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The Intensity of 'Empty Nest Syndrome' When Your Child Has a Chronic Illness

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Am I having problems letting go? Letting go of handling my daughter’s health issues?


The term “empty nest syndrome” is used a lot as our kids move into young adulthood. When your child with lifelong health issues leaves, those emotions are compounded. I call it Empty Nest on Steroids!

According to an article in Psychology Today, “People want their children to grow up and lead independent lives. Yet parents often feel lonely, sad, and filled with grief when their children depart.”

I feel all that and more! My job had been to keep my daughter alive and make sure she had the best care. I had to make sure she is thriving, not merely surviving. That’s it. I should be grateful she can take on her own healthcare needs now, but I am left with so many questions about my purpose in life.

What do I do now? What is my job? What do I do with my time? Where does all this knowledge and information go?

I spent hours and hours researching her various health conditions. I educated her cardiologist about her heart defects and her genetic disorder. The orthodontist put on her braces just before her growth plates closed as I asked. The endocrinologist took my lead when it came to combining growth hormones with estrogen replacement. My cardiac knowledge contributed to the latest Clinical Practice Guidelines for Turner Syndrome.

According to the American Academy of Family Physicians, “Clinical practice guidelines are statements that include recommendations intended to optimize patient care that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options.”

I’ve done all the “right” things to prepare her, but my emotions are having a hard time catching up with this change in reality.

We’ve been preparing her to take over her health issues since she was 16. Check.

She took charge of another new diagnosis at 18. Check.

When she went to college, she took over all her medicines and almost all her doctor appointments. Check.

She made the final choices on surgical repairs to be made and which surgeon would perform her open-heart surgery at 20. Check.

She started medical school and attends her cardiac appointments. Check.

She is responsible for all her healthcare needs, but there is a tiny bit of me that wants to hang on. When her boyfriend who is studying pharmacy asked whether she’d taken a certain at-home blood test, I knew it was time to let go.

Getty image by Gorlov.

Originally published: October 17, 2020
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