help

Checking off a childhood dream: Riding a wave, despite my disability

While growing up in Southern California, I spent nearly every day in the summertime with my friends at the beach. We’d excitedly grab our towels and boogie boards and set out for one of the many beaches within 30 minutes of where we lived. But during all those summers, I…

I’m Thankful I Can Depend on My Family for Help

When you have a child with a rare disease, it can be difficult to find people who are both comfortable and willing to care for them. It’s been a challenge to find people I trust enough to watch my 4-year-old son, Cayden, who has infantile-onset Pompe disease. Cayden…

How Family and Friends Can Help During a Hospitalization

I’ve previously discussed how doctors and nurses can help in difficult times of health crises. But family and friends can be a big help, too. My 3-year-old son, Cayden, has been hospitalized in recent weeks, so I’ve pondered some of the ways that my family and friends have…

Self-care Is Essential for Special Needs Parents

As special needs caregivers, we have many responsibilities. From the moment we open our eyes in the morning until the time our heads hit the pillow at night, our primary focus is caring for our child and their needs. While there’s nothing wrong with that, it can be…