Explaining Hard Topics to My Rare Disease Toddler

Keara Engle avatar

by Keara Engle |

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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 anyone should have to endure in a lifetime. He doesn’t understand why he must be stuck with a needle to access his port. However, I know the reason for it is that he must receive an enzyme replacement infusion every week to stay alive.

I have to explain this to Cayden in ways he’ll understand. For example, I’ll say things like, “It’s time to get your muscle juice for your Pompe!”

Another thing he doesn’t understand is why he can’t eat the same way other people do. Instead of eating orally, Cayden is fed through a gastrostomy tube, or G-tube. This is because his ability to swallow is very weak, and he will aspirate food and drinks.

He gets frustrated when he sees other people eating orally. This is when I have to explain to him that he can’t eat with his mouth. Some things I say are, “Remember, you have to eat through your tube,” and, “You can’t eat with your mouth because we don’t want you to choke.”

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One more thing that Cayden doesn’t like is his breathing treatments. Once or twice a day, he has to use cough-assist and suction machines. This is due to the weakness in his lungs that Pompe disease causes. Doing breathing treatments every day helps his lungs stay as strong and healthy as possible. One way I explain this to him is by saying, “You have to do your breathing treatments to keep your lungs as strong as Catboy,” which is a superhero from his favorite television show, “PJ Masks.”

Lastly, Cayden gets jealous seeing other children his age running around, playing, and doing things he physically cannot do. While I try to find fun activities for him to do, too, some things simply aren’t the same. This is one of the hardest things to explain, but I try to find easy ways to do it. Sometimes I’ll say, “I know you want to do what they are doing, but how about we do something else that’s easier for you and your body?”

It hasn’t been easy to explain these types of situations to him, but it needs to be done. I can’t just tell him that he can’t do something, because that’s unfair. I have to explain why he can’t do an activity, and why he has to do some of the things I’ve mentioned. Being a special needs parent comes with a lot of challenges, and explaining these types of situations has been one of the most challenging things I’ve had to do by far.

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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.

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