Relationships

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…

Things seemed to be happening so fast as 2018 was ending. But it would go down in my books as the worst year of my life. Seven months earlier, back in April, we lost our oldest son, Adam, to a brain tumor. He was only 22 years old and full…

Family reunions are big and important events on my dad’s side of the family. Not long ago, my grammy (grandmother) got to host our first family reunion in two years. We usually have a family reunion every year, but during the COVID-19 pandemic, that didn’t happen. I was ecstatic…

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…

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…

Every doctor, nurse, and respiratory therapist has to start off somewhere. They don’t just jump right into their position. People trained in these occupations must complete years of medical school, and undergo extensive training at a medical facility.  Over the years, my son, Cayden, 3, has…

The holiday season is upon us again, which has me thinking about the many times in the past couple years that my 3-year-old son, Cayden, and I have missed holidays due to emergencies. Cayden has infantile-onset Pompe disease, which has landed us in the hospital more times than I care…

Getting a six-and-a-half-hour enzyme replacement infusion once a week can be stressful. And I’m not even the one getting it. My son, Cayden, 3, gets an infusion called Lumizyme (alglucosidase alfa) to treat his infantile-onset Pompe disease. While the infusions have become routine for…

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…