Hard is the Path to Memorable Moments

There are so many things that I would love to do with Emily. There are places I think she may enjoy experiencing. Sometimes, I contemplate taking her on adventures to do some of these things. I think about taking her to a movie, a show, or a concert. I am really good at talking myselfContinue reading “Hard is the Path to Memorable Moments”

Disability and the Church: Our Family’s Story

When I was pregnant with Justin, I met a neighbor who was pregnant too. It turns out our children were due less than a week apart. We became fast friends. One week she invited us to attend her church. Todd and I had never attended church together in our marriage. I would go alone atContinue reading “Disability and the Church: Our Family’s Story”

Intellectual Disability and the Dreaded Question: Is She in Pain?

Fear. Panic. Helplessness. Those are the feelings that swept over me as I lifted my daughter up from the toilet seat. There’s so much blood. I cleaned her up and washed my hands. I grabbed my cell phone, took a photo of the bowl (really), and sent it to Todd. He helped calm and groundContinue reading “Intellectual Disability and the Dreaded Question: Is She in Pain?”

Caregiving: A Group Project, Not a Solo Mission

During the pandemic lockdown, I shared the mental impact of isolation on our family. Emily was agitated, distraught, and angry. I was beginning to experience the taxation on my body, mentally and physically, as our family navigated the world with a limited supply of support and services. When schools reopened, and Emily’s after-school program resumed,Continue reading “Caregiving: A Group Project, Not a Solo Mission”

Can Caregivers Win the Numbers Game?

Extreme caregivers have more days that can feel overwhelming, stressful, and exhausting than most people. We also know our mind wants to protect us, and it wants the path of least resistance. This can be a challenge. Challenging days are stressful, and our brain wants to relieve our suffering as quickly as possible. As IContinue reading “Can Caregivers Win the Numbers Game?”

Extreme Caregiving Can Influence Our Choices

I was recently described as an extreme caregiver. I was unfamiliar with the term and unsure if it was an accurate description. Anything that includes the word extreme is not something that I find relatable. I am moderate in most things. What is extreme caregiving, and does the label fit? Lisa Freitag, the author of Extreme Caregiving: TheContinue reading “Extreme Caregiving Can Influence Our Choices”

While You Complain, Let Me Explain

It takes a lot to get me fired up. I generally let people say what they want without inserting my thoughts and opinions. I let things roll on by and if I don’t like it, I hit the DELETE button. This week I read a post on social media that annoyed me, but I didn’tContinue reading “While You Complain, Let Me Explain”

Creating a Moment of Care in the Chaos

Raising children is accompanied by a list of never-ending tasks. The to-do list is never finished. When our child (or adult) has complex developmental or intellectual disabilities, the list is long. We are expected to work a full-time job, maintain the home, transport our kids to countless therapy and medical appointments, along with school andContinue reading “Creating a Moment of Care in the Chaos”

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”