A Letter to My Son's Seizure Disorder
Dear Seizure Disorder,
I hate you. I can’t begin to describe how much I despise you. Our son was already facing a host of challenges when you showed up and took over our lives. You added meds, treatments and long hospital stays. You took away my son’s ability to sit up, roll over, kick his legs and hold up his own head. I hate you.
As an adoptive parent of a child with Down syndrome, I thought we were ahead of the game. We expected some challenges and jumped into therapy and skipped the surprise diagnosis discovery that biological parents have to go through. But then the seizures showed up, and we were thrown into the deepest, darkest place in this giant ocean of grief — the one we try to keep our heads above the waves in. We watched as our son slowly deteriorated. Now, instead of wondering how long it will take him to reach milestones, we wonder if he ever will. Our talks have gone from therapy equipment to G-tubes, tracheostomies and vesicostomies.
But here’s the thing you horrible disease… you won’t win this war. The reason? The more you throw at us, the stronger you make us. People typically outgrow you by age 3, and my son is almost 1. You have two years to do what you will. In that time we will fight you with meds, with diet, with therapy, with sheer will and endurance. Some day you will give up, and we will be left standing stronger than we ever thought we could be. And you know what? Our son is starting to move his legs again. He’s trying to lift his head, he’s full of smiles that we haven’t seen in a long time. You’ve won the last few battles, but we will win the war. He’s coming back to us as you disappear.
So I say to you seizure disorder, I will not let you define my son or my family. We won’t live our lives in fear of you, and we won’t change our dreams and our goals based on what you might do to us. Some day, the horrible video of you on my computer that the doctors make me keep to share with your therapists will be deleted. I won’t give meds, I won’t grieve in your wake, and I won’t stay awake wondering what you took from us as our son sleeps you off after each of your attacks.
I hate you, seizure disorder, and I always will. I’m not sure that I will ever come to accept you as a part of my life. Instead, I will fight you and count the years, months, weeks, days, minutes and even hours until you’re gone. I will not thank you like many people do, for teaching me something along the way. You’re nothing but trouble. I don’t feel like a better person because I’ve faced you. But I do thank the thousands of people who have prayed with us to eradicate you, to make you disappear. I’ve learned through them that we’re loved somuch and that you can’t change who we are. I’ve learned that God doesn’t leave me in the worst of my circumstances and that He can make some good come of even the situations as bad as the ones you create.
So until we meet again, I will not let you take up residence in my thoughts and keep me awake at night. It’s only a matter of time, and we’re coming to get you. We will win, and you will lose. We will follow our dreams and make goals, and nothing you try to do can stop us!
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