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The Caregiver Cancelled…Again

Remember a few years back when CANCELLED was heard regularly on social media and on the news? For one reason or another, it was like everyone was getting cancelled. Actors, hosts, comedians, and politicians were cancelled. It was raining cancellations! No one was immune, but in the world of disability and disability care, cancellations haveContinue reading “The Caregiver Cancelled…Again”

Grief, Loss, and Lots of Thoughts

I opened the Wordle game and typed in G.R.I.E.F. as my starting word. I usually start with the first word that comes to mind each day. Today, that word was GRIEF. I was thinking about the concept of grief and the rules about grief. Sometimes society seems to put loss into categories with corresponding grief scales.Continue reading “Grief, Loss, and Lots of Thoughts”

Emily Goes to the Lizzo Show

For all of you who came back this week to get the Lizzo concert 411, I want to say THANK YOU. I appreciate the support I received via texts, calls, and posts prior to the event. The encouragement and cheerleading did not go unrecognized and were needed. I barely slept on Thursday night. The anticipationContinue reading “Emily Goes to the Lizzo Show”

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”

Celebrate Doing Less and Connecting More

Sunday, May 21st was World Meditation Day. I had planned to attend Michael O’Brien’s live class on his Pause Breathe Reflect app. I was looking forward to the meditation. There is something magical about meditating live with others and Michael has created an incredible space and community. The collective energy is indescribable. It is fuelContinue reading “Celebrate Doing Less and Connecting More”

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”