We learned about Samuel’s diagnosis when Joanna was 20 weeks pregnant, and today is week 31. We’re just two months away from her due date, and it’s hard to understand how we’ve already gone through half of the time we’ll have to process Samuel’s condition before he arrives.
As I look back over the last 11 weeks, there are a few words that stand out to describe this experience:
Emotional. I can’t say I’m known for my wild emotional swings, but this season has certainly shown me they’re possible. Initially, there were ups and downs every week or so. There was a lot of variation as we learned about Trisomy 18 and Samuel’s other conditions. There was sadness and grief from the initial diagnosis, but that was followed by a surprising period of peace. Then more waves of pain and loss came as I realized just how difficult Samuel’s life could be, and as I wrestled with the unique challenge of anticipating a birth, and likely a death soon after that. I think about what I might say at Samuel’s funeral, what it could be like to say goodbye to him for the last time. To call this journey “emotional” feels like a bit of an understatement some days.
Full. There are many unexpected facets to this journey. One is just how alive I feel. It’s hard to describe, but in some ways this season of life is all I know right now, all I can remember. It feels all-consuming, not in the sense of “I’m being consumed,” but rather that the significance of this time demands greater responsibility and awareness from me. The days feel like they matter, almost like I’m aware that I’m going through a life-changing process as it happens. It sharpens my attention to this season, and I feel especially conscious of the importance of it all.
Deep. Joanna and I are getting to wrestle through incredibly meaningful questions of life and death. We’re sorting through our values, together, about what matters most to us. It might sound strange to say, but, in some ways, this time actually feels like a gift. We would never have had any need to communicate so deeply about such intimate issues if it weren’t for Samuel.
I contemplate the meaning of a life that may exist only in his mother’s womb, or perhaps outside of it for hours or days or weeks. I don’t get to look forward to teaching Samuel how to walk, or run, or hit a ball, or drive a car. Instead, I get to love and cherish and honor the life of my son, not because of anything he’ll accomplish, but because he’s simply my son.
There’s so much more I could write about. The friends and family who care so incredibly deeply for us, and who love, pray, and contend so regularly on our behalf. The deep and abiding compassion God is giving me for people who experience tremendous loss or life-altering disability. And so much more.
It’s remarkable, really, that all of these lessons and thoughts can come from a little two-pound unborn child who just happened to end up with an extra copy of his 18th chromosome. It’s almost enough for me to be thankful for this season. Almost.