Recent Events Have Taken a Toll on My Mental Health

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by Keara Engle |

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Every time I experience something scary with my 3-year-old son, Cayden, it really takes a toll on my mental health. While this is to be expected, it’s certainly not easy to deal with. 

I fell into a deep depression after Cayden was diagnosed with infantile-onset Pompe disease at just a month old. I was a first-time mother and only 16. When doctors made the diagnosis, I wasn’t sure how to cope with it. 

I remember going days without eating, and crying until no more tears came out. I knew I needed help, and fast. Thankfully, my doctors were able to see me and recommended that I start taking Zoloft (sertraline) again. I wasn’t fond of this idea, because I didn’t like how the medication made me feel when I’d taken it in the past, but I decided to try it again.

It was a big help. It didn’t solve or fix Cayden’s diagnosis, of course, but it helped me cope. I was able to start eating regularly again, and I found ways to smile instead of cry. 

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Making Hard Decisions for My Child With a Rare Disease

Unfortunately, this was just the beginning of my mental health battle. When Cayden got sick the first time at 10 months old, I ended up right back where I started. In the rush to get to the hospital, I had left my depression medication at home. This, combined with the craziness happening to Cayden, really took a toll on me. 

I refused to eat for the first four days because being so mentally drained killed my appetite. I couldn’t do anything except cry and sleep. My dad came to visit Cayden and me, and we had a great time, but it didn’t take the pain away. I was hurting and I didn’t know how to dig myself out of this deep depression. 

When Cayden began getting better I felt like I could breathe again, but Cayden got sick again around the time of my high school graduation, when he was about 14 months old. I almost didn’t attend it, but my son’s doctor insisted that I go. It wasn’t easy faking a smile the whole night, but it did feel great to walk across the stage. Still, I got my diploma, went back home, and burst into tears. All I had been able to think about was my son. I had planned for him to be at my graduation so he could see me walk across the stage.

Still struggling with my mental health

Recently, I have experienced some pretty scary emotions, and I have begun to worry that experiencing so many bad events have resulted in me developing post-traumatic stress disorder. Cayden went into respiratory arrest earlier this month after coming down with both respiratory syncytial virus and rhinovirus/enterovirus, and I know that I haven’t had a chance to deal with my feelings from that experience. They are hitting me now like a freight train. I have also had some very vivid and horrible nightmares, the scariest one was that Cayden was dying. 

In the dream, doctors swarmed the room and started yelling, “Help!” and “His lung is collapsing!” I dreamed the doctors worked on him for what seemed like forever, but my son didn’t survive. When I woke up in his hospital room, I was in shock until I realized it had been just a dream. I looked over and saw Cayden alive and breathing and felt so relieved. But I was still horrified by the dream, and I couldn’t stop thinking about it.

And nothing could have prepared me for the emotions I felt when I came home the first time following Cayden’s respiratory arrest episode. Walking through the front door and seeing trash from the medical supplies scattered all over the living room was too much. I broke down in tears. I couldn’t stop thinking about what had occurred in that very room just a few days earlier. When I walked into Cayden’s room, I remembered the sight of his blue and lifeless-looking body lying in his bed. It’s an image that will haunt me forever.

I have to keep reminding myself that, while it did happen, it is now in the past. 

Mental health can be a struggle for anyone, but especially parents of children with rare diseases. We deal with a lot. Reaching out to a doctor for help was the best decision I could’ve ever made. I plan to see a therapist after Cayden is discharged from the hospital. There’s nothing wrong with getting help, and I’m thankful I’ve been able to realize that.

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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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