We don’t grieve as the world grieves

Last night, I had the privilege of being somewhere most people wouldn’t think a privilege: I sat with one of my best friends in her living room, waiting and watching as her husband of almost twenty years passed from life on earth to eternal life with Jesus.

Only a couple weeks before, they’d found out that a supposed clot in his arm was actually a “mass.” After immediately beginning radiation, only a week or so later they were told the mass was actually a lot of aggressively growing masses, rapidly spreading throughout his body—and untreatable. The decision was made by both of them that he would come home with hospice care for the time he had left. The doctor guessed “weeks to a couple months.”

He came home on Friday. He died six days later.

Today, I’m pondering the nature of grief in a Christian household. From the beginning my friend has had peace, and her husband did as well. That doesn’t mean they would have chosen the pain—physical, often extreme, for him . . . emotional for her and their two teenage daughters—but it certainly changes how they reacted to it.

Instead of becoming angry at God, they turned to him even more steadfastly. Instead of becoming bitter, they prayed that others might see Christ through their behavior during trials. In fact, when I visited for a couple hours two nights ago, I walked in the door to the sound of worship as close friends played guitar and sang at his bedside. The singers included his daughters, who recognized that God alone was the source of their comfort.

So last night, when my daughter and I gathered a few things to spend the night, she decided to bring her ukulele and chord charts so we, also, could minister to our friends through music. Again, we worshiped, and again, the house had an atmosphere of peace, not despair. Amazing how that works.

There were tears, certainly, at the moment of that final breath, but overall, still that sense of peace that truly passes all understanding (Philippians 4:7). God gives us peace, and he guards our hearts and minds in the process. These guys knew who was guarding their hearts, and it got them through a night that will change their lives forever, leaving a hole that can’t be filled by another person.

My friend’s fifteen-year-old daughter even recognized God’s providential timing of her father’s death: a day later, and her best friend would have been out of town on a school field trip; her sister’s best friend (my daughter) would have been at the prom and not at her friend’s side. As it was, I got to witness four girls between the ages of fifteen and almost-seventeen comforting each other with a maturity that would have put most adults to shame.

In my friend’s own words, less than twenty-four hours after her marital status was changed to “widow”:

“I don’t know what the days ahead will hold but the girls and I are confident that the peace that God has given us will continue. We are blessed to have so many amazing friends and family members carrying us along! It is such a comfort to us to have people who will not only grieve with us but also rejoice with us.”

We do not grieve as the world grieves, “as others do who have no hope” (1 Thessalonians 4:13b), but as John 16:22 states oh-so-clearly, “. . . you have sorrow now, but I will see you again, and your hearts will rejoice, and no one will take your joy from you.”

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.

Thankfulness comes in all sizes

I read a post by Elle Todd the other day, Being Thankful, that brought to mind something we don’t often recognize: the things for which we can be most grateful are oftentimes not the obvious. In fact, they may have felt distinctly like not-so-great moments when they happened, and only in hindsight do we realize we are, after all is said and done, thankful they occurred.

I’ve written at great length—more than I ever thought I would—about the blessings that have come about as a direct result of how we handled ourselves during a time of great upheaval in our family. Most of those blessings have made themselves known only now, almost eleven years later. I won’t rehash the stuff I’ve already blogged about, but feel free to read my earlier posts (there aren’t that many to sift through, since this is a new blog) if you’re curious.

I had a huge post (big surprise there) in the works, based around all the “closed door/opened window” or “silver lining” things in my life, but deleted just about the entire thing when I realized it was so detailed as to be snore-inducing. (Elle, I really did want to steal your idea, but your post didn’t bore me and mine did, so you win this one.)

What it all boiled down to were two things: family and friends. Those two things were at the heart of my entire post. Everything I am thankful for somehow involves them. Finances, health, material possessions—they wax and wane, and we adapt, but the things that affect me most can always be traced back to friends or family.

It may sound trite to fall back on the ol’ friends & family thing, but I am sincere when I say I don’t take these things for granted. My dad died two years ago; he didn’t always have the best advice, he’d give our Christmas gifts back to us (“I don’t really need this; go ahead and just stick it in your car and take it home with you”) and he was kind of a Cliff Claven in many ways, but he loved us and loved his grandchildren. He had no tact, but you always knew where you stood with him, and he was generous with what he had. My mom is still around and doing well, even though we thought we were going to lose her within months of my dad dying. The cancer that seemed to be so prevalent throughout her bones two years ago is miraculously sparse right now with no chemo and no radiation. Big Thankful.

My in-laws rank right up there on my list of Big Thankfuls. Make all the mother-in-law jokes you want; you can all be jealous of me because my in-laws are terrific, from Pop & Gramma all the way down to the youngest cousin. I’m stuck by marriage with a family I would have chosen anyway.

This year has been a time of transition for me. Transitions are not always thankful moments, but this one is. I feel as if I’m settling in and beginning yet another season. This one involves my kids being older and a little more independent, which has allowed me, in turn, to be a little more independent. I’m not sure if that’s leading me to be more versatile or just lazier, since I don’t have to chase after them anymore. Still, I’m thankful for the next phase, because it’s different and new, which usually means exciting and interesting.

Being in-de-pen-dent (hearing it in my head as pronounced by Rudolph the Red-Nosed Reindeer) means I can pursue activities that interest me—I’m not limited to the things in which my children are involved. As enjoyable as those things are, I’m there for them, not for me. I don’t mind waiting my turn, as long as I get a turn once in awhile.

This year, it seems, is my turn. Yay, me! Through a quirky turn of events, I ended up with a freelance copy editing job and a handful of new acquaintances who have very quickly become friends. Some of them, I swear, are long-lost family, and there’s not a thing you can say to convince me otherwise. The Big Thankful in this instance is not only having a job I enjoy exceedingly, but also knowing there are more people out there just like me. That may be scary to some of you, but trust me, it’s a relief to me. [Side note: this post ended up delayed by an almost-two-hour Facebook chat with one of those crazy people, and I hurt myself laughing. But I’m still thankful. Painfully thankful. And I know she’s probably hurting, too, so we’re even.]

The thing for which I’m most thankful, though, is this: I don’t have to wait until Thanksgiving to find a list of Big Thankfuls, or even Little Thankfuls. They’re there every day. For instance, I wake up. Every single day, I wake up. And if you don’t think that’s something to be thankful about, then try not waking up.

It doesn’t have to be anything grand or complex. It can be serious or funny. As long-term as “I’m married to the man of my dreams.” As short-term as “That conversation was hilarious.”

The important thing is to recognize it for what it is: a blessing. A bonus. A woo hoo moment. A victory.

Life with family and friends. Two absolutely indispensable things, in my book.

Long-reaching effects and what they’re worth

I’m overwhelmed. I’ll tell you right now that I don’t use that word lightly. In fact, I’m so overwhelmed that the first thing I could think to do in order to cope with it is to grab my laptop and write. I didn’t want to lose the thoughts whirling in my head by waiting any longer than I had to.

I spoke this morning at a women’s conference. My main job this weekend was to sing on Friday night and Saturday morning, but there was a teeny tiny part of Saturday that included a talk: I was asked to give my testimony. For those of you who are not familiar with Christian-speak, giving one’s testimony is akin to telling people how God has worked or is working in your life. Sometimes a person’s testimony involves telling about a turning point in his life, and sometimes it’s simply a recounting of how the day-to-day survival is going.

In my opinion, a person’s testimony should be a constantly changing thing, as alive and vibrant as the everyday changes in our lives. Yes, there are certain events that are pivotal—there may be a single incident, whether wonderful or catastrophic, that changes everything and turns us upside down—but to only ever focus on that one moment in time really does an injustice to the subsequent weeks, months, and years of growth and, perhaps, struggle.

Mine was a combination of both: talking about a past event (found in my previous post, “…and now, the rest of the story…”) and talking about my life now as a result of that past event.  I was not the main speaker at this conference—I’m just with the band, man—so it shouldn’t have been intimidating to get up there and talk for five or ten minutes. Right? Ha. Thankfully, these ladies were smiling and receptive and put me at ease immediately.

Five or ten minutes…I can do that standing on my head, and I can thank my Italian relatives for that gift we call “I make friends with strangers in public places.” In all honesty, I had the best intentions of speaking for about five minutes, but once I got going, well…let’s just say I didn’t suffer from a lack of things to talk about.

First, we showed the short God@Work video that discussed our family’s journey through the loss of one of our children. Then I told them what had been happening in our lives since the showing of that video at church. I’ve been amazed and thankful for every person who has approached me to tell me their personal stories…loss, struggle, depression, and hope. There is something to be said for knowing you’re not the only one who’s gone through difficult circumstances. Nobody wants to be in The Club, whether its members include widows, alcoholics, bipolars, parents who have lost a child, drug addicts, disabilities or those dealing with a family member’s suicide—but we are comforted to know that others in our particular Club understand completely where we’re coming from, and we feel safer with the numbers that show us we’re not abnormal.

What overwhelmed me this morning was not the recounting of my own event. The “oh my” moment came when I finished speaking. As I walked away from the podium, a woman stood up and announced that she’d been one of the Labor & Delivery nurses at the hospital when our son was born, fifteen years ago. Because his disorder was such a rare thing, the staff paid close attention to what was going on with him and how we, as his family, handled all of it. Unbeknownst to me or Tim, another nurse there was a regular attender at our church, and would regularly update the others, speaking of our family’s positive attitude and our unwavering faith. (Oh, if only she’d known how we struggled in those early days, simply trying to process what was happening while living at hospitals for the first two months of his life!) She also told the group that the Neonatal Intensive Care Unit during that period of time was a very dark place, and the doctor we’d spoken about in our video was someone who didn’t value the lives of the babies under her care as she should have. [We knew this firsthand, because that doctor was someone we actively avoided when she’d make her rounds—her first response upon seeing us each day was to tell us of ways she could relieve us of our burden, or to inform us that she’d probably only “work on him” half the time of a “normal” child if he were to have a cardiac or respiratory arrest. The NICU nurses would actually tell us when she was due to make her rounds so we could head down to the family lounge or the cafeteria. Someone you’d want taking care of your baby? Nope, and nope again.]

The wonderful gal today was happy to tell us all that the NICU is a much more positive place now, partly as a result of our family back then and how we saw each child as valuable and lovable, regardless of the statistics that told us not to get too attached. Our attitudes then affected today’s babies and their care.

Another friend spoke up then, after the first person sat back down. A mutual friend of ours was one of the private duty nurses in our home during the first year. We absolutely loved her, she loved our son, and we were sad to see her go when she got a different job. After losing a family member last year, she commented to our friend that she was struggling with the loss and wanted to be able to “grieve like the Dietzes.”

A third person approached me during the lunch break and told me she had worked at the funeral home when Tig was laid out there. I didn’t know this gal at the time, but she knew who we were and said she was glad she hadn’t had to work the day he came in, because it was difficult when the person who’d died was someone familiar, especially when it was a child. She did say, though, that she’d heard about our visiting hours and how boisterous (the polite word for “so loud”) our half of the funeral home was. There was, during that same week, another special-needs child who had died and whose visiting hours were the same day & time as ours. Many of the case workers had dealt with both families, and all those who came across the hall after visiting the family of the other child commented to us that the atmosphere was palpably different. They felt at ease with us, rather than awkward and uncomfortable.

I look back and wonder what we did that was so noteworthy. Was the time in the NICU that impressive? Was our grief process watched more closely than we’d realized? Do we throw a good funeral?

Even if you think nobody’s watching, there’s always someone who’s observing how you handle things, whether you walk your talk (to use an already-overused cliche), or whether you talk a good game until things fall apart. I say this not to create paranoia, but as a reminder—to myself, first and foremost—that my words mean nothing if my actions run the other way. You can’t fake that; I can’t, anyway.

If our attitudes and behavior helped even one family to have their child seen as a valuable person, it’s worth it. If our lifestyle caused even one person to want a closer relationship with the God I’ve come to know, love, and trust, it’s worth it. If what people saw in our grief inspired even one person to think a little deeper about why we trust a God who didn’t heal our child in the manner we wanted, then in the words of Jed Clampett, “Whoo, doggie!” Definitely worth it.

More often than not, we don’t know how our past actions have affected someone else’s future. I’ve had enough screw-up moments that I’ve wished nobody had seen. Today I had the wonderful privilege of hearing about some of the better ones, and the feeling was sweet.

Three amigos

… 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.

A life exposed …

Have you ever had your perception of someone changed completely after getting to know them better? I mean really changed. Like one of those situations where news reporters are talking to the ax-murderer’s neighbors, and the neighbors are saying things like, “We had no idea our kindly old librarian next door was stuffing paperboys into his freezer for years. We just thought the paperboys were changing routes.”

I have that feeling clinging to me right now. Don’t get me wrong: I’m no paperboy-freezer. We can’t even get a pizza delivery person to drive “all the way” to our house, which isn’t all that far from civilization, so I doubt a paperboy would bother, either. Not that lack of paperboy is the only thing stopping me from freezing anyone.

My anxiety is due to the imminent exposure of my private life. Not without my permission, of course. And I know it will help people. But sheesh, I’m not sure if I’m ready for all of it to be shared. People who have known me for a long time realize how difficult this whole “sharing” thing will be, and people who have known me only a brief time (less than ten years) might be surprised to know I’ve not had a carefree life.

I can share things in print, because I don’t have to watch someone’s face while they’re reading my blog. Whether you like it or not, I don’t have to know; you’re anonymous, I’m anonymous. Face to face, I’m good with the one-on-one thing, because I find it easy to talk to people, but having a large group (my church) suddenly privy to my heart is a little more public than I’m comfortable with. And I know it’s a whole lot more public than my husband is comfortable with.

And yet, he willingly shared himself this summer in a two-hour video interview which has now been edited into less than five minutes of Really Important Things that will hopefully encourage others to trust God—really trust Him—to know how best to answer the prayers of our hearts.

Even when those prayers don’t get answered in the way we expect.

That’s the true meaning of “for better or for worse”: it wasn’t easy or pleasant for him to share this much of his inner self, but he did. For me. For others. And maybe for his own heart’s healing. I don’t know if it’s possible to love him more.