In 2020 I was a guest on the podcast Once Upon a Gene. The host and I had a long discussion about Emily’s undiagnosed journey. I was very clear with the host (and now friend), Effie Parks, that I was okay not having a diagnosis. I knew a diagnosis was not going to change EmilyContinue reading “Finally Diagnosed: A Twenty-Two-Year Journey”
Category Archives: Developmental Disabilities
Different Path and Different Journey
“Normality is a paved road: It’s comfortable to walk, but no flowers grow.”-Vincent Van Gogh Cradled in her arms is her first grandchild. At two months of age, Wyatt craves the comfort of a warm embrace and the sway of arms that hold him while he sleeps. As I watch Patti gently rocking Wyatt toContinue reading “Different Path and Different Journey”
Little Things We Take for Granted, are Big to Others
One of the greatest gifts I have received from having a child with developmental and physical delays is that I no longer take things for granted. During my pregnancy with Justin, I devoured the What to Expect books like Crème Brûlée. They were treasured maps and guides. When Justin not only met but exceeded whatContinue reading “Little Things We Take for Granted, are Big to Others”
Advocacy Her Way
Learning has always been something I enjoyed. I was the kid that could not wait to go to school. I loved the discovery and excitement in each new day. I continue to study, learn, grow, and be curious. Throughout my educational journey, I have had some pretty wonderful (and not-so-wonderful) teachers, but my greatest teacherContinue reading “Advocacy Her Way”
Caregivers Require Care Too
Caregiving is the most stressful and difficult job there is. I remember when my son was born. I delivered him and 24 hours later, my husband and I were sent home to care for this precious human on our own. Our doctor and friends referred us to reference books to guide us. The manuals wereContinue reading “Caregivers Require Care Too”
Hmm, How Can I Help?
Raising children is not easy. Caring for a child with medical needs or physical and intellectual disabilities adds to the challenges. The disease or disability can often take a family hostage, or at least that is how it feels. Your time is not your own. Your needs get kicked down the road. Sometimes they travelContinue reading “Hmm, How Can I Help?”
Disabled Children and Traveling Challenges
When Todd and I were married, we dreamed of all the places we would travel to and the adventure we would share. Before we had children, we would take trips. We mostly traveled the Pacific Northwest and a few trips to Mexico. We did not have the finances to travel overseas. One day, after theContinue reading “Disabled Children and Traveling Challenges”
Disability, Communication, and Covid
This week we all tested positive for Covid. This has been challenging for our family. We usually work as a team. If one person is down, another can pick up the slack. (Think Brené Brown’s GAP plan.) Well, we are all down. This would be okay if we could all retreat to our corners andContinue reading “Disability, Communication, and Covid”
Caregiver for a Season, Part of Our Lives Forever
As we walked into the store, Emily let out a squeal or a scream. Well, it was a high-pitched reaction that vocalized extreme emotion. Emily doesn’t regulate her emotions the same way we do. She may go from a cry to a laugh in a millisecond. Her squeals told me she was experiencing an emotionalContinue reading “Caregiver for a Season, Part of Our Lives Forever”
Clean Teeth and Kindness
As I take Emily to the restroom to begin her evening routine, I engage in my mental routine to prepare. My inner chatter commences. You can do hard things. You were made for this. You are a caregiving badass. Tonight will go well. You have enough energy left to do this. You are doing thisContinue reading “Clean Teeth and Kindness”
Conversation for Change 