Dogs, Beards, Emily, a Wedding, and God

Looking at all the incredible photographs from this past weekend fills me with gratitude and joy. My favorite nephew (please do not tell the others), Collin got married. The wedding was in Santa Barbara. The weekend included the rehearsal dinner on Friday followed by an incredible cocktail party on the rooftop of the Hotel Californian.Continue reading “Dogs, Beards, Emily, a Wedding, and God”

Time Lies

It’s only an hour, I thought. How can an hour be so disruptive? I was on a Zoom call with Bobby Kountz this weekend and he was discussing Timelines and said Time “lies”. He was discussing how we often take time for granted. We postpone things until something happens or changes. We tend to kickContinue reading “Time Lies”

Sorting the Pieces

Imagine a large granite table with four different puzzles on it. Each is 1,000 pieces, and every puzzle is unique. Your mission, should you choose to accept, is to complete the puzzles. There is ample time to finish the task, and you enjoy solving puzzles. You accept the challenge with excitement and enthusiasm. As youContinue reading “Sorting the Pieces”

A Letter of Gratitude to The Wiggles

This morning Todd and I were trying to reset Emily’s FireTV. Nothing we did seemed to restore YouTube. We worked at it for what felt like hours, but it was only ten minutes. What are we going to do if we cannot get this fixed? How will we survive without The Wiggles? Todd and IContinue reading “A Letter of Gratitude to The Wiggles”

Apply Grace and Grit Liberally

Recently I created a short video for We Are Brave Together. The prompt was to share a piece of helpful advice for moms with children diagnosed with a disability. It was easy to talk about the two things that have helped me the most on my journey. I am talking about grit and grace. TheseContinue reading “Apply Grace and Grit Liberally”

Action Lessens the Fear

The last few days, I have not slept well. I have been tossing and turning. Waking up often and having bad dreams. I think Oprah said, “When you know better, you do better.” Well, Oprah, I disagree. My toolbox is full of techniques and protocols to optimize sleep. You can have ample knowledge, but ifContinue reading “Action Lessens the Fear”

Be a Unicorn or a Craig

Effie Parks, the amazing woman behind the Once Upon A Gene podcast, recorded a special Thanksgiving episode: Turkey Soup for the Soul. This year’s episode was focused on people who went above and beyond to help a family caring for a child with a rare genetic disorder. While Emily is not diagnosed, yet, I submittedContinue reading “Be a Unicorn or a Craig”

Caregiver Burnout: Understand it. Prevent it.

Caregiver burnout is a state of physical, emotional, and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able, physically, emotionally, or financially. ManyContinue reading “Caregiver Burnout: Understand it. Prevent it.”

A Care Plan is Vital for Caregivers

We must take care of ourselves so that we can care for others. We cannot pour from an empty cup, yet we try. Todd and I have worked hard to develop a care plan. We have created a community to support our family. This allows us time to take care of our needs. AbilityFirst isContinue reading “A Care Plan is Vital for Caregivers”