My son with Pompe disease is suddenly refusing to leave my side

A columnist worries that her child is experiencing anxious attachment

Keara Engle avatar

by Keara Engle |

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Typically, my 5-year-old son, Cayden, who has infantile-onset Pompe disease, has no problem going away with family for the weekend. He used to spend weekends with either my grandparents or his paternal grandmother. But that’s changed, as he now refuses to leave my side.

It all started a few weeks ago. He went to my grandparents’ house on a Friday like usual. After a few hours, Cayden called me screaming and crying, saying, “I want my mama.” It was already 8 p.m., so we got him to agree to stay for the night, thinking everything would be better in the morning. That wasn’t the case.

The following day, Cayden was even worse and begged to come home. However, this was also the same weekend he started developing a fever after his first week at preschool. I picked him up from my grandparents’ house and headed straight to the hospital. After a short, two-day hospitalization, he came home.

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I figured he’d only been acting that way because he wasn’t feeling well, but boy, was I wrong! The next weekend, he went to his paternal grandmother’s house for what was supposed to be an overnight stay. But once again, Cayden called me screaming and crying, telling me he wanted to come home. It was even worse this time. Instead of having him tough it out for the night, I had his grandma bring him back home.

When he got here, all the crying was over. He kept telling me how much he missed me and his baby brother, Kyree. It broke my heart to see how upset he was about leaving us. I’m not sure what’s going on, as this has never been an issue before, but it seems like he might be experiencing anxious attachment, which Psych Central defines as a “fear of abandonment and need constant reassurance from your loved ones.”

Now it’s a fight to get him to go to preschool. He typically goes five hours a day, Monday through Friday. He was so excited for his first week, but now he’s telling me that he doesn’t want to go and wants to stay home with Kyree and me instead. He whines when I drop him off each day. However, he must go to preschool as long as he isn’t sick. The education and social interaction from his peers and teachers are crucial, since he’ll be starting kindergarten this fall.

Is it associated with his medical challenges?

I have a feeling that his anxiety stems from everything he’s been through over the years. Due to Pompe disease, Cayden experiences hardships that most adults have never faced. I was unable to be with Cayden during some of his recent hospitalizations because I’d either just given birth to Kyree or was sick and feverish. I think Cayden’s scared that if he leaves my side, he might not see me again for a few days.

His fears are completely valid, but they’re not easy to address. I’ve tried to explain to him why I couldn’t be at the hospital, but he just can’t wrap his little 5-year-old brain around it all. I also tell him that it’s OK to go away for the weekend, and that Mommy will see him again in a day or two, but he’s just not having it.

The weekends used to be my time to catch up on sleep and get the house back together after Cayden spent all week making a mess. It doesn’t look like that’ll be happening again anytime soon. I’ll wait a few weeks before trying to get him to go away overnight again because his mental health and feelings matter most.

My hope is that this new development of anxious attachment won’t last too long, but I’m not sure that’ll be the case. I agreed to let him stay home this past weekend because I don’t want a repeat of the last two times he went away. He loved being at home, but I admit that I missed the break a little bit.

Being a single mom to two young boys can be exhausting at times, but who said life would be easy?

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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