Week 33 – Our (Not So) Normal Life

If you could see our family calendar this week, you’d get a glimpse of what this season is like for us. It’s bizarre to be simultaneously planning our baby’s birth and death while carrying on with the ordinary things of life.

One day I have an ultrasound, the next a hair appointment. Tuesday we met a new pediatrician for Samuel, Friday we meet the funeral director. I have a dentist appointment, Daniel has a diabetes appointment. I contact our doula, Bob calls the funeral home. Last week Bob and I spent our date night picking out paint colors, this week we spent it writing our birth plans. We now have a seven-page document spanning every scenario from stillbirth to live birth to Samuel passing away in the hospital sometime after birth, and still I don’t feel prepared. How can we ever really be ready? I never felt prepared to have our first baby, but I sure don’t feel ready to lose our second one.

Thanksgiving Day marked exactly 12 weeks from the day of the ultrasound that changed everything. As I told my family later, I think it was my favorite Thanksgiving yet. Something about this season, with the looming sadness, has made other parts of life feel even sweeter. There’s a lot I don’t take for granted anymore. I feel so thankful to still have my two boys alive and well. I’m amazed Samuel has stayed with us this long. After the initial diagnosis, I expected to lose him any week. I worried anytime I went a couple hours without feeling him move. Three months later, he’s kicking more than ever, and life almost feels normal. Almost.

I smile whenever strangers congratulate my pregnant belly. It used to feel awkward; now it’s kind of nice that at a glance we just look like a happy family with a cute two-year-old and another one on the way. It’s less complicated than trying to explain to strangers in the grocery aisle that, Yes I’m expecting another boy, but No, I’m not so excited for how close our boys will be growing up, because I’m not sure one of them will get to grow up.

At first after Samuel’s diagnosis, we prepared our hearts for loss. A stillbirth seemed likely, and we knew it would be a blessing if we even got to hold Samuel for a few moments alive after his birth. As the weeks carried on, we found stories of the T18 kids who survive longer, and our thoughts shifted from death to life: what if he makes it? Not just a few hours or days, but weeks, months or even years? We started exploring what it looks like to bring home an infant on a ventilator and feeding tube. What surgeries Samuel might need, what medical interventions it might take to prolong his life.

After my ultrasound this week, we are starting to feel like loss is more inevitable. They saw a couple new issues with Samuel: they spotted a mass in his lungs that could make breathing even more of a problem, but potentially make intubation less possible. There is a problem with his umbilical cord that could mean he’s not receiving all the nutrients he needs, and he could stop growing and thriving in the womb. It looks like his growth is starting to plateau when now’s the time he should be growing more than ever.

We’ve been praying God would take the hard decisions away from us, that we won’t have to make life and death decisions for Samuel. Or that if we do have to make decisions, it would be so obvious and clear which way to choose, and we’d feel His peace for every step. In some ways, these new problems could help narrow down our options for what is even possible for Samuel. We know ultimately heaven will be the best place for him, where he can be completely free and healed and whole, and so happy in God’s presence. We just don’t want to have any regrets that we could have done more for Samuel in his time with us. Please keep praying that God would lead us so clearly along the way in each step we should take. Thanks for caring about us and being part of our not quite normal life. 🙂


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.