It’s our daughter’s first birthday tomorrow. And while I am indescribably happy/relieved/grateful that we’ve made it this far, it hasn’t been the year that we thought it would be. Far from it.
Some things were expected, especially since she is our second child—like the epic, sprawling nights, and how it feels to hold our sleeping baby (like praying). And the way her smile sparks up the kind of love that is wild, primal—like absolutely nothing else.
What was not expected: Around 6 months, our girl was diagnosed with what we refer to as her own unique genetic map. She has a genetic disorder that has no name. It is a diagnosis that has been documented in only four other people worldwide. It’s associated with developmental delay plus a host of other concerns that I didn’t even know existed. Because there are so few cases, it is unknown what her strengths and limitations will be. Everything in her life is unfolding for us—when and how (and if) she will walk, talk, eat solid food, and process information in the way that we had imagined.