Why do you seek the living among the dead?

I try not to be a person who makes sweeping statements or who makes everything into a drama, but I can say—with absolutely no exaggeration whatsoever—that 2017 so far has, in a word, sucked. Let’s even use two words and say REALLY sucked.

The year is young, only one quarter complete, so I’m hoping with everything in me that the trend will reverse itself. And by the very nature of grief, it must. Yes, it could get worse, but I’m going with the law of averages here and assuming things will ease as the months go by, and my heart will once again soar on a regular basis.

I haven’t posted anything on this blog for so long that it almost feels like starting completely from scratch. The past couple years were a whirlwind of activity and life changes that took everything in me to keep afloat, and every time I started to draft a post, I would find it irrelevant by the time I got back to it, months later. This blog has always been my “dear diary” of sorts, the most personal version of myself, and many of the things I began to draft were not the type of thing that could even be posted, because sharing what I was struggling with would have only hurt others . . . not that any of them read this, but I would rather err on the side of grace when I can (great advice given to me by a friend and coworker).

Last year was especially hard on many fronts, so I was looking forward to that magical fresh start that always comes with the turn of the calendar page to January 1. To be fair, January actually wasn’t so bad. It was full of determination, introspective moments, busyness, silliness, promise, and a few surprises. I had some new experiences opening up for me for work (both jobs) and for personal growth.

But then in February, I lost a close friend. Not due to a death, though it’s just as permanent. One day things were fine, and the next, the friendship was ripped from me with no recourse on my part. I spent most of the next month reeling, denying that this was my new reality and trying to make sense of it in my mind. It still seems unreal in many ways. The sadness of not getting my birthday phone call or texts that start with “I have this great idea . . .” out of the blue only cemented the oh-my-goodness-this-nightmare-is-real feeling.

All the while, life had to go on. I still had to work. I still had to love and take care of my family. I still had to get up each day and function because there was only one person, my bestie, I could talk with to try and sort it out, so the hurt had to be kept a secret. Talking about it hurt too much, and holding it in hurt no less.

I tried writing out my thoughts and it only made me cry more. And then it made me angry. And then cry again. Angry. Crying. Angry. Crying. What an awful cycle. Toss in a lot of bewilderment and disbelief, and self-medicating was starting to sound really good, though I didn’t go that route. I wondered if my former friend was hurting as I was hurting—as I still am hurting—or if it was a simple thing to dispose of that part of life, to dismiss it with an “oh, well.” In my worst moments, I wondered if the friendship was only on my end, and that our rapport was not what I thought it had been.

But the single phrase that keeps going through my head (and has been for weeks, in fact) is this: Why do you seek the living among the dead? Straight out of the Bible, that one. Luke, chapter 24. In that passage, angels at the empty tomb are speaking to the women who have come to tend to Jesus’ now-absent body. He’s not there, and the angels even tell them, “He is risen, just as he said.” I was struck by the thought once again as Easter approached.

Why do I seek where there is only empty space? Why do I seek joy where there is only disappointment? Why can’t I turn away from what is irrevocably gone and look toward the good things? There is plenty of joy around me, and I bask in it. And yet . . . why do I seek the living among the dead? Looking harder only reinforces that there is nothing to be found, and creates more of a downward spiral.

In my case, I am still struggling with the “dead” part of it. I am looking for a friendship that is no longer a living, vibrant, fun and active part of my life. I am looking for what once was, because I simply cannot believe it no longer is.

There is life all around me, and though I am enjoying it in a compartmentalized sort of way, the times when I’m tired or alone with my thoughts are still a huge battle. I sincerely appreciate the good things—and there are many, thanks to a spectacular husband, great kids, a bestie who knows all of it from start to finish and still listens to me, and wonderful coworkers—and yet I still feel the empty space. I replay conversations. I remember good times. And I get angry at myself that the good things don’t always feel like enough, because they are. In fact, they’re more than enough if I allow them to be. In fact, I have to allow them to be, because I have no choice; this is my new reality.

But I think it’s kind of like when you lose a child . . . something I’ve had experience with. There are the other children, and they are a great comfort, but it doesn’t negate that there is grief to be processed and someone is still gone. Those who remain are no less essential, but they don’t fill in the space and replace that which was lost. They can’t. Each space, each person, each relationship, forms a specific shape in a person’s life, much like a puzzle piece.

To lose a friend is no small thing. Not if that friendship was real. That puzzle piece is as unique as God created them to be. And only God can fill the empty spaces where no other piece fits. He has allowed me to be broken in many ways over the past few years, and this is now one more addition to the list. Have I mentioned that I hate being broken? It hurts like nothing else, at times a physical ache that rivals the heart-hurt.

The good news is that God’s pretty decent at brokenness. He’s waiting for me to give it over to him—fully—and believe me, I’m trying because I need to move on and stop looking behind me. I’m trying. I really am. I’m tired of feeling broken and I’m tired of not being myself anymore.

But Ecclesiastes 3:11 tells me this: “He has made everything beautiful in its time. Also, he has put eternity into man’s heart, yet so that he cannot find out what God has done from the beginning to the end.”

In other words, he has given me a longing which nothing else can satisfy, except God. I can’t grasp his plan. I don’t need to. Because he knows me and is waiting for me to hand over what is dead so he can point the way to what is living.

This year, I’m okay

January 20 has, for the past 11 years, been a lousy day in our house. January 20, 2003, is when we lost our almost-five-year-old son. Nothing alters a day on the calendar for the rest of your life like the day a family member dies. Each year from then to now, the Christmas and New Year holidays have come and gone, and all of a sudden, there’s January, in all its crappy glory. We’re all coming down from a sugar high, needing to get back into a routine, having to start up school again, fighting heavy snowfall, and dealing with full dark at 4:30 p.m.

And then comes the 20th. It wouldn’t be so bad if the day’s emotions were predictable from year to year. Unfortunately, emotions are neither predictable nor controllable. We’ve marked the day in a variety of ways over the years, from going out of town to watching videos of the kids to getting a small cake. Most of the recent years have been more of a quiet glance between Tim and me, sharing a thought here or there, or texts throughout the day. I’m not sure if the kids remember the exact day or not, or if they consciously think about it in the same way we do.

I find myself marking the day on the calendar in the same way I mark all our birthdays: with a heart drawn around the date. I’m not sure why I do that, since it’s not really a celebration per se, and I’m certainly not likely to forget it if it doesn’t have that heart around the “20”—but the new calendar gets put in place and there it is.

This year, I feel motivated to write about it, because I feel…okay. Not spectacular, but not struck (or stuck) with the usual January melancholy. In fact, I’ve felt joyful overall every time I’ve thought of Tig over the past few months because of so many wonderful benefits that have resulted from his short life, and yes—even through his death. It’s an odd perspective.

It’s shown me that no experience is ever wasted, whether good or bad, precise or all-encompassing. Treasure all of them; store them in your heart, because it makes the reflection that much more precious when the time comes.

The pain of losing him has never lessened, and I’m quite sure it will never go away; however, it’s blurred on the edges a bit, not because I feel it less but because (I think) I’ve learned how to deal with it better as each year has passed. Each day, each week, each month, each year has shown me how God used that time in our lives in a way that will never be duplicated; that revelation has turned my grief into wonder.

Psalm 30:11 says, “You turned my wailing into dancing; you removed my sackcloth and clothed me with joy.” (NIV)

I’m no dancer. You’ll have to trust me on this, because if you want proof, you’ll wish you’d trusted me in the first place. But my heart dances, in a way, when I sing, and I’ve been singing a pretty cool song in my heart lately.

This year—not last year, and maybe not next year, but this year—I’m okay. Maybe even better than okay.

… and now, the rest of the story …

[Warning: this post is pretty long, and although I never intended for it to be that way, I didn’t want to split it into two posts, because I’m probably only ever going to write about this once.]

A couple weeks ago, I posted some of my anxiety-ridden thoughts about having my private life put on display. The irony doesn’t escape me here: I can publicly post about not wanting people to know personal things about me. Yeah, whatever. I’m an enigma.

At the risk of sounding Paul Harvey-esque, I felt like that particular blog needed a little bit of followup, since the event is now over and people have been asking questions. I never meant to be mysterious; I was just nervous about the whole deal.

I have four children. No big deal, right? But this is something many people who “know” me didn’t know until last Sunday. They know my three teens/young adults, and that’s that. But almost eleven years ago, my husband and I experienced the loss of our not-quite-five-year-old son after a life of constant struggle. When polite conversation would prompt, “Do you have any children? How many?” I would feel disloyal answering, “Three,” or “Three still at home,” and being vague about it, but in most cases, I simply didn’t want to explain that we used to have four…and deal with the pitying looks and comments from the newly-informed acquaintance. People generally don’t know what to say when you drop that bombshell on them, and I don’t blame them. I don’t want to drop it.

When we go through traumatic events in our lives, those who walk through them with us already know the whole story, so it’s comfortable to discuss, refer to, or ignore if needed. Those who haven’t been there, well . . . it’s just easier not to introduce that whole chapter in our lives, and if it comes up at some point, it comes up. How many abuse victims introduce themselves as such, each time they meet someone new? Not many, I’m willing to bet. The same goes for the loss of a child. We try not to kill a lighthearted, innocent question of “How many kids?” and turn it into a downer for the other person. As callous as this might sound, what was a huge event in my own life is not relevant to most of my interactions with others.

This past summer, my husband and I were asked if we’d consider sharing our story about how we’d dealt with the loss of a child. Our pastor’s daughter, Lauren, was compiling a set of video testimonies from congregation members who had gone through difficult circumstances, for use during particular sermon series to encourage those who feel alone in their situations. After discussing the idea, hubs and I decided to forego our personal comfort and look at the big picture. We met with Lauren on a weekday afternoon and simply talked with her for two hours while she videoed. The end result can be seen here, edited to less than five minutes’ time.

“Our” video was shown to introduce a sermon titled “When the Bough Breaks,” which dealt with loss of babies and young children. I had to sit down and watch while a thousand people listened to the most raw moments of our married lives recounted by my husband and me. I won’t lie and tell you it was comfortable. At the same time, I felt a profound relief at not having to skirt around that special part of my life anymore.

And it was special. Let’s face it: some of the most life-changing times are those we’d never choose to go through, and would never want to relive—and yet, if given the do-over option, would never choose to skip. Some of the most wonderful things happen as a result of awful circumstances, and that’s just the truth of it.

Our third son, Tiggy (known as Matthew only to the grandmas and no one else), was born with Trisomy 13. Evidently, having more than two of any of your chromosomes is not a good thing, and having three 13th chromosomes has some especially big words and bad statistics attached to it. Severe to profound retardation. Mid-line issues. Organs in the wrong locations. Polydactyly. Low muscle tone. Hernia. Seizures. Apnea. Feeding problems. Deafness. Heart failure. Vision problems. Cleft palate. Those fortunate enough to be born alive face an 18% survival rate for the first year.

We had no warning prior to his birth that anything was amiss; in fact, it was my best pregnancy of all, with no morning-noon-and-night sickness for the first four months, no dehydration and stuck to an IV pole for two weeks, no aversion to meat, no cravings, no exhaustion. A sonogram in my final weeks showed the baby was “measuring small,” something that didn’t alarm the doctor or me. His arrival was unique in that he was the only one of our children to begin the labor pains on his own, a full week prior to the scheduled c-section. (After twenty-one hours of non-productive labor with our oldest which concluded with a cesarean, it had been determined by my OB that all children after that would be delivered via c-section.)

Once he was born, though, the immediate alteration to our lives began. I was not able to see him for the first twenty-four hours; I couldn’t get off my back due to having spinal anesthesia for the c-section, and he couldn’t be brought to me because he was in the NICU with a variety of wires and tubes attached to him. I cried when the maternity nurses brought me a little Polaroid so I could see what he looked like. The days blurred but for me, reality didn’t hit until I realized he was not coming home with us when I was released from the hospital.

Our lives became a whirlwind of surgeries, specialists, two-hour trips to the children’s hospital in Pittsburgh, medical procedures and techniques we had to learn to use on a daily basis, and the sudden loss of privacy in our home. Sixteen hours each day included the addition of a private duty nurse to our small family. Nighttime was filled with the sounds of machinery and busyness as the night nurses tried their best to pretend they were invisible. Daytime always had someone present to witness the moments of frustration or embarrassment that would normally only be seen by immediate family members. Therapists came and went, becoming as much a part of our family as anyone who was blood-related. Our two older children had as much fun with them as Tiggy did.

On Christmas Day of Tig’s first year, seizures were added to his list of physical problems. One typical seizure branched into a handful of types, ranging from grand mal/full body all the way down to myoclonic, which prompted him to jerk spasmodically when a light was turned on or when his picture was taken. Medications were tried and discarded, and we learned how to deal with the seizures as they occurred, but they were never able to be fully prevented.

We attempted to live our lives as typically as possible, and to some extent were able to do so. Going anywhere with the entire family was an orchestration of equipment and timing, and our nurses were simply dragged along if the outing was during their shifts. Our house more often than not smelled like the puke of whatever food we were trying to get Tiggy to hold down, and to this day, I can’t smell vanilla-flavored nutrition drinks without shuddering. (When, after trying numerous—and expensive!—brands of specialized formulas, we finally stumbled upon the simple combo of green beans and milk in a blender, one of his doctors said, “Well, it’s nothing I would have recommended, but if it’s staying down and he’s not losing weight, do it.”)

We tried to provide as much normalcy as we could—to the point where, when we told the boys I was going to have another baby, one of them asked if we’d have more nurses coming to the house. Being too young to know any better, I guess they thought all new babies came home with extra people to help out. We taught the boys how to help when we changed a trach, or a feeding tube, and they got a kick out of taking turns shooting meds into Tig’s stomach port.

During his final year, seizures began to rob him of all the skills he’d worked so hard to achieve, one by one. Standing was the first to go, because he couldn’t keep his balance (always precarious at best) anymore. Sitting went next, and then crawling was no longer possible. Finally the day came when he could no longer even roll over. But the hardest part for us was not seeing him smile anymore. My husband, especially, had always been able to make him laugh by roughhousing during their times together in the evenings, and to get no response was heartbreaking. We were dealing with multiple seizures per day (literally dozens), and they were turning ugly—uglier than what the average person pictures when they hear the word “seizure.” Seize. Stop breathing. Period. We’d get the oxygen and one of us would administer an anti-seizure emergency drug while the other would bag him until he’d start breathing on his own again. We figured as long as his heart was still beating, we had to keep going until something changed. One horrible Sunday stands out in my mind: he stopped breathing for over eighteen minutes while we continued to bag him and wait for the ambulance to arrive. Once the guys got to our house, they continued what we’d been doing, only in the ambulance . . . in our driveway. They really didn’t know how to proceed; he hadn’t been breathing on his own for such a long time, but yet his heart was going strong. When the seizure finally ended and he started breathing again, they brought him back into the house and left.

Though we didn’t go into this type of detail in our video (or it didn’t make the final cut), there were still people who questioned what in the world I was thinking at the end of the video when I said, “It was good.” How could that whole experience be good? Some were puzzled, and some were almost angry that I would say such a thing, as if I were carelessly tossing the word about.

Well, I’ll tell you what was good. Through all the garbage, whether it was dealing with medical complications or people telling us our “lack of faith” was hurting our son’s chances for healing, we drew together. I’ll be brutally honest: there were times, early on, when I was almost swayed into believing those people, doubting my own faith, blaming myself, and questioning God. I’d had two pregnancy losses prior to the birth of our oldest son, and ended up with another miscarriage after Tig but prior to our youngest . . . was something wrong with me that I caused this? Long afterwards, my husband told me he had been at his wits’ end during those “tossed by the wind” months of mine, wanting to shake me into sense and wondering if it would actually destroy our marriage if I didn’t stop being such an idiot (my word, not his). This might not strike anyone as odd if they didn’t know Tim and/or our relationship, but allow me to enlighten you: we’re the sickening couple who is always holding hands or sneaking a kiss; we have silly nicknames for each other and a plethora of inside jokes; we’ve never called each other names in the middle of a disagreement; he’s kind to me 365 days a year, not just on my birthday or Valentine’s Day. To think I might have lost him, permanently or temporarily, physically or emotionally, makes my stomach clench in physical pain, even now.

So where’s the good? We leaned on God when we had no ability to support each other. We found joy in the things others would find mundane . . . are most parents consciously thankful for the sounds their children make? We never heard our son’s voice until he was almost two years old, and able to have a cap-type device over his trach for short periods of time.  We thought it was great when our youngest started to crawl and taught her older brother how to crawl up a step or two. At three years old, our son was finally able to sit at a baby’s activity table and spin things, push buttons and move beads.

Our nurses, though frustrating at times, became like family members as they went through birthdays, holidays, pregnancy, pneumonia, and family visits with us. Most of them are still our friends today, all the more precious because of what we’ve walked through.

The best of the good came in the form of spiritual growth. As a Christian, I’ve gone through ups and downs of learning and failing, growth and stagnation. Having Tig was akin to getting a spiritual kick in the pants. I relied on God more than I ever thought possible. Much like someone who has always had “enough,” whether it’s money, love, security, or food, we didn’t appreciate the highs until we walked through the lowest valley in our lives. Things are seen in a different way when you come out of that valley, and you learn not to take anything for granted—even those things you swore were firmly built on rock.

When I think and say, “It was good,” I’m reminded of one specific day.

We were getting ready to bring Tig home from the hospital after yet another pneumonia complication, and I was changing his crib sheets. I was so discouraged, and as I went through the task, I was asking God what was going on . . . why did our son keep ending up in the hospital every couple of weeks, what was causing the repeated pneumonias, what was happening with all the seizure activity, etc., and I was pretty much pouring my heart out, asking for strength to get through the next round of whatever was coming.

I reached across the crib, and looked up at a framed print on the wall as I did so. It wasn’t anything fancy, just a simple watercolor apple tree with a Bible verse on it. I’d gotten it as part of a baby shower gift when I was pregnant with our oldest, and it had always been in the room of whichever child was the baby at the time. Over the years, I’d not really paid much attention to it; it was pretty, and the Bible verse was nice, but I’d pretty much stopped really “seeing” it. Yet I saw it that day.

I looked at the verse. “And whoever welcomes one such child in my name welcomes me.” Matthew 18:5.

It suddenly hit me: Matthew 18:5 . . . Tiggy—Matthew—born on the 18th . . . of May, the fifth month. 18/5.

God knew—more than six years before Tig was even born—that I would need to lean on that verse heavily someday. Right then, it was as if God spoke almost audibly to me about His love, not only for the hubs and me, but for Tiggy. He loved him more than Tim and I could ever possibly love him, and that was a whole heck of a lot. He used that simple nursery accessory to ease my heart during a really awful time.

I won’t tell you I never struggled after that point, because frankly, the day-to-day details beat us down more often than not. But I have never forgotten that day, and how much it meant to me—still means to me—that God made sure the pieces were all in place for the exact day I needed Him most.

Yep. It sucked to go through. But it was good.