My Why: Harvey & Our Journey With Rare Conditions & Child-loss

I am often asked “why” I am a therapist, especially one that wants to work with children and families in their darkest hours. Throughout my life, I have always been interested in cultural and societal differences when navigating death and dying. I have found supporting families in mourning particularly rewarding. My interests and personal life finally crossed paths when I had my first child, Harvey.

Harvey is my oldest son. A sweet boy with curly hair, like me. You’d often see him laughing while banging his favorite spoon on anything within arms reach.

My spouse and I learned early on, before Harvey was even born, that he would face several challenges—starting with a cleft lip and palate. We could not predict that he would soon develop several serious medical conditions and later a rare form of epilepsy, Lennox Gastaut-Syndrome.

“Harvey,” which means “battle-ready,” fought more wars within his own body than most of us will face in a lifetime. He did it with a strength and grace that we can only aspire to, and trust me when I say I do aspire to be like him. When he was feeling good, he laughed often and played hard. When he was sick, we spent months living in the Johns Hopkins PICU in Baltimore, Maryland. Despite his many challenges, Harvey was pure sunshine. The epitome of joy and love.

Despite cutting edge treatments and having world renowned experts on speed dial, and after a long PICU stay in the summer of 2015, Harvey was discharged to pediatric hospice. Sadly, a few months later Harvey died at home. He had just turned 4.

Saying our world was rocked is an understatement. It was important to me after Harvey died, to connect with other parents who knew what this was like…what this life was like. It was immensely helpful to be understood by other parents like me and to learn from them how to navigate a world without Harvey in it. Now I do that for others. Maybe even you.

If you are the parent of a chronically ill child or a child who has died, please reach out.


Grief is hard. It’s harder alone.