by Sarah Lango
This was originally published by Sarah Lango on July 20, 2020. It is republished here with the author’s permission. This first appeared in The Havok Journal on February 5, 2021.
“Is she breathing?” My 7-year-old son asked as nonchalantly as one would ask “what’s for dinner?” Or “how’s the weather?”
He knelt beside his little sister pressing her oxygen mask to her face while her body jerked about in a Convulsive seizure. Her abdomen was tight and her breathing shallow.“Is she breathing?” He asked— As if that was a normal question.
And that’s when the reality of this life for him hit me like a ton of bricks… Sometimes I think the siblings get left behind. But this journey belongs to him as much as anyone else. He knows so much more than I did when I was seven.
He has experienced so much more—- more trauma to be honest. Since he was just a toddling two year old he has watched for seizures, and yelled for mom, and learned when to occupy himself and when to try to help.
He asks “is she breathing?” because he has heard me ask that same question a hundred times. Sometimes just as calmly. Sometimes through panic and tears. And his response also varies.
While I find myself often fighting to normalize his life—I also find myself wanting to shout HE is not normal. These kids, the siblings of special needs/medically complex children— they are extraordinary.
They carry burdens many know nothing of. They hold responsibilities many would never recognize. They whisper prayers and run for help and watch in ways that many will never experience… And this was my reminder— don’t leave them behind.
Don’t leave them out of a journey that is already woven through their lives. Recognize the ways it has broken them— and also the ways it has made them so much better. Let them talk about it. Answer their questions— even the hard ones.
And never forget— these siblings aren’t normal. They’re extraordinary.
Sarah’s bio can be found here. Get Sarah’s free eBook “Escaping Survival Mode” when you subscribe over at www.gracefilledgrowth.com
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