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I'll Never Give Up Fighting for My Son With Down Syndrome

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“You have to decide, is this the hill you want to die on?”

As the parent of a child with disabilities, people say this to me all the time. People in positions of power – in education, at insurance companies; medical offices. Friends say it. Other parents say it. And I get it. There are compromises in life, all the time. And there are hills I’ve died on in the past, in office buildings, in board rooms; for bosses and clients and coworkers. There are pieces of me on sides of roads all over Europe.

But here’s the thing. When someone says that to me about my son, I look into his big blue eyes and I see his fight. He fought to be able to walk, he’s fighting to talk right now. He fights stereotypes and discrimination every day, and he doesn’t even know it yet — he’s only 3. He fought for his life more than once: for three months in the NICU; before and after open-heart surgery. The fight lives in him, but it lives with grit and with grace and strength I’ve never known.

So here’s what I say. I’m not dying on any hills, not today, not ever. I’m climbing up them and over them and together, we’re getting to the other side. Because he’s my son. And he is worthy. And there’s no hill I won’t conquer to make sure he is treated equally, with dignity and respect. To make sure that he is not just included, but valued. Loved. I hope it won’t always be so hard.

But until then.

Show me the hill.

Originally published: October 10, 2021
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