I See Meaning In Everything.

Dan used the hall bathroom last night while we were hanging out in the living room. He left the door open since we were home alone (with the baby) and I heard him say, "Well that was weird."

Upon coming out, I asked him what was up. Still standing in the hallway, he said he'd been looking in the mirror while using the toilet (also weird...) and saw a closed bedroom door across the hall open on it's own. I stayed on the couch while we're having this short exchange. As I'm looking at him, the hallway light burnt out. He flicked back on the bathroom light, then that light burnt out as well.

Standing in darkness, he says, "Dangit!!" and flips on the dining room light so he can find his way to new lightbulbs. The light flicked on... but only for a brief moment because then it went out as well.

I think our visitor is back and I need to go stock up on lightbulbs.

Who You Are Is Okay

I inexplicably dance every time I hear music, whether it's a lame TV commercial or the theme song to Golden Girls (which sometimes my husband randomly sings just because he wants to see me bust a move, even though he'll thoroughly deny that he knows the lyrics). I am okay with my quirks. Life is so full of hardships and I wonder why wouldn't you dance if you feel like it?

Years ago, a group of our friends went out for karaoke. Listening to someone else singing, I asked a friend if she wanted to dance. She said, "Um, there isn't really a dance floor." I replied that everything is a dance floor, ("THIS table is a dance floor!!!"). We jumped on the table and danced until it flipped over and (unhurt) we laughed uncontrollably.

I'm pretty sure that anyone who knows me knows that I've given up on social norms. Yanno, I've had a ton of hurt, and frankly, I just don't care anymore. After a lifetime of variables in a blended family, I've officially thrown in the towel on what might be considered normal, and I finally find myself returning to what feels natural to me; reading, writing, loving, and dreaming peacefully while Papi visits with me. I wish that everyone could create a life that genuinely makes them happy.

This next part might sound odd to you. Rest assured, I am not crazy; just expressing my beliefs. (Some people speak to an invisible Jesus, so it shouldn't be that weird that I'm spiritual in my own way.) It's a known law of physics that energy can not be created or destroyed. Just because someone's body has given up doesn't mean they aren't still with us daily.

I miss my grandpa more than anyone will ever understand even though he and I still hang out at least a few nights a week in my dreams. He slams his fist on the counter exclaiming how mad he is about how his estate was dealt with, and waves his hands in the air saying he hardly knew the squatters that took over his trailer. I watch him holding Son on the back porch. He showed me how he died. He tells me that he'd prefer his photo to be put next to Grandma Delores' watch in my bedroom instead of where I'd originally hung it. I don't know what to make of all this, but I fully believe that my Papi is still fully with us. There is another grandpa that visits me often to chat, then apologizes that we have to cut our conversation short because it's time for my husband to wake up for work. Every single time, I find that Dan has overslept his alarm.

Nobody knows exactly what happens when you die, and I don't want to spend my life chasing what I think will make money. If you sustain your lifestyle doing something you don't love, just to keep living a life that doesn't make you happy, what's the point? Just living?

As long as my son is happy and healthy, I have no plans on letting life pass me by.

Moral of the story, if you want to dance, just dance. If you want to sing, just sing. If you feel like making up your own rap song while grocery shopping even though people are already staring at you because of your disabled son's loud medical equipment while your husband pretends he's not with you and awkwardly laughs, don't worry. People are people, and you never know how much time you have to spend with the important ones.

Instant Mom

It's 3:00am. I woke up on the couch 3 hours ago and shortly afterwards posted on Facebook:

"Nothin' like a good book on a Saturday night. In fact, so good that the baby and I fell asleep in the living room (he was in his swing) and didn't notice the night nurse's arrival for almost an hour. After waking up on the couch, I said, 'Did the dog bark when you walked in? I'm surprised I didn't wake.' She replied, 'Yes, and your security dog is so helpful that she even showed me where the TV is.' "

I've been laying in bed ever since. Just thinking.

As I wrap my arm underneath me on my side of our pillow, I remind myself of how wonderful it is to share a pillow with someone, even though I'm pushing aside the thought that it's mildly pathetic to only have one pillow. I snuggled up to the warmth of my snoring walrus of a husband and started thinking about all the other things we share. Our straws. Our sadnesses. Our burdens. Our hugs. Our happiness. Our hearts. Sometimes even Our toothbrush.

The love and happy times make all the hard times so worth it. I never thought it was possible to feel so connected to someone; almost as if he's just an extension of myself.

I am also incredibly in love with my son. With his situation, it took awhile for the motherhood mode to kick in. After being in the hospital for so long, it was almost as if he wasn't mine. Someone else was always there to change his diaper and administer his feedings. Intimidated by all the monitors and tubes, all I could do was look at him.

I can honestly identify the moment of true realization that my maternal instincts kicked in. Just days after being home, I was giving him a bath in his baby tub in the bathroom. As we finished up, I realized I hadn't grabbed a towel so I placed him on the fluffy floor mat and darted 3 feet to the hall closet. Within seconds I returned to the bathroom and saw my tiny, little, helpless baby wiggling around on the floor with an expression that almost said, "Help me, Mom." There ya have it; Instant mom: just add water.

Blah.

I'm trying to think of something to write about.

As I travel back in time through my blog history, I realize one very prominent trend. Seems that I go through spells where I can't shut up, then long periods of silence. Eventually I show back up, apologize for my writing absence, then start with an obligatory "update" post followed with promises to stay current. I want to avoid that rut this time but it's already been a month since my last post.

So let's see. Hmmmmm.

Being home with Son has been wonderful beyond words, although definitely still jumping hurtles as new obstacles arise. We "interviewed" a few different in-home nursing companies while still in the hospital and left feeling extremely pleased and comfortable with our decision. Turns out that we were fed a sales pitch with nothing but vacant promises. After spending weeks on the back burner, we finally decided to cut ties with the company and switch to our runner up. Feeling a lot more confident now and regretting we didn't originally go with #2. All the paperwork has been signed, doctor's orders have been faxed, and the first shift with a nurse from #2 company is tonight. Please wish us better luck this time around!

On a different note, my book is about 90% done. I keep changing my mind about the cover and still have a handful of stories to write. We kept a journal while living in the hospital and chronicled funny moments by quickly writing down a few key words. Now I have to find time to revisit that moment and put the whole experience out in words. This last part will be tricky because our daily hours of nursing are close to being reduced, since we've almost reached the "been home one month" mark.

I was going to be gutsy and pour everything out in the book. Expose myself 100%. Maybe some would think, "Wow, she's brave for putting that out there," or they'd think, "Uh, yea, we didn't need to know that". I've officially decided that I'm a pansy and pulled a handful of stories, and well as decided I just wasn't ready to write some of them. We've had some very dark times, and with so much sadness in the world, what's the point of adding more?

Hopefully the end product will be worth reading.

I'm not a fan of cliches but I haven't figured out how to define myself yet. Sometimes, when I tell someone a story or they make an observation about me, the expression I receive in response is... interesting. So at the risk of sounding cliche, I'll just say that yes, I march to the beat of my own drum, I'm a bird of a different feather, etc, etc, use your imagination.

I told you that to tell you this: my husband snores. We have slept separately and at different hours our entire relationship. We have a 3-bedroom house and had a roommate until it was almost baby time. When Roomie moved out, I readily took over the extra bedroom and claimed it as my own. It was a short lived celebration though because "my room" is now what we refer to as "nurse central". They do their paperwork in there, eat their meals in there, watch TV while the baby is sleeping, etc. Well, my entire personality flips on not enough sleep. After countless nights of maybe half-an-hour here or half-an-hour there while my snoring walrus of a husband nasally sounds like he's landing a helicopter on the roof, I'd had enough. I was literally crying with exhaustion and had no place in the house to sleep. Despite the cold outdoor temperature, I hauled a ton of blankets to the back porch and made a nest on the hammock. I instantly felt so at peace. Falling asleep to the sound of rain hitting the porch roof and occasional passing train was blissful.

The next day, I went out and purchased an awesome castle of a tent along with a nice air mattress. I then proceeded to construct the coolest backyard bedroom ever, along with an extension cord, lamp, bedside table, and tablet/phone chargers. In my eyes, I had a problem and I fixed it.

Apparently this is not normal behaviour... the nurses along with a handful of friends/family, upon hearing the news that sometimes I sleep in the backyard is often met with a slight head tilt and one raised eyebrow. Oh well, I love my fortress, and if sleeping outdoors defines keeping whatever's left of my sanity, I'm fine with that.