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Son,

The day I told your big sister she was going to be a sister, she was ecstatic. She rubbed my belly as it grew, read stories to my womb, and promised to be “the best big sister there ever was”. And the day you were born, she beamed with pride. You were “her” baby and she was going to teach you everything. She never got jealous, as many new siblings do. She doted on you, continuing to read you your favorite stories and introduce you to tea parties, Mickey Mouse, and baking—all her favorite things.

I know you don’t remember these days, but I need you to know—you were her everything.

Then, life happened.
And illness took hold.
And the tables turned.

And I want you to know I’m sorry that changed your path.

RELATED: An Open Letter to the Special Needs Sibling

I’m sorry an awful disease took your greatest advocate and best friend.

I’m sorry you once blew out your birthday candles on a donut in a hospital room and that I missed your first hit in baseball because she was coming out of surgery.

I know you’re not sorry for these things. Because you wanted to celebrate “being 5” with your sister, and you hit that ball as far as you did for her.

But I’m sorry because the compassion you have for her reflects empathy beyond your years.

I’m sorry for all the times you traded trips to the park for trips to therapy or another hospital waiting room, and for all the times her emotions came out in shrieks or flailing fists because words failed her.

And I recognize you’re not sorry because you “get it” and you’ve grown wise beyond your years.

You’re not sorry because you love your sister and want her to be a part of your world.
You know today her world is different.

You are her biggest ally, greatest advocate, and best friend.

And I’m not sorry for that—instead, I am grateful.

Grateful you learned from the best, and that you know love knows no bounds.

You, son, have experienced more than is fair but from life’s lemons you’ve made lemonade and I need you to know how proud I am of you.

You are inclusive, loving and kind. And you are exactly what our family and this world need.

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An Open Letter to the Special Needs Sibling

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Cara Arnold

I’m a mama to 3 whose learning to balance parenthood and chronic illness at the hands of autoimmune encephalitis. Some days I’m a soccer mom, carpooling like a boss; other days I’m a relentless advocate, taking on doctors and insurance companies alike. But, if you’re looking for consistency every day I’m a hot mess. My life is a puzzle that’s still not together. I used to think pieces were missing. But it's all finally fitting together. It’s not what I envisioned, and some days I mourn that; but it’s mine. And knowing how fast that can change I try to appreciate every moment of it.

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