Not So Fast Food

I typically share the most current adventures in the Salty Boys lives.  But lately I have been reflective on our family journey and also anticipating what life brings next.  With my reflection, I recall that life has always been a juggling act with these two little guys.  And it is this email that shares what life was all about two years ago and that was a foreshadow of the Two Salty Boys blog.

At that time, our family moved to the east coast for a few months for my husband's job.  We were excited to embark on our new adventure.  It was a great time for bonding, not so great for sleep.  We were living in a two bedroom apartment which did not bode well for a toddler's and a baby' napping and sleeping schedules.  Often, my husband and I would find ourselves either sleeping in bed with Michael or on the couch to avoid Dylan who was in a crib in our bedroom.  Every night we played the complicated game of musical beds in the tiny apartment with no two nights the same.  It was 3 months of patience and flexing that I can't quite explain.  There were times I was really close to cracking...  when it's not quite home, and there are so many emotions, some times it just hard to keep it all together.

I will share one such incident that I had shared via email to a small group of individuals.  It has been edited minimally, just censored for the general public since my original email had some unladylike language in it.  But this the insanity I love and hate.  It is what makes me laugh, cry and collapse into my bed each night.

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TO:  A lucky select few in my life DATE:  09/24/2009 12:52 PM SUBJECT:  Ridiculous Trip to McDonald's

Ok, I am really close to losing my mind.  Short story if anything to help me vent and to give you some comic relief for the day.
 
I was ambitious this morning and looked for that cool park that dad had told me about earlier this week.  I googled it, found the address, loaded the boys in the car, and off we went.  It would have been too long a walk to go there, so I had to drive.
 
The [CENSORED] GPS in the car sucks by the way, always cutting out and saying low power.  Whatever.  We get to the park, Mikey has fun playing, wore a little energy out of him.  Then I promised to hit up a McD’s for a strawberry shake and French fries.  So, I google the McD’s, find the one on East-West nearby and we head in that direction…
 
What is always SUPPOSED to be EASY, well, NEVER IS.  As I pull up, I realize…  unbelievably, there is no drive thru.  REALLY?  A McD’s with NO DRIVE THRU.  I have 2 kids that I have to get OUT OF THE CARSEATS, walk in, hold Dylan just to order and get our food.  Ohhhh, but it doesn’t stop there.  I get them out, get in the door, and start to place the order.  The lady doesn’t totally speak English, needs me to repeat over and over the items we are ordering, Mikey is walking around, Dylan is killing my arm and I am juggling everything.  I ask for BBQ sauce and she explains it is over there and points to a self-serve sauce bar and self-serve fountain soda station.  WTF?!  Really.   A McD’s where you get your own sauces, drinks and they have NO DRIVE THRU.  Where am I?  Mars?
 
Finally, we get our food, as I turn to walk to get the sauce and the drinks, the bag rips with our food in it.  My hand is twitching trying to balance and not lose all the contents all over the floor and my other arm is shaking holding 20 lb. of Mr. Dylan.  I re-gather the ripped bag as best I can and set everything down on the station.  I fill my drink as Michael is demanding a straw…  A nice lady hands him one, which I promptly take from him and open it up.  She was nice enough to hand me one for my drink, which I opened and shoved in the flimsy plastic top to my drink, which I am looking at over and over trying to reseal it.  It doesn’t seem to fit right.  GRRRRREAT.
 
Then I shift to sauces…  I find the BBQ sauce, grab a mini clear cup and try to figure out how to pump it.  I couldn’t just place the cup on the counter and pump with one hand holding Dylan b/c there was sauce all over the counter.  So, I asked a gentleman nearby if he could kindly pump the sauce while I held the cup.  “Sure”.  As he presses the pump he continues to fill it to the very top.  Right then, I just knew I was screwed.  I thanked him and then knew I was never going to get a lid on it…  it was too full.  As I tried to snap a lid tightly onto it, the sauce oozed out all over and the lid wouldn’t close.  Then I had BBQ all over me, all over Dylan and no wet wipes only a dry napkin that I fumbled for to try to wipe it up.  I positioned the sauce in the mangled bag as best I could, balanced by sitting on the spilled French fries, re-gathered the top of the bag in my hand and headed for the freaking door.  As I leave, I am teetering the drink with the wrong lid, delicately holding the ripped bag, hefting heavy Dylan, and trying to make sure that Mikey doesn’t walk into cars in the parking lot.  We make our way out to the car of the most poorly constructed parking lot that I have ever seen, hop in, and then have a landscaping rig trying to maneuver around our car…  F this.  A minute later, the rig is gone, I reverse on the gear shift, then put it in drive.  Ahhh, we are on our way, phew.
 
Just when I thought we were good to go, I hear “OH NO!  My shake!” in the back seat.  And plunk.  Thinking I simply had a retrieve the shake and hand it back to Mikey (possibly a little drip or something), pull into a new spot in the parking lot and get out.  As I fling the door open, I see 2/3 of the oozing pink icecream leaking all over our Infiniti backseat.  No napkins in the car, no towels, nothing to clean it up.  I seriously wiped it up with one burp cloth and 3 handi wipes that I had left.  I had 2 diaper wipes too.  That was it.  It was a disaster.  Dylan started to freak out b/c he was hungry, Mikey then started demanding French fries (b/c of course he would, he is a 2 year old.)  And I just about lost it.
 
I cleaned it up, with some swearing along the way, as best I could.  I can’t wait to hear what comes out of Michael’s mouth later today.  And then I headed home.  Defeated.
 
We might need to give a better clean job tonight, but really?!  A trip to McD’s in sunny Bethesda. [CENSORED] awesome.

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Looking back brings me to looking to now.  Days are still filled with juggling, just a little different.

While living in that small apartment in Bethesda, I very vividly recall 10-month old Dylan's love for opening the non-baby proofed cabinets and explorer.  CONSTANTLY.  I couldn't stop him and tried to keep things in the cabinets and drawers that were at the very least safe, and if lucky, benign in terms of risk to our apartment.

There was one time, very clearly, when I wasn't looking my sweet little Dylan opened an entire gallon of distilled water and poured it all over our very small apartment.  I remember as I hurried around the apartment, my foot went, SPLAT! in cool liquid.  I see the empty bottle discarded on the floor and he is playing in the toy box near the sofa.  The only thing I can thing is, "that thing was SEALED!"  The kitchen and family room were a lake for the afternoon.  Our very own 7th story lake.  I go through countless towels to clean the soppy mess.  Then need to start the laundry that has mounted quickly from our man-made baby-made body of water.  No rest for the weary.

In recent times I still catch Dylan playing with trouble...in the pantry...in the bathroom (gasp!)...in the laundry room...on a high window sill...you name it, with a variety of messy media.  A couple weeks ago I found that he had stabbed a pen into every apple in a bowl on the counter.  Or he had colored all over himself (belly, armpits, face, you name it) with markers.  And not the Crayola washable kind.  He would have three days of the pink, green and brown tattoos all over his body.

One particular time not to long ago, I noticed Dylan playing in the pantry and I try to redirect his attention to a toy in the other room.. I walk away, I just know he has continued his exploration of the pantry again, even after my deterring him.  Then, I hear his little sweet voice exclaim, "oh no!" and he runs over to me and hands me the cap he has broken off of the gallon of white vinegar jug sitting in the floor of our pantry.  He toddles over and raises his little, delicate hand to give me the lid.  I see the distress and confusion written across his face.  I seize in fear of the stinky vinegar lake I am about to encounter.

I peer in the floor of the pantry and to my surprise I see the massive container of vinegar still standing upright.  Crisis averted.  Well, at least this go around it is not all over my floor.  I guess things are in fact getting easier one day at a time...

That McDonald's trip was burned in my brain as "not-so-fast" food for obvious reasons.  I know some day, I will blink and it will have all gone by...too fast.  Maybe "fast food" is not really what I needed anyway.

Putting on the holiday pounds

I have a profound respect for fat babies.  Truly.

In a way that very few moms do.  Sure fat babies are cute.  Everyone loves them.  With the Stay Puffed Marshmallow Man arms.  The chunky monkey thighs.  The tubby bellies.  But my respect runs far deeper than that.

Clearly, I am not endorsing obesity...  no, no.  It's not right for everyone.  And, let's be honest, it's the holidays.  We are all overindulging and will pay for it at the gym later in January.  (Groan)

Let me adjust the lens a bit.  Many individuals with CF have trouble maintaining a healthy weight.  And many CF clinicians believe that there is a correlation between nutritional status and lung health.  It goes for anybody... you eat well, you are well.  So to speak.  It's a little more intense with CF hanging around.  While their are different schools of thought on the matter, the directive is clear.  HIGH CALORIE, HIGH PROTEIN, HIGH SODIUM DIET.

As the rest of the world deals with the run-and-gun of the holidays... the fast-food shopping meals, the extra slice of pumpkin pie, the creamy egg nog, and the Christmas candy galore.  Before you know it, the skinny jeans are, well, extra skinny jeans.

How about a 600-calorie shake with Haagen Daas ice cream?  I can't even fathom drinking one.  These are encouraged for my kids.  We live in a totally different world.  I am always trying to figure out, "how can I add calories to that?" if it's something my kids like.  The cookie eating binges are legendary in our house.

Today on the way to a friend's house, in the car, the boys are chowing dried fruit.  Eating handfuls of it... instead of content that my kids are enjoying a natural, healthy snack, instead I wonder, what can I do to these to make these even higher calorie?

Basically, someone with CF often doesn't fully absorb all the calories their body needs.  But on top of that, they are burning calories at a greater rate because of continuous inflammation in the lungs and always warding off infection.  The body just isn't getting enough fuel and is always burning through it at warp speed.  My boys will some day need calories like Michael Phelps.  No joke.  We know many individuals with a g-tube (a gastrointestinal or 'feeding' tube so calories can be put directly into the stomach, often while the person is sleeping) is a reality.  Literally, some kids just don't get enough calories in during the waking hours, so they get calories while they sleep.

At plenty of tables across America, moms are focused on what their kids eat.  What types of foods are their children eating?  How much are they eating?  How can they eliminate sugar or sodium?  And we all know there are rules with eating with families... the "clean your plate" rule.  Or the "no thank you" bite.  Or mine was growing up, one glass of milk before anything else to drink at meals.

But my brain is re-calibrated.  I think of food differently (which, believe me, is not good for my own waistline).  Some recent examples...  I wonder if I can add half-and-half to that?  I can melt butter on that, and he'd never know.  I can spread butter *under* the cream cheese.  Honey, do you want to dip that in Cool Whip?  Do you want another custard yogurt?  Do you want a second avocado?

Leading up to Michael's hospitalization in early November, he isn't eating.  For a kid that has always been an eater, he isn't eating.  At a doctor's visit, they warn me that my son, who was a massive bowling ball of baby two years ago, has a growth chart that was now considered 'AT-RISK'.  It is the first time I hear these words.  Nutritional status.  At risk?

Okay, fair enough, he is a preschooler.  All kids his age go through eating jags.  But THIS IS DIFFERENT.  And before long, we learn how SICK he really is... and he is admitted to the hospital because of the dangerous lurking junk clogging his airways and the Staph infection doing its dirty work.  It is now evident why he isn't eating.

He barely eats in the hospital.  He barely eats the few days we got home and started the IV's at home.  He.  just.  isn't.  eating.  Not that I am paying attention anyway.

Once the medications and his little immune system aggressively start waging war on the Staph, it takes some time for the pink to return to his fair cheeks.  For the dark circles to disappear from under his eyes.  About five days after discharge from the hospital, Michael starts asking to eat.  Asking for snacks.  Asking when dinner will be ready.  Asking for another yogurt.  Another handful of chips.  Whatever it is, I am delighted that he is interested in food and I hear him ask for more.

So, as I amping up for this clinic visit, I keep thinking about how this all translates to his weight.  And what it means for his cough that blasts him first thing he wakes up.  Basically, clinic is a very lengthy, highly complicated "check-up".  I am quite sure that our CF Care Team braces itself when we descend on our clinic appointment, and takes a deep, wild sigh once we walk out the doors.  It is three long hours of dizzying information, my toddlers scaling the walls, and an exercise in patience that I can't even really do justice.  A glimpse is that Dylan punches the pulmonologist.  Twice.  Nice.  Real nice.

But it is an opportunity to review with a crew of caregivers who we almost consider family.  Review my kids' coughs, review their growth charts, review the medications and dosing, and review my sanity.  However, the last part couldn't even be confirmed as present during the visit.

This year, putting on some pounds at the holidays has a very different meaning.  Inside, my emotions are nervous, almost frantic...  And then the good news.  Michael for the first time in six months, gained about a half pound.  Oh the happiness!  And Dylan, I am proud to say is in scientific terms a big, ol' meatball.

While there is a lot more of the fallout from our clinic visit, this is wonderful news.

Ahh... the holidays.  A time for gathering.  A time for joy.  A time for gifts.  AND A TIME FOR FOOD.

And this Christmas, when you see that pudgy little baby at your family gathering, or you take an extra handful of chocolate sweets, please, smile for me.

Michael says to me today, "I want marshmawoahs."
I reply, "Marshmallows?"
Thoughtfully, looking up and nodding he responds, "Yes, I think we should ask Santa for marshmawoahs."

Now, if only can Santa figure out a way to add extra calories to marshmallows...  Hmmm...