Being a Sibling

Medically complex children and siblings: a mother shares her daughters' early and evolving relationship and how she parents.
June MSW, LICSW, ACHP-SW, mother of Katie (28) — who is medically complex and likely has Rett Syndrome — and Alissa (age 24), describes how her typical daughter evolved her understanding and questions about her sister, and how she parented her through that. “Around four, five, six, she started asking questions: How come Katie can’t talk? why does she have seizures and I don’t? … It presents different challenges at different times and I’m open and honest with her and reassuring.”
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Medically complex children and siblings: a mother shares her daughters' early and evolving relationship and how she parents.

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Julia grew up quickly, in the NICU, in waiting rooms.

She’s very closed off about it.

They’ve been exposed to so many different types of people.

They think of her just as a cute little sister.

Kyla always introduced her friends to William.

How it has been for little brother John (age 4)

He taught her compassion and empathy towards others.

The sibling bond was kind of broken by cancer.

We didn’t want him to have regrets later in life that we didn’t include him in the conversation.

Coming full circle, I think it’s been a gift for him

She wanted to have a normal typical world.

Jessica has asked, “Will I have to take care of Rachel?”

We talk about what things would be like if Rachel were typical.

They never complained about being with her at the hospital late at night.
