on angels wings

An estimated 456,000 American children live with epilepsy. When epilepsy becomes medically complex, it can impact nearly every aspect of a child’s health and require continued around the clock level of care.

Kaiden’s diagnoses affect more than just his physical health. He struggles with making friends and feeling accepted. He understands that he’s on a different educational level than some of his peers… As his mom, it’s hard watching him face those challenges on top of everything else.

But through everything, Abbie is the sweetest, most caring child I’ve ever met. No matter what she’s going through, she always manages to keep a positive attitude. She loves arts and crafts and spending time with her dog.

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.

We will live the life that Brooks never got to. We will live like Brooks, and for Brooks. Our son’s diagnosis opened our eyes to so many who go through what Brooks went through each day. Throughout our whole experience, we learned that we are fortunate to live each day without ailment. If there is…

One of the biggest things I’ve learned is to give myself grace. We’ve learned how to care for a child with a condition that most people have never even heard of. There have been days when I felt like I handled everything perfectly and days when I’ve felt completely overwhelmed. That doesn’t make me a…

Epidermolysis Bullosa (EB) is a condition that’s often seen at birth or shortly after. It’s a group of rare diseases that cause skin to blister easily. Because a baby’s skin is extremely fragile, everyday care — such as diaper changes or soft touches — can lead to blisters and open wounds. Kids with EB are often called…

When he was first born, his dad and I had no idea what we were going to do with a baby we could barely hold without damaging his skin. We didn’t know how to physically handle our child, and he screamed almost all day, every day, due to pain. Over time, we learned different techniques…

Since completing the program, I’ve been able to have a different outlook on how I process grief. Giving myself permission to feel all my feelings has not only changed how I process, but how I can also support others going through grief. I also learned not to put grief inside a tiny box and only…

Krista DahlMommy to CharleeBilateral Renal AgenesisMay 2020 In May 2015, we welcomed our first beautiful daughter after an easy pregnancy. Two years later, in December 2017, we welcomed our son after a fairly simple pregnancy. I did have my gallbladder removed at 19 weeks, and then he was delivered via C-section at 40+1 because the…