What Have I Learned in 100 Posts?

So the other day yielded post number one hundred in this space. You may recall I said there was something going on in my head that led to the seemingly meaningless BLOG entry? I've been reading back over old posts. In fact, over the last few days I think I have read every word in all 100+ posts. It seems there was a gradual progression where the dynamic shifted. I'm positive it wasn't intentional. I am not even certain it was conscious. But at some point in the last year, it happened.

As it turns out, this blog, although entitled Molly Elizabeth Brown, is actually about me.

It's a sham, I know. I apologize. All this time I have been lying to you. But let's face it, if this were called Sean's Blog I wouldn't even read it. My readership is at an all-time high, and I have recently gone international, but I'll understand if you just want to call it quits.

This started as a place to inform people about Molly's condition and what was going on. It was meant to be all about Molly. And now it has some of that and, additionally, some of my thoughts about life in general. But what is it really?

It's completely filtered. It's completely censored. It's me writing only the things I want to share. Occasionally I offer some quick glance into my most intimate thoughts, but they're only my most intimate shared thoughts. There is an entire segment of my brain that exists only in that very space - not in this space. I often find myself driving in the car; or sitting on the couch; or in my office, when I am faced with a thought. That thought is then twisted around in my head until it becomes something I am willing to discuss here. In its raw form I'm not certain it's suitable for public consumption.

But I will say this: in the few instances where I have let my guard down and more than alluded to - but actually expressed - real emotions, I have been impressed by the people who have picked up on it and called me on it (offline comments; emails; phone calls). In most cases they had advice to offer that was worth listening to. In some cases it was just nice to know people were paying attention.

I want this site to be more than just a place where I give a daily (or weekly) update on Molly and how she is feeling; I'd like this space to be useful; maybe help someone learn something.

That may be asking too much of myself, but for now, I'll start with what I've learned. One hundred things, in no particular order. And if this were a reading comprehension exercise, many of these probably would not be found in the existing text:

1. Trisomy 18 occurs in about 1:3000 live births and is usually fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days. However, a small number of babies (<10%) live at least one year.
2. Statistics, these in particular, can be frightening.
3. My daughter is tough as nails, and is determined to be part of the <10%; if she has anything to say about it she will be part of the smaller percentage that lives for many years.
4. Optimism is a powerful emotion.
5. Realism always trumps optimism.
6. You can think for your entire life that certain issues are black and white and as a result would never render making a decision difficult. But unless you've been forced to actually make that decision, don't be so sure.
7. Spending hours alone with your thoughts is healing.
8. Spending hours alone with your thoughts can make you crazy.
9. My son kicks more ass than Daniel LaRusso.
10. I feel badly for people who have no one looking out for them.
11. I question whether or not people who have no one looking out for them are looking in the right place.
12. Complete strangers can become close friends just by doing something to show they care.
13. People who genuinely care are never worried about saying the wrong thing.
14. People who don't actually care make it clear by saying nothing.
15. I don't dislike people as much as I thought I did.
16. Faith doesn't define you, it directs you.
17. Praying doesn't necessarily mean you go to church, kneel in the pew, and ask God for forgiveness. You can simply sit quietly and ask no one in particular if they can help get you through the next five minutes.
18. It's not going to get any easier. That's true for just about anything.
19. The fastest way to get completely out of shape is to stop exercising and eat take-out and/or hospital cafeteria food for one month.
20. It only takes twenty minutes to get from my office to RWJ in New Brunswick, when my wife calls to tell me she is in an ambulance with "lights and sirens."
21. Genetics counselors, so far, have not knocked my socks off.
22. Nurses, so far, have completely amazed me. In every hospital, on any floor, in any scenario, nurses rock.
23. Perspective is a funny thing.
24. One of these years I am just going to give up cheese for Lent.
25. My dog can "hold it" for fifteen hours, if necessary.
26. The flexibility I've been afforded by my employer has been invaluable.
27. The medical benefits made available by that same employer have enabled us to continue living in our house.
28. My grandfather said a lot of things that make more sense now.
29. Family is a relative term.
30. Our family - immediate, extended, or otherwise - keeps us from breaking down.
31. Nurse practitioners can prescribe medication. And on top of that they get to wear street clothes.
32. As bad as it gets, someone has it worse.
33. The spider dies at the end of Charlotte's Web.
34. There are times when I can write for hours without stopping.
35. There are times when I go days without thinking of something worth writing.
36. The phrase "worth writing" is completely subjective.
37. My wife is a saint. She is well over the three miracle requirement.
38. I really, really love the New York Giants.
39. I really, really don't the New York Times.
40. Molly knows exactly what I am saying to her, and her expressions are as good as a verbal response.
41. Tomorrow comes whether you're ready for it or not.
42. There are not enough hours in the day to do all the things you want to.
43. There are barely enough hours in the day to do all the things you need to.
44. There is no way to put more hours in the day, unless it's the one day at the end of Daylight Savings Time.
45. Occasionally people know what you're talking about when you say Trisomy 18 and when they do it will likely catch you off guard.
46. There is a web site where many of those people congregate and this web site has been an invaluable resource for us from day one.
47. The people who run the organization that makes that resource available to us, mostly do so for free and I was so impressed that I recently volunteered to join them.
48. I find it hard to believe my little boy doesn't know what's going on, which makes me even more proud of him.
49. I'd have to say the same about my little girl.
50. There is a point in time where people grow tired of reading things, even though you may not be tired of writing them. This is a good point at which to stop.

Fifty more to come. But not too soon.