Not Everyone Can Eat Holiday Meals
Thanksgiving and Christmas are often associated with two things: food and family. But what about those who can’t eat?
My 3-year-old son, Cayden, is picking up on the fact that he cannot eat orally. With the holiday season just around the corner, I’m worried about how this will affect him. Previous years were easier because Cayden was too young to really understand what was going on.
Cayden knows he can’t eat orally due to his inability to swallow safely. Instead of swallowing food properly, Cayden’s food goes into his airway. This can cause him to aspirate, potentially leading to pneumonia, which can be life-threatening for people like him who have Pompe disease. Instead, Cayden is fed via a gastrostomy tube (G-tube).
Although Cayden is unable to eat, he still wants to. He’ll whine and point to my food when he sees me eating a meal. Usually, I’ll let him lick things to get a taste, but it’s just not the same as actually eating.
I feel like most people don’t give much thought to those who are tube-fed like my son. It’s not something you come across very often. However, just because it’s uncommon doesn’t mean those people should be forgotten.
Last Thanksgiving, I made sure Cayden got his meal, but in a different way. We have a Vitamix blender that is amazing at blending meals. I blended him up a plate of food and pushed it through his G-tube so that he could enjoy the meal like the rest of us!
This year, I’d like to try doing a craft with Cayden. There are tons of crafts that the whole family can participate in. My hope is that doing an activity together as a family will make my son feel included, since he won’t be able to eat with us.
Another thing I’m eager to try is dancing, which is one of Cayden’s favorite things to do. If we can make up our own dance to a holiday song, I’m sure he’d really enjoy it.
Although this doesn’t change the fact that he can’t enjoy our yummy holiday meal, it may ease his mind and get him thinking about something else.
I don’t know what other activities I can do with Cayden. I plan to reach out to other special needs and rare disease parents to see how they handle the holidays. There’s no one better to ask than those in the same situation.
I want to make sure that Cayden feels included in every way possible, no matter what it takes. Just because he can’t enjoy the meal doesn’t mean that he can’t enjoy the day!
What unique holiday activities do you or your loved ones do each year? Please share in the comments below.
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.
It’s a very important topic because it’s not just the Pompe kids but there’s lots of folks who are stuck with G-tube only feeding. I saw one year somebody took a picture of their family dinner and they had a plate of food in front of the Pompe child at the table , but all the kid could do was look at the food! I couldn’t believe what I was seeing , it’s like torture almost! ….. For years we’ve made it a point to not make the meal the centerpiece , we have the football games going , we have chairs around Phoenix’s computer. We eat together but we don’t make a big deal about it and we don’t spend all night at the dinner table or in the kitchen cooking food. We also don’t go on and on about how good everything tastes we make sure it is sometimes do that using sign language like a thumbs up or just some real subtle complements. we do other activities , whether inside or outside and we try to include Phoenix in. just having family together that he hasn’t seen all year is what it’s all about ,not the food , the food is not the centerpiece. Great topic thanks for sharing !!