caregiving

Being a parent can be exhausting. Whether the child is a newborn, a toddler, or even a bit older, there are some days when we hear the alarm go off or wake up to our kids crying and mumble, “Just five more minutes, please!” I knew what I was getting…

Last week, my 4-year-old son, Cayden, had a telehealth appointment with a pediatric psychologist. She works in the behavioral health clinic at the children’s hospital where we take Cayden for all his other specialists. The appointment was recommended by his metabolic doctor, whom we see every three to…

A little over a year ago, I wrote a column discussing the topic of family planning. Recently, we discovered that our family will be growing by one! We have lots of planning to do before my new baby comes next January. Of course, we are happy about the news…

A few months ago, I had to make the hard decision to pull my 4-year-old son, Cayden, out of his preschool class. It wasn’t easy because I knew how much he enjoyed it. At the time, though, his health was at stake. Cayden has infantile-onset Pompe disease, which…

When I became pregnant with my son, Cayden, at the young age of 15, I knew I had to start working as soon as possible. So, the week before I turned 16, I began my job hunt. Getting hired as a teen can be a challenge in itself, and being…

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…

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…

Last week, I experienced every parent’s worst nightmare. When my 3-year-old son, Cayden, woke up the other day, I noticed he was coughing a lot more than usual. I prepared to do what we do every morning: remove his BiPAP machine and deliver his breathing treatments, which consist of…

Oftentimes, a person with a rare disease may struggle with day-to-day activities such as walking, talking, eating, and getting dressed. This is the case for my 3-year-old son, Cayden. At the young age of 1 month, Cayden was diagnosed with a very rare genetic disease known as infantile-onset Pompe…

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…