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  • Writer's pictureJennifer Lendvai-Lintner

Want a peek inside parenting a rare one?

by Jennifer Lendvai-Lintner

It’s learning to live in unknowing.

It’s letting experience guide when there’s seldom precedent.

It’s trusting yourself—your power, your instincts, your particular capabilities.

It’s honoring the drive to care for yourself.

It’s realizing the depth and breadth of grief.

It is joy beyond imagination.

It’s being weary inhabiting a world hostile toward your beloved.

It’s gritty and grueling, and it is peace and ease.

It’s one breath then the next.

It’s letting go of innumerable things you cannot change to wrap both arms around that which you can.

Answers may not live here, but in the space they leave, hope can reside.

You’ll spot it if you peek inside—





That, and of course the love.


February 28 is recognized as Rare Disease Day. Learn more about rare conditions at


[Image Description: Through an open bedroom door, author Jennifer's husband Géza sits on a cream-colored upholstered chair snuggling daughter Hilde to his chest. He is cheek to cheek with the bald-headed 2-year-old. Both are in gray sweaters and are looking out the window. The side of a dark wooden dresser can be seen on the right, and the leaves of a fiddle leaf fig tree can be seen behind the chair.]

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