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.