Preparing myself for my son’s first out-of-state trip without me
Being separated from a 6-year-old is tough, particularly because he has Pompe
Next week, my 6-year-old son, Cayden, will celebrate something even more exciting than Halloween: He’ll be headed to Parris Island in South Carolina to watch my younger brother, Ben, graduate from the Marine Corps. I’m so thankful that Cayden has the opportunity to watch his uncle celebrate such an amazing achievement.
Cayden and my younger brother have a special bond. I had Cayden when I was just a teenager, so the difference in their ages is just 12 years. I remember Ben expressing to me how odd it felt for him to be referred to as an uncle at such a young age. But he embraced the role with pride and grace, and it’s been delightful to watch the bond between them grow over the years.
While I’d never deny Cayden this experience, it does make me a bit nervous. Cayden will be going with other family members, and I won’t be going along. It’ll be his first time out of the state without me, and it’ll be the longest we’ve ever gone without seeing each other. I’m sure both of these factors would leave any parent stressed, but I have additional concerns.
For starters, Cayden has infantile-onset Pompe disease. Because it’s such a rare disease, most medical professionals aren’t familiar with it. Anytime Cayden is away, I worry that he might have an emergency and need medical attention. If I’m not by his side, how can I explain his disease and everything that comes with it?
Thankfully, we live in an era when technology is right in our hands. It takes minimal effort to make a phone call. If anything were to happen, anyone in my family who will be accompanying Cayden can call me right away, which helps to allay some of my fears.
I don’t doubt that my family can appropriately care for Cayden. But that doesn’t mean I don’t worry. I’m used to being around and making sure everything is done correctly, from his tube feeds to putting on his BiPAP mask at night, and even simple things like getting him dressed.
But I won’t let my fears prevent Cayden from having a good time at this event. He deserves to go, and I know he’ll be happy when he realizes what his big surprise is. My brother will be ecstatic, too. They have no idea what’s in store for them, and I can’t wait to hear about their reactions on the big day.
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
About the Author
Comments