This article is in honor of the anniversary (yesterday) of the death of our daughter, Virginia Grace Pelham, born with Trisomy-18 on February 3, 2006. She died 21 days later, having lived out the time that her malformed body was able to keep functioning. As you might expect, this was a hard time for our family—for Kay (my wife) and James (our then-three-year-old son). But it seems that we came through it better than some might have expected. I say this because a few people told us so; they told us how devastated they would have been had it happened to them. And so I thought I would share what we were thinking at the time (and still think), in hopes that it might be useful to others as they go through similar trials.
It occurred to me shortly after she was born that Virginia Grace was simply not the person we had been expecting. We had envisioned a little girl of normal health who would live out a full and rich life. Kay would teach her to cook and to play the piano and such—that had long been the dream—and we would homeschool her as we were then preparing to do with James, and we’d all be a happy family of four–not counting Miss Kitty, and the dog I was determined to get someday. But that’s simply not who Virginia Grace was. She was someone else. Someone different. She hadn’t come equipped to live out that life we had envisioned. No, she had come equipped to live 21 days, and most of that time sleeping.
So we made the best of it, and adjusted as necessary to take care of our not-what-we-had-expected daughter. And we did a pretty good job of it, it seems. We three, along with our extended families, took care of Grace for three weeks, and then she was done with her short life. We had a funeral with friends and family present, and James and I buried her tiny casket in the family plot as the other mourners comforted Kay and each other.
Grace simply hadn’t been what we were expecting, so we could either adjust to that fact, or live in denial of it somehow. We chose to adjust. And that’s when I figured out that what was happening to us wasn’t something strange or mysterious or sinister, but something we had suffered many times before in our lives. It was disappointment. It was a really big disappointment, mind you, but I could not deny that that’s basically what it was. And since we knew how to deal with disappointment on a smaller scale, it stood to reason that we could handle this one, too, even if it was much bigger. And I think that it’s at this point that we managed to avoid the “Oh my God! What’s happening to us?” agony that some seem to go through.
According to the dictionaries, disappointment is what results when something or someone fails to meet our expectations or hopes. Well, that perfectly describes that situation, as Grace was simply not who we had either expected or hoped for. And to be clear, we were certainly not disappointed in Grace herself, but only in the fact that we had been expecting a different person.
When that disappointment became apparent, our instinct was to reason through it, rather than to shut down cognitively (as practically all people are probably tempted to do when under grief), and the reasoning proved to be a friend to us. I believe it also helped that we had seen parenting as something of an honorable, God-given assignment, and that once we realized we had been given a different child to take care of than the one we had assumed she might be, we did a respectable job of taking it somewhat as servants would—realizing that there was something bigger at stake than just our own drama and pain. We thought of it as if God had had us take care of Grace on her short visit, and we felt quite honored to have been entrusted with that short assignment, even though we had wanted so much more.
It wasn’t hard for us to reason, therefore, that “we can get through this”. We faced it head-on, sensing no need to protect ourselves from the truth of what was happening. We didn’t need to lie to ourselves or to ignore any of the facts. Rather, we let it happen while doing our best to care for Grace the best we could. And it did happen. She died. We grieved through that, and we talked it out continually each day in the weeks to come. My family sent us to Disney World for a getaway, but we took the trip in what would become our customary fashion; we used it as a fresh venue from which to keep processing and discussing what had happened, rather than to escape from it. Reason is indeed our friend—as if she were a member of the family herself.
So, we got through it. And all these years later, we still remember Grace, and we still cry. And we’re still proud to have had the honor of being her hosts and guardians on that short visit. And we’re still proud of the sweatshirt I had had embroidered for James when Grace was born. It says “I’m a Big Brother!” And he was a very good one. And we still wonder what it might have been like had Grace been the someone else that we had been expecting. She would be 13 now, and if she had turned out anything like her brother, she would have proved by now to be much more a blessing, and in more ways, than we could ever have anticipated.
But again, she was a different sort of treasure, and one of the many things that has come from her visit is this very valuable-to-us lesson about disappointment. It’s that peace-of-mind outlook that we can handle it, however severe it may be, and that we don’t have to shut down and hide, but that we can process it in real-time as we’re able, and keep talking it out. And we do. To this day, this is a way of life for us. We talk out our frustrations over career and money and over people who disappoint in various ways. We talk out our vision for how things could be better. We talk out our own failures and regrets—how we have disappointed ourselves. And we even talk out the quality of our own reasoning in real-time. Things like, “Am I thinking right about this?” and “I have mixed feelings about this; please help me to be sure that I’m seeing it right.” And we’re constantly talking out our ideas and the things we are learning.
It’s working for us, this way of life. It will surely be tested again in the future, probably even more severely than before, and who knows whether we will shut down then or keep reasoning and processing through the disappointment? It’s my intent at present, however, to keep on calling things what they really are (and nothing more or less than what they really are). And we shall see, I suppose, whether it keeps working as expected. What is certain, though, is that we don’t want to surrender ourselves to the quagmire of depression—of shutting down—of deciding not to care and not to function—of deciding to be irrational and irresponsible with reality. To date, I have never seen such a decision to shut down help anybody. They do it to avoid the pain, I suppose, but in my estimation, it makes the pain worse and it makes it last longer. (I certainly have experience with depression in my earlier years, so I’m not unfamiliar with it.)
We’ll see, of course, if we fare as well with future trials as we’d like to do. And perhaps we’ll fall into the trap of shutting down, even though we know better. But I’m glad that we do know better, and that we are—at least so far—brave enough to suffer the pain that life throws at us from time to time. It is disappointment, and we know generally how to handle that, even if we don’t like it. And on that note, I suppose that I have learned somewhere along life’s journey that I don’t have a like a thing to get through it.
My Dad used to joke that, “If there’s anything I can’t stand, it’s something I don’t like!” That joke pokes fun at someone with no pragmatic life skills at all—someone who is too cognitively underdeveloped to withstand difficulty and disappointment. And even though I did more than my fair share of pouting as a kid (and yes, I do catch myself micro-pouting from time to time even now), I have learned that pouting is generally a rebellion against reality—an irresponsible response to how things really are. It’s that defiant jutting of the lower lip and crossing of the arms in protest against how things have turned out, or how they must be. I don’t know where I ever learned to pout in the first place, but I can see that I have at least learned my way out of it for the most part, and that it no longer holds the promise it once seemed to hold—-that promise that at least I can somehow be “in control” by pouting, where I could not otherwise do so.
Perhaps, though, it’s a wiser aim to be in control of how I handle life, than of what happens to me in life, for surely, the latter is ultimately impossible—a fool’s errand, as they say. So I have learned to catch my pouting quickly—to nip it in the bud. (Thanks, Deputy Fife!) And while that doesn’t make for an euphoric life (and neither does pouting, mind you), it does make for a reality-based life, which in the long run turns out better than does the constant and inordinate running toward glee and fleeing from pain that so many are tempted to do.
Indeed, it’s probably the case that much of the good stuff that I have managed to learn so far in my 53 years would have been missed had I been busy hiding from disappointment. So that’s my philosophy about it, and while I’m sure that not everyone will think that this way of thinking is for them, perhaps some will find this both authentic and useful.
There once was a man who suffered much and got through it without compromising himself—without cheating or shutting down. He encouraged his best friends by telling them the truth of the matter—both the tails and the heads of the truth:
“In this world you will have trouble. But take heart! I have overcome the world.” John 16:33
He did not tell them that he had managed to evade the world, but to overcome it. He endured the pain, rather than running from it. He did not try to encourage them by lying about what they should expect, but emboldened them that they, too, could overcome. And they did! May we always have that courage.
One of the paradigms that Kay and I have embraced is this one:
The truth, the whole truth, and nothing but the truth, wherever it may lead.
It’s that “wherever it may lead” part that seems to be the most radical, for many seem to shrink back from the truth, if not merely for the laziness against having to ferret it out, then certainly on account of the fear of where it may lead. We could have deceived ourselves in any of a number of ways, I suppose, about Grace’s death. We could have determined, without any evidence whatsoever, that it was some sort of punishment from God, or that it was an attack from Satan, or that it was somehow our fault (we’d have to have imagined a specific way for this to be). But thankfully, we were content to let the truth be the truth, even if there wasn’t some terrible blame to be assigned to anyone—even if it were a simple accident in the formation of her chromosomes.
Because we were content to suffer the reality, we had no motive to embellish upon it and turn it into some curse for ourselves—which so many succumb to doing. Nor did we seek to blame the doctors or nurses or anybody else. There was no rage; no quest to avenge or to make things right. We simply let it be, resigned that in this life, we will indeed have troubles—and that this was one of those.
We do not regret Virginia Grace. No, even with the pain, that gift to us was a treasure. And surely, we are now better people for it, pain and all. She is inextricably woven into our experience—into our story—into “who we are”. And when I stop to reflect on all this, I realize that Disappointment, too, is our friend. Our friend, Reason, brings us insight and wisdom. Our friend, Humor, brings us laughter and mirth. But our friend, Disappointment, brings us humility and sobriety and learning—-treasures without which Reason and Humor would be lacking in their effects upon our lives.
Disappointment could be metaphorically counted as the tails of the coin of reality, and surely some see it that way. But no real coin can have a front side without having a back side, no matter how much we might wish otherwise. And if there is any plan to this life—any predetermined course of things we are to experience—what a shame it would be have to embraced as much of the heads as possible while avoiding the tails, for both are part of the same treasure. That may sound foolish to some, but I’m pretty sure that’s the truth of the matter.
How we handle what life throws at us says a great deal about what kind of people we are. And it also seems to have a lot of do with what kind of people we are able to become. For us, that short Virginia Grace chapter was not a chapter from a horror story, but from a love story. We embrace it, and are the better for it. And I wouldn’t have it any other way.