Writing Archives : Emma Nadler

I am well acquainted with loss and the isolation it brings. As a therapist for over 15 years, I have helped people deal with their losses. And as a caregiver for my daughter for almost a decade, I have been dealing with my own loss.

My child was born with a rare genetic condition and lives on a feeding tube. Since she requires around-the-clock care for her medical needs and severe autism, I have been isolated on holidays, shut in for days and lived for stretches in hospitals. As a caregiver, I lost the relationship I thought I would have with my daughter, the joy of digging into meals as a family (since my child is not able to eat by mouth), and the ability to attend events and go on vacations together. Since my daughter will require care for the rest of her life, our future looks entirely different from how I expected.

My loss is an ambiguous loss, a term coined by Pauline Boss, professor emerita at the University of Minnesota. It refers to an ongoing loss with lingering, unanswered questions. An ambiguous loss can be something that many people experience, such as when a teenager leaves for college, or one that only some experience, for instance, Alzheimer’s or severe mental illness.

Read the full essay on Washington Post. com

Artwork by Celia Jacobs for Washington Post

Writing

Caregivers Are Invisible. They Shouldn’t Be (Newsweek)

Eight years ago, I unexpectedly joined the other 38 million unpaid caregivers in the United States. The AARP estimates that 11.5 percent of the U.S. population are caring for family members in 2023. We are many, and somehow, we are still grossly overlooked and under supported in nearly every way.

My daughter, Eden, now in second grade, was born with a rare genetic deletion—so rare it does not have a name. She lives on a feeding tube, endures various chronic medical challenges, cognitive impairment, severe autism, and requires around-the-clock care. The genetic testing I completed during pregnancy had not indicated any atypical trajectory.

The level of care that Eden, our second child, needed jolted my husband and I into sleepless nights, exhaustion, and ongoing uncertainty about the future. Because of her autism, it is hard for my daughter to go places—even the library generally ends poorly because of her tendency to bop unsuspecting bystanders with her tiny fist or drop to the floor insect style on her back and thrash. Coupled with her medical issues, I have often felt like a shut-in over the past almost-decade since she was born—I have missed countless social gatherings, activities and events for my other child, and even everyday outings like going to the grocery store as a family. Our house looks and runs like a very loving, slightly disorganized hospital, complete with the syringes, nebulizers, and medications to prove it.

Read the full essay on Newsweek.com