A Group No One Applies to Join

“I belong to ECD. A group which no one applies to join.” The spirited mother of four recounts a tale of searching, frustration, courage, and finally hope. Janet Bunge was diagnosed with Erdheim-Chester Disease in 2015. The journey started in 2003 with a few uncomfortable bumps on her legs that revealed to be much more than a rash. Erdheim-Chester Disease, a rare, slow-growing cancer creeped through Janet’s skin, bones, lungs, heart, and finally, her brain. […]

Forgetting Milestones & Learning to Measure Progress…a New Way of Thinking!

When you hear those words “Your child has…” we all experience similar feelings. The end of that quote may contain a different diagnosis, but for most of us the feeling deep in our stomach or caught in are throat are the same. That feeling that your heart aches because you no longer know the vision or the way your path will lead. All you feel is confused and scared. Some of us hear those words […]

OPPORTUNITY IS KNOCKING

Have you ever thought to have your non-verbal child join the children’s choir at church? How about enrolling him in a homeschooling community that has the word “Conversations” as part of its name? Would you dare enlist your non-verbal young adult son to co-present to students enrolled in a college-level class? Throughout the years, I have sought out opportunities to include my son in activities in which he expressed interest or that were learning experiences […]