During job interviews and on internet quiz memes there’s a question that comes up more often than I think most people really want to hear the answer. I’ve avoided it many times before, but tonight I guess I’m finally ready to talk about it at large…to try and explain how, exactly, a reasonably normal white-child-of-privilege ends up in his early thirties, struggling emotionally just to climb out of bed every morning.
[edit: This post is about the saddest and most challenging personal experiences of my life. Many people have gone through far worse, and I'm certainly not trying to claim some kind of prize for a hard knock life, because I've had it INCREDIBLY easy...but to my surprise, this made a couple of people cry; and I'd never seen one of them cry before...so take that as a warning of sorts...or something. If you only come here for "the funny" (and who could blame you?) please be warned that there will be little to no funny here. Come back tomorrow and I'll be back with "the funny." I promise.]
I’ve probably been asked “What’s the most difficult thing you’ve ever done?” about two dozen times that I can think of since July 24th 1999. I think I might have answered it honestly twice.
So, what follows is the most full and complete answer to that question I can compose with almost a decade of distance since the events began to transpire.
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On Thanksgiving weekend, 1998 the air was still warm in the evenings even though the mornings were starting to take on a crisp bite that warned of the winter that was just days away. My wife and I were well past the three year anniversary mark and life had settled into a pretty comfortable schedule: same jobs for more than a year, the same cute townhouse, same daily routines.
Then, all those routines, all that sameness, died to the sound of pee cascading off of an EPT test.
Oddly enough, the test was negative. But the discussions that it sparked led to the end of birth control pills, starting to watch our diets a bit closer, and planning for a future for three instead of two.
One month later, another stream of pee, and the test was positive.
We wanted to keep the conception a secret at first, after all, these things can go badly early on and there was no reason to get our families all worked up if it didn’t “stick.” Which was the plan we stuck with for almost an hour…if, by “almost” you mean “less than twenty minutes.”
I will remember the sound of that squealing, screaming, hyper-jump-up-and-down enthusiasm that my wife and my mother-in-law shared across hundreds of miles for the rest of my life. If pure joy and excitement has a sound all its own, that was it.
We had excellent heath insurance, plenty of ob-gyn options in town, several great hospitals in the area and a nice local hospital just a few miles away. My wife took all her pre-natal vitamins, every necessary precaution at work and went for her regular appointments with excitement. I didn’t miss a single office visit either. I was an ENGAGED father-to-be. We were excited.
And things were going great. The heartbeat was perfect (and awesome to hear), the weight gain was happening at a very positive rate, and the utrasound went well. We saw our son reclining in all his glory safe and sound inside his mother. In fact, except for baby being uncooperative for an image showing his heart development, everything in the ultrasound images was perfectly normal.
Days turned into weeks, weeks slowly expanded out into months and after what felt like the longest winter and the shortest spring in the history of the world, summer and Lamaze classes were finally both upon us. Almost eight months of waiting had brought us to the point where the end was finally in sight. We decided to take the day off before our first class, go to her regular monthly checkup and then go up to Portland and do some shopping for mommy and baby.
The doctor’s appointment went well. We listened to the heartbeat again, weight was good, everything was good…except my wife’s blood pressure was a bit elevated. Which might not seem all that important for most people, but for her that was shockingly unusual.
After a long discussion, the ob-gyn on duty decided to send my wife over to the local hospital for a non-stress test. Basically, it’s just heart rate and blood pressure testing over time while sitting in a chair. We got to the hospital at about noon, and the test was started before 12:30…hey, it’s a small local hospital.
At 3:00 in the afternoon we realized we weren’t going to go shopping. We also realized we hadn’t seen anyone in more than an hour, so I went off to find a nurse who could tell us how much longer this was going to take. We had class that night after all.
By 6:00 we realized that we weren’t going to make it to class either. At that point we decided I should go grab some dinner for us and potty the dogs at home. When I got back, they had made it clear that she wasn’t going home that night, instead she had an ultrasound scheduled for 5:00am the next morning. So, after calling her mom to let her know what was going on, we ate our sandwiches and I slept in the semi-reclining chair next to her bed.
When the 5:00am ultrasound came around, it became clear that everything was NOT well. What had, up to that point, been a “mostly routine” observation process turned into an ambulance ride 55 miles north to the largest neo-natal ICU hospital in the area. Through morning rush hour traffic.
I had to pick up her mom from our home (her sister had driven her up EARLY that morning) and we tried to follow behind. We ended up getting there a good two hours behind the ambulance; and by the time we got to the hospital I was nearly unhinged from the process of trying to get through some of the worst traffic congestion and road construction delays in Portland area history.
Then next two weeks were like one moment of crisis stretched out over thirteen days. Both my wife and our baby were in serious, but not immanent danger. My wife had “significantly dangerous” preeclampsia, and there were some significant issues complicating the baby’s health as well. The first concern was that even after a four hour attempt, no ultrasound could show a fully formed heart structure.
The doctor’s wanted to prolong the pregnancy as long as was safely possible and so we settled in to wait. My Mother-In-Law slept on the sleeping bench, and for twelve nights, I slept on a thin hospital blanket on the tile hospital room floor.
The only time I left the room was either to go off and purchase some supplies to entertain us and keep our spirits up, or to drive down to the Olive Garden a few miles away to bring back something special for my family to eat together.
If there’s one thing my Mother-In-Law mentions any time these events are talked about, it’s that I was a rock. My job, my focus, my only purpose in life, was to be there for my wife. Be supportive. Be calm. Be there.
Then, after thirteen long days of waiting and hoping to wait longer, on a warm Sunday night, my wife’s health began to decline and the baby’s health began to decline faster. A little after midnight, the doctors decided they couldn’t wait any longer and an emergency c-section was scheduled for 5:00 am “or sooner if we need to.”
I’ll never forget getting ready for that. The uncomfortableness of “the bunny suit” and the hair net, the smell of the mask mixing with my own dry breath, and the way the little booties on my shoes made walking to the surgery suite feel like ice skating in summer.
When I walked into the room, my wife was strapped down to the table with a brave smile on her face covering a look in her eyes like a trapped animal tied down to be a sacrifice. I went to stand next to her and I put her hand in mine. I watched the entire surgery over the screen, describing anything she wanted to know.
I don’t think it took three minutes from the first incision until our son was born. They held him up over the screen for a moment so mommy could see him, and then immediately whisked him away to the NICU next door to the surgery suite.
My wife looked at me, squeezed my hand and told me to go next door and see what was happening. I looked into her eyes, filled with tears, and bent down and gave her a kiss. As our lips parted her tears began to run down her face.
When I went through the doorway my son had disappeared through, I could only see one corner of his exam table between the ten or twelve doctors and nurses clustered around him, working with a calm intensity that still bordered on frantically.
I stood there and listened for any clue as to what was wrong. Any words that might sound like “getting better” or “improving” or even “stable”. I waited a long time. They never said anything like that.
After an hour, the lead doctor stepped away from the table and removed his mask. He introduced himself to me as the head of the Neo-Natal department and explained that my son was very sick. They needed to run many tests and there wouldn’t be any answers soon.
Then they bundled up my son and placed him on an incubator table, attached him to hoses and pumps and wires and every manner of device and gizmo, and asked me if I wanted to see him again.
He was so tiny. His little fingers could barely grip my pinky. There were tubes connected to his nose, and IVs in one of his arms and one of his legs. He was connected to a monitor that showed his heart-rate, blood pressure, blood oxygenation, and his breathing rate.
I didn’t need a medical degree to see that things were very wrong.
I went out to the recovery room and held my wife. She asked for details and I told her as much as I had grasped from the doctor. I repeated what he said word-for-word at least a half dozen times over the rest of the day as family and friends came up to speed on the story.
July 13, 1999. It was hot in Portland. Hot by even Phoenix standards. Windows were uncomfortably warm to the touch, and stepping out of the climate controlled lobby of the hospital and into the brutal heat of the day was almost physically crushing. But I needed to find something for my wife. Something that said “good job, I’m proud of you.” Something that said “I’m here, and we’ll get through this.”
I found balloons and a card with a cartoon mommy giraffe with her legs all tangled up, but her neck still upright, and the inside read “way to keep your head up!” It wasn’t perfect, but there’s a limited selection at Fred Meyer’s when you’re in a hurry and it’s more than a hundred degrees outside.
It was a long recovery for my wife. She couldn’t even keep Jello down for a couple of days. And what was worse was that she could only stand short trips up to the NICU to see our son before she needed to return to her room to rest.
As the week wore on things started to become clearer on what exactly was wrong with our son. His heart had both ventral and septal defects, his kidneys weren’t functioning and his lung development was significantly delayed. By the end of the third day of his life, he was no longer breathing on his own. Instead, a machine next to his bed quietly and methodically wheezed and clacked air into his body and expelled out his tiny, nearly unused breaths.
By the fourth day, mommy was able to spend much longer holding her son. And all the wires and tubes and needles that went with him. We changed his clothes, and adjusted his hat, and read Dr. Seuss books to him as he slept. Oh, The Places You’ll Go…
And then, after a week, his genetic results finally came back, and all the answers were given to us. He had Complete-Trisomy 9. An extra ninth chromosome in his cells.
If Down Syndrom is a Trisomy of the 21st Chromosome (and by extension, of the 21st SHORTEST chromosome), and causes that many complications…well, one can begin to understand why having a Trisomy of the 9th chromosome would be truly catastrophic.
As far as the medical staff knew, he was the first Complete-Trisomy 9 baby to survive to childbirth since at least the 1970′s. When genetic testing began. Placing the odds of having a child with that specific genetic defect at something approaching one in ten or twelve billion. With a B.
Worse, it meant that he would never be a candidate for the heart or kidney transplants he would need to live a somewhat normal life. Of course, he was also unlikely to be able to ever lead a normal life of any kind. Even a limited one.
It was late afternoon, and even though things were being explained, and we were finally getting answers…nothing was feeling any clearer. He was still laying there, filled with tubes and medicines and needing a machine to breathe for him.
We had waited for and hoped for and counted on getting “The Answers” and yet…yet nothing. No real answers. No solutions. No one was making it better!
We had a choice. We could keep doing this, keep waiting, and running tests, and praying for a miracle to make it better…
Or we could turn off the IVs, and unplug the tubes, and turn off the machines, and we could hold our child…just our child…for a few moments in a private room.
I remember going into the private room that was just off the NICU…I remember calling my parents…I remember howling like a wounded animal as I cried while I talked it over with my dad. I remember trying to make someone tell me what to do. I wanted someone else to make it better…that’s what parents do!
A Twenty-five-year-old child shouldn’t have to decide life-or-death for their own seven-day-old son…it’s unimaginable. I never dreamed even in my worst nightmares that I would be sitting with my knees pulled up to my chest, crying on the phone as I tried to explain to my parents that we were going to turn off the respirator keeping their only grandchild alive.
I remember walking down to the chapel at the end of the second floor hallway and prostrating myself before the alter. I remember pleading with God to make my son healthy, to take my life instead. I remember screaming at the alter at the top of my lungs. I remember that all that met my heart’s purest outcry, was silence.
I don’t remember walking back to the NICU.
I do remember holding my wife close as we told the neo-nateologist our decision to hold our son and not keep him hooked to machines any longer. I remember watching them administer the morphine to keep him comfortable with the smallest needle I have ever seen. I remember my wife singing softly to our son. I remember holding him for a moment without tubes, or wires, or beeping machines, or whirring respirators. I remember the small sigh he let out as he died in my arms.
I held it together. I cried…I wept from the bottom of my soul…but I held reality together. I put my arms around my wife and we walked to the elevator, out through the lobby and into the evening sunshine. But it was ultimately the heat. It slammed into me like a mallet against a gong.
Before I could walk across the parking lot and get into the car, I could feel reality flex and warp like a plate glass window in a hurricane. And I felt it shatter. Little shards of reality blew out away from me…everything I’d ever known, or wanted, or felt, or believed…raining down around me like starfall as we walked back to the little green civic parked in the parking garage. I couldn’t hear anything. I couldn’t process anything. All my senses were going numb as the sun was setting.
As a defense mechanism my body reverted to automatic pilot. I’d driven this route so many times it was second nature…no thought, no analysis, no words. Just grief. Like an overwhelming haze that steals time, grief filled every molecule of my existence. Choking out air, choking out thought, choking out time itself.
But even in grief, things had to get done. My wife was far from healthy, and she needed rest, but the next day we found ourselves planning a funeral. For a baby. We picked out a casket, and a cemetery plot, and program cards, and called our pastor and invited him to speak.
Sitting in the funeral home, I composed a poem to go on the program:
A moment in our arms,
Forever in our hearts.
We’ll see you again,
In the arms of an Angel.
I think at the time I even still believed it.
The day of the funeral was probably the most beautiful Saturday that year. Perfect temperatures, just a hint of breeze, not a cloud in the sky. I was surprised at the number of people that showed up for a funeral for a baby that all but five of them had never seen. More than twenty people from my and my wife’s offices were there, and probably fifty people from my extended family, some from hundreds of miles away, on what was a normal weekend for the rest of the world. Just another Saturday in July. I really couldn’t balance the two concepts together in my head.
I remember all the flowers were beautiful, and we donated them all to the church for that Saturday’s service. I remember staring for the entire service at the little white coffin. Hardly more than two shoeboxes laid end-to-end. We laid yellow roses on it, and they lowered it into the ground after we drove away. Eventually they covered it with a grave marker made of granite, polished mirror smooth, that read:
Kristopher Karl Charming
“Peanut”
July 13, 1999 – July 20, 1999
Our neighbors had gathered together to provide food, and family and friends stayed with us for a long time to talk and try to make life a little bit closer to normal. And for that I will always be thankful.
The worst was when everyone went home. In a quiet house, my wife and I couldn’t make our separate grief align enough to grieve together. I was afraid to truly grab the pieces of reality that I could still see scattered in front of me. They were sharp, and it would hurt to pick them up…if I could just make it through without touching them…if we could just go on with life and leave them alone…maybe they’d get better on their own.
After that day, if anyone asked me, “What’s the most difficult thing you’ve ever done?” I’d duck the question. No one wants to hear an answer like “chose to let my son die in peace rather than leave him hooked to life support machines waiting for a miracle,” or “planned a funeral for my seven day old son without jumping off a bridge.”
Also near the top of the list is “not punching out the self-righteous Christians who tell us that we should have prayed harder and trusted God more, rather than kill our son.” I’ve been told that by well meaning people who never faced anything like the scenario they are so quick to talk about. Telling me that my son would have gotten better, would have lived, if I’d prayed more, trusted more, wanted it more…that’s just a way to say that God didn’t love me enough…that he didn’t love my son enough to save him…that I must have done something wrong to deserve it.
People who believe in a God like that frighten me.
I wish that was the end of the story. I wish that was the most difficult thing in my life. But it’s not even close.
The advice that everyone gave us was that once we were given the ok, we should try again. That the joy of a new life would make the pain of losing the last one more bearable.
And so, as soon as we were allowed, we tried again. And it took a year. In some ways it was the longest, most stressful year of my life. I changed jobs, we moved to a new home in a new neighborhood, and it was proving FAR more difficult to conceive than we had expected.
Finally, FINALLY, we were successful again. Almost two years after that first EPT test, we had another peed-on-stick with good news. This time we were in the “high risk” category and we had TOP NOTCH care from the first day. We drove 55 miles one way every two weeks to see her doctor from the start. We had 8 different ultrasounds, including one of the first 3-D ultrasounds given at OHSU.
My wife was sick pretty much from the first day of pregnancy. Nausea, cramps, sore muscles, everything. The exact opposite of the last pregnancy. And the baby kicked like she was practicing for the hacky-sack world championships ALL DAY LONG.
But her blood pressure stayed good, and on June 13, 2001 our daughter was born. It was a great surgery, and other than getting stuck in traffic (in the same place as two years earlier) everything went like clockwork.
Slowly I was picking up the pieces of reality again. They cut, and sometimes I’d bleed, and sometimes I’d cut my wife…but I was holding them again. I was able to grasp them and not let go.
In my world, my daughter was important…but so was my wife. So was my job. So was making life go on. For my wife, nothing was more important. With our daughter she saw redemption for failing with our son. Nothing could EVER be more important.
Somewhere between our different grief and the difference in our daughter’s importance in our hearts…things began to change in our marriage. There’s a lot to that story that can’t be covered here…but five years later I knew I was going to lose my daughter. Not the way I’d lost my son…but I would ultimately lose her all the same.
My wife wanted a divorce, and I knew from the first moment she said it, that someday my daughter would leave my daily life. Someday I would become as distant in her world as my wife’s father had been in her’s.
I’d have given anything, and everything, to keep our family together. I didn’t want to lose even one day with my daughter…but there was nothing I could have ever done to change her mind…by the time she told me it was long past done for her.
We’ve done our best over the last couple of years to keep our daughter equally between us…but my ex-wife has found love again with a man in Oklahoma.
I could fight her for our daughter…try to keep her here, or something…but I can’t do that to her. In my world she is my beloved daughter. In her world, she is everything, air and water, light and dark…everything. My ex simply couldn’t live without her. And I can’t be the one to hold her here, hold her back from finding love. True love is wanting what’s best for the ones we love, even when it hurts more than anything.
I believe that I’ll be able to keep my relationship with my daughter strong enough that she’ll always know me…always know that I love her…always be able to call on me when she needs me…
But in just over a month she boards a plane and flies away. She will always come back and visit, but she’ll never “live” with me again.
And every day between now and then I have to hold on to the pieces of reality still in my hand…no matter how much they cut me, no matter how much of my own blood slicks their surface, I have to hold on.
Every morning when I wake up I can feel the pain as reality cuts me a little deeper, as it severs one more strand of my soul. And I have to open my eyes and carry on. But if anyone asked me “what’s the most difficult thing I’ve ever done?” Well, I’d have to admit it’s imagining a moment when my daughter’s flight has taxied down the runway and lifted slowly into the sky…away from reality as best I can grab a hold of it.
When I talk about my dragons, my demons and the things that evilly stalk my dreams in the night…the one that frightens me the most is that someone will see exactly what I am:Â Just a boy in a man’s body clutching the shards of his reality like a bouquet of splintered glass that’s dripping with the last drops of blood from his shredded grip.
What woman would accept such a gift? When I admit that I’m afraid I’m “too damaged” to find true love, I mean that even if I found it, I’m afraid I’m so cut up I couldn’t grab it and hold on.
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As a bit of a postlude, I thought I would mention that I recognize that there are many MANY people who’s troubles in life FAR exceed my own. Sexual abuse, personal violence, witnessing murder, there are SO many things that exceed anything that I’ve ever had to go through. And I have some tiny clue as to how they get through the day, they just grab hold, squeeze hard and do it.
When I was younger, a writing teacher told me that before I could write, I needed to go out and live life. I couldn’t write about it until I’d lived it first. I didn’t really believe her at the time. Now, I’d give back that lesson if I could.
In the words of the great Baz Lhurman, “It’s not things that you think are important in life that will get you. It’s the things that blind-side you on some idle Tuesday.”
If I could ever give one piece of advice, it’s to cherish your idle Tuesdays, but never trust them. Live your life like the next Tuesday will change everything you hold dear.
