There is a picture of Derrick holding Eliza less than an hour after we got her PWS diagnosis. I look at it and am transported to that moment. They both look so serious, and I can tell even in just his lips the weight he felt as he held his tiny baby against his chest. It was a yearning to protect her, to hold her close, to absorb any pain or fear or challenge and take it on himself. We can’t do that, of course, but every parent who has held his or her child for the first time knows that instinctual desire to shield her. A part of your heart beats in another’s, and from what I can tell, that never goes away. All of us will witness pain in our children, but it’s so unknown most of the time. We may walk alongside our children as they encounter the loss of a friend, struggles in school, heartbreak, addiction, injury. But we rarely hold our two-week old knowing that she will feel insatiable hunger, that she will struggle in friendships and academics, that she may not grow up and leave the house for college or a house and family of her own. And I will say, getting the diagnosis brought all that in play. It was as though we had a crystal ball for at least some of the challenges she would inevitably face.
The problem with crystal balls is that they take our attention away from the right now, and they sometimes (or for me, more accurately, always) change the way we walk into tomorrow. If I had known the day Eliza was born that we would spend the next five weeks there or that we would be hospitalized another six times before her first birthday, I think it would have broken me. I would have lived in dread for the next hard thing, paralyzed by the fear instead of leaning into the love. And there was so much love. But it doesn’t change the fact that that very night, and for many after, I woke up to the re-remembering not of hopeful news but of our devastating diagnosis, and it felt fresh and raw every single time. The struggle was real, and the struggle was brutal.