parenting

In the weeks after my youngest daughter, Bella, was diagnosed with neuromyelitis optica (NMO) in 2017, work and finances weighed heavily on my mind. I’d started a new job a month before Bella got sick, so I didn’t have any paid time off and didn’t qualify for the Family…

Five years ago, Aug. 28, 2017, began like any other day. I had taken the day off work to run errands, and I got up early to help my youngest daughter, Bella, get ready for school. She had just started fourth grade at a new school and had a long…

This week, my sweet girl, Sophie, has turned the big 10. I’m feeling all verklempt because they told me she couldn’t exist. But doctors are wrong sometimes, and I’m glad I trusted my gut. Twelve years ago, little information was available about neuromyelitis optica (NMO), and even less about…

In the five years since my daughter Bella, 14, was diagnosed with neuromyelitis optica (NMO), I have just barely come to accept that we may never know how or why she developed the disease. As Bella’s mom, I’ve spent countless sleepless nights filled with guilt and worry that something…

August 2017 was a busy and exciting time for our family. My youngest daughter, Bella, and I had just spent the weekend helping my oldest daughter move into her dorm room and begin her freshman year of college; my son had just begun his freshman year of high school; Bella…

Let’s talk about sleep. Sleep is essential for everyone, as it allows our bodies to rest and recharge, especially after a long day. According to the Mayo Clinic, adults need seven or more hours of sleep each night, while the recommended amount of sleep for teenagers like my 14-year-old…

People say that dogs are man’s best friend. In our family, Roxy, our 3-year-old Australian ridgeback rescue, is my 13-year-old daughter Bella’s best friend. Bella has always loved animals, which thankfully runs in the family. When she was hospitalized in 2017 due to a major neuromyelitis optica attack, she…

Today begins NMOSD Awareness Month, and to say that I have been busy preparing is an understatement. During the past month, in a push to have NMOSD Awareness Month recognized in all 50 U.S. states, I have applied for proclamations in my home state of Colorado, as well as…

In my family, I am the third child of four, the daughter of proud, immigrant parents. I grew up in small towns until I finally relocated to Toronto in my early 20s. Growing up, I only knew one kid with an illness, and she entered my life as quickly as…

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…