Takes Me Back

Music always takes you back. It takes you back to your first date, your first kiss. High school. Prom, the summer. It reminds you of years and seasons, moments. Events. Minutes, seconds and whole days. 

I watched the first two seasons of Orange is the New Black while Jack was in the hospital. I was hooked, like everyone else, because it’s addicting. Today, season three came out, and I have been dying to start it. 

Only, when I did, I found myself with tears streaming down my cheeks, and a large ball of anxiety suddenly in my stomach. It takes me back to those lonely, terrifying nights in the hospital with my baby, as I rocked him and watched him sleep. He and I shared a lot of Netflix time, but OITNB was the only show I watched 100% in those hideous pastel rooms. 

The theme song is haunting as it is, and for it to bring back the memories it does… well, I wasn’t expecting the deluge. 

Yet, as I was crying, I looked over at my beautiful, happy, just-got-his-first-tooth, big boy sleeping, and it’s amazing how much different he is from the last time I heard the opening song. 

“Taking steps is easy, standing still is hard.” — “You’ve Got Time” by Regina Spektor

Regina was wrong, because all of the steps he’s made in his progress are the result of incredibly hard work. Nothing easy about it. 

My mind will never remove the association between that very difficult time in our lives and this show, but every time I watch it, I get to smile and be proud of how far he’s come. 

The tears are worth it. 

How To Be The Voice Of Your Special Needs Child

My child’s doctor never tells me what’s next. I tell him. Or her. Or them. Or, if I’ve fired them from his case, the new set of “them.”

They don’t dictate what happens to him, because they didn’t carry him, love him before his first breath, spend hours in pain trying to birth him, or spend days, weeks and months in even more pain worrying about him.

The first month of trying to figure “everything” out, I nodded ferociously and said very little when the barrage of specialist came raining down on our sad little mint-colored NICU room. These are highly specialized, important, well-educated physicians, my head told me. They know what they’re doing.

It became disgustingly obvious that was not the case. And, the more I was repulsed by their lack of attentiveness and eagerness to help my son in a timely manner, the angrier and more frustrated I became. “First, do no harm,” includes being ignored while hospitalized. Continue reading

When Grandparents Lose Their Appeal

Originally published on EverydayFamily:

“As a military family, we are incredibly fortunate to be stationed only a few hours from our parents; it’s very rare. We have always taken full advantage of the closeness, with us driving down at least once or twice a month, or my parents coming up on long weekends. They adore their granddaughter, and, believe me, the feeling is mutual.

So, when Jackson was first admitted into the NICU at a children’s hospital a mere 20 minutes from my parent’s house, it seemed like the ideal situation (well, as ideal as that situation can be). My mom, a school teacher, had recently been released for summer break, and she would be able to care for my daughter and keep things as normal as possible while we tended to our son. My parents weren’t strangers to her; they were her second-favorite couple in the world (second only to her mommy and daddy!).

And, for a while, she couldn’t have cared less where her father and I were. If we were there, great; if not, whatever! She had her Grannie to play in the pool with during the day, and her Granddaddy to play horses and princesses with at night, plus all the chocolate milk she could ask for. Life was as good as it gets, for a toddler.

But, as the saying goes, there really can be too much of a good thing. Disney World would even lose its appeal if you lived there 24/7.”

Continue Reading

Passing the Time

So, yesterday was our two month anniversary of being in the NICU, which makes me want to scream and punch things. I can’t believe Jackson has spent 97% of his life in this hospital. Mind boggling. Never in a million years would I have guessed one of my babies would be going through this. By the way, if you find yourself in a prolonged NICU stay, here are my six secrets for surviving.

Plus, when you have no house to clean, no toddler to take care of, no laundry to do… you realize how much babies actually sleep. What do I do with all this empty time? I call it ’empty,’ not ‘free,’ because I can’t do what I want with it. Want to know what I have done?

I re-watched That 70s Show (well, until Eric left and they added that creepy new guy).

I caught up on Mad Men (except for the current season!).

I re-watched Arrested Development.

I watched all the New Girl episodes on Netflix.

I’m currently halfway through the second season of Orange is the New Black.

I re-read the Twilight saga.

I watched the Twilight movies out of curiosity. I wish I wouldn’t have. I respected Robert Pattinson more as Cedric Diggory.

I re-read Gone Girl in preparation for the movie.

I started reading the Maze Runner. Again. Because it’s SO SLOW. I’m sure it’s great once it gets going. But, it needs to get going.

I started this blog and have written articles for other sites.

I have perfected the art of sleeping on a plastic couch.

I have taken 100 picture of baby boy sleeping.

I have tried not to go crazy. I don’t know how I’ll make it to September.

Thank goodness he’s cute to hold, and I get to see this adorable girl every 24 hours.

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It’s Oddly Nice Being Here

We didn’t want to be here. I mean, no one ever wants to be here. But, here we are. And, flipping the coin, I am glad to be here. It’s the best place we could be right now. I wouldn’t want to be anywhere else.

Where, you ask? Why, here, the place with the the cutesy rooms, the pastel colored walls, and, of course, the plastic cribs. The place where clowns line up at the salad bar, red noses and all. The place where therapy dogs roam the halls, and where all the nurses and doctors are fluent in Goo-Goo-Ga-Ga. Baby talk.

We are here, at the children’s hospital.

We’ve got our sparkly wristbands (blue for boy, of course), that grant us access to the Neonatal Intensive Care Unit, as well as get us out of paying parking garage fees (it’s like a VIP wristband at a club!). We have super exclusive access to the Family Break Room, where it’s free ice water 24/7.

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Being here also means we have access to the best doctors in the state– top of their classes, and most of them have the wackiest and most calming bedside manners I’ve ever seen. If you can get me to smile while talking about the 6 mm hole in my son’s heart, you’ve got magical powers, my friend.

These are the tales from the plastic crib. Well, not my crib. Baby Jack(son)’s crib. Meet little Jack:

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You can tell he’s a fighter, he’s already got his fists up to box the next person that calls him “sick”.

He’s got a hole in his heart. He only has one functioning kidney. He’s got a little hand, which we call his lucky fin, just like Finding Nemo (THANK YOU, Disney– I never truly understood the movie until my son was born). And he’s still tied for first as the cutest baby on the planet (tied for first with his sister, of course).

These will be his tales from the plastic crib. One day, I hope he reads back over these posts and says, “Gosh, mom, sorry y’all had to go through all of that! Thank goodness I don’t remember anything, since I was so little.”

Can’t wait to have that conversation with him.