parenting

Reaching a Milestone as We Prepare for Kindergarten

Soon, I will attend a meeting to discuss transitioning my 4-year-old son, Cayden, to elementary school during the next school year. I’m both nervous and excited about the meeting and the transition. I knew this day would come, but it feels as if it snuck up on us faster than…

LOPD Diagnosis of Newborns Requires Support for Parents

Parents of children with late-onset Pompe disease (LOPD) that is identified via newborn screening report not receiving enough information, guidance, and support, which leads to feelings of frustration and anxiety. That’s according to the study “Newborn screening for Pompe disease: Parental experiences and follow-up care for…

A Single Mother With a Broken Foot

I’m no stranger to our local urgent care clinics and hospitals. Usually, my 4-year-old son, Cayden, is the patient. Last week, however, it was my turn to need medical help. I had an unexpected fall off a friend’s porch steps and immediately felt the pain. This is my first time…

Potty Training My Special Needs Child

Last week, I started the dreaded process of potty training my son, Cayden, who turns 4 years old next month. I realize we started this process a bit later than most parents do, but we have our reasons. Cayden has infantile-onset Pompe disease. Some of the symptoms include muscle…

Trying to Fit In as a Teenage Rare Disease Parent

I was 16 when I had my son, Cayden, in 2018. Being a teen parent brought its own set of challenges. I had to leave public school and finish high school online. I also lost many friends, because most teenagers like to spend their weekends having fun, not cooped…

Teaching Children That Not Everyone Is the Same

I take pride in teaching children about disabilities. The earlier they learn, the better. These small lessons can be very beneficial as children grow up and learn that everyone is different.  My 3-year-old son, Cayden, is only 15 months younger than my little brother, Larry Jr.,…