Matt and Myra
Parents of Havi and Kaia. Kaia is 21 months old and big sister Havi died at age 2 from infantile Tay-Sachs disease.
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Becoming parents for the first time: Expanding the Love Bubble

The diagnostic odyssey to Tay-Sachs

Dropping the illusion of control: Shifting from progress to love and play

Evolving as parents: from feeling shocked and vulnerable to trusting intuitions about what our child wants

Finding the way forward: “Giving her the life she was telling us she wanted in a condensed period of time.”

Havi’s posse just showed up, and it was amazing.

Finding support for just the three of us: People who gave us language, validation, permission

Work: We had to explicitly educate and coach our bosses and colleagues

Bereavement: Outside people are afraid of feeling bad. “The ideal response is to lean in and recognize the grief and anguish.”

Preparing for her End of Life as a Couple: A series of frank and open discussions about the most difficult thing.

For the little sister Kaia: “We’re going to make Havi as big a part of her life as we can.”

The little sister’s footsteps bring joy … and tears.

Message to parents: Trust your intuition. Message to clinicians: Listen to what the child and parents want and do whatever you can to make that happen.
