February 8th is my birthday, so February 8th, 2013 sticks out in my mind for several reasons. For one, I turned 34 that day. I don’t remember what I got for my birthday, mainly because I, like most parents, stopped expecting much hoopla after my kids came along and stole the show. I’m happy to let them have it. And two, we had a snow day that day, so I fortunately spent my birthday not at work. In the peak season of school busyness, it was a welcome reprieve, even if it came with a foot or so of white headache. Ironically, although I’m a Southerner by birth (and by the grace of God), a rare southern snowstorm delayed my mom’s arrival at the hospital for my own delivery. She told me the story every year, so no matter where I celebrated, I was reminded of snow. This birthday was no different, and I thought about good ole’ mom as I shoveled and slogged through the snow that day. However, I remember February 8th, 2013, for a much more significant reason than these. On that day, we heard my second son’s heartbeat for the first time.
My wife had suspected for weeks that she was pregnant, and this being our fifth pregnancy, we were not rookies. We were happy at the prospect of another baby at our house. It had been a few years since our fourth child was born, and we figured we were about due for another little bundle. Since we had three girls and a boy already, we figured maybe this was the time to even out the numbers.
But this pregnancy was different. There were some indications that things were not normal, and we were beginning to believe the pregnancy had terminated naturally. So, our visit to the doctor that day was accompanied by some anxiety in not knowing fully what our situation was.
The sound of new life is so humbling.
It’s an anxious moment when the doctor places that microphone on your wife’s tummy and starts searching for a sound. We weren’t sure there was going to be one that day, and we could have heard a pin drop as the doctor slid the microphone across her stomach. And then, the silence was broken by the whisper of blood racing through a tiny heart: whir-whir-whir-whir . The doctor had a knowing grin. “You hear it?” We heard it alright. The thought of possibly losing that little life had sobered us, but that memorable sound snapped us back into new-parent mode. Whew…that was close.
That was a Friday, but our joyful emotion lasted only for the weekend. The doctor recommended a follow-up ultrasound on Monday due to the unusual signs of the pregnancy. We took the afternoon off work and headed to the doctor’s office. We were still a little on edge as the ultrasound started, but things seemed to be going well and we watched the green display for signs of a little life. And then, there “he” was. My wife smiled a warm “mommy” grin as the signs of life appeared: Tiny hands and feet, bent legs, a shapely head, and the mechanical, rhythmic movement of a little heart–a simple motion we would become very familiar with in coming months. It was a good feeling, and for a few moments, all was well in the world again.
I’m certain that somewhere in entry-level medical programs, there must be a day in the syllabus devoted to handling difficult news with tact. Certainly, this lecture is not reserved only for those at the highest echelons of medical practice. Our ultrasound tech apparently missed that day of class: “Uh oh” were the highly-technical medical terms she chose. My wife and I slowly looked at each other, then back at her, then back at each other again. After a few moments, I realized she wasn’t intending to offer an explanation, so I offered up a soft-pitch: “So…what do you see?” After a moment or two of quiet, the tech muttered that she needed to finish the exam and couldn’t answer any questions. So we sat and watched the screen as she finished the exam, typed up some hurried notes, and then disappeared from the room. And there we waited. It all happened so fast, I don’t think either of us could think of much to say, but we understood we were probably about to face some uncomfortable news.
A few minutes later, the tech returned and ushered us stiffly into a doctor’s office. We held hands and stared at the walls as we waited. There was some reassurance knowing that all the diplomas on the shelf would amount to healthcare’s best answers, and yet little can calm the spirit in that moment. The very gracious doctor arrived in a flurry and began by apologizing for the tech’s tipping us off that there was a problem.
At this point, we were just ready for someone to give us information and didn’t particularly care if it had been the lunch lady. Just tell us something!
The doctor explained, using few small words, that our baby had a cyst on the back of the neck that was typically found in babies with a chromosomal disorder. A blood test would be needed to reveal the specifics, but at least she did not leave us in the dark about preparing for further bad news. Based on her tone, we could tell that the natural flow of these conversations was to discuss ending the pregnancy through human intervention. Sensing that the doctor was hinting at this idea without directly saying so, I told her we were Christians and ending life God had created was not a remote consideration. The relief in her eyes and face was tangible. Her eyes brightened and she shared with us her own faith and resulting view of the dignity of God-created life. It was a silver lining to discuss the situation with someone who was on our side of life.
The time came for us to leave the security of her kindness, and we left the office not really knowing how to feel. Certainly, some disappointment was on board, but I recall a strong sense of anxiety more than anything.
Sometimes, knowing something about the future seems worse than not knowing anything at all.
Danielle scheduled an appointment for a blood exam, the results of which would reveal the specifics of the baby’s condition. We waited a few days for the results as the anxiety grew, and then the news came that our baby had a condition known as Trisomy 18 (A more common chromosome problem is Trisomy 21, also known as Downs Syndrome). The condition our baby had was a “worse” problem than Downs, and as we educated ourselves and met with doctors, we learned the survival rate was not promising. Many babies with this situation do not survive to full term, and those who do typically don’t survive long outside the womb. Cases of children with Trisomy 18 living more than a year are extremely rare.
To say the least, the amount of information we’d received within such a short time frame was a lot to digest. We’d gone from believing that the pregnancy had terminated naturally to the joy in hearing that life remained. The exciting news of a new baby was not necessarily diminished by the arrival of bad news, but certainly, the information cast a shadow of uncertainty that would last for months. Not sure what to pray, we thanked God for the opportunity to be part of new life, and we asked that He would make us content with His will whatever it was.
We decided rather quickly the best course of action was not to keep our kids in the dark. The last thing we wanted for them was a surprise ending, and so we just determined to keep them informed. They of course peppered us with questions, the older ones especially interested in the details. While my tendency is to not over-explain things, I appreciated hearing my wife talk about the baby. She had a calm sense about her that transferred to the kids, and the state of mind in our home was never one of panic or dread. Danielle had her times of emotion, but the stability she brought to the equation was also reassuring.
We counted ourselves blessed to have access to the highest quality of healthcare in America. Specialists and experts answered questions, educated us on potential outcomes, and reassured us of their presence for the duration. The resources our parents and grandparents had access to were certainly anemic in comparison to the technology we enjoy today, and yet they got by somehow I suppose. Would we rather not know that our baby had a problem? We weren’t sure sometimes. Doctors had told us from the beginning that a common malady for babies with Trisomy 18 is a heart defect that is incompatible with life. Essentially, the heart does not develop the valves, walls, and structure a normal heart needs to separate oxygenated from non-oxygenated blood. And so, each month we would visit the hospital for an ultrasound that looked specifically at the baby’s heart. The pulsing image revealed blood moving in vivid blue and red swatches through the chambers and valves of the heart, and this became our monthly virtual connection to the youngest member of our family. Viewing those images gave us a sense of hope that this little life would beat the odds. The swishing red-blue dance across the grey background was an image we would never forget.
The prognosis continued to be somewhat grim but was not altogether hopeless. Kindly, doctors continued to paint a realistic picture for us, one which did not include the baby surviving to delivery, much less beyond delivery. Heart surgery, while not necessarily out of the question, would be a far-off consideration. “One day at a time” was the best we could plan on for now.
On a hot August afternoon, two days before the baby was due, we visited the doctor for one last check-up. Things were looking good for the delivery: Good pulse, heartbeat, and blood pressure for both mom and baby. We waited for the sound of life we’d been surprised by months ago: the whir-whir-whir-whir of a little life. And there it was. Green light for an on-time delivery. However, while making it to this point was a marvel, enduring the trauma of delivery would be a major barrier to the baby’s survival. And so we discussed with the doctor what to expect in the immediate moments after delivery. “Comfort care” is what he called it-providing as much warmth and tender treatment as possible while not taking any drastic medical measures. We weren’t sure how we felt about this. But then again, we understood the frailty of any newborn would limit treatments that might be life-threatening themselves. We were content that we’d received good medical advice for eight months, and now we were ready to make the best choices possible in a less-than-ideal situation.
Another threatening condition of Trisomy 18 would be the baby’s inability to synthesize and digest food, not to mention the ability to breathe, especially as the heart encountered the duress of independent living. The basic functions of life we normally take for granted would not be viewed casually in this new reality. There were many known unknowns, but one thing seemed certain: God was bringing a new life with many potential challenges into our family. We were concerned, but not worried. We would take things as they came.
Then came Wednesday. We were to arrive at the hospital by early evening to start the Pitocin that would induce labor and ensure a timely delivery the next morning. I had loaded the baby seat into the back of the car, having done this four other times over the last nine years. We farmed out the kids to grandparents, aunts, and uncles and they trooped off to Wednesday evening church. Danielle and I ate a light dinner and then headed for the hospital where we checked in and got settled the for the night.
It wasn’t long after we’d gotten comfortable that the night-shift medical team arrived. Standard protocol in the maternity wing is to hook the mom up to as many wires, straps, and devices as possible, almost as though this might restrain her from escaping the ward if she changed her mind. Blood pressure monitor: check; Pulse monitor: check; IV with Pitocin: check. “Now try to relax,” is always the final instruction, “and don’t let all the beeping keep you awake.” Sure thing. Mom was all prepped and ready to go, now time to check on the baby. The nurse and resident were talkative and gentle as they adjusted the ultrasound straps across Danielle’s tummy, tapped buttons on the computer, and started clicking away. They pointed the ultrasound monitor in our direction so we could see again what we’d watched for so many months: the swirling blue and red competition for space.
Instead, there was an eery stillness. There was the baby’s form–backbone, legs, fingers, and head–but this time, all else was gray. There was no swishing, no red, no blue, no movement. All was still. It was apparent to each of us in the room what this meant, but the nurse continued to adjust the stylus in the hope that the image would change. It didn’t, and the reality sunk in quickly that the moment we’d avoided for nine months was now upon us. “I’m so sorry, but it appears your baby has passed,” the resident whispered. I doubt this was her first encounter with infant mortality, yet she seemed genuinely heartbroken. A moment later, the supervising doctor entered and rendered the final opinion, confirming that the baby’s heart had indeed stopped and that life had ended. The nurse somberly yet quickly removed the ultrasound equipment and left the room to give us a few minutes of privacy.
We sat and tried to absorb what had happened. We’d seen the inside and out of hospitals, waiting rooms, and doctors’ offices for the last many months. Although we were grateful for good healthcare, we’d grown weary of the recurring, disappointing message of “prepare for disappointment”. We’d gently explained things to our other four kids and prepared them for the unknown days ahead, and we did our best to plant seeds of hope and thoughts of God’s perfect plan. Our friends and family had supported us with kindness, questions, and concern, and we’d done our best to maintain a stiff upper lip all the while. And when all that came to an abrupt halt, it was hard to know what to feel. So, we talked for awhile, prayed together, and wiped off the tears. We really wanted to just go home.
Our philosophy has always been to not find out the gender of our children until they were born. The guessing and speculating up until the last minute was always fun for us. We never worried about painting nurseries or picking out gender-specific clothes before the birth, and we never regretted waiting the full nine months to find out what we were having. And so we still had a measure of anticipation when Danielle delivered Micah Paul early the next morning. He was just a little guy, weighing in at under five pounds, but he was just as beautiful a baby as our others had been. His skin was slippery and smooth, his hands were curled and tight, and holding him brought a new level of reality to the ordeal.
Talking about death is one thing. Holding death in your hands is very sobering.
Our family arrived over the next few hours and the excitement of our kids being with us was a relief. They were full of questions, and although we had only awkward explanations, their energy and bright eyes reminded us of the vibrant life awaiting us at home. Everyone took turns holding Micah, getting pictures, and sitting next to mom. The older kids cried some, the younger ones were mostly just quiet. We were grateful for a big family. Altogether, there were around twenty people packed into that room: kids, grandparents, aunts, uncles, and cousins.
Familiar faces are a soothing reminder of better days lived outside of present difficulty.
The family visitors were a comfort, but schedules soon beckoned, kids became restless, and it was time for everyone to say goodbye. I slipped my car keys to my father-in-law and quietly asked him to remove the baby carrier from the back seat of my car on his way out of the parking lot.
And so, we found ourselves alone again with our thoughts and our Micah. We held him, talked to him, and couldn’t help but wonder at what might have been. But soon it was time to let Micah go too. He’d been part of us for nine months, and yet we’d held him for just a few hours. There’s no pleasant or ceremonial procedure for moving a body, much less for an infant. The funeral director and nurses brought a cart with a metal basket filled with blankets, and we kissed Micah goodbye, laid him to rest inside, and covered him with a blanket. The group prepared to exit our room, and I proceeded to follow. “You’re coming with us?” someone asked, as though this was unusual. These were strangers, and this was my son. Of course I was going.
We left the maternity wing, took the elevator to the first floor, and rolled through the corridors full of busy people with their own set of cares–a harsh reminder that in vibrance or mortality, life goes on. No one could see who our little vehicle held, and no one seemed too concerned about a small huddle of serious-looking people, escorted by a security guard, moving in tandem through the hallway. “It’s something, isn’t it,” the funeral director commented, “that none of these people know what we’re doing.” Not that they needed to, but the gravity of our situation upstairs was certainly not felt five floors below. Our rapid wake ended at the door to the ambulance parking when the funeral director touched my arm, looked me in the eyes, and made me a dad-to-dad promise:
“I’m going to take good care of your son.”
I touched Micah one last time, watched the group disappear through the door, and slowly retraced the lonely path through the crowd back to the delivery room. Thursday, August 15, 2013.
Regardless of a person’s age or the reason for their passing, death is death. And while the resulting emotions may vary in their magnitude and duration, those left behind contemplate life in different ways than before. In the days that followed Micah’s death, we were surrounded by family and friends, some of whom came long distances to attend Micah’s graveside service. He was buried under a shady tree in “Babyland”, not far from the spot where his infant uncle was placed over 30 years prior. Although a little somber for a few days, our home quickly resumed the high volume and hectic pace of busy family life. Danielle and I were certainly saddened at the loss of our son, and we both processed and mourned his death together and in our own ways. Yet at some level, we were thankful the Lord spared Micah from the trauma of delivery and the struggles of independent living that awaited him. There were times where we weren’t sure what to think. Was this a judgment from God? Why did He allow the pregnancy to endure for nine months, only to end at the eleventh hour? Did we not pray hard enough?
In any major life event, we all grasp for meaning.
A nugget of wisdom, some truth gained, a new insight to pass on. As the time lengthens since that day when our son skipped the hardships of Earth for the ease of heaven, we continue to reflect on what God wanted to teach us through it all. While that narrative continues and may never be finished, I think we can safely say we are better for the experience.
For one, I have a much greater awareness that our concept of “normal” is nothing like God’s. Rich and poor have this in common: The LORD is the Maker of them all (Pr. 22:2). Who am I to impose my definition of normal on any piece of God’s creation which He made perfectly no matter its shape, size, color, or malady? I look at people with physical handicaps much differently now, knowing my son would have been extremely abnormal by most definitions had he lived. God makes humans to be image-bearers of Himself, and how He chooses to have them bear it is His business. My opinion of people is neither relevant nor solicited by our Maker.
Micah’s life was altered dramatically by a tiny thread called a chromosome that naked eyes can’t even see. I know there’s a much more technical explanation for it, but something in there got tangled, duplicated, or just twisted funny. Why do I deserve good health and full use of my body while others lack physical strength or live with pain? Just lucky? No way. In his hand is the life of every creature and the breath of all mankind (Job 12:10). I’m a most fortunate man to wake up every day with air in my lungs and energy in my mind and body, and it’s only by His grace that my thread isn’t tangled or torn. How can I hold back one ounce of my time, energy, or possessions from the One Who allows me to steward them? Because of the LORD’s great love we are not consumed, for his compassions never fail (Lam. 3:22). God Made You to Do…get busy doing it while you can!
I make a living in education, and so being around kids every day kind of goes with the territory. I like to think that my own kids want to be around me, and I obviously enjoy their company. I’ve always liked being a teacher and interacting with other people’s kids too. Some of the relationships I’ve had with students, colleagues, and other professionals will be life-long, and my work has partly defined who I am. I have to admit though that this experience clarified my view of children, both mine and other people’s. It doesn’t take a village to raise a child. It takes adults who are Biblically informed and willing to flesh-out wisdom. God hasn’t called me to raise other people’s kids, but I can sure influence them and their parents along right paths. My work and ministry place me around children who, just like Micah, have a purpose for being born and need leadership to help them find it. And so each morning, I try to pat a few more heads and give a couple extra high-fives to let the kids I lead know I care about them. If all these children remember about me is that I showed them love, I’m ok with that. I’m not sure I cared enough about that before.
Not long after Micah went to heaven, I happened across a comment by Matthew Henry that has stuck with me ever since:
Babies are a sign that despite the difficulties of a fallen world, God’s will is for human life to continue.
As life presses forward, we hug our kids a little tighter, give them time more intentionally, and remind them of the constant grace of the One Who’s taking good care of our son.