parenting

I will always be grateful I found our Pompe disease family. It brings me great joy when others find us and join the community, too.  A Facebook blog I made for my 3-year-old son, Cayden, started off fairly small. But over the…

Last week, my 3-year-old son, Cayden, was discharged after a two-month hospitalization due to pneumonia caused by a human parainfluenza virus. Several unfortunate events occurred during this time, and as a result, I’ve been left with a variety of emotions, both good and bad. Coping with…

Being the parent of a special needs child can be difficult in many ways. One challenge is the effect it has on mental health, which makes self-care essential for parents of special needs children. But it also can take a physical toll on the body. One way parents can…

Getting a toddler to understand things is a hard enough task by itself. However, trying to get my 3-year-old son, Cayden, to understand the things he has to go through due to his Pompe disease is even more challenging. Because of Pompe disease, he has been through more hardships than…

All milestones that children reach are important. However, when my son, Cayden, reaches a milestone, it excites me in ways I can’t even explain. When Cayden was diagnosed with infantile-onset Pompe disease at the age of 1 month, I had no clue what to expect. It didn’t help…

One of the hardest things about being a special needs parent is all of the unknowns. Not knowing what tomorrow will look like makes planning things a bit difficult. I am someone who likes to have plans set in stone. However, I’ve had to adjust,…