… 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.

Thoughts on the homeschool gig

I was reading a blog post today (Brenda Kaye Rufener’s Homeschool Diaries) that listed some of the dumber things people say to homeschoolers. Many of the questions & comments she mentioned are things I’ve experienced over the years. Some of them make me laugh, some leave me dumbstruck, and some of them make me want to bring out the Fist of Death, much like Alice in the Dilbert comics strip. 

Most times, I know those who comment are simply ignorant of what we do, and they might even be speaking from genuine concern, so I try to be polite. After sixteen years of homeschooling (not the same child, thank goodness!), though we don’t get as many questioning looks about being “out with kids during school hours” anymore, there are still those who just don’t get it.

In the early years, we came up against a lot of resistance, even from family. My in-laws, usually super-supportive with any of their children’s endeavors, expressed their concerns early on, telling us how “children need to be around other kids” and saying they “needed to be out there in the real world.” After taking our boys, then six and eight years old, to a baseball game, their surprised pleasure was obvious when they realized our sons “weren’t strange and scared in a crowd or anything.” Their surprise was certainly second to my own surprise that they’d even considered worrying about it. After that event, though, they began getting the kids school supplies during the “back to school” sales, and we knew they were on board.

For some reason, homeschoolers attract that same breed of person who will rub the tummy of a pregnant stranger, not ever considering all the reasons why that is simply not an OK thing to do. Strangers in the grocery store (who would never approach me if I were shopping alone) seemed to have no awkward feelings about asking my children why they weren’t “in school” that day. When the child being questioned would say, “We homeschool, and we’re done already today,” the stranger would then proceed to give me unasked-for, uninformed, undesired advice. Did I ask for it? No. Did I want to stand there and listen to it? No. Did I value the person’s opinion? Not a whit. Did I grin and bear it? Sadly, yes. I hate being rude to strangers, even if they’re being rude to me. (My children will tell you I’m much better at being rude to people I know and love.)

When she was younger, our daughter had a T-shirt which had, “YES. I’m homeschooled. YES. I socialize. YES. I had class today,” written in bold letters across the front. It elicited many smiles and comments whenever she wore it. A cashier at a store once asked me, “But what about friends?” After I pondered what in the world that was supposed to mean, I asked her if she had friends. She said yes. I asked her if all her friends were from her grade school or high school (she was in her 30s, I’m guessing). She said no, as I’d anticipated. And yet she was puzzled when I asked why she thought my children couldn’t make friends outside the boundaries of a school building.

All of our children have been involved in various activities, from the standard swim lessons to riflery and archery clubs, youth groups and praise & worship bands. One of my favorite non-homeschoolers-don’t-get-it moments came when our oldest, Noah, was at the weekly archery shoot. One of the guys found out he was homeschooled and said, “Really? But you’re so normal!” and then proceeded to ask, “So do you have any friends?” Noah looked around at the gang of friends he was with (many of them homeschooled) and slowly said, “Uh…yeah…” But the guy couldn’t leave it at that; he persisted, “But do you DO anything?” at which point Noah exasperatedly said, “Well, I’m HERE, aren’t I?” We still laugh about that.

People make a big deal about the so-called “socialization” question [insert ominous music here]; in truth, I got in a lot of trouble in school for my brand of socializing—which is different from socialization, but that’s for another post. Or not. I was a good kid, mind you, but I liked to talk. Talking is part of being social and all, you know. Some might say…OK, well, all might say I still like to talk. Hey, it’s what I’m good at. And half of me is Italian, so add all the hand motions and I get a good cardio workout when I talk. But my point is that I don’t recall traditional school being a place where socializing was encouraged.

Strangers worry far more than I do about whether my children learn “what they need to” at [fill in the blank] age. They wonder how my children learned how to stand in line, something I suppose I never realized was part of a well-rounded curriculum. They wonder if I know what’s best for my children, and I wonder why they’d assume someone other than my husband or me would know what each child needs. They worry that my children might cheat on their tests, and I feel bad for all the kids whose teachers don’t make them fix their incorrect answers. Isn’t that the idea of learning?

For all those concerned: my children (who are old enough now at 13, 18, and 20 that “children” isn’t quite the right word for them anymore) are just fine. They have friends, homeschooled, private-schooled, cyber-schooled and public-schooled. Christian and non-Christian. Black, white, Asian, Mexican, Puerto Rican, and more. Friends who live in the US and friends who live on the mission field overseas. Musician friends and artist friends. Friends who are athletic and friends whose thumbs are in great shape from playing video games. Fat friends, skinny friends, friends who climb on rocks…you get the idea.

I actually like my kiddos. They can be some of the wittiest people on Earth when they’re in the mood. They make me laugh more than most people do. Our mealtime conversations are the stuff tell-all books are made of. They irritate me—most people do, sooner or later—and I irritate them. But overall, we enjoy each other. I firmly believe the time we’ve spent together because of homeschooling has benefited us in many ways that have nothing to do with academics. We get to spend time together when we’re fresh, not just at the end of the workday when everyone’s spent and cranky and hungry. They get to see that I’m a real person with a life real interests. They realize I can be fun sometimes. It’s not enough to make them ditch a fun event with friends in order to stay home with dear ol’ mama, but I have heard my boys tell their friends on occasion that they were just going to stay home because their dad had a day off from work and we were all just going to spend a day together.

Thankfully, we’ve never really had to deal with the huge teen-angst blowups people talk about. Not that our kids don’t get upset sometimes, or lose their tempers, but it’s rare. And when they do, they typically apologize later. No one has ever screamed, “I hate you!” in this house—not at me or my husband, anyway—and for that, I’m truly thankful. Angry words can be hurtful enough without throwing that into the mix. They might have been angry enough to say it, but it never came out verbally, and that’s important.

I thought about this today as our daughter (the youngest) came to me and said she wanted to take a bike ride, “so I don’t lose my temper and blow up at someone.” For the life of me, I couldn’t imagine what would have prompted her to be angry enough to blow up at anyone, considering that she’d slept until almost noon, sat around reading for school, and was fairly inactive until we asked her to start a load of laundry an hour after waking (one of her standard chores which should need no reminding). I wanted to say no, because we were only fifteen minutes from sitting down to our main meal of the day (luppertime, don’t ya know). But she looked upset and my hubby, typically the voice of reason, gave her the OK. When I asked her if it was anything I could help with, she said, “No, just teen girl stress stuff.” Then she grinned and added, “You wouldn’t know, of course, since you’ve never been a teen girl before.” She didn’t storm out or stomp and slam the door. She simply left, knowing we weren’t going to push, and when she came back an hour later, she had a genuine smile and all was well in her teen world.

Maybe I’m stretching the connection, but I can’t help but think the scenario would have been much different if she were a peer-dependent girl in a traditional school who thought her parents’ opinion was far less valid than that of her friends. So to answer the stranger who worried that it would a go badly because “parents shouldn’t be around their kids that much,” I would say it’s worked out just fine for this family.

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.

Another blog?

How in the world did I end up with another blog? And why do I feel compelled to use it? Nobody would know if I simply allowed it to lie fallow in the online world. But I somehow got tricked into getting this, and am not the type to waste the gift, such as it is.

I’m not even sure what this one will cover. My other-other life, I suppose. The real one. Whatever that means.