Defying the odds, Amy never thought she’d be able to have children. Her pregnancy was high-risk due to her own medical issues. However, she made it through her first trimester of pregnancy and was ready for an ultrasound at 18 weeks. Amy didn’t expect the doctors at her local hospital to tell her that her daughter would never walk or talk.

Caring for a chronically ill child can be emotionally perilous. As a rare parent, Laura knows that sorrow naturally slips into moments of joy. By practicing and sharing gratitude, Laura gains control and eases those moments of fear and grief. Discover the power of gratitude and learn how the act of giving thanks transformed the way Laura experiences her husband, her children, and her day-to-day life.

As we welcome 2022, Laura Will chooses self-compassion as her New Year’s resolution. She delves into the description of the three key elements to self-compassion, revealing its many benefits. Instead of using self-critical thoughts to guide another transient resolution, Laura invites us to honor our imperfect and emotional selves, to practice self-kindness, and to channel some caring energy inwards.

After her infant son was diagnosed with a rare brain malformation, Laura had an identity crisis. She was no longer just-a-mom, but also a family caregiver. Although this newly acquired title may be emotional and exhausting at times, Laura discovered in herself unforeseen skills and a remarkable strength. She delves into the description of the four states of a caregiver’s identity and creates a beautiful metaphor for this extraordinary role.

Auch wenn ich mich nicht auf die zukünftige Gesundheit meines Kindes verlassen kann, habe ich Dinge gefunden, denen ich vertrauen kann: seinen Ärzten, seiner persönlichen Betreuungsperson, meinem Partner, der Kaffeemaschine, dem Lachen und meinem Wunsch, mich um meinen Sohn zu kümmern. Die Dinge zu benennen, denen wir vertrauen, kann uns ein gewisses Gefühl der Kontrolle geben. Mit diesem Vertrauen bleibt die Angst in Schach, und wenn wir aufmerksam sind, beginnen sich kleine Momente der Hoffnung vor uns zu entfalten.

Rare Resiliency is a monthly column written and/or curated by Laura Will. This column explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy.

The mental health community defines complicated grief as a severe form of mourning that doesn’t resolve with time. In this article, Gina D. Wagner expresses her experience with complicated grief after the loss of her brother who lived with Prader-Willi syndrome along with what she’s learned along the way.

Gina Wagner grew up with a brother with unexplained behaviors and health concerns which were later explained as to be symptoms of Prader-Willi syndrome. In this piece she shares 3 things she wishes she would have known.

Howard Wooley shares what he learned about caring for his wife who had sickle cell disease.

Gail Campbell Woolley (1957-2015) grew up in Washington DC, and was diagnosed with sickle cell anemia at age seven. Her book, Soar: A Memoir, published posthumously by her husband, details her heroic defiance against sickle cell disease.

When I first started expressing concern about Alden’s development, everyone told me not to compare Alden to his big sister, Hadley. I was not comparing. As a mother and a nurse, I knew in my gut that something was seriously wrong. After weeks of second guessing my instincts, I finally caught one of Alden’s atypical movements on video. It was Memorial Day, 2020. He was 4.5 months old. I sent the video to the on-call doctor at his PCP office, who took one look at it and asked us to please bring him into the emergency room immediately. Forty eight hours, an EEG and an MRI later, our family was forever changed.