When News Hits Close To Home

I couldn't help noticing this story recently. It is a story about a woman who blogged about having a terminally ill baby. What do you know, we had a terminally ill baby. When I read more, she claimed that the baby was a trisomy 13 baby. We had a trisomy 13 baby. She claimed that her Christian faith kept her from aborting the child, but to carry it to term. We made the same decision. Lots of people followed her blog and sent her encouragement... same here. The key difference was that she perpetrated a hoax... it was all a lie. Our story was true. Many people are upset with her. Some want her to be prosecuted, but there isn't really any way to do that. She apparently did it to work through some issues that she did actually have in her life. The article states:

In her apology, Beushausen said she began writing the story as therapy but became addicted to the attention it generated. She said she lied "to a community of people whose only intention was to support me through this time and that is wrong, and for that I am sorrier than you could know."

I saw references to this story several times, and the angle seems to be that lying on the internet is just wrong and should be treated as a heinous crime. I would like to say for the record that whether or not lying is a crime it is still wrong. But people have lied for various reasons throughout history. As a librarian, I have always been amazed that people seem to understand someone lying verbally, but they are aghast if it happens in print. Somehow they believe that newspapers only print truth. Book publishers only print truth. The Internet only prints truth. Hello out there! There is not some magical process that prevents lies from entering print media. You have to evaluate truth or falsehood the same way every time. Consider the source and how reliable it is. If you don't know the source, you can't tell how reliable it is. If you follow a blog site for a long time, you may get a better feel for its veracity. Is it backed up by supporting facts? If the story is a very personal one, it is harder to tell.

I also wondered how many people would start second guessing our story since it sounds so similar.

But I am getting off the topic that I really wanted to pursue here. All of that is dealing with the issue of lying to the public. I really wanted to deal with the object of temptation. Before I saw that story, I had already noticed that there was a temptation to people who go through tough issues like we did. Until you are in that situation you may not realize it. And if you are in that situation you may give in to the temptation before you realize it is there. The temptation is to take undue advantage of people's good will to you. Let me take you down the road with me for a while and maybe I can show you what it is like.

When I first got a call from the hospital that they noticed something unusual in our ultrasound, I was proud of myself for having the presence of mind to sit down while they described what they found and why they needed to have a more detailed ultrasound to determine more fully what the situation was. I told Tim what they told me and we were very concerned. We knew that something bad was likely happening, but we knew nothing more than that and we started telling people that we needed prayers.

At our appointment for the second ultrasound, they described the concerns they had based on the first ultrasound and then we had the second one. The pictures were much better and they confirmed the problem. As another avenue of information, we decided to have an amniocentesis done that day, which did confirm trisomy 13. We were shell shocked at the time. We sought information hungrily. I felt like I was moving through a haze going through life and our kids kept pulling me out of this hazy world of seriousness into the present where I still needed to play with them and feed them and love on them. I still had to prepare for Christmas. We shared with everyone our news so that they could pray with a little more information. As a result we were inundated with prayers, concern, love, and good wishes.

The fact that we still had to get on with our lives helped and so did all of the attention people were showing us. I am sure the prayers we didn't even know about helped too. During this early time period we had to make basic decisions like continuing the pregnancy. This is the time when I did most of my mourning for our daughter. Because of the discomfort of the pregnancy, I often found myself awake in the wee hours of the morning. That is the worst time for a troubled person... everything seems bleaker then. It was also the time when we were first public about our trouble and had people coming up to us to find out what was happening. We frequently had people telling us how heart-broken they were for us. They kept asking us how we were doing, asking how we could possibly be managing through it all, and volunteering to help in any way.

Before long we had people telling us how amazing we are and how strong we are. Not all that long ago I had someone I barely know tell me "you're a good christian woman" (out of the blue, as we passed each other, with no other context). Not only do I not really know what she meant by that, both Tim and I are puzzled by these things.

Now we would like to think that we are all the nice things that people are saying to us. However, from our perspective we are simply trying to do the best we can and didn't have a whole lot of choice in dealing with the diagnosis of a trisomy 13 baby. Yes, we did have to make a few choices along the way, but that doesn't change the fact that it had to be dealt with one way or another. We were getting a lot of attention. People were being very good to us. People were making us dinners nearly two months after our baby died. When my doctor asked me (over and over again) how I was managing, he was impressed by the support we were getting.

Do you start to see where the temptation comes in? First you get lots of attention. Then people start saying really impressive things to you and about you. People decide to put their desire to help into action and you get physical help in one way or another. Before you know it, you get kind of used to getting the attention. Then you start getting a big head over how wonderful people say you are. Then you start to receive physical benefits from people who are showing you their love for you. That can be addictive. Apparently that was what happened to the woman in the news story.

Now the reaction to this woman who lied seems to be that people are feeling that their good actions were given to the wrong person, who benefited from it and they feel burned. I want to say that just because someone committed a hoax, should not keep people from doing good things. But I will say that people in the real situation do have a temptation to take undue advantage. So, I will also say to those doing the good works for them, "don't be taken advantage of." I have seen someone wrap herself in what seemed to me to be a cloak holiness. She was frequently used as a motivational speaker who was guaranteed to make people cry as she would tell her story. I knew someone with a terminal illness that rubbed me the wrong way, when I saw her wanting to be treated extra special by everybody all the time. I saw a couple who seemed strong at the beginning when they lost a child, but who went through a very troubled time for many years after because the strength was more show than substance. In all of these cases, I had a little bit closer dealings with these people than a passing acquaintance so I saw a difference between public behavior and private behavior. I don't want that kind of thing to be part of my story.

I would rather people see me for who I am. I am not extra holy. I do not consider myself somehow stronger or especially blessed to handle trouble. I like to think that what we all face in life is common to man. The rain falls on both the godly and the ungodly after all. Instead of saying "why me?", I think the more appropriate question is "why not me?" So, all the extra special treatment felt a little odd to me. It was very helpful. It did do us some good. But I think it is appropriate for a season. It shouldn't become a lifestyle. At least it shouldn't be a lifestyle for the person receiving the special treatment. It is very appropriate for the person giving it as long as they spread it around to everyone.

Are You Familiar with the Book of Job?

Since I've been able to catch up on some computer things lately, I find that I have a few things to post on my blog. So while my husband is busy with chain maille, I'll share some of my recent thoughts.

I have found myself contemplating the book of Job lately. Now, I don't know many Christians, let alone non-Christians who are very familiar with this book of the Bible. They may know the general story line that Job goes through a lot of suffering, but if they look any closer, they tend to get bogged down in the language and give up reading it. Tim has actually taught the book of Job at church a couple of times and I have found his approach helpful in understanding the flow of the book and the big ideas presented. So, I'll share his method to give you some background on how I came up with some of my ideas I wish to share later.

First, When you read the book of Job, you need to read the whole thing in large chunks. It is a story with an introductory narrative and ending narrative. The main portion of the book in the middle is a series of speeches in the form of a debate between Job and his friends where God gets in the last word. If you read the book more like a Shakespeare play than a storybook, you have a better idea of how to go about it. Most people stick with the easy reading of the beginning and end, but leave out all of the meat of the middle. Almost all of the main points in the book are made in the debate section. They are big issues on suffering, justice, wisdom, God's involvement with mankind, and life after death. Job is a man who through no fault of his own is placed in the midst of suffering that most people never experience. He is a man of great faith and trust in God, and his suffering is a test of that faith. In the debate section of the book you see him progress through his struggle from a why me? attitude to nearly grasping the need for the resurrection. Along the way his friends debate with him using all of the various arguments people have used throughout history to explain suffering and the justice of God. They even use what is considered orthodox theology against him. Job points out that their arguments don't hold water and don't fit his situation and what he is going through. In the end, God himself speaks approvingly of Job and his struggle to understand, but blasts his friends for maligning his name.

In reading the book of Job, you have to be willing to wrestle with the big issues of life and not be content to fall on platitudes. There is a lot to make a person squirm in this book if you think that you have everything figured out nice and tidy.

So, with that as a brief background. Let me say that I've been feeling lately that I've been gaining insight to the dynamics between Job and his friends. Many of you know that we are expecting a baby who has the chromosomal anomaly "Trisomy 13" and as a result of this she is not likely to live long. Since we were hoping for a healthy baby to cherish for many years to come, this was a big shock. Since learning of this diagnosis, we have come to terms with it and are doing the best we can by living life in the present. We are not ignorant about what this means for us or our baby. We have researched what it is and what it will mean for our lives. We understand the underlying causes and what medical hope there is. Yet we do not feel ourselves to be suffering in anything like Job's situation. In fact, it sometimes feels like we have to encourage the people around us who are suffering for us. We know that when our daughter dies, we will grieve. Knowing about it ahead of time, just seems to provide glimpses of the grief we will have later. But in the meantime, we find ourselves on a completely different page than the well meaning people who are trying to encourage us. They seem to think that they have to bolster our faith (since we don't give the answers they expect to hear). It reminds me a lot of Job talking with his friends. Let me try to explain it for you.

I can see now how Job, having to live with his suffering on a day by day basis, has a different perspective than those who see it and its ramifications on a purely theoretical level. We are living with this trial in our lives in a similarly daily way in which we will live with it from now on, no matter what the outcome. We have had to make life and death choices for our daughter. We have to face the prospect of her highly likely death and that it would have to take some very big miracles to change that outcome. We have to face explaining the death of a little baby to her big sisters and brother. The reality that not all babies are healthy and thrive has come home to us. Life in America with good health care and low mortality rates has insulated us from how common this used to be and how common it still is in the rest of the world. We feel our faith providing us an anchor that holds us firm as we negotiate this unknown territory. We feel the need not for the big miracle to "fix" the problem for us and cause it to disappear, as much as we feel the need for the strength of simple faithfulness to get through what lies ahead.

Whenever I encounter one of these well-meaning friends, I am not offended by their comments. I am not insulted by insensitivity. They usually ask if there has been any change in the baby's situation. Or without asking any questions, start talking about how we need to keep praying for a miracle. I am simply struck by the thought that they don't understand what they are saying.

Now I am not one of those people who disbelieve in miracles. I have seen enough miraculous stuff to know that God still does miracles. I had an elderly friend who was literally going through kidney failure with the expectation that he had only hours or days to live. After much prayer by the people who cared about him, he mysteriously recovered. It amazed his doctor whom he then preceded to outlive by another 10-15 years. I knew a student where I worked who struggled with the difficulties of having one leg shorter than the other. She sought healing for years and was miraculously granted that the length of her legs would match and she no longer suffered the effects of the problem. I also knew briefly a young woman who was struggling with the physical recovery from having been hit by a car several years prior to my meeting her. She had the un-nerving way of mentioning how God talked to her. She kept praying to God for healing. One Sunday she told us that God said that he was going to heal her. Three days later she died after being hit by a car as she crossed a street. Sometimes miracles don't happen the way you expect them to. There are numerous stories out there that people can tell of miracles that have happened in their lives. But, when you are dealing with miracles, you are dealing with exceptions to the rule. If miracles were routine, they wouldn't be miracles and they wouldn't have their intended effect. The Bible is full of miracle accounts. The Bible is also full of accounts where miracles didn't happen and people were expected to live faithful lives anyway. I am convinced that God doesn't just hand out miracles like a fairy godmother, if we just believe enough he will do the impossible just to make us happy or save us from some of the unpleasant things in our lives. I think God wants his miracles to make a difference in the big picture. We tend to be looking at a much smaller picture than God is.

Knowing what we know about our daughter's condition, it would not only have to be fixed in her chromosomes in every cell in her body, it would have to be fixed in the multiple organ defects that have taken place as she developed in the womb. That would be a big miracle. Would we be happy to have a healthy daughter? Absolutely! So why don't I pray for the big miracle? Because I can't see what "big picture" good it would do. People in our society are very skeptical. When faced squarely with a miracle like that, they do not decide "OK... God must really exist after all." They assume that the initial diagnosis was wrong, the tests were messed up, the ultrasound pictures weren't accurate or any number of excuses to avoid believing a big miracle. Would a big miracle in our situation do much good beyond our little circle? Somehow, I don't think so.

On the other hand, what about the small miracle, which is what I pray for. If God grants us the ability to live simple faithfulness through our trial, what good would that do? How many people are hurting and struggling in their lives? A lot. How many of them expect a miracle to save them from it? How many of them would instead find greater hope in their own lives by seeing someone go through a struggle successfully relying on God through simple faithfulness rather than that person being one of the few who are granted a special miracle? Somehow, the small miracle seems to me to fit better into doing the most good in the big picture.

So when I encounter these people who are trying to encourage me by telling me that God can do anything, don't give up, we're praying for a miracle, and so forth, I get the feeling that they are doing the same thing that Job's friends are doing. Unlike us they are not intimately connected with the situation, so they haven't really needed to wrestle with it and think it through deeply. It is very easy to sit back and rest on cliches and platitudes. It is easy to say what you think God should do, but that doesn't change the fact that God does what he does in each situation based on that situation. The moving of God's Spirit is not controlled by us to do as we wish. We are the ones who are supposed to be sensitive to God's Spirit to be thus moved and controlled to do as He wishes. It is so easy to have a surface conversation, say the "right" things, and be completely wrong.

So what are the real right things to do and say? It is good to listen. If you aren't sure if someone wants to talk about it, ask them if they care to talk about it. Until you hear the person who is going through some suffering or trial talk about it, you don't really know how they are doing. Only then can you figure out how to respond appropriately. If the person says something that shocks you or conflicts with your sense of the way things are or should be, don't immediately try to correct them. Try to understand that they have a different view of things based on their personal experience. Until you have a better understanding of their experiences, you may not have a complete view yourself. It is OK if people spend time wrestling with the big issues when they are going through struggles. Look at all the major figures of faith from the Bible, not one of them had an easy faith experience. They argued with God. They ranted and raged. And God worked with that. It was the people who thought they had all the answers, that God had trouble with. So if you are tempted to stop people from struggling with their faith, and just hand them the clean-cut answers you like so much, stop. Don't do it. Let them struggle. Instead, you might point them to examples of others who have also struggled so they can see something that they can relate to. It seems that in the midst of our struggles, we have the opportunity to understand things much more deeply and better, than we would otherwise.