Saturday, January 31, 2009

Month-long musings

It has been about a month since I've posted last. A month ago, we had just learned about our baby having trisomy 13 (confirmed since then) and had the hustle and bustle of Christmas. I've had a month to think about all sorts of deep thoughts. I've decided that I should take some time to share my thoughts, since I've gotten the impression that many people who know me, aren't sure how to talk to me anymore. They seem unsure about how I'm taking our news and don't want to say the wrong thing. For those of you in that category, I guess you haven't figured out yet that I'm fairly tolerant of what people say to me as long as they seem to be well intentioned and polite. I prefer to give people the benefit of the doubt. So to help out these people and to share my thoughts with the rest of you, here follow some of my musings about our news of the last month.

I was not very familiar with Trisomy 13 before the diagnosis came. I was vaguely familiar with the term "trisomy" but I had to read up on it and learned quite a lot from the genetic counselor. It is a very serious condition and usually results in early death for those who have it. This was not something anyone wants to hear that their child has. It was a shock of course. But, I am not a person under the delusion that misfortune can't possibly come my way. Some people tend to say "why me?" when bad things happen to them. I tend to say "why not me?" There is nothing special about me or mine that would prevent misfortune from coming our way. Added to this, I am very aware of my age and the fact that the risk for birth defects increases as my age increases. Although the risk is much higher than if I were twenty years younger, I am realistic about the statistics. If I have a risk of 1 in 20 of having any chromosomal problem in a baby of mine, that means I have a chance of 19 in 20 of having a child with no chromosomal problem. Most women my age who have children, have healthy children. I was aware of all of this information before I became pregnant and before we heard the diagnosis.

Once we heard the news, we were very sad. But, we wanted information to help figure out what it meant for our child. So we took time to research what we could. It didn't make us feel any better. But, it did help us come to terms with what is knowable. Trisomy 13 results in several abnormalities in a child. No two children are completely alike in how they are affected. From the ultrasound, we have some knowledge of our child's abnormalities (at least those detected from an ultrasound). We know that we won't know everything about her abnormalities until she is born. We also know that we can't know for sure how these abnormalities will affect her ability to live and grow until she is born and is trying to live on her own (instead of inside Mommy). Many of these babies don't make it to birth. Many don't live more than a few days after birth. About 5% live 6 months. very very few live beyond that. That is what we know. That is also a little about what we know that we don't and can't know ahead of time.

When faced with the certain knowledge that you are going to lose someone you love in the near future, how do you react? How to you live after that news hits? Well, you still don't know when it will happen. You still have others that you love and care for to consider. You still have to go about everyday life. You still have to eat. You still have to sleep. You still have to do laundry and do basic housework. If you don't do these things, life becomes extremely unbalanced and you start to go downhill yourself in depression. Fortunately for us, we have three bouncy, energetic kids that need our attention and care. They help us to remember to live life day by day. After all, that is how all of us need to live. Today is the only day we know we have, so we have to do the best we can with what we have. I still have times (in the middle of the night when I get too uncomfortable to sleep well, usually) when I consider what is coming in the future and I start to miss my baby girl early. But most of the time, I'm in good spirits. I can still laugh and play. I can appreciate a sunny day or one of my children remembering to say please when they ask for something. I actually forget sometimes that people who have heard our news, expect me to be a morose, tragic figure, who is sure to be near tears at the drop of a hat. They come up to me with tears in their eyes and sad words and I feel the urge to cheer them up. I don't feel like a morose, tragic figure. I am also beginning to see our situation less as tragedy and more as life as it really is -- Riding down the road of life without the training wheels, so to speak.

I try to give myself perspective. My life is pretty good. Many others have had tragedy of one kind or another hit them. And yet, they survived and were perhaps the better for it. I like to think that God has his reasons for letting these things occur when and where they do. I do believe that God is in control, which is a thought that gives me comfort. We live in a world that is not perfect. It is corrupted by sin and the ripples of that cause all sorts of unpleasant things in our world. Yet God is able to take those unpleasant things and make something good and right come about. We tend to see our baby daughter's "abnormalities" as defects and undesirable. But, we don't know how God sees them. These abnormalities may result in a more precious relationship and stronger lessons in life than we would have otherwise had. She is still our daughter. It is still our job to love her and be her parents until she returns to God. She is still part of our family. None of us knows for sure how long we have here on earth. Life is a precious gift. We choose to face this situation with a love that is willing to feel the pain to come. We don't need to lose the joys of today, worrying about loss tomorrow. Nor do we need to shelter ourselves from future pain and thereby cut ourselves off from the support we have around us.

We have had a lot of support from people. I know we have literally hundreds of people praying for us. We have family and friends who are willing to help any way they can. We have good doctors who are doing the best they can to be helpful, supportive and give us the best care they can. I feel blessed by this crowd of people rooting for us, and feeling sorrow for us, too. The load is lighter because of it. I don't know why this tragedy in our lives feels so non-tragic right now. We really would have preferred to have another healthy baby. But this is our current reality. As a result, we seem to be learning things about life and faith that we would not have learned any other way. I wish I could say more about that now, but I don't think I can until the time and the perspective of hindsight helps me do so.

I also feel blessed that I am still in good health. The pregnancy itself is going as it should. The only thing wrong is a chromosomal problem that has severely affected our daughters physical development. When birth comes, that will be the time of decisions and our next chance to really know much more about how our child is doing. We don't know how well or poorly her abnormal organs will work. We don't know if she will live long enough to bring home. We don't know what life will look like during that time. But, I haven't been worried about my own health. I've been able to get my usual exercise. I've been able to continue caring for our kids and home. Tim has been able to continue working and not worry about things at home. I've been able to continue homeschooling and planning for next school year's work. I like to think that I'm mentally healthy, too. I am not in depression, which I imagine is a temptation to many in such a situation. If I am somehow mentally unbalanced and acting strangely, no one has brought it to my attention yet. So I have hope for the future.

Faith, Hope and Love... hmm. That sounds familiar. Yep, that is what gets you through the tough times alright. It's a combination I highly recommend.