As a child and even on into my young adulthood I maintained the skewed conceit that I was eternally invincible and immune from death, along with the people I loved. There had never been any personal tragedies to draw experience from that were outside of the natural order. I imagined that premature death was only something that happened to other people’s families. I realized and recognized that we would all die someday, but certainly that was a long, long way off and never pertained to “right now”.

In January of 2012, I was well on my way through adulthood, and midway through my fourth pregnancy. I had a tally of healthy babies chalked up in my medical records and arrogantly expected to add another. I believed in God, but there was never a deep-seeded need that I had for God. I was doing quite well on my own! I prayed for a healthy baby, really just for the formality of it; that seemed like something nice to pray while I was pregnant. The cheerful ambiance was only slightly jeopardized by some abnormal readings that were noted during the 20-week ultrasound. Surely nothing serious, I silently insisted, but it was serious. Serious as worst nightmares can possibly be. Further testing revealed that our unborn baby was carrying an extra 18th chromosome in her genetic makeup. Trisomy 18. “Sometimes survivable, but not likely,” suggested the accompanying statistics. Life as we knew it was changed forever in that moment.

About three days after we received the terrible diagnosis, my vehement anger toward God subsided. I came to a place of complete surrender because it was all that I could do to survive. White flag waving, I gave the whole mess to God. There was absolutely nothing I could say or do to change the circumstances that I was physically and emotionally bound to – no amount of crying, worrying, screaming or pounding my fists would “fix” this baby, but maybe God could?

I had never felt such a lack of control in my whole life. How deceived I had become in believing that I controlled not only my own destiny, but my children’s destinies — this baby’s destiny. I very truly had no idea what would happen throughout the rest of the pregnancy from one day to the next. No baby showers, no more shopping for baby clothes or nursery decor, because I had no idea whether or not we’d be bringing a baby home. But all the while, a vivacious little life stretched, poked and rolled around inside my belly. We were all out here crying our eyes out, while this lively baby girl was tucked safely away inside of me, oblivious that there was anything wrong with her. She was very much alive and I loved her more than I ever could have imagined. I cherished each and every little kick, very aware that they could all vanish the next day. We named her Nora. We sang to her, talked to her and read her stories.

I suppose it is easier to be more intentional with your time and your expressions of love with someone who has been given a terminal diagnosis, but aren’t we all terminal? None of us, and none of the people around us will be on this earth forever! It is sobering and uncomfortable to think about, yet it is a valuable reminder to love and appreciate the days we are given along with the people we get to share them with.

Nora survived her birth and she was the centerpiece of our family for just over two years — 777 days! How very blessed we were to have had that time with her, as she carried out the grand purpose that God had set before her. There really was no telling when the next medical emergency would arise. We made it a point to take endless pictures and videos. We basked in the glow of Nora’s smiles, and marveled over every happy squeal. We fiercely and intentionally loved that little girl every millisecond of her life. As we loved her and coddled her, she taught us so many valuable lessons.

She taught us that life was under no obligation to progress according to our plans or our to-do lists. We learned to be very flexible. She taught us the true meaning of unconditional love – that even though there were conditions associated with her, she was incredibly lovable and exceedingly important. She helped me to reevaluate my priorities and to recognize what really mattered in this life. It certainly wasn’t the kind of car I drove, what brand of purse I carried around or how many pairs of shoes I had. Nora also taught us how to trust and rely on God even in the very worst of times. There was no amount of fear or worry that I could subject myself to that would make anything better.

Even after she left this earth, Nora continues to teach us that even in the deepest sorrow, there can still be joy. There is no way that Nora could have brought all of these wise life lessons to us as a chromosomally normal baby, which is why I believe that she was perfectly authored by God to be exactly the way she was. Of course I can only say this in hindsight.

“Now listen, you who say, ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’ As it is, you boast in your arrogant schemes. All such boasting is evil. If anyone, then, knows the good they ought to do and doesn’t do it, it is sin for them.”
James 4:13-17

That James is comparing us to mist does not in any way devalue the significance of our lives, it is only meant to remind us how fleeting our time on this earth really is. No matter how long or short our lifespan, we still have great importance. We must be pretty important for God to have sent His one and only son to the cross, thereby opening the gates of eternity to us.
Each day that we spend here on this earth implies that God has great purpose for us here, and that none of our days should be taken for granted. There won’t always be the luxury of a terminal diagnosis to remind us to be intentional and purposeful.
Know the good, and do it!