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.

Becoming parents for the first time: Expanding the Love Bubble
Matt and Myra, parents to Havi and Kaia talk about becoming parents for the first time. They look back on all of the emotions that came with the birth of their first daughter Havi and the way it changed their lives.
1 / 14

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.
