Introduction

These letters were originally just emails I had written to a small handful of friends and family members. My primary goal in writing was just to reach out while hoping that others would possibly walk along side of us as we journeyed down this unknown path. At some point, after more people began learning about Pearl, a couple of friends started a blog for us, and included these letters as the first few posts.

I didn’t originally write with the intention of sharing the letters publicly, but many have said that these words were helpful in understanding how we were processing things, and also beneficial in helping them with grief in other areas of their own life. But that also means I didn’t write with a strong filter on my words, and the raw expressions of vulnerability and honesty are somewhat embarrassing when I go back and read through them now. We still cycle through such seasons, though I try and keep a tighter grasp on my expressions these days.

Holoprosencephaly (HPE) was a massive turning point for our family. Ruth and I had no idea of the power of such a crucible, and we found ourselves standing before a story we felt completely unequipped to live out. The sharing of Pearl’s life primarily began as me reaching out to anyone I thought would care, and pray, and hoping that maybe they’d shoulder some of the gravity. Maybe these will be helpful to someone. Maybe I sound like a madman. Maybe it’s both of those things and more, or maybe not. Here they are, regardless.