Sunday, November 20, 2011

Pennies and Change

Giving thanks isn't as easy or as frequent as it should be.  When I stop completely, hold my breath, and be very still, I can pause.  It is then that I can recognize all the blessings that I have.  Each year I have a better, deeper, more profound understanding of "giving thanks".  Maybe it's just part of the progression of life, of growing up.  You just don't have the same perspective when you are in your youth or even your 20's.  And the most important to-do of the day is figuring out where you're meeting up with friends after work for cocktails.

Throughout the year I add the metaphorical pennies to my "thanks jar".

Thanks for the food that is in our refrigerator.  Even the stinky leftovers.  Tink!
Thanks for a warm, safe home.  And that it held power through a hurricane and historic snowstorm this year.  Tink!
Thanks for a wonderful, supportive husband.  My rock.  Tink!

And for the simpler wishes of thanks.

Oh, thank God the boys are sharing!  Tink!
It's strangely quiet.  Ahh, it's nice.  It will change soon, but for now it's good.  Tink!
Mmmmmm this  cup of coffee  glass of wine tastes great.  Tink!
Massive sigh of relief as I grab the back of Dylan's hooded sweatshirt as he runs into the street.  I am yank him back and pull him onto the safe sidewalk with me.  Oh thank GOD he didn't just get hit by a car.  TINK!

I never understood as a kid how my mom's answer could be the same every year when I would ask her what she wanted for Christmas.  Same response.  "World peace."  I would crinkle my face in a dumbfounded stupor and try to figure out the best sweater or scarf I could get her, certainly not understanding what she meant.  And as I got older, I would get annoyed and roll my eyes, knowing that I couldn't wrap up "world peace" nicely and neatly with a bow.  It was aggravating.  Now with each year of wisdom and each passing day of life, I get it.  I understand what she was saying, because I am starting the feel the same way.  The things that I want, you can't really give.  And now whenever someone asks me...  what would you like for Christmas? I draw a blank.  There are times I am close to saying, "world peace" for lack of a better answer.

This time of year is not about getting, as you believe when you are a child, but about giving.  As we approach the recognized day of giving thanks, I absolutely know there is much to be thankful for.  But mostly this year I am thankful for
Progress.  (Tink!, Tink!, Tink!)

After dropping Michael off at school, I load Dylan back in the car and head to a routine doctor's visit for (shockingly!) myself with Dylan in tow.  I typically prefer not to bring him along, but I know that the appointment will be brief.  It is my only option these days.  He is sound a asleep in his carseat, his little eyes closed and very still.  His head slumps to one side and his long eyelashes rest gently.  I am relieved that he will get a snooze in before getting into the doctor's office.  I arrive at the medical building, find a parking spot, and park the car.  The windshield wipers whisk back and forth as the cool November rain drizzles and patters on the car.  It is a dreary, gray day.  I call my mother to catch up and then fiddle around with my phone for a bit to let Dylan nap.  I stare out the windshield and notice the pretty fall leaves have crumpled and decayed all over the parking lot.  They litter cars and landscaping all around.  The afternoon puts me in a cold mood.  The prettiest part of the autumn is now gone.

Once Dylan has napped nearly an hour it is time to head into the doctor's office.  I gently stir Dylan and pick him up.  His weight is significant and I nearly drop him twice carrying him into the building.  But in his sweet, child-like way, he wants me to hold him.  And while he is physically pushing the limits of my carrying him, it is awfully hard for a mother to say no to holding her groggy child who just awoke from a nap.  I power through.

We arrive at the boring doctor's office that could be anywhere USA.  Ugly wallpaper, insane green carpeting and a laminate counter with a sliding window that cuts the office staff off from the rest of the world with one swipe of left-to-right.  Once in the waiting area of the office, Dylan's sweetness and agreeable responses turn vile.

Nowwwww, the complaining and tantrum starts.  Great.  "Bad Mommy," he repeats over and over again, his tone and voice getting louder.

Just as the tantrum escalates, the doctor calls my name and I scoop wiggling Dylan up into my arms.  A nice woman waiting helps me hands me my soaking umbrella fell to the floor during Dylan's tantrum.  "I have three.  I know how it is."  She smiles kindly.

We are quickly escorted (probably a smart move for the other waiting patients' sanity) by the doctor to a vanilla exam room with non-descript muted blue conference room chairs, exam table and desk.  While Dylan throws his tantrum, the doctor and I discuss a few things.  As he eventually calms down and the doctor and I strike a conversation.  I mention something about CF and she stops in a dead pause.  She flips the chart over and reads her past notes and then tells me that she had forgotten that I had mentioned my boys have Cystic Fibrosis.  She is a nice, older woman, tiny in stature, and firm in her listening the two times that I have met her.  She has a kindness but isn't much for lengthy chatter.

However, this time the small talk flows more naturally with Dylan in the room.  I think that she is stunned that he has CF.  She is interested and engaged.  I remember the last time I had an appointment with her and CF had come up, she said, "They have made great strides, you know."  Funny, "great strides" is symbolic and important phrase in the CF World.  It is the name for the the annual walk to raise money for CF by the Cystic Fibrosis Foundation.  Her choice of words stayed with me.  Maybe luck coincidental, but her words made me believe she followed CF, at least from the periphery.

In my experience, doctors are almost floored to meet a person with CF, since I am guessing it is part of every medical book, but in fact is pretty rare.  It is estimated that only one thousand babies are born with CF in the US each year.  I am guessing that meeting a real life, healthy person with CF is like seeing a myth in the flesh.  CF used to be such a sad prognosis.  And I am sure that chapter on recessive genetic disorders where CF is usually discussed obviously stuck with many clinicians.  Decades ago they read that mortality was something like 5 to 10 years.  For some, it's impossible to remove the decades of CF's reputation with clinicians.  They immediately digress to the CF of the 50's.  Not the CF of today.

"He looks great," she states with mild astonishment.  I smile and tell her that we work really hard at it, but that we are lucky.  Michael and Dylan have been healthy along the way.

"I just read something in the New England Journal of Medicine..." she prompts.  Obviously, she is very progressive and "in the know" on the latest CF news.  Or at the very least, she is keeping up with medicine in general.  I know exactly what she is talking about... a drug that we have followed closely since July 13, 2007 (the day Michael was diagnosed) recently made national headlines.  An article was indeed written in the same periodical she mentions.

The drug was shown to improve the cellular problem of CF.  It essentially appears to fix the broken CF protein in the body that interferes with the delicate balance of salt and water.  We are realists and know that the boys need another drug along with this one, which needs a considerable amount more data.  And that it needs to be researched in kids.  But I don't care.

It is groundbreaking.

It is remarkable.

It is now real.

And it's application for approval in now in the FDA's hands.  I acknowledge the news and share with her that we are completely hopeful and we do all we can to help make a difference.   We are advocates and raise money every year.  Clearly, we believe it is a worthy cause.

Suddenly, I see some nostalgia in her face.  I am surprised at my own intuition on this.  I am validated when she says next, "Be glad that they were born when they were."

Her comment is rooted in progress.

She smiles tautly, then she looks down heavy-hearted at my chart to avoid my eyes.  She continues partly deep in her thoughts, "I'll never forget a boy in my school when I was little."  She shakes her head while still looking down.  She jolts away from her thought and writes down a note that I need for follow up and my paperwork to settle up with her receptionist.

Dylan is smacking the grape Mike and Ikes that I have bribed him with so he will be cooperative and polite.  As the doctor wraps up with us, she hands me my papers, starts to walk by us heading for the door.  Dylan is flustered.  I can tell he wants to say something but between his previous agitation and chomping on the candy, he can't get his thoughts out.  "Do you want something?" I ask him.  I can tell he wants to say something to the doctor, so I make it easier for him since he is furiously chewing.  "Do you want to give Dr. a high-five?"  He nods.

Dylan puts his sticky, little hand out and gently pats the doctor's hand.  Her face glows for a moment and says, "Aww, that just made my day."

To see progress is to watch your kids grow up.
To promote progress is to help someone see something in a new way.
To truly advance progress is to make a difference each day.

For us that difference is a cure.  I give thanks toward the remarkable progress that has been made and is being made every day to find a cure for my boys.

Each Thanksgiving, I add new things to my metaphorical thankful jar.  I believe that all parents do.  I don't know at what point the jar fills up or is overflowing...  maybe it never can be too full.  Let's be honest, we can never be thankful enough.

This year, I drop a couple thanks pennies in for the sparkle in Michael's eye as he proudly holds up his schoolwork where he has neatly written his own name.  They hit the glass jar bottom with a rattle and clank.  Next, I toss in a penny for my thankful moments of Dylan's oratory reading of "The Very Hungry Caterpillar" to me at bedtime and one more penny his rendition of "Twinkle, Twinkle"...

Of course, my jar wouldn't be complete without a handful of pennies that tumble into the jar and create a symphony of clanking music.  These are for my thanks every night for the boys' sweet, deep rhythmic breathing as I kiss them goodnight before going to bed, observing how big they have gotten in the past days, weeks, months, year.  Of course, not before noticing what they have brought into bed with them on any particular night.

Progress means a continuum of change and individual moments of breakthrough.  This Thanksgiving I can't help but be thankful for all that progress brings.

Those pennies in a jar
that change that sweetly rattles around every day
are the wealth of a lifetime.

Wednesday, November 16, 2011

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.

*   *   *   *   *

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.

*   *   *   *   *

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 the the bathroom (gasp!) the laundry room...on a high window 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.

Friday, November 11, 2011

Cool beans.

As we settle into picturesque suburban New Jersey, we are reminded in everything that we do that we are "not in Kansas anymore Dorothy."  From the new and the exciting to the mundane, everything is well, different.  Not to mention every dish or sandwich I order around here is never right, never.  But that's a whole different story in itself.  Most likely since I am basically Sally of the classic movie about relationships, "When Harry Met Sally."  On the side.  On the side.  Personally, I don't care to be referred to as "high-maintenance"...  I am just a little choosy. (smirk)  I know what a like.

I often wonder...  how hard is it to get one thing done, AND done SIMPLY?!  Why does everything feel so difficult?

Is it because I am a mom of two small boys?  Is it because we have lots of extra steps with a chronic medical condition?  Is it because we are in a new place?  Is it just me???  Do I make things harder than they need to be?

As we have adapted in recent months, we make new friends all of whom are lovely from all areas of the U.S. and have different stories to share.

I believe we collect people in our lives.

We add these new friends to our life collection.

We visit new doctors for the boys Cystic Fibrosis care.  We send Michael to start at a new preschool.  We go new places and try new things.

And we shop at new grocery stores.  Don't get me started on navigating a new grocery store after years of visiting the same one.  Our old grocery store back in Chicago that I frequented is named "Jewel".  Very fitting for a gem that fit me like a glove.  Now the the "Stop'N'Shop" here is too apropos, where every five feet I am stopping and every five feet I am shopping.  The items and the brands that we used back in Chicago are not in the line up and products are all radically sequenced (at least for my simple brain).

On a Sunday afternoon, we have a lovely time apple picking at a farm in rural New Jersey with friends.  The boys love finding the red and bright apple treasures and placing them in our.  Dylan delights in finding an apple, and THUNK!, dropping into our box of apples.  Nothing gentle about this kid much of the time.

After the flurry of busy apple-picking activity and visiting the charming market filled with jams, gourds, and hearty fall vegetables, we all find ourselves in the comfort of the car.  I peer back and see the boys are tuckered out staring off into space.  I pick up a donut hole and pop it in my mouth.  Now what about the rest of the day?  I immediately think of a wonderful pot of my mom's chili.  It is a perfect dinner with our family to end the day.  I begin the task of recalling the recipe and the list of ingredients.

I have made the chili so many times, I can recite the recipe from memory in the car.  I tap on my iPhone the ingredients so I won't forget during my broken thoughts and rambling confusion in the "Stop N Shop".  John Coltrane tunes roll along as we drive through the pretty fall landscape.  Too bad it's been a wet fall.  The trees haven't yet ignited those beautiful radiant tones on their branches that I so love.  The day is overcast and waves of gray roll by.  The greens amongst the tree tops vary slightly, but there aren't the splashes of burgundy, sunny gold or fire orange that I so love in autumn.  Maybe those hues will turn up soon.

We are nearing the store and I have mentally ticked all the items off on my list that I need grab.  Now I start pondering what in the world I am going to do with two big bins of Empire and Golden Delicious apples we just picked at the orchard.  Pie, I guess??

My husband sits in the car as the boys have drifted to sleep to the jazz music in the car.  I dart of the car and hurry in.  Garlic.  Check.  Onion.  Check.  Ooh, and we need lunch meat for sandwiches.  Canned tomatoes and a can paste.  Check and check.  Then I get to the beans.  Red kidney beans.  Check.  But where the hell are the hot spicy chili beans?  I never had trouble in Chicago finding the Brooks brand hot chili beans.  These aren't optional.  THEY ARE NECESSARY.  My eyes frantically scan and rescan.  But no blue label with the hot chili beans I need.  Seriously??

I make my way to the massive display in a different aisle of the baked beans.  An insane number of various types, brands, flavors.  Well, surely I am crazy and it's over here.  I scan and scan again.  None.  Nada.  This store doesn't have the hot chili beans I need.  This is a tragedy and incomprehensible.

I screw my head back on straight and my husband texts me from the car.  I haven't realized how much time has passed, but it's been a while and they are still waiting for me.  I hurry to check out a basketful of items sans the one special ingredient I need.  The stupid hot chili beans.

I unload everything in the car and see the boys are still sleeping angels.  I slump into my seat with a pout and complain that nothing is ever easy...  My adult temper tantrum sets in.  How can I make the chili without the damn beans?!  I beg my husband to bring me to a different grocery store.  He begrudgingly does, one of the many reasons I love him.  The other store which has more specialty items surely has them.

I run, literally run, into the store and find the aisle of canned vegetables.  Hearts of palms, artichokes...  beans!  A ha.  They will have it.  Slowly, I check and recheck each shelf thinking this is a joke on me.  I spin around and see that there are more beans (again, a whole section for baked beans!) but NOT ONE CAN OF HOT CHILI BEANS.

I am dumbfounded as I head past the check outs empty-handed and hop into the car.  My husband is laughing at me and the boys are now awake.  "No dice," I tell him.  He suggests I check one last place since he promised the kids to hit up McDonald's drive thru.

Pathetically, I hop out of the car at the last possibility.  I whirl through and grab other items I need, but knowing they won't carry this item, I inspect the area with the beans.  Nope.  I didn't even have to go in.  I telepathically sensed it just looking at the exterior of the store.

We arrive home, my husband snickering the whole way, and I make the chili.  Sans hot chili beans.  I grumble through the entire recipe, nearly moaning in pain.  How hard is it complete one recipe?!

Hours later the chili is ready and I cringe as we all take our first bites.  (Honestly, my choosy kids slug probiotic drinks, chow yogurt and eat the shredded cheese around their bowl of chili mac.  I live for one day that they eat the "meal" part of the meal.  But, for now, I am content if they eat three high-fat custard-style yogurts just the same.  My kiddos need serious calories and I won't argue with what ones they will put in their little mouths.  That day will come.

My brain processes signals coming from my taste buds.  Remarkably, it isn't all that different.  The chili tastes good.  But of course, it's just not the same in my book.  I briefly catch my husband smirking through his homemade bowl of chili.  He knows that I realize that the chili is good.  "I see you," I warn him.  I laugh too.

So much of the time I struggle with understanding if life is just hard these days or if I am making life hard these days.  Today the answer is painfully obvious.

Lesson learned.  I need to relax.  It is, after all, just a can of beans, only on the side.