For years, I feared that I’d outlive my daughter. And then science did something amazing.
the washington post logo

After her diagnosis, my daughter’s daily routine was daunting. She took more than a dozen prescription drugs, including pancreatic enzymes at every meal to digest her food. She learned to swallow capsules as a toddler after watching me take a birth control pill. We celebrated with high-fives when she made her enzyme “all gone.”

She did twice-daily respiratory therapy, breathing a nebulized cocktail of drugs to thin the mucus in her airways, while an oscillating vest on her little body shook the mucus loose. When she was small, we pounded on her chest and back with cupped hands, distracting her with videos of “Barney & Friends.”

My husband and I worked as a team. We acclimated the way parents do when living with chronic illness, a current of anxiety always humming in the background. As her mom, I was more than a caretaker. I was the eyewitness, record-keeper, connector of dots, making sure every doctor, nurse, insurance provider, pharmacist and teacher was aligned.

Our family life was structured around my daughter’s disease, a constant checking of boxes — meds refilled, therapies completed, blood tests and chest X-rays scheduled, pulmonary checkups every two months.

Read more in The Washington Post.

Written by External Article
Everyone is talking about caregiving, but it can still be difficult to find meaningful information and real stories that go deep. We read (and listen to and watch and look at) the best content about caregiving and bring you a curated selection. Have a great story about caregiving? Use our contact form to submit it to us so we can share it with the community!

Related Articles

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

0 Comments

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.