Triathletes for Trisomy 18

The T for T18 page is set up on the Foundation web site. You can get to it by following this link. I'm also going to add it to the permanent links section to the right. An email will be coming to many of you in the very near future. Thank you in advance for your consideration.

Late Week Ramblings

It's been a week since my last post. I apologize for that. However, I have said before that when all is well with Molly I tend to have less to say. And, thankfully, she has been doing quite well. Making her smile and laugh does not get old.

In my Drafts bin right now are several follow-up posts on my Hospital Rating System. I just haven't been motivated to complete them.

And it's also been a weird week for me emotionally. The tragedy on the Virginia Tech campus is still so fresh in my mind I find it difficult to feel sorry for myself. I don't remember what number it was, but somewhere in the top 50 of what I've learned from 100 posts is, "no matter how bad it is, someone has it worse" or something like that. Psychologically, I can't even compute/comprehend/grasp. I just don't get it.

Not to make more excuses, but I've also just been plain busy.

Most of you probably read Erin's recent CaringBridge update that explained what I've been up to on the volunteer front. I've recently joined the Board of Directors for the Trisomy 18 Foundation and I have been working closely with the Executive Director to create some strategies for increasing the cash flow of the organization to help further its mission. Much of the work is long-term, and most of it would not be interesting to my faithful readers. However, in the short term I will be collaborating with a team of triathletes to help pilot a program where we actively raise funds for the Foundation through sponsorship. I casually mentioned this effort in my previous post, and Erin described it a bit in hers. The email should be out shortly with full details and the variety of ways you can help. Donations to the Foundation are just one way.

For the record, I have no idea how I am going to complete this race. By this point last year I was well ahead of where I am today. And last year I was only running a sprint distance!

I know I have mentioned the Foundation before and there are plenty of links to its web site in this space, but, seriously, if you have never taken the time to read any information on T18 besides what I post here I would urge you to go ahead and do so. All the stories are so remarkably different, and all the people are so inspirational.

The Foundation web site recently launched a program called Legacy Pages. I'll actually be using this capability to enable online fundraising for the NJ State Triathlon, but most of the pages that are up now are parents telling the stories of their children. It's hard not to notice that the majority of the children have passed. This link will take you right to the pages, if you're interested.

My mom is in town for the weekend. It will be nice to spend some time with her. And the weather is supposed to be really nice. I'm looking forward to getting outside and running/riding my bike. No reason to prolong the weekend any longer.

Two Thirds Old

Earlier this week Molly Bear turned eight months old. Very exciting. She weighs just under eleven pounds after losing a fair amount of weight as a result of her recent hospital stay.

She's been having a great week: tons of smiling; a lot of movement; minimal spitting up; and all around comfortable.

It's been less great for Erin and me as we traded a stomach bug earlier in the week, and I now have some annoying cold thing. But it's not about us, it's about the Bear. And she is eight months old and happy about it.

Speaking of anniversaries, ours is Sunday. Seven years. Unbelievable. You'd think we'd finally be going to Chang's, but we're actually going to try some new place not far from here. We figure we've waited this long for Chang why not put it off a while longer. Plus my mom is coming to visit next weekend so we're hoping to take advantage of the extra hands in the house and sneak off for dinner one night. Two weekends in a row out to dinner. Alert the media.

Be on the lookout for an email from me in the next week or so. I am going to begin a fundraising effort for the Trisomy 18 Foundation that will hopefully help bring in much needed funds for the organization's mission, and keep me focused on training for the NJ State Triathlon in July. I hope we can count on all of you to help us out. More to come.

What Have I Learned in 100 Posts? (51-100)

So I banged out those first 50 pretty quickly. I thought it was going to be a little harder than it really was. So without further ado, the rest:

51. My short game suffers the most when I don't have time to practice.
52. Being angry is a waste of energy.
53. When it come to gyro: Greek Lady. If she isn't around: Efes.
54. It is possible to sleep on a stool if you're tired enough.
55. The Family Sleep Rooms at CHoP, while a nice gesture, are just barely big enough for a full-sized human male.
56. Theoretically one could watch The Office on a small screen in the corner of their monitor, while doing actual work on the remainder of it.
57. The last year has been brutal, and I can't even imagine how much worse it would have been without my in-laws.
58. What doesn't kill you does, in fact, make you stronger.
59. The Unsinkable Molly Brown was a reference to Margaret Brown, a wealthy American socialite and philanthropist, who survived the sinking of the Titanic.
60. Molly Brown was wealthy because her husband, James Joseph Brown, hit it big in the Colorado gold mines.
61. My grandfather's name was also James Joseph Brown.
62. We knew none of this before our daughter was born.
63. The Unsinkable Molly Brown is now a reference to my daughter.
64. If not for my buddy Rob, my dog would have to "hold it" for 15 hours more often.
65. Easter mass on the 18th green at Harbour Town tops any other.
66. A baptism, in the hospital, less than two hours after delivery, is an experience you'll remember forever.
67. Ditto having eighteen people in your hospital room at one time.
68. Karma wins.
69. It is possible to convince yourself that something you have said or done has created whatever challenge it is you're facing.
70. That's why karma wins.
71. Our pediatrician has an "I [Heart] Hot Moms" t-shirt too; I bought it for him.
72. It is possible to re-insert an ng tube almost anywhere; including a restaurant, a table in a break room, the back of a car, etc.
73. Regardless of how good you get at re-inserting them, the person to whom the tube is attached will always be better at extracting it.
74. I am incapable of being serious for too long.
75. Not saying anything negative is harder than you'd think.
76. It's possible to fall asleep in the Meadowlands while 80,000 people make a lot of noise.
77. They make Burberry shirts for babies.
78. You can't explain it, but moms just have a way of making things ok.
79. There are times when McDonald's is actually precisely what you need.
80. Molly doesn't like to have surgery, so she puts it off until she decides she is ready.
81. Hundreds of people will come out for a pasta dinner on a rainy, cold, Friday night, if they believe in the cause.
82. There is no way to sufficiently express your gratitude to people who would do something like that.
83. Have I mentioned anything about how much I love my wife?
84. Macy's in Herald Square may have the real Santa, but there are still seven fakes up there with him.
85. The Internet is taking over - otherwise I would never find out that Molly was coming home from people who read my wife's CaringBridge journal before me.
86. The terrific people from Peapod will do all your shopping for you and bring the groceries right into your kitchen.
87. There may not be anything worse than a person who thinks they know what they're talking about.
88. With very little difficulty, people I don't even know can find and read all this stuff.
89. I actually pretend they want to.
90. There are certain times during the day when it takes longer to go the last four miles to CHoP than the first 40.
91. Not only do the numbers on the monitor mean something, they're not all that hard to understand.
92. Every hospital has a play room, and you need a three year old to find it.
93. If the parking garage doesn't validate, it may be cheaper to take a car service.
94. It's possible for a baby to spit up after every single feeding, and not even seem to care.
95. If everything happens for a reason, I'd like to know what it is.
96. I refuse to admit I am old enough to have grown up problems, but that doesn't change the fact that I do.
97. There are some things you just don't talk about.
98. No matter what.
99. I'm a touch superstitious.
100. There are a lot of people out there looking out for us. So thank you.

Seriously though, there could be a hundred more things I've learned in the last year. And probably twice as many on a list of, "Things I Haven't Learned." There is no way I could acknowledge everyone who has had an impact on us in that span of time, nor could I appropriately thank you all for doing the things you all do to show you care. I just have to hope you know who you are, and what it means to us.

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.

Happy Easter

We had a nice relaxing weekend and managed to get some new pictures on the Shutterfly site. Gavin had a boatload of egg hunts and never seemed to get tired of them. I think he was sneaking candy the whole time, to be honest with you.

Molly's been doing really well the last few days: she is tolerating her feeds well and sleeping like a teenager. When she is awake - as she was all day yesterday - she is alert and happy.

When we got home last night we were all exhausted. Gavin managed to stay up talking to himself in his room until after 9 pm. Molly made it through most of the Sopranos. Mommy didn't even come close. It always amazes me that I can be physically tired from doing virtually nothing. The price you pay for the benefit of sitting around for a couple days, I guess.

Molly Likes Holidays

Molly has returned home after nearly two weeks in the PICU at RWJ. It seem she likes to make it home for any major holidays. But we're planning a small Easter gathering to minimize the exposure to people, hence germs, hence respiratory infections. We're not "those parents", by any means, nor do I feel we would need to explain that to anyone, but we're going to do our best to keep her out of the hospital for as long as possible.

She slept in her bed last night and was perfectly happy doing so. She spent a few hours in her bouncy seat before bed. Gavin is extremely excited his mom and little sister are home. Erin is relieved to be home. I am looking forward to resuming my training schedule (I have five triathlons scheduled this summer, the first of which is June 3, and I have been on my bike and in the pool just twice).

So all is well for now and I have only good to report. Lent is almost over and I am not sure how I fared overall in my sacrifice. I think I did pretty well, considering.

In the works: "What I've Learned in Posts 1-100". Hopefully that gets done this weekend. Thanks for checking in. It's nice to know you're all out there.

Journal Update Notification

Since I am apparently the last person to sign up for Erin's Journal Update Notification, I presume most of you have heard the good news about Molly's impending release from RWJ. You know my deal: a little superstitious; don't want to jinx it. But it seems likely tomorrow is the day. Report is that Molly had another great day today and she and Mommy enjoyed some cartoons, and a few cooking shows [not sure why Mom would be watching those since she doesn't cook anymore]. But, again, you all probably knew that already.

What a Difference a Day Makes - Post 100

Seriously, when I got to the hospital last night to visit Erin and Molly, it was like I was walking into a different room. Well, actually, a lot of that had to do with the redecoration the previous night's nurse had undertaken for some feng-shua or whatever that stuff is. But it was also like a different little girl was there.

Molly looked fantastic: Her color was much better; her breathing was easier; her numbers looked good; and most importantly she seemed happy and comfortable.

If you had asked me over the weekend when she would be coming home I would have told you there was no way to guess. If you asked me now I would tell you she is heading in the right direction. I won't jinx it, but she seems to be making good progress.

I'm sure the celebrity treatment she got from her nurse yesterday, and the short walk they took outside, helped the healing process. I'm glad I made the drive up there yesterday afternoon, even though it was only for a half hour. Seeing her that happy made my day.

Now for the part that excites me and no one else: This is the 100th post on the Molly Brown blog. When I think back to post number one, on March 10, 2006, this space has come a long way. And when I read back that far, I am reminded that we have too.