnoses, the doctors prepared us for the worst. They told us there was a strong possibility Aspen might not survive, or that her quality of life would be extremely limited. We were terrified, heartbroken, and filled with uncertainty. Like all parents, we had dreamed of bringing home a healthy baby, celebrating milestones, and watching her grow into her own little person. Instead, our pregnancy became filled with difficult medical conversations and questions about what the future might hold for Aspen and our family.
When Aspen was born in October 2023, she spent her first 34 days in the NICU. It was an overwhelming and uncertain time. As new parents, we often felt helpless as we navigated constant medical updates, procedures, and so many unknowns. We didn’t know what the future would look like or how much time we might have with our little girl.
During Aspen’s NICU stay, On Angels’ Wings stepped in and gave us something we will never forget: beautiful, professional photographs of our little girl at a time when we didn’t know if we would ever get to make those kinds of memories.
Most families have their baby’s first pictures taken outside of a hospital. For us, those photographs became a symbol of hope, love, and resilience. They brought us joy during such a heavy time and are now priceless treasures that capture Aspen’s strength and remind us of how far she has come.
Aspen’s medical journey continued long after we brought her home. In addition to congenital hydrocephalus and holoprosencephaly, she has since been diagnosed with cerebral palsy, epilepsy, and infantile spasms. These conditions have changed how we live day to day as a family, bringing multiple hospital stays, countless medical appointments, and ongoing therapies.
The challenges are real, and there are times when the uncertainty can feel overwhelming. But through everything, Aspen continues to fight with the most beautiful smile, laughter, and spirit. Her resilience inspires us every single day. She has continued to defy the odds, showing us what courage and strength can look like in someone so small.
We want the world to know that children like Aspen are warriors. While her diagnoses shape our journey, they do not define who she is. Aspen is full of strength, courage, and light. She has taught us so much about unconditional love and finding hope even when the future feels uncertain.
Our hope is that Aspen continues to grow and thrive in her own way. We want to see greater awareness and support for medically complex children and their families, and we hope her story inspires others to never give up. We don’t know exactly what the future holds, but we’re grateful for every milestone, every smile, and every moment we get to share with her.
On Angels’ Wings continues to provide annual photos for our family and check in on Aspen. What they do is so important for families like ours. The organization creates lasting memories in the hardest of circumstances and gives parents something to hold onto when everything feels uncertain. Having that kind of love and support during some of our most vulnerable moments has made a profound difference in our lives.
Aspen is still fighting, and because of the love, memories, and support we’ve been given along the way, we face the future with courage, hope, and gratitude. We will forever be grateful for the role On Angels’ Wings has played in our journey.
