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Wednesday, April 16, 2014


So, the first sentence I typed and then deleted was this:

I don't want to come across as complaining, but...

Then, I realized, complaining is exactly what I want to do.


Why, as women, do we not want to complain?  Is there a biological reason we want to preface our conversations with phrases like:

I don't want to sound ungrateful, but...

I don't want to complain, but...

Don't think I'm unappreciative, but...

Seriously, this is something I do all the time.

Now, I don't mean complain in the whiney, all-the-time, annoying kind of way (friends on your FB feed are probably popping into your mind right now).  Just in the, Hey!  I lead a real life where everything is not perfect all the time! kind of way.  

So, I'm going to complain!  And, I hope you don't think I'm being ungrateful.  Because that would be the understatement of the year.  

Here goes...


I hate setting them up, I hate lugging them around everywhere, I hate that Faith can't lead a normal baby life because she's attached to them all the time, I hate that I feel stressed when we go into public, I hate dressing and cap changes and anything else that requires sterility, I hate the risk of infection, I hate planning life around IV windows.  

The bag I've converted into our IV tote.  Make note that they make no cute bags for the purposes of toting around IV bags and pumps.  So annoying!

I know they are life-saving and allow us to be home with our daughter instead of in the hospital.  I get that.  

But, they can GO AWAY and I will NOT miss them.

It's not a fun aspect of life right now.  

It puts regular old childhood illnesses into perspective.  Give me an ear infection ANY DAY.

All of this comes after a particularly challenging day where Faith cried the entire time I performed some necessary central line care.  Unfortunately, I have to 'reverse swaddle' her, if you will - meaning, I use a blanket to hold her arms down, tucking it underneath her back so that the weight of her body keeps her arms from flailing while I'm working on her chest.  Yeah, not fun for anyone, especially Faith.  Sometimes, this puts her to sleep.  But, not yesterday.  

Then there's the bubble flicking.  Before you run the IV you have to rid the line of any air, and this is accomplished by flicking the line.  This is never an easy process, and I'm sometimes sitting on the floor praying that gravity will allow that last bit of air to run out.  Ya know, to avoid pulmonary embolisms.  No pressure.  

Dressing changes are my least favorite thing.  Her central line site is completely exposed, running the risk of infection every time we access it.  Hate. That.  She has to be reverse swaddled, it's time consuming, and makes me have a minor panic attack until it's redressed.  


Okay.  I'm finished.  Thanks for listening and not judging.  Little Sis is worth every single second of every single procedure we have to do every day.  But that doesn't mean it won't be a glorious day when the docs tell us it's all over.  

Monday, April 14, 2014

The Manic-est Monday.

I didn't really expect today to be manic at all.

It was rainy.  I had a quiet cup of coffee.  Worked a little bit.  The day was slow. 

Until it wasn't.  

Until suddenly the home health nurse was at my front door and my hair was half dry and my face only half done.  And, of course, it was at that very moment that the doorbell rang that I realized I was supposed to throw a couple of cotton balls in Faith's diaper before the home health nurse arrived so she could collect a urine sample.  


I threw the cotton balls in anyway and apologized for my forgetfulness, praying that Faith would pee sometime during the visit.  Well, sister one-upped me and did #1 and #2, thus contaminating the specimen.  At that point, I had to leave to get Becks, and was going to have to collect and drop of the specimen myself.

So, go ahead.  Ask me if I squeezed pee from cotton balls into a specimen cup in the parking lot at tae kwon do today.  

Oh, yes.  Yes, I did.


The good news?  (It has nothing to do with pee.)

Becks got his new orange belt and his gear at TKD today.  The squishiness of his cheeks in that helmet thing make my heart happy.  Bless it.  

I wish you could've seen his face when he realized the purpose of the included protective cup.  You mean this is for...oooooooh.  It was an ah-ha moment of epic proportions.  Big eyes and all.  I told him daddy would help him figure it out.  Cups, in my world, are glass and filled with ice and Diet Coke.  

Anyway, after dropping off the cup-o-pee to the lab and booking it home on time to reconnect Faith to her IV, I somehow managed to cook a really lavish dinner of omelet and hash browns.  A large, singular omelet.  Take out your parenting notebook and write that little token down under Time Saving Parenting Dinner Advice.  No one gets to pick what his omelet will contain, as everyone gets the same omelet with whatever vegetables happen to be chopped in the fridge (red and yellow peppers) with cheese!  Yum!  Oh, you don't like peppers in your omelet?  Sorrynotsorry.  EAT IT.

The night ended with a failed attempt at molding a plastic mouth piece, two episodes of Full House, and a sassy little sweetheart giving me a run for my money.  I'm afraid to tell you just what a good baby she is, but it's true - she rarely fusses.  Except tonight.  She had the fussing turned up to mega-fuss.  To test me.  To see if I've still got 'it' almost six years out of babydom.  

Turns out, I do.  The rock-bounce-shush combo (and twelve pacifier reinsertions) prove to be just as effective as they were back in 2008.  

And, now, B is on his way home from work, and I'm praying he walks in the door with two scoops of Salted Caramel Brownie from Graeter's.  Momma squeezed pee in a parking lot today and she needs it. 


{PS.  I totally jinxed myself by posting about my non-manic-Monday early this morning over on my teaching blog!  What was I thinking?!  See HERE.}

Friday, April 11, 2014

Of character clothing and dandelions.

When Becks was a baby, I was fairly adamant that he was not going to wear character clothing.  No super heroes.  Nothing seen on The Disney Channel.  And definitely not anything cartoon related.  Polo and Baby Gap were more my style.  Even if they were thrifted.  

Then he fell in love with The Avengers, and who was I to decide he couldn't wear an Iron Man shirt?  I would be denying him of his passion.  His God-given right as a little boy.  Right up there with being dirty and having skinned knees.

 Now that he's almost six (WHAT?!) and I've matured in my parenting past the point of caring what he wears, in exchange for caring more that he has nice manners and takes a shower a few times a week, he can pretty much wear what he wants.  Character clothing or otherwise.

But, today, in a fashion statement only Becks could make, he came downstairs wearing this:

That would be a bomber jacket, sports shorts, snow boots and an oversized backpack.  #winning

You know I'm going to have to take a picture of that, I said to him, giving him the once over.  

His response: Yes, m'am.  In the sweetest voice.  

Sure, it makes a great picture - but it epitomizes his personality, carefree spirit, and childhood innocence.  Quite frankly, he rocks it.

He went outside and returned moments later with his hands behind his back.

Close your eyes, mom.

I obliged.

Hold out your hand.

I did.

First dandelion of the season.  I'll be ordered to put a lot of these in small glass vases over the next several months.  You can never have too many.  Even from a kid that wears character clothing and bomber jackets in the spring.  

I love you, Beck Man.  

Wednesday, April 9, 2014

To be human again.

We, as parents, have to don the occasional Super Hero Cape.  Some would argue that we wear our capes on a daily basis, as we pack lunches, kiss boo boos, and cheer from the sidelines.  And, I would agree.  To some extent.  But, let me tell you, I am ecstatic to shed mine in exchange for my bathrobe and a cup of coffee.  To hang it up right next to our five month hospital stay.  To tuck it away in the back of the drawer and leave it there for a good long while, worn and ragged from months of use.  

Here's a legit Super Hero.  He wears his cape, er, shell, by choice.  

On that regular, old Monday morning in November, no one told me that I would be performing Super Hero duties for the next five months.  That, in reflecting, I would wonder how bills got paid, how we didn't die of starvation from lack of grocery shopping, or how we managed to function on little sleep, lots of stress, and an overwhelming love for our son and daughter.  Hard to believe menial tasks like that are considered Super Human, but they really seem quite monumental when much of your mind strength is devoted to considering sickness, life support, and sometimes even death, on a daily basis.  

So, I'm feeling human again. 

My house is messy.  There are Legos everywhere.  Sometimes diapers.  Mounds of laundry.  A whole room devoted to medical supplies.  There are IV bags in my refrigerator and an IV pole we tote around the house.  We had a whole dinner consisting of cheesy bread one night, though I did insist Becks have a fruit cup and some yogurt, too.  There is a half-eaten lunch plate still taking residence on the kitchen table.  Yet, baby life is crazy and good.  

And, I get to drink coffee in my bathrobe.   Not my Super Hero Cape.  

I kinda like it.  Not even kinda.  I REALLY like it. 

Wednesday, March 26, 2014

A New Season.

I know it's been a long while.

And, there's plenty of catching up to do.

But tonight, I sit perplexed by the fact that next week is April.  In my mind, Christmas was just last week.  Right?

I know I'm wrong.  I know the calendar will flip, and March will tiptoe quietly out of 2014, waving goodbye in a swirl of snow and sunshine.  Maybe not snow.  Sunshine would be better.  You just can't trust that Polar Vortex, though.

Something about the changing season makes me a little emotional.  A lot emotional, actually.

Maybe it's those dang pseudo-pregnancy hormones, escaping at last, after festering in the interim of hospital life as I awaited the day I would actually bring my baby home.  There's been plenty of tears, cried in joy and in pain, but the tears I feel tonight don't belong to either of those emotions.

Transition Tears, maybe?  The kind of tears you cry when your life is at the crux of Old Life and New Life.  Bidding farewell to what you've known and what you've become comfortable with, in exchange for something new and undiscovered.  Uncharted territory.

In our case, it's living our life with a medically fragile child.  Tubes and pumps and IVs and doctors appointments.  Leaving the confines of the safe hospital where our people are.  Our People being the medical staff that we've come to know, love, and trust with our daughter over the past five months.


Which brings me back to the calendar and seasons changing and my Transitional Tears.

We made the ultimate transition just today - bringing our daughter home.

Tonight, she is asleep in the pack-n-play right next to me.  It will be the first night she's actually slept, peacefully in her home, uninterrupted every four hours by hospital staff checking vitals, refilling her feeds, clearing her pumps.  That's not to say that tonight will be restful.  For any of us.

There's the churn of her feeding pump.  (Doesn't bother her, kind of annoying to me.)  Rainwater flowing on the noisemaker.  (I figure that silence would be too drastic a change from her busy hospital room.)  The beep of her pump at four hour intervals asking for a refill.  (Just like getting up with any other newborn, right?)

I remember those early days with Beckham, waking every three hours to nurse, feeling like morning was days away.  Turning on the TV just to have the company of whatever random salesperson happened to be on an infomercial, pitching something I could own in three easy payments of $39.99.

There were Transitional Tears then, too.  So, I feel a little bit more normal knowing that feeling abnormal is completely normal during a time of transition.

A new season.  A new normal.

Here we go...