I used to describe Penny as a girl with light brown hair and big green eyes, who loved reading and dancing. And then I would write something along the lines of, “Oh, and she happens to have Down syndrome.”
The sentiment behind my words was a good one. I wanted people to see her, not stereotypes related to her condition. I wanted to emphasize the truth that she exudes particularity. She is her own person and she is not the same as anyone else with or without Down syndrome. I wanted to honor her.
Our Daughter Doesn’t “Just Happen” to Have Down Syndrome
But she doesn’t just happen to have Down syndrome. Down syndrome is a condition caused by the presence of a third copy of the 21st chromosome in every cell of Penny’s body. That distinction affects her in all sorts of ways.
Some of the ways it affects her are hard: she needed a heart procedure when she was 14 months old and tubes in her ears 5 times over. Some are inconvenient: she’s only 4’6” tall and it is hard to find glasses that fit her narrow nose bridge and she’s lived with various minor sensory processing issues throughout her life. Some are fun: she loves the flexibility that comes with lower muscle tone and still shows off her ability to do the splits whenever she can.
Some are beautiful: She accepts other people for who they are. She can’t hold a grudge. She forgives readily. She laughs at herself easily. And I know all of those things can’t be attributed directly to having Down syndrome, and yet they also connect her to other people with trisomy 21 who bring unusual gifts of love and kindness to their families and friends.
So I would no longer say that Penny just happens to have Down syndrome. I would say having Down syndrome is intrinsic to who she is. And that truth is hard, inconvenient, fun, and often quite beautiful.
More with Amy Julia:
- Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
- Free Resource: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome
- Inclusion vs the Real World
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