Dance Between Joy and Sorrow

It was Holy Week this week, and it is a time when Christians reflect on the crucifixion and resurrection of Jesus.  It is a time of both sorrow & joy – sorrow for the brokenness, death, and sin that we still see in the world that required the crucifixion, but joy in the hope that death has been defeated, sin has no power anymore, and Christ is alive. Easter has always held much significance for Vinayak and me, and this year it has taken on new meaning and significance as over the last 3 months, Vinayak and I have been experiencing the delicate dance between joy and sorrow as we carry and eagerly await the arrival of our firstborn son who was diagnosed 3 months ago with a life-limiting genetic condition where preparing to meet him also means preparing to say goodbye to him. 

I vividly remember the day we found out we were pregnant back in August – we were absolutely thrilled. Vinayak bought us a pregnancy journal for my birthday and we filled it with letters to our baby and pictures of his ultrasounds.  The worrier in me had been anxious about whether we’d be able to have kids or if it’d be difficult, and I was grateful that it seemed my worries had been unnecessary. Then came waiting until we hit 12 weeks – the chance of miscarriage is higher the first 12 weeks than the rest of the pregnancy, and while that worry was definitely always in the back of my mind, we also had thankfully made it through the first trimester with a strong heartbeat in the baby and plenty of nausea on my part. Never in our wildest dreams or nightmares did we realize that there was a world in which parents would have to choose whether to carry to term a baby whose life could end at any point in the pregnancy.

So when we went in on Dec 27, exactly 15 weeks ago, for our 22 week anatomy scan, we were naively excited, an emotion we will terribly miss for all future pregnancies.  Of course, anatomy scans are for determining if there are birth defects, and while it was definitely in the back of my mind, it didn’t concern me as much.  My parents were in town visiting, and I had taken the day off from work to spend time with them but also because I knew I’d be too excited after the ultrasound to work anyway – we were finally finding out the gender of our baby! Our ultrasound was at 9AM in the morning, and what should have been an only 30 minute appointment ended up with us being at the hospital until 4PM that day. 

Looking back, there were warning signs. Our sonographer was incredibly kind and did not let on at all that anything was wrong, but I kept wondering why she kept looking at our baby’s heart and brain, why it was taking so long, why she hadn’t told us the gender after almost an hour, why she kept needing more measurements, why she asked us a few times when our due date was, and then finally, why the doctor needed to come in. It was easy in the moment to ignore those signs though: I was glad to get a longer look at our growing child, I thought the baby was just in a hard to measure position, we had been given two due dates early on as the baby’s growth and my LMP had not perfectly lined up, and when I pointed out to Vinayak that we’d been there for already an hour and a half, he said there was nothing to worry about. Our baby was alive – what could there be to worry about? 

When the doctor came in, she gently told us the concerning things she was seeing with our baby boy. Together, the concerning things were soft markers for a potential underlying genetic abnormality: trisomy 18, a rare condition where the baby has 3 copies of the 18th chromosome. I’d never heard of it and had no idea what it meant. What the doctor had to explain to us was that most trisomy 18 babies pass away in the womb, of those who make it to full term, only half are born alive, and of those born alive, only 50% make it past their first week and 5-10% make it past their first birthday. 

To say that we were devastated would be an understatement. It was surreal, and it was like having your heart crushed to pieces by a truck at full speed. It’s one thing to be told your baby has some birth defects; with modern medicine, many of them can be fixed or managed quite well. It’s another to be told your baby may either die within you or have a very limited life expectancy – no surgery or money in the world can fix that and in that one instant, all the hopes & plans you had for your baby are utterly dashed. We spent the rest of the day meeting with a genetic counselor, talking to the doctor about what the different outcomes and options were, and getting an amniocentesis done, which a week later confirmed that he did indeed have trisomy 18. At this point, we were at 23 weeks gestation, and our doctor and genetic counselor asked us next to consider whether we were going to continue our pregnancy or end it. Legally, you can end a pregnancy without questions asked up until 24 weeks.

Never had I ever thought I’d be in a position considering ending a pregnancy. Most Christians will tell you that abortion is wrong and evil. Period. I’ve come to realize that the brokenness of this world means no ethical issue is ever so black and white, and for people who can easily see it that way, I can only think of it as a privilege as they’ve never been forced to face two equally hard decisions: ending a very much wanted pregnancy or continuing a pregnancy that will rip you apart emotionally in joy & grief everyday, not to mention the impact it’d have on your family. I have more to say on that subject, but have left it for another post. 

The next week was one of the hardest and most stressful weeks as we considered all the risks and benefits of both options.  We went back in that week to talk to our OB as well as another perinatologist.  The perinatologist we spoke to minced no words in telling us about all the risks I’d be taking on by continuing the pregnancy, and the risks it’d have on our future pregnancies, my reproductive health, etc. It’s terrifying to be told by a medical expert who has seen the worst of the worst that if this all goes wrong, we may never have children again. We spent that week praying and researching.  Well, honestly, Vinayak did. Because I couldn’t bring myself to research trisomy 18, the potential pregnancy complications, and what termination would be like at that stage of our pregnancy. We spent so much time in prayer, but Vinayak had the most clarity and calmness. I was devastated, confused, and terrified – our parents’ worry and concern for me and what it’d mean emotionally and physically for me to continue the pregnancy added on an additional layer of stress on me.  Throughout all of this, Vinayak was as stable and calm as could be, and it has taught me so much more about the importance and value of marriage – that it’s not just about finding someone who you can enjoy the good times with, but having someone who can face the most hellish, unimaginable, and stressful situations with you and possibly for you with a calmness, faith, and confidence that is only rooted in God. 

A close friend of mine told me that she was glad that I had God in this situation to comfort and encourage me. I told her though that having God made this situation both harder and easier.  Easier because yes, when you truly believe God is good and have seen Him work wonders in your life, you can have hope that there will be something beautiful even out of this. Harder because the choices you make are no longer your own – we could easily end the pregnancy, move on, and try again, but when you believe that there is a God, that God’s plans can work all things for good, then no decision in life can be made without seeking God’s input – because God alone knows what is the best choice for you to make. Who knows if we continue the pregnancy the value it’d bring to our souls and lives and our little boy’s life? Who knows if we didn’t continue the pregnancy if we’d be saving ourselves from physical repercussions to me? God alone knows. And the only way we can make a decision in confidence regardless of outcome is if we made it with the full confidence that that was where God was leading.  By the end of the week, we had both felt specifically led by God to continue the pregnancy. Was I terrified? Yes. But we had the confidence and peace that no matter what happened, we knew we were at least still in God’s hands. 

In the midst of the decision making, we received a lot of questions around why we would continue to carry our son with the daily stress and sorrow that he may pass away any day. Why not end the suffering now? But Good Friday demonstrated that glorious and beautiful things can and do come out of unimaginable pain and sorrow. God incarnate chose, out of love for us, to suffer and die for us. Without the cross, there is no Easter morning. Without the cross, there is no real joy, hope, or salvation for us. And as hard as the last few months have been, Vinayak and I have realized that without it, we would not have experienced all the joy as well. The joy of having time with our little boy, the joy of knowing that we are walking obediently and honorably the unique path God has set before us, the joy of knowing that our boy’s life is completely in God’s hands, and the joy of knowing that our little boy’s life, no matter how short, has already had a permanent impact on our lives, our family’s lives, and our friends’ lives. 

Christ’s resurrection, Easter Sunday, gives us hope. Hope and faith that God can and does do the impossible and that He is in the business of restoring all things. That God can heal our boy completely and miraculously. And we have seen answered prayers in our little boy’s body already, where some defects have disappeared and others look potentially more minor than expected. But Christ’s resurrection also gives us hope and faith that even if our son is not fully healed, even if we get no time with him alive or a short time with him alive, that death does not have the final say. In Christ, death is defeated, and we will meet our son again one day – whole, alive, and restored. 

We are 37 weeks today, and to have made it this far is something we are so, so grateful for. As we get closer to our due date, we have no idea what it will be like – will we meet our boy alive? Will God heal him (because we do hope and pray for this every night)? But we are intentionally choosing faith over the fears, joy over the sorrow and uncertainty, and confidence that no matter what happens, no matter how long God gifts us this little boy, we intend to make his entire life a joyful and overwhelmingly loved one, starting now in the womb, and one that will forever point to God’s goodness, strength, and glory in our lives.