After the Shock

05/04/2020

"If you want to fly, you have to give up the things that weigh you down." ~ Toni Morrison

Times of disruption can cause us to feel sluggish and "heavy". It's important to pause and see what's making you feel that way. Perhaps you can adjust routines or expectations to lighten your load. Even if you can't soar, you may be able to glide.

04/06/2020

The shared journey helps us to familiarize the unnatural and the unknown. It is important to make the distance between us only physical during this pandemic.

03/25/2020

Is this how you are feeling right now? It may be uncomfortable, but it is normal when crisis is compounded by uncertainty. You will start to "refill" more easily if you accept your feelings as valid, talk to someone who lets you be honest without interrupting or advising, and allow your emotional cartridge to refill at its own pace.

01/21/2020

"We must learn to regard people less in the light of what they do or omit to do, and more in the light of what they suffer."
- Dietrich Bonhoeffer -

Memory, clarity, and decision making are all affected by crisis. If someone breaks a promise, makes a poor choice, or lets you down, take a look at their circumstances. They may be dealing with upheaval in some part of life. Try offering encouragement rather than criticism.

01/07/2020

Working on "how" rather than searching for "why" equips us for experiences beyond the imaginable. Many thanks to my rare disease colleague, Parvathy Raman Krishnan, for discovering this article.

Heather McCain

08/13/2019

Excellent guidance for anyone providing support during a crisis.

"The best thing I can tell you about the dogs is that they're not judgmental. They don't ask questions." ~ John Hunt, co-founder of Crisis Response Canines.

08/12/2019

"Grief and resilience live together." ~ Michelle Obama

It is natural to want to skip over grief and magically "bounce back" to resilience...but life doesn't work that way. As we make our way through the lessons, the hurts, the blessings, and the gradual strengthening that comes from moving through grief, resilience grows like a plant arising naturally from the earth. Trust the process, even when all you see is mud.

07/06/2019

Have you ever struggled to talk with a child about death? Have you ever had to overcome loving, but poorly stated explanations of death from your own childhood?

This sensitive, practical article provides wording to help you be kind and honest with a child at an unsettling time.

Whether it's a goldfish or Grandma, every child will encounter a death at some point — and their parents will likely struggle to explain it. NPR's Life Kit and Sesame Workshop have 6 insights to help.

03/20/2019

: "Balance is baloney. Resilience is real."
~ Eileen McDargh, experienced caregiver who is also an international speaker, author, and my sanity saving friend.

03/18/2019

Never underestimate the power of community, especially when your life and/or work puts you in the category of "rare". This photo includes patients, caregivers, physicians, researchers, legislative policy educators, patient advocates, and counselors all focused on the rare disease community.

Villages are important for more than raising children. Be sure to find your village when you feel rare or isolated. Chances are that someone else in that category needs you too.