Being apart from my children is difficult as a Dravet parent

Even though my daughter's in good hands, I can't help but worry

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by Meagan Earley |

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I’ve never liked being away from my children. Even before Austen, my 9-year-old with Dravet syndrome, got sick, I didn’t spend a lot of time away from my kids.

Being a mom is one of my greatest joys in life.

Before my divorce, in fact, the longest I’d ever been away from Austen was three or so nights, just a few times in her entire life. I’d only been away from her siblings for longer when Austen was admitted to the hospital.

When my kids aren’t around, I feel like part of me is missing — like there are three child-size gaps in my soul.

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This feeling becomes especially hard in divorce. My children’s father is obviously allowed his time with them, and I have to accept that. So as the school year ended and summer began, I braced myself to be kidless every other week. Seven mornings without sleepy cuddles, seven nights without goodnight prayers.

The thing is, my anxiety doesn’t go away when my children aren’t with me. In fact, I feel even more anxious about what could happen when I’m not there. What if Austen seizes? Will someone check on her in the morning to make sure she’s still breathing? Will they remember her medicine?

Listen, I know I sound like a control freak. My therapist once told me it’s a coping mechanism because Dravet syndrome has left me feeling as if I’m not in control. The disease always has the final say in our lives.

I know I have to deal with these feelings because my children deserve to spend time with their dad, too.

So I keep myself busy. I organize, declutter, and deep-clean my house. I tackle all the projects I’ve left undone throughout the school year. I read books I haven’t gotten to and catch up on the latest season of my favorite reality TV show. And sometimes I cry. I let myself miss my children, and I remind myself that they’ll be home soon. I tell myself it’ll get easier, and I reassure myself that they’re having fun.

Sunday will be here soon enough. I’ll fill the next week with all the hugs, cuddles, and memories I can while I have my kids. I’ll store them in my heart to get me through the next week when they’re gone. And when they come back I’ll do it all over again, because it’s what’s best for them, and they’re all that matter.

Note: Dravet Syndrome 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 Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.


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