Mental Fortitude? Sometimes Hard To Come By

Some guy named Einstein once said that “the definition of insanity is doing the same thing over and over again and expecting different results.”

Each day encompasses essentially the same thing: we wake up after a short night sleep, have breakfast, hang out with Liam, have lunch, hang out with Liam, have dinner, hang out with Liam, go to bed. Sprinkle in some family and a trip to see home/Ezra and you have pretty much nailed down our current life. During each of the past 43 days, we have expected something different than what has happened (both positive and negative), yet we wake each morning thinking that something is going to be different about today. The anticipation is tiresome and the routine has long lost it’s usefulness.

Walking back into the NICU this morning, there was a harsh realization that I really don’t like this place anymore. Sure the hospital and the NICU are well designed and well stocked with things that we need, but it’s just not the life that we want. The doors, the carpet, the smells, the sounds, and the routine are getting on our nerves in a big way – compound that with a winter storm that has brought the coldest temps in more than a decade – and you end up with a level of restlessness that is hard to overcome.

The one thing that we aren’t sick of? Our nurses.

As we walk by the folks that don’t have a private room, we think about how thankful we are to have the space and the ability to spread out. In the room we have a TV that features 4 local channels, 5 ESPN channels, 5 news channels, 5 Spanish speaking channels, and 6 basic cable channels….and it’s surprising (or not) that there is frequently nothing but junk on them. We have the internet, and even though that has proven a good escape at times, it still turns boring and lonely. Books? Magazines? Games? Movies? done and done.

Yet, there isn’t any option. This will either get easier or harder – and we only control a small portion of that.

The Artificial Sun

I have this idea to do two different and simultaneous series of postings…one about the equipment and things in the room, and another about Liam. Both will attempt to go a little more in depth about things that we have referenced or talked about here before – but I’m really not sure how effective or long this experiment is going to be. So we’ll see, and we can always abandon the idea if it just isn’t working. Oh, don’t worry…the postings about the things that you are used to hearing about will still be coming. So let’s begin with a little bit about the artificial sun.

In order to artfully explain what an artificial presence might be, normally I feel like there is a need to define the real item. However, since we all know that the sun is a smiley-faced orange dot with five or six rays coming off of it, there really isn’t too much of a need to go really in depth on establishing a base line for everyone to understand. But, in an attempt to create an artificial one of those, the designers of the Giraffe Warmer missed the mark all together and created something that is unfriendly and protected with a cage.

The Giraffe Warmer is the official product name of the bed that Liam is sleeping in. And this thing can’t be cheap…it’s got locking wheels, two pull-through drawers, a tilting sleep surface, oxygen tubing connections, two spot lights, two ambiance lights, an obnoxious warning light and alarm, a computer system that reads the baby’s temperature, and the warmer that the computer controls. It’s that very warmer that is the purpose of this bed, and it’s that very warmer that has been designed as the solar replica. The warmer is powerful, and does it’s job…the only problem with the design, is that it’s primary focus is on keeping the baby warm – and the baby is located about four feet from the warming element. Here’s the rub: when you (the adult) go to do anything with the baby (change diaper, change clothes, change bedding, etc), your head is somewhere in the neighborhood of 12-18 inches from the sun. This creates a space that is only momentarily tenable, and an urgency to get things done that is slightly abnormal – or you will end up tanned/burned and sweating like it’s summer in the Midwest. I’m afraid that there is soon going to be a single spot on my balding head that will look like it took a trip alone to Mexico while the rest of me stayed in Colorado for the winter.

While we have undoubtedly figured out more efficient ways to accomplish any task when Liam is in bed, things just take a certain amount of time no matter how fast you are moving. And this bed – as perfectly functional as it is – will not be missed.

FAQs: Part 3

This third and final (as long as we don’t think of anymore) installment in the FAQ series and it is attempting to address the most frequently asked and the most difficult to answer of the questions…

How are you doing?

There really isn’t any way to answer this adequately without spending hours describing the complexity of our emotions. The simple answer that I have most recently been giving people is “shitty, but we are hanging in there.” We lay somewhere between a shrug of the shoulders and a multi-session trip to a psychiatrist’s office. What I really want to tell people are things that I wouldn’t publicly say most of the time, and certainly wouldn’t publicly write (but there is this Marsellus quote from Pulp Fiction…).  I’m not even sure that I will be able to do a good job writing it down in this posting, but after sitting on this topic for a couple of weeks I decided to give it a shot.

A lot of the time, we realize that people ask this question in one of two situations: 1) it’s just what you ask when you see someone (akin to the grocery store clerk saying ‘how’s it going’). There really is little expectation of a completely honest answer in most of the situations where you find yourself on the receiving end, as the question itself lives more in the greeting side of the language than it does in the interrogative side. 2) you really want to find out the answer to the question, but the answer may be too hard to hear or share. This is largely where we find ourselves, and it’s not meant to sound like we don’t care about the answer, rather it is a simple reality that there isn’t a good way to express the difficulty of it.

Given the walls of the situation, there are several things that are certain….we are taking care of ourselves. We are talking with people here in the hospital about things that we aren’t talking with you about. We are doing pretty damn good as a couple. We disappear deep within ourselves, and other times can’t stand to be in our own skin. We are managing being parents of two very different lives. We smile and even laugh sometimes. We cry – a lot. We don’t get enough sleep (but what new parent does?). We are physically and emotionally drained by the end of the day. And while we wish that you could understand some of this, we hope and pray that you will never understand any of this. Sometimes we are a little stir crazy and sick of being in the hospital, however there is never a time that we wish we were anywhere but either with Liam or Ezra.

One of the things that has become really prominent recently is that we are desperately wanting a return to our normal lives. This may seem like an obvious thing, but for the first few weeks we found ourselves so focused on what was happening that it really didn’t seem like there was much outside of these walls. However, after being here for nearly five weeks, we just want our bed and our kitchen and our shower and our TV and our coffee and our forks and our ketchup and our moments throughout the day with each other. But we also know that it will never be the same as it was, or as it was supposed to be…and that weighs heavy.

To answer that we are ‘okay’ or that we are ‘hanging in there’ is to somehow try to give you an answer that is short and textable, but holds a lot more behind it. The meanings of those two things are almost completely different than if we were to say them under a different circumstance, but the reality is that they still hold a certain level of appropriateness. There are a few things that allow us to be ‘okay’ and to ‘hang in there’….our family, our friends (including CTE and CRFD), and the staff here. Without the love and support that we get from you, there is no way that things would be nearly as ‘okay’ as they are.

Please keep asking how we are doing. It’s very comforting to know that you care enough to want to ask the question, just also understand when the answer is a shrug of the shoulders or a simple ‘fine’.

FAQs: Part 1

Where are you sleeping?

It will be noted that ‘where’ is different from ‘how’ and I will answer both. We have spent every night at the hospital with Liam and each of those nights we spend in his room. To the matter of ‘where’: there is a pull-out couch that expands all of the way to the expansive size of a twin bed. It provides a very comfortable two inch thick plastic covered pad that is advertised as a mattress. We have purchased a foam pad to go on top of the mattress, but it now only makes it  feel a little less comfortable. We have graciously been provided one sheet, two blankets, and three pillows by the hospital, and have supplemented some on our own.

When folks hear that we are sleeping here, the immediate presumption is that one of us is on the bed and one of us is on a reclining chair; however we are both sleeping on the bed together – as it provides a little more privacy with a thin and mostly translucent curtain. Plus, it’s been nice to sleep close to each other, although we are again looking forward to the time when we will have the freedom not to be close on our much larger king bed at home.

Now to the question of ‘how’…depends on the night. For the most part the daily emotional toll has been so substantive that by the time it’s time to go to sleep, we actually don’t have much of a problem. There has been the occasional night of uncomfortable and restless sleep, but we are getting by. Plus with the addition of an every one in a while afternoon nap with Liam snuggling, we have been able to do alright.

How is the cafeteria food?

Well, I have learned a few things by eating in the cafeteria. The most important of those things is that ketchup packets suck. As a response, I would like to propose starting an activist organization that will take up the cause of hospital-cafeteria-goers nationwide and push to institute regular condiment dispensers for everyone’s sanity. Who’s with me?

The most useful tip that we might be able to provide anybody that would find themselves staring at days upon days of this sort of food is to actually eat when everyone else is eating. The cooks seem to try to create a stockpile of the hot food, thus creating an abundance of it after the rush is over – and no need to cook anything fresh. Sometimes the timing of everything simply doesn’t line up, but it’s worth waiting a few extra minutes with everyone else in order to get something semi-recently made.

All of that said, the cafeteria is actually a pretty good and cheap place to eat meals – especially lunch (it’s when everything is up and running and is by far the busiest meal of the day). Today’s lunch options included tofu and bok choy with rice, salmon with asparagus, garlic fettuccine, two different types of soup, a fresh sandwich bar, a salad bar, fresh pizza, and a regular assortment of grill food. We have recently seen everything from Swedish meatballs to teryaki noodles – and a lot of stuff in between.

Love

There is a line from one of those songs in the Best Of 2010 Playlist post: “Love that will not betray you, dismay or enslave you. It will set you free.” It’s a line that since hearing the song has taken on probably 20 different meanings and has applied to as many different situations…but none like this one with Liam. And it’s not entirely true. Love does betray you, dismay you and will enslave you…and at times confuses you. However, in my heart of hearts I also believe that love in itself will set you free.

This is tough and this is hard, and it’s unfair. We have received a lot of support, and a lot of people commenting about how we are handling this; but you need to know that we wouldn’t wish this on our worst enemy. There are fleeting moments that pass feeling as though things are going to be okay: whether we are spending some play time with Ezra or looking at a beautiful sleeping Liam – but we know different. Yes, in the greater sense of the word, I suppose that someday things are in fact going to be ‘okay’; but in the truer pragmatic meaning of the word, things aren’t going to be ‘okay.’ No matter the outcome, there have been conversations, discussions, thoughts, and sights that have forever changed the way that we will see everything – and not always for the better.

We do in fact rely on love to get through this: the love that we are given from our families, the love that we are given from our friends, the love that we are given from the nurses and doctors, the love that we are given from each other, the love that we are given from Ezra, and the love that we are given from Liam. Love is what holds us upright and keeps us moving. It’s what allows us to meet each day and the challenges that it presents – it’s the tie that binds. And all that we can do is fall back on it when we have no other place to go.

Completely Unrelated To Ezra/Liam: Best Of 2010 Playlist

Each year I put together my favorite songs that came to me in the previous 12 months..and in some archaic connection to 15 years ago, I keep the list short enough to fit onto one CD. There is everything on here from a pop radio tune (#2) to stuff that makes me want to jump from high places with a parachute (#5) to a definite British folk-pop influence (#8, 10, 15) to some local kids trying to make big (#18) to a song with as strong of a first minute as you will ever hear (#19) to my current favorite of the favorites (#6). PS – songs #8 and #10 are the far and away winners of the ‘most-played’ category for the year. PPS – Mumford and Sons at the Odgen this year goes down in the top-5 all time concerts.

So without further ado, here it this year’s Best Of.

1- Heaven’s On Fire – The Radio Dept.
2- 1901 – Phoenix
3- The Perpetual Self – Sufjan Stevens
4- My Girls – Animal Collective
5- Last Jungle – Sub Focus
6- Careful With That Hat – Citay
7- Home – Edward Sharpe & The Magnetic Zeros
8- Rambling Man – Laura Marling
9- Saw You First – Givers
10- Sigh No More – Mumford and Sons
11- Honey Let Me Sing You A Song – Matt Hires
12- Perfect Plan – Sarah Jaffe
13- Ocean Floor – Typefighter
14- The River – Anathallo
15- Tomorrow’s Fool – King Charles
16- Heart Of Steel – Galactic Feat. Irma Thomas
17- Things Will Never Be The Same Again – JJ
18- Sea Bed – Pan Astral
19- Never Hear Surf Music Again – Free Blood

Baby Countdown: T-Plus 1 Day

Sorry, there was no posting yesterday because the sickness has been too rough on us to write. The due date has come and gone, and now we focus on staying sane through the waiting period. Each day seems like an eternity and each moment seems like it could be it. Ahna is feeling mostly better, I am on the beginnings of a rebound (I think), and Ezra seems to be slipping into a cold. Tis the season.

Baby Countdown: T-Minus 4 Days

All holiday-ed up and ready to go. We have added a 4th stocking to the mix and have gotten the house all ready for visitors throughout the season (yea, right – it’s as ready as we could hope with a 2.5 year old).

Lights About Town

The three of us piled into the car this evening and headed on a 5-stop tour of the best that Castle Rock has to offer when it comes to Christmas lights. We saw everything from a Griswold house (see below) to a professional setup between two homes to a five home cul-de-sac that is all tied together with lights over the center of the road.

If you happen to live in town, here are the streets: Foursome Way, Lantern Circle, Cherry Street, Neptunite Way, and Silver Dollar Court.

The 8th Night

We celebrated the final night of Hanukkah a day later since I was at work for the actual night. The night was highlighted by a tired kid that didn’t really want to listen to us at any point and found himself in/near time-out on several occasions lighting all of the candles and being able to spend a reflective moment together. Here’s to the miracle of Hanukkah!