I Have a Little Secret to Tell the Disorder That Challenges My Family Every Day


Dear Dystonia,

I hate you. You’ve challenged me in ways I never knew possible. You cause exhaustion, pain, frustration, confusion. You leave isolation and fear in your wake. You steal innocent and worry-free childhoods. You make it impossible for anyone to relate to your victims. You work your ways into all aspects of life and into places nobody wants you. You’re mean, you’re unforgiving, you’re relentless.

I hate that we can never beat you, never get rid of you. I hate that you turn the everyday mundane into obstacles. I hate you for taking away my right and ability as a mother to help my kids and make them feel safe. I hate that you cause stress and anxiety and helplessness. But mostly, I hate that you have my kids. They’re sweet and little and perfect, and they don’t deserve you. You’re destructive, and I hate you.

But, I have to tell you a little secret. While you’ve been attacking the people I love most in this world, you’ve unintentionally left behind some unexpected consequences.

When you force me awake time after time, night after night, you give me time. So much extra one-on-one time. Time with no distractions, no phones, no TVs, no toys. Just me and my little boys snuggled up in my bed together. While you were busy causing vomit and pain, you left behind lessons in what it means to truly love unconditionally. While you were busy forcing four people into one bed, you’ve also forced closeness and intimacy. While you were busy causing pain in little boys’ legs, you taught them they can overcome, persist and achieve. While you’re busy making funny postures and movements, I’m learning to read the minute details of my children that would have otherwise gone unnoticed. While you’re busy disguising yourself to outsiders, you’ve taught my kids that their parents will always believe them, even when others don’t. You fostered a trust and a bond I never knew possible. While you were busy trying to stress my marriage, you left us with the true meaning of partnership and commitment. The financial stress caused by your cruelness gave us real life lessons in what it means to prioritize and put family first.

So my dear Dystonia, bring your best. We can take it. Just know that while you’re busy causing pain and irritation, I’ll be busy picking up the little nuggets of gold you’ll be leaving behind.

This post originally appeared on Raising Dystonia.

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