Living in Holland...

I am going to do something a little different for this week.  My son, Jack, is very ill.  I am very stressed and very sleep deprived.  Therefore, I am going to let someone else write my blog entry for me.  A mother, whose child also has Noonan Syndrome, posted this on her Facebook page last week, and never have I been more moved.  Never have I so totally and completely related to something that someone else has written.  People often ask me how I cope with knowing that my kids can't grow or gain weight, that they see specialists frequently instead of just annual physicals, that they'll never go horseback riding or play football, or that they can't ever get over a stomach bug or a sinus infection without the assistance of a hospital stay.  I wish that I could share this with all of them.

While I loved this story, I wanted to make sure it was legit. I did my research, and I was thrilled with what I found.  The writer, Emily Perl Kingsley, has been a writer for Sesame Street since 1970.  Her son has Down Syndrome, and she played integral part in featuring children with disabilities on the show.  In doing so, she provided a voice for special needs children and their parents.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

WELCOME TO HOLLAND  by Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a
disability - to try to help people who have not shared that unique experience to
understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip
- to Italy. You buy a bunch of guide books and make your wonderful plans. The
Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some
handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several hours later, the plane lands. The stewardess comes
in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm
supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and
there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It's just a different
place.

So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never have
met.

It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there for a while and you catch your breath, you
look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all
bragging about what a wonderful time they had there. And for the rest of your
life, you will say "Yes, that's where I was supposed to go. That's what I had
planned."

And the pain of that will never, ever, ever, ever go away... because the loss
of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy the very special, the very lovely things ...
about Holland.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have been living in Holland for quite awhile now.  It took awhile to get comfortable, but I am happy here.  It is quite beautiful.  And like Ms. Kingsley, I have met a group of people that I never would have met, from all across the world.  I have been involved in a network of other mothers, who have children like mine.  The support that we have provided to each other, and the understanding that we all share has been instrumental in learning to live the life that we now live.  Two of these mothers that I have become close to, have children in critical condition right now.  Two little girls are fighting for their lives, on opposite sides of the globe, connected only by a genetic condition.  Their mothers are among the bravest and most faithful of anyone who has ever spent time in Holland, and my heart aches for them. Holland is a much easier place to live when your children are there with you. There is no worse feeling in the world, like the moment you kiss your child goodbye and place him in the hands of his doctors.  The waiting and the uncertainty is pure agony.  But you do it with the hope that your child will come back to you.  It's that hope that gets you through, the hope of holding your child again. As a special request from your dedicated blogger, please say a prayer today that these little girls recover and get to come home to the people who love them. 

Abby and Bella, so many people are thinking of you and sending you strength right now... please get well soon.

Listen to Your Heart...

Today, I am devoting my blog to Congenital Heart Disease Awareness Week (February 7-14).  I am not going to bore you with statistics.  Instead, I am going to tell you a story in the form of a timeline.  I am going to tell you a specific chain of events that could have gone in an entirely different direction.  This is a true story.

February 21, 2008:  My son, Henry, is born, almost six weeks premature. He is sent to York Hospital NICU for underdeveloped lungs.

February 29, 2008:  Henry is discharged from the NICU.  The doctor on duty tells us that he has slight murmur, which is very common in preemies.  He tells us to follow up with our pediatrician.

March 3, 2008:  Henry's one week checkup at Pediatric Care of York.  Dr. Moore hears Henry's murmur and tells us that it doesn't sound bad, and is probably an innocent murmur.  However, PCY's policy is to never ignore a murmur, so he refers us to a Cardiologist at Hershey Medical Center and tells us not to worry.

April 15, 2008:  Hershey Medical Center performs an Echocardiogram on Henry, and determines that he has Pulmonic Valvular Stenosis (PVS), a congenital heart defect.  Devastated, I go home to Google "PVS," and read the words "Noonan Syndrome" for the first time.  I decide to ask PCY about it at the boys' next appointment in August.

October 25, 2008:  Henry and his brother Jack test positive for a mutation in the PTPN11 gene, confirming a Noonan Syndrome (NS) diagnosis.  PCY refers us to Johns Hopkins Genetics Clinic.

December 8, 2008:  Johns Hopkins Genetics examines Henry and Jack and gives us a list of specialists that they will need, as part of their treatment of NS.  One of the specialties is Hematology, as NS patients often have blood clotting disorders.

January 14, 2009:  Dr. Takemoto, Pediatric Hematologist at Johns Hopkins, discovers through blood work that Henry and Jack have Factor VIII deficiencies and Von Willebrand's Disease.  Bottom Line:  Their blood has difficulty clotting.

September 24, 2009:  Nineteen month old Henry wakes up from a nap with a diaper that has over-flowed with blood, leaking down his legs, and soaked into his pants.  (You may have heard this story.)  In a panic, I rush him to the ER of York Hospital.  Unable to find a source of the bleed and unable to stop it, the doctors at York call Dr. Takemoto.  Dr. T explains the severity of Henry's bleeding issues, and it is decided that Henry will be sent to Hopkins via ambulance.  By the time my husband and I arrive at Johns Hopkins, Henry's heart rate is at 214BPM.  We are told that because of the blood issues, if Henry doesn't receive clotting meds and a blood transfusion immediately, he will be in heart failure within an hour.  Four days after our arrival at Hopkins, following an admission into the PICU, several blood transfusions, and multiple tests, the source of the GI bleed is found.  Henry had been born with a Meckel's Diverticulum (MD), a small, rare growth outside of the stomach in the intestines.  It ruptured, causing an intestinal bleed.  A MD rupture is usually not life threatening... as long as the blood clots.  The amazing surgeons at Johns Hopkins successfully remove the MD, and save Henry's life.  Henry comes home a week after surgery, where he has been spoiled rotten ever since.



When Henry was first admitted to Hopkins, I received word that an acquaintance of mine, who was also a patient there, had just received life changing news.  Like my sons, she had been born with Congenital Heart Disease, only hers was very severe.  She had endured numerous surgeries, and had been on a waiting list, for a new heart, for years.  She received her new heart, from a donor, the same day that Henry's MD was removed.  It was nice to see the familiar faces of her family in the surgical waiting room, even though it was under such dire circumstances.  As I think back to all of us waiting, for our loved ones to pull through their surgeries, I thought of the one thing that had brought us all there.  We were united by the heart.

Henry's scar is on his stomach.  The disorder of his blood is what almost took his life.  But it was his heart, and that beautiful murmur of his, that caused his timeline to continue. 

The murmur led to the Cardiologist. 
The Cardiologist led me to the Internet.
The Internet led to Noonan Syndrome.
Noonan Syndrome led to Hematology.
Hematology saved Henry's life.

Henry was one of 2% of the population born with a Meckel's Diverticulum.  It was going to rupture eventually.  He was born with blood that doesn't clot.  If we had not known that, Henry would died twelve hours after the rupture, before they even would have had time to run the proper tests.  The doctors at Johns Hopkins saved my son, but I also give credit to Pediatric Care of York.  If they had treated Henry's murmur as innocent, and waited until symptoms were presented, he would not be here with me, today.

Cheesy love songs, jewelry commercials, and Hallmark cards often tell you to "Listen to Your Heart."  You have no idea how good that advice is.  In honor of Congenital Heart Disease Awareness Week, listen to your heart.  Listen to your child's heart.  If a doctor tells you he hears a murmur, insist on an Echocardiogram.  It may not be innocent, and it may lead to a discovery of a more serious underlying condition.  Football players go into Cardiac Arrest on the field at 15 years old, because of an undetected CHD.  Babies go into Congestive Heart Failure, before they've even seen a Cardiologist.  I dream of a time when all infants receive Echos before leaving the hospital, after birth.  It is too serious of a condition to ignore.  Promote Congenital Heart Disease Awareness.  Listen to your heart.  My son's saved his life.

Pajama Time...

Pad-pad-pad-pad-pad-pad-pad-pad-pad-pad-pad.

All parents are familiar with that sound.  It is a distinct sound.  It is a sound that warms my heart.  It is a sound that I am listening to, right now.

Pad-pad-pad-pad-pad-pad-pad-pad-pad-pad-pad.

Ahhhhh.... the sound of covered little feet, scurrying about in footed pajamas.  There's nothing like it.  The actual sound my vary from child to child, due to texture and size, but the feeling remains the same. 

I remember wearing footie pjs.  However, footed pajamas of the 1980s were basically made of steel wool and the plastic always seemed  to be hanging off of the bottoms of mine, providing no grip whatsoever.  So, I probably sounded more like, pad-flop-pad-flop-pad-flop-pad-flop-THUD, as I ran (and fell) throughout our house.  Fortunately, now that I have had children, the manufacturers of footie pajamas have started making them out of 100% Cotton.  They also created rubber-like gripies on the bottoms of the feet, instead of poorly gluing heavy plastic socks to the suits, as they did with the ones I used to wear.  Itchy or not, I still loved my footie pjs.  As my mom would zip me up, I felt like she was putting me into a superhero suit.  I'd tuck my boobah (my blanket), into the back of my neck to act as my cape, and I'd zoom down the hall to save the universe.  Good times.

I've longed to buy a pair for myself, now, as an adult.  I am pretty sure that if I pin myself down into a sports bra, I can squeeze into a size 14/16.  My husband always responds to this idea with a very stern, "Absolutely NOT," which I think is extremely unfair.  It's been pretty cold lately.  He may just find a surprise under the covers in a few weeks.

My love of footie pajamas has gone so far, I tend to wear them on my boys year round.  It's not uncommon in our house to go into their rooms on an August morning, to see a sleeping half naked child with a sweaty pair of pajamas crumpled on the floor, next to the bed.  Michael says that I'm going to suffocate them.  But I fail to see how something as lovely as a pair of footed pajamas would do any harm to a child.

I think that the appeal lies in the fact that they make a child look younger.  Footie pjs are something that they wore as babies, that they still wear as children.  They grow out of the bunting nightgowns, they refuse to wear cute hats, and before you know it, you pick them up and that familiar crinkle of a diaper under their bottoms is gone.  But when I zip them into a footed suit, and fold them into my arms, they become my snuggly soft babies all over again.

I once said that I wish I could bottle up the smell of my children after a bath, put it around my neck, and wear it for always.  It brings me such joy to get my boys out of the tub, slather them in Johnson's baby lotion, and dress them for bed.  The other night, after their bath, the boys padded down the hallway with their boobahs tucked into the back of their necks, off on yet another mission.  I wish I could bottle up their smell.  I wish I could freeze that moment to have with me all of the time.  The thought of them growing older, no longer believing that they are superheroes, and refusing to wear footed suits to bed, is devestating.  Hopefully, though, it will be a few more years before that happens.  For now, I am going to be sure to take advantage of every moment, while they are still my snuggly soft boys.

Our area was blanketed with ice last night, and the storm is to continue until tomorrow afternoon.  The National Weather Service has advised against all unneccesary travel.  The boys and I are going to cuddle up on the couch and watch movies all afternoon.  Oh, and I have decided that today is going to be a Pajama Day.  All Day.  I've got to enjoy this time while I can.

"Now all around the room in one big line, wearing our pajamas and looking so fine. It's Pajama Time!"  - Pajama Time, by Sandra Boynton 

Thank You for Choosing Walmart (Part Two)....

So, my dear followers, there's good news and bad news.  The bad news is that I have been slacking.  The good news is that I have FANS!!  Apparently, I have at least three whole people who have been trembling with anticipation for me to finish Part Two my Walmart series.  Well, maybe they aren't "trembling," but they did ask about it.  With a special dedication to Jeromy, Stacy, and Tina, may I present:

PART TWO:  THE CUSTOMER

I am sure that many of you are familiar with the website, The People of Walmart that highlights the often outrageous appearances of those who shop at the popular discount store.  However, the creatures that shop at Walmart, are not just aesthetically ridiculous.  Most of them meander through the aisles, usually with a chip on their shoulders, waiting to run into a jaded associate.  It's not a pretty sight.  And since the last thing that an Associate wants to do is to actually help someone, it makes for an interesting (and sometimes violent) interaction.  In order to help you understand the dynamic, let me describe a few of the key types of customers, who shop at Walmart.

The Tattletale:  These are customers who like to go to management for every little thing.  I have had quite a few issues with Tattletales.  The most memorable, occurred when I worked in Ladies Wear.  A particularly annoying customer asked me where the Fitting Room was.  I pointed behind me and said, "It's underneath that big red sign that says, "Fitting Room."  She told my Store Manager that I had an "attitude."  I told him I was just telling the truth.

The Cliche:  These are usually cheerful customers, who truly believe that they are the only ones who have ever shopped at a Walmart.  Surprisingly, while friendly, they are the most annoying of Walmart customers.  Cashiers usually have to deal with this type.  They are the people who remark, "Slow day, huh?" after waiting in a line of 25 people.  They also inevitably ask, "Is is hot enough for ya?" which makes it quite difficult to not respond, "I wouldn't know, because I am STUCK inside this God-forsaken store, while YOU frolick in the sunshine all day and throw it in my face."  Perhaps this group is at it's best, when given their total for their merchandise.  Whether their total is even ($15.00 on the dot) OR repetitive ($8.88) OR famous ($17.76), they will ALWAYS excitedly exclaim, "I bet that's the first time that's EVER happened!!"  Actually, I have been working here for five years, and have rung up millions of transactions.  It's happened twelve times.  TODAY.  You aren't that special.

The Passive Aggressive:  This one makes me angry, just writing about it.  These customers refuse to "ask" for help.  They want the Associate to come to them.  This customer is the man who stands in the shampoo aisle, while I stock shelves two feet away, and says a series of statements to himself.
"I wonder where the Head & Shoulders is."
"It was in this aisle the last time I was here."
"I wish I could find it."
"I think it has a blue lid."
Nope, sorry, Dude.  If you can't look me in the face and acknowlege my existance, you can find your own shampoo.

The Criminal:  I'm not talking about shoplifters.  All stores have those.  I am talking about the teenager who brings in a three year old broken stereo, expecting to exchange it for a newer model.  I am talking about the man who brings in an electric razor filled with hair and says it never worked.  And most of all, I am talking about the woman who brings in a half full gallon of paint, that only Lowe's sells, and requests that her refund be given in cash.  The worst part, is that most of the time, a Manager will give them what they want.  The only difference between these people and shoplifters is that sometimes shoplifters are arrested.

The Needs a Friend:  These customers share too much.  They come to Walmart because they need someone to talk to.  True Story:  I was working as a Cashier on my holiday break from college, when a man came through my register, buying one big Rubbermaid container.  "This is for my son," he said, wanting to chat.  I took the bait.  "Oh, is he in college?"
"No, he's in jail.  He went to college and got hooked on drugs.  He shot his girlfriend a few weeks ago."
"Oh.  Here's your receipt.  Have a Merry Christmas!!"
Blogger's Note:  Never EVER take the bait!!


The Angry Mom:  Anyone that has ever worked at Walmart will tell you that people bring their children to Walmart to beat them in public.  Walmart is full of screaming kids and angry parents.  Once I saw a woman shreik to her crying child, "STOP IT! STOP IT! YOU ARE MAKING ME LOOK LIKE AN IDIOT!!"  Um, no, Lady... you're doing that all on your own.

If you are in danger of becoming one of these customers (or already are), let me give you a few guidelines that will help you improve your Customer/Associate relations.  These are things I wish I could post on the door, for people to read, before entering the store.

1.  If you need to use the restroom, please use the designated areas that are clearly marked, RESTROOM.  My brother (also a former Walmart Associate) has had to clean up fecal matter that was found in the CD aisle.  I met my husband while mopping up urine in the Cosmetics Department.  For those of you who are potty trained, keep in mind that if the store smells like a toilet, there's probably a reason for that.  I suggest always wearing closed toe shoes, while shopping.

2.  Pay attention to the Associate who answers the phone.  She greets you and then asks a very specific question, "How may I direct your call?"  This means, "In what department is the item, in which you are inquiring, located?"  Contrary to popular belief, there is not a "Big Book of All Things Walmart," sitting next to the phone.  So, when you call and ask the Phone Associate, "Hi, how much is an 8oz bottle of Elmer's Glue?" please understand that she cannot give you an answer.  She can, however, direct you to the Stationery Department.

3.  Walmart is not Santa's Workshop.  We are not little elves in blue vests who make every item in the store.  Don't ask me how an electric razor works.  I did not make it.  I am not working for the manufacturer.  I am the person who gets paid minimum wage to unlock the razor case and hand you an electric razor, so that you may read the box.  And no, you cannot open and try it out.  That's gross.

4.  Please know what you want and what it's called, before you enter the store.  Do not tell me, "I'm looking for a lotion in a white bottle, that has a pump," because you have just described 85% of the lotion aisle.  I do not have time for this.

5.  I work at WALMART.  I am not a TV Repairman.  I am not a doctor.  And I am not a babysitter.  I don't know why your television doesn't have sound.  I do not know what will work for your painful bunions, and I will not watch your baby while you try on a dress.  The qualification that landed me this job was my availability to work on Saturday nights.  Please treat me accordingly.  I also do not work at Home Depot, so don't ask me when they close, or how much they charge for refrigerator installation.

I haven't even begun to scratch the surface, when it comes to the time I spent working at Walmart.  But I think you get the point... for now.  Perhaps I will blog again one day about the wild, wonderful world of Walmart.  I could go on for days about the parking lot alone.  To conclude this series, however, I would like to share my all time favorite Walmart story, ever.

In the Toy Department, there is a tall "cage" that houses the giant bouncy balls.  When a customer wants a specific color, it means that an Associate has to be paged, so that a ladder can be used to reach whichever one the customer need.  I was working diligently one day, when an announcement came across the Walmart speaker system, made by a Cashier, who should have chosen her words more carefully:

"Attention Associates, I have a customer by the balls in Toys, who is in need of assistance."

I bet he was.

If It Ain't Broke...

In today's economy, a lot of things are broken.  He's broke.  She's broke.  We're broke.

Being "broke" myself, I get very offended when people claim to be broke who aren't.  I mean, really, it's not like it's a status we all strive to be, so give yourself more credit.  Lord knows I don't have any to give you. *BA-DUM-BUMP-CHH*  : )

When our boys started their medical treatments, we wiped out our savings and credit cards and went to one income.  We are the definition of "broke."  We have nothing to pull from.  We have no back-ups.  If our checkbook shows $3.87 the day before payday, then all the money that we have access to in the world is $3.87.  So, if you tell me, "We went to the movies and didn't even buy popcorn, because we're so broke.  We even had to decrease the amount of money we're putting into the kids' college funds,"  I will probably punch you in the face.  In an effort to weed out the fakers, I feel it is my duty to clarify what it really means to be poor. 

And these are not made up to be funny, these are true stories of life in the trenches of the lower-middle class. 

To the tune of Jeff Foxworthy's "You might be a redneck," here are my qualifications of being broke:


If you sit down to do the monthly bills and make three piles:  "Pay Now," "Pay Next Month," and "Must've Gotten Lost in the Mail"....
                                            you might be broke!


If you consider "Date Due" as the date that you know they send the shut off notice....
                                           you might be broke!


If you know how to siphon gas....
                                           you might be broke!

If you can't remember the last item of clothing that you bought that wasn't purchased on ebay or at a yard sale...
                                           you might be broke!


If your child receives a check from a relative for his birthday and you tell him his present is keeping Cable for another month...
                                         you might be broke!


If you've ever held a yard sale in January...
                                         you might be broke!

If you have ever needed gas in your car and looked around your house for something to sell on Craigslist....
                                        you might be broke!

If your strongest investment is the $1.00 you spend on a Powerball ticket each week...
                                        you might be broke!

If you've ever been tempted to cash in your child's Savings Bonds, fifteen years early...
                                        you might be broke!

If you use hospital stays as an opportunity to stock up on bandages, thermometers, and baby wipes...
                                        you might be broke!

If you can make an entire meal out of four slices of bread, and a little bit of butter...
                                        you might be broke!

If an appliance in your home breaks, and you head out to a yard sale with $1.50 in your pocket and a heart full of hope...
                                        you might be broke!


Most of you who read my blog probably have money and find no amusement in this whatsoever.  But believe me when I tell you that while each one of these statements are true, I giggled as I wrote each one.  And I am sure that those of you who know what it's like to struggle will laugh as hard as I did.  Poor people are happy people, because we appreciate the little things and are proud of what we have.  Don't feel sorry for us.  We live with the hope that things will get better.  We know how to fend for ourselves and we know what to do to take care of our children.  We do what we have to, to survive.  And one thing I can tell you, it certainly makes life interesting.

A Letter to Mountain View Ob/Gyn...

To the physicians, nurses, and staff of Mountain View Ob/Gyn:

On November 29, 2010 at 1:00pm, I came into your office for a routine obstetrics visit.  At just over eleven weeks pregnant, I was very excited to soon be moving into my second trimester.  When my nurse was unable to hear a fetal heartbeat, I was sent over to Hanover Hospital for an ultrasound.  At the hospital, I was given the most painful internal ultrasound that I have ever experienced.  The technician was so rough and inconsiderate, I felt as though I had been violated.  After I regained my composure and had gotten dressed, I was told that Dr. Neiswinder was on the phone for me.  Over the phone, in the ultrasound room, Dr. Neiswinder informed me that I had a missed miscarriage, that my baby had no heartbeat.  She told me to come back over to the office, to discuss our options.

My husband and I drove back over to the Mountain View office, for the second time that day.  When I arrived, I was told that there was no room available for me, and that we would have to wait.  We waited in the weight/blood pressure room for twenty minutes, before we were taken to an exam room.  It was there that Dr. Neiswinder discussed our options, and I chose the surgical option, which would take place the following morning.  She said that scheduling and paperwork needed to be done, and but that we could not stay in the exam room.  We were moved again to the "Video Room," a tiny room that looked as though it also served as a utility closet.  Only one metal chair could fit into the small room, so my husband had to stand.  After another twenty minutes, a nurse finally arrived, but only to move us again.  We were finally placed in a slightly bigger Video Room (this one had two chairs), where we waited with no privacy.  For over thirty minutes, I sat in the room, while nurses came in and out to get things that they needed.  I listened, as the nurse on the other side of the thin wall made calls to schedule my surgery and loudly complained to her coworkers about the large amount of paperwork that I required.  She then came into the room, apologized for my wait, and explained, "I have to do double the paperwork, because there's another patient here, like you."  When all of the forms were signed and dated, she informed me that I had to go back to Hanover Hospital, immediately, for my pre-admission workup, which I did.

On November 29, 2010 at 1:00pm, I came into your office for a routine obstetrics visit, and learned that my baby had no heartbeat.  And at 6:00pm that evening, I was finally able to sit down at home, exhausted, and weep in mourning for the loss of my unborn child.  It took five hours to diagnose me with a missed miscarriage, and arrange my D&C.  Almost two hours of that time was spent waiting, in your office, juggled from one room to the next.  Over a half an hour was spent traveling back and forth from the hospital to your office.  I was made to feel as though there was no longer a place for me at your practice, because I was no longer pregnant.

I am writing this letter, because I think you need to hear the perspective of one of your patients.  I think it is clear that due to the high volume of cases you see everyday, your staff has become desensitized to the emotions and humanity of your patients.  When explaining my procedure, Dr. Neiswinder told my husband and I that "the clump of tissue would be removed" from my uterus and discarded.  To us, it was not a "clump of tissue."  It was a baby... our baby, that I was going to nurse, and rock and love.  It was our baby, that we had begun to prepare a room for.  It was our baby, that we thought was alive and well, until earlier that afternoon.  When the nurse told me that there was "another like me," my heart ached for the fellow mother.  I wondered if she, too, had been shuffled from room to room, sitting alone in her sadness, staring at a blank wall.  I am certain, in all your years of service, we were not your first miscarriages.

I write this letter with a suggestion.  Perhaps, somewhere in your office, you could have a "Grieving Room."  It could be a room with a couch, flowers, soft music, and a box of tissues (which I was never offered).  It could be a place for "patients like me" to wait for options, for scheduling, and for paperwork, in private, able to grieve and mourn as they need.  It could be a place that would provide comfort in the saddest of times.

I would like to say, how much I appreciated the work of Dr. Naymick, who performed my surgery the following morning.  The warmth that he showed my family and I was the first sign of compassion that I had received from your office, since my ordeal unfolded.  I am eternally grateful to him, for that.  The staff in the Same Day Surgery ward at Hanover Hospital were kind and supportive, as well.

I beg of you all, at Mountain View Ob/Gyn, to open your eyes and hearts to the tragedies that your patients face, and treat them accordingly.

Thank you,
Anna Corbin

Tidings of Great Joy...

It's that time of year again, when I hate going to the mailbox.  Normally I dislike getting the mail in anticipation of bills or late notices, but none of them compare to the most dreaded mail of all...

The Christmas Letter.

No offense to those of you who write them.  I know it is a nice way to keep loved ones informed of the past year in your lives.  But, really... embellish much???  As I read these multiple page sagas of promotions, straight A's, trophies, and family sing-a-longs by a warm fire, all I can think is, "What a load of crap!"  No one's life is that perfect.  Just once, I'd like to read a truthful Christmas letter, one that keeps it real.

So, in honor of the holiday season, when you are supposed to be pure of heart and tell the truth, I thought I would write my version of an honest Christmas letter.  This is what I would say, about the past year:

Dearest family and friends:
            I hope this letter finds you all in good spirits.  2010 has been quite a year for the Corbin family.  It began with New Year's Day, which was spent in the Emergency Room.  My constipation had finally gotten completely out of control, resulting in a severe hernia.  The doctors repaired it with surgery and a mesh patch, but alas, I still can't poop.  We are hoping things move more smoothly for me by next Christmas.  We'll keep you posted.
            Michael has been the most successful of our clan.  He received a promotion at work, but that didn't compare to the joy and pride that we felt, when he finally beat "Call of Duty: Modern Warfare 2" on the Xbox 360.  A tear came to my eye as I watched him complete his final mission.  But, that may have been because my ears were bleeding from the high decibel gunshots I'd been listening to for three months.
             Our boys, Jackson and Henry, are doing well.  Jackson started preschool this year and seems to be making lots of friends.  We are trying to learn all of their names, so that we know who to blame when Jackson does something wrong.  Henry has even made friends at Jack's school.  In fact, the woman who he threw his clogs at on the first day, says "Hi" to him each morning.  The boys are very close.  At Preschool Drop-Off for Jack, Henry bids good-bye to him, in the same loving way, every morning by shouting, "Bye-bye, Poopy Head Jackson!!"  It warms my heart, to witness their bond.
              The other night, after we put the boys to bed, Michael and I lit candles, and sat on the couch, curled up under a quilt, reflecting on the past year, and how blessed we are.  After all, we made it one more year without needing Welfare!  As we high-fived each other, we realized that the Med-Ed bill must have arrived on time, because the electricity wasn't really shut off.  We quickly blew out the candles, turned on the lights, and settled in for some "Call of Duty."  Yes, we most certainly are very blessed.  Here's wishing you and yours, the Merriest of Christmases.  

Love, The Corbin Family

Letter to the Editor...

Part 2 of my Walmart Series will resume later this week.  For now, here is a Letter to the Editor that I submitted to our local paper this morning. 

Editor:
I have been following the local story of the unspeakable tragedy of Jonathan Nodine, the 11 month old child who lost his life as the result of child abuse. I pray that there is justice for his death. There is one part of the story that I cannot ignore. Jonathan was seen at the Hanover Hospital emergency room and released, only to suffer from cardiac arrest a mere 12 hours later. He died five days after that. I have spent time in the same ER. The last time was when my son was very ill and, like Jonathan, he was discharged despite my insistence that something was wrong. Each of my cries was ignored with lack of concern. It was only after we traveled to York Hospital that my son’s condition was diagnosed and treated and that he was able to make a full recovery. Jonathan’s family took him to the hospital expecting doctors to exhaust all efforts to make him well. Doctors take the Hippocratic Oath to care for patients. That means giving time, attention, and consideration to each patient. Instead, they discharged Jonathan Nodine, putting the final nail in his coffin. He deserved better.

Recently, in Tennessee, a family did not pay a required fee to their local fire department. When the family’s home caught fire, the fire department came only to protect the neighboring houses. The firemen stood with the resources in hand and watched a home burn to the ground. The family lost their home, their valuables, and even their pets, while trained firemen watched. They deserved better.

Everyday children are bullied. Classmates, teachers, and school officials stand by without offering protection. These bullied children have to suffer alone, sometimes until it reaches the point of murder or suicide. They deserve better.

Catholics celebrate “Respect Life Month” in October, which is commonly known as a Pro-Life campaign. I think that respecting life goes even deeper than the sanctity of the lives of the unborn. We live in a world where doctors, firemen, and teachers are not doing their jobs. Their jobs are to perform acts of humanity. Yet that seems to be too much to ask. All people, especially those who make a commitment to serve the community, should learn to Respect Life. We deserve it.

“And as you wish that men would do to you, do so to them.” Luke 6:31

Anna Kruk Corbin

Thank You For Choosing Walmart (Part One)...

For those of you avidly following my blog, you will know that I am a devoted wife and mother who loves her children unconditionally.  You will also know that I am in no way, shape, or form, what you would call a "People Person."  It may come as a shock to you, then, that I once spent five years at a job that forces one to eat, sleep, and breathe customer service.  That's right.  For five (long) years, I worked at Walmart.

I always say that you should not be allowed to enter a store unless you have worked in the retail industry.  You need to know what it is like to work in the trenches, before you are allowed to shop in them.  I have decided to give you all a glimpse of what it is like to work in an environment such as Walmart.  I have divided this entry into two parts, as to not overload you with the vital insider information I am about to share.  Keep in mind, I worked at Walmart when I was between the ages of 17 and 22.  My store, at the time, was not a Supercenter and did not have a Grocery section.  It was just a plain, old Walmart.  I am sure that much has changed since I worked there, but this is how I remember things.

PART ONE:  THE ASSOCIATE

Walmart employees are known as "Associates."  There was an understood hierarchy.  Not among the managers, but among the Associates, themselves. 

Cashiers were the low men on the totem pole.  Little respect was given to Cashiers, because they only had to run the registers.  They weren't very important to anyone, but the Customers, and everyone knows that the Customers are the enemy.  They were considered a nuisance if they had to page a Floor Associate for something as trivial as a price check.  After all, the Floor Associate had important work to do, like stocking shelves, making price changes, and answering stupid questions.  It was customary for a Floor Associate to make clear to the Cashier how much he/she was inconvenienced by a price check page.  The Floor Associate usually did this by finishing his/her soda in the Break Room, before answering the call.  Plus, Cashiers were coddled.  They had their own highlighter wielding managers (CSMs), who made sure that they all took their breaks at the proper time.  All Floor Associates secretly resented them for that.  As a Floor Associate, you were lucky to scarf down some Butterscotch Krimpets from the vending machine in the middle of an eight hour shift during the Christmas season.   On slow nights, the CSMs, would send Cashiers to help the Floor Associates "Zone" (clean up their departments).  This was always more trouble than it was worth.  The Cashiers were fresh meat on the floor, not knowing where anything was located or how to help the customers.  And they were always so excited to have their shackles removed from the register, that they were too perky and energetic.  Floor Associates were jaded and hard and that helped them get through their day.  Floor Associates had no time for "perky." 

Floor Associates were divided into two sections:  Softlines and Hardlines.  Softlines consisted of the clothing departments - Mens, Ladies, Boys, Girls, Infants, Lingerie & Accessories, and the Fitting Room.  Hardlines was everything else.  While equally respected, the two sections were very separate.  I spent a good bit of time working in Softlines. When it was decided that I would move over to Health & Beauty Aids, in Hardlines, I was all but given a going away party by my friends in Softlines.  Sure, I was still working at the same store and was moving to a department only fifty feet away, but we all knew that intermingling between Hardlines and Softlines just wasn't done.  It couldn't be done.  They were just two very different worlds.

Stockmen were your multi-purpose Associates.  They were really there to push in the carts, but they were so much more.  They were good for getting things off of the very top shelves in the Stock Room by using the big ladder that scared me.  They had the best jokes in the Break Room and were always there when you needed them... unless they were out smoking weed in the parking lot.  But the main job of the Stockmen was to be eye candy.  They were tanned young boys within my age group at the time.  To this day, I can't see a college boy in a fluorescent orange shirt without my heart going all a-flutter.

And, finally, there was Lawn and Garden.  The Lawn and Garden Associates were like their own exclusive club.  They all hung out together and spoke their own language.  They worked weird hours, half of their department was outside and they got to wear shorts in the summer.  The coolest of the cool worked in Lawn and Garden and that was without question.

There is something interesting that you may not know, about the employees of Walmart. Walmart Associates do not have last names.  Like the Men In Black, it is a privilege that you surrender the moment you put on that Blue Vest.  You become your first name, followed by your department.  Frequently overheard in the Break Room:

"Did you hear that Anna in Ladies Wear is dating Nathan in Electronic, again?"
"No, that's funny, because Karen the Cashier told me that Anna in Ladies went to lunch with Dan in Pets yesterday!"

(Yeah, that's right.  I didn't change names.  There are no secrets in the World of Walmart.)

The Break Room was our only solace.  It was a place to vent, ignore pages, and, most of all, gossip.  The gossip was out of control.  The stories that were told, made-up, and exaggerated in the confines of the Break Room were the stuff of legends.  I've witnessed firings, fights, nervous breakdowns, and nasty breakups, all while standing at the vending machine, deciding between Doritos and Krimpets for my seven minute dinner break.  However, the drama was necessary.  The harsh reality of fanny pack wearing moms beating their screaming kids were just beyond the swinging double doors behind Layaway.  We had to keep our World of Walmart interesting, to maintain our sanity.

Well, that's it, for now.  Hopefully, you have gotten a better understanding of the inner workings of a Walmart Associate.  Be sure to tune in to my next entry, when I discuss the most ridiculous of all creatures:  The Walmart Customer.  (If my blog had a soundtrack, now would be when you'd hear the ominous "Dun-dun-DUN!")

Letter to NBC...

This is a letter that I am currently sending to any media outlet who will listen.  It's pretty self-explanatory.

To whom it may concern:

On September 22, 2010, I tuned into NBC for the highly anticipated season premiere of Law & Order: SVU. Imagine my surprise when I began to view a show that fights for the rights of the violated and had to watch as my children and I were the ones victimized.

In the episode, “Bullseye,” a character was featured with a severe mental disability who, because of his disability, had urinated in public and subsequently had been placed on the sex offender registry. When his speech became vulgar as he talked to the detectives, his mother asked for forgiveness. She explained that he didn’t know any better because he has Noonan Syndrome.

I am to assume that you have no experience or knowledge concerning Noonan Syndrome (NS). Most do not. You have no idea what it is like to speak to friends, neighbors, teachers, and even medical professionals who have never even heard of NS. They have to be told that NS is characterized by short stature, delayed puberty, specific facial features, bleeding tendencies and most importantly, heart conditions. They also have to be told that NS very rarely affects cognitive function.

I have longed to raise awareness for Noonan Syndrome, to give it national recognition. Being labeled as having a “syndrome” brings with it the unfortunate stigma of stereotypes and assumptions, fueled by the ignorance of others. On Wednesday, September 22, over eight million people tuned into NBC and heard the words, “Noonan Syndrome,” for the first time. Those eight million people watched a character whose portrayal of one with NS was so exaggerated, so grossly inaccurate, it was offensive to those of us who do have Noonan Syndrome.

I have Noonan Syndrome. Both of my children have Noonan Syndrome. We have a mutation of the PTPN11 gene, the gene mutation that accounts for over 50% of the documented cases of NS. I would like to make clear that I did not find your portrayal of NS offensive because it implied a cognitive disability. I am offended because the portrayal was incorrect and you randomly chose a disorder without doing any research, not realizing the damage that could do. If you had made the character look younger than his age, be significantly smaller than his peers, or have a heart defect, at least you would have been on the right track. But, the large bulky man who attempted to fight two detectives, had none of the qualities of one with NS.

It is too late to ask for an apology or any kind of redemption. What I do ask, is that in the future you do better research when tackling the responsibility of portraying a disability or disorder in the media.

My children are much smaller than other children their age and look a little different. They have bleeding disorders associated with NS and they both have heart defects. They have been hospitalized more than once for their issues and are extremely brave. I can only hope that as they get older, they never see the Law & Order: SVU episode, “Bullseye.” I hope that they never see what NBC thinks personifies Noonan Syndrome. I hope that they will never see one of the seeds that was planted to contribute to the stereotypes, assumptions, and adversities that they will eventually have to face. Fortunately, they will never see it in my home, as I have watched Law & Order: SVU, for the last time.

Thank you,
Anna Corbin

Welcome, Fall...

I love summer.  I love wearing tank tops and flip flops.  I love to feel the sun on my face while getting the mail.  I love to feel the wind in my hair, riding on my stepdad's boat.  I love to feel the sticky skin on my boys' cheeks, as I kiss them goodnight, after a sweaty day at the pool.  Summer is my favorite season.  However, oddly enough, I am never sad to see it go.

There's just something about Autumn.

Autumn brings warm colors, bulky sweaters, blue jeans, and evenings with wide open windows.  As a child, Autumn was synonymous with the start of school - a happy time, for me, because I loved school.  This year, things have come full circle.  Jackson, my oldest, started preschool and began a new phase in the lives of all of us.  When he carried his book bag across the threshold of his classroom, he shook the "baby" dust off of his shoes.  I have heard that mothers cry when their children start school.  I did not grieve.  Jackson starting school is a wonderful thing.  It has been exciting for our entire household.  It gets us all up and moving in the morning.  It gives Henry and I some alone time.  Dinnertime is filled with joyful stories of new friends and finger painting.  It has been an amazing new chapter in our lives.

I have always found it interesting, that Autumn is a season that completely revolves around death.  The leaves change and fall to the ground.  The crunching of the dead leaves under our feet becomes the soundtrack of the Fall.  People flock to corn mazes, chasing each other in and out of dead corn stalks, loving every minute of it.  Neighbors fill their yards with artificial gravestones and hang skeletons from trees for Halloween.  November second marks the Feast of All Souls, when we pray for those who have gone before and honor the dead.  However, knowing that each Autumn from now on will signify that my boys are blooming and growing, I can look past these underlying themes. 

Because for me, Fall is not about death.  It's about rebirth.

Summer is over, but it will return.  The flowers are drying up, but they will bloom again.  My boys are getting older, but they are growing and learning and using the values and lessons that we have planted in them.  Being a part of that transformation is a beautiful experience. I have come to realize that as my boys are prospering and flourishing, I am as well.

This evening, I put on a sweater and stepped out into the cool air to hang a red, gold, and orange wreath on the door.  I stooped down to pull a few brown leaves off of what is left of my front porch plant and I smiled at the irony.  This year, beginning a season that is shrouded in death, I have never felt more alive.

Sing, Sing a song...

People always say that it doesn't matter if you aren't good at something.  They say that as long as you try your best, put effort into it, and give it your all, that's what matters.

That is, unless, the "it" in question is singing.

If you aren't a good singer, things like, "trying," "effort," and "giving it your all," mean nothing.  You are either a gifted vocalist or you aren't.  Sometimes lessons don't even help, as American Idol has proven year after year.

I have a terrible, terrible singing voice. 

At parties, I mouth the words to, "Happy Birthday." 

I have never even attempted Karaoke. 

I couldn't carry a tune in a bucket.

I will never be a rock star.

Despite these facts, I perform two sold-out shows a night.  On nights that I cannot appear, riots have broken out.  My encores are so in demand that I barely get to my second venue on time. 

Fortunately, for me, my stages are right across the room from each other.

My first gig is usually performed in Henry's bed, just before 9:00pm.  My set usually opens with a little "Wheels on the Bus," followed by some, "Head, Shoulders, Knees, and Toes."  Sometimes Henry likes to switch it up and requests that I make up a song, based on a topic of his choosing.  Inevitably, I close with "Over the Rainbow."  It's Henry's favorite and puts him right to sleep.

I then creep over to Jack's bed.  Jackson is a little more predictable.  He prefers a repetitive set.  I sing an old family lullaby, "Dear Little Dolly," to him eight or nine times in a row.  Sometimes, I throw in "Jesus Loves the Little Children" to break up the monotony.

My audience is always pleased.

My husband, on the other hand, likes to shout words of "encouragement" from the next room.  He gets particularly critical on nights when I'm really feeling "Over the Rainbow."

"Oh wow, Honey!  That last note was so awesome, I think you broke three glasses... and I can hear some dogs howling!"  And then he laughs manically.

Humph.  I've heard him warble through "Country Roads," to the kids on nights I have taken a break and I think Mr. Two-Cents should keep his mouth shut.  Literally.

The important thing is that talent or no talent, howling dogs or not, I sing to my children.  They love it and they are too little to know that I am not any good.  It's their mommy's voice and even if it sounds like a screeching cat, it has been a comfort to them since they were in the womb.  It's the love behind the voice that soothes them.  The best part about babies, especially, is that they don't even care what you are singing, as long as it's sung.  I've dictated grocery lists, given instructions for dinner, and had entire arguments with Michael to the tune of "Twinkle, Twinkle Little Star," while rocking my newborns.

Michael, Michael, please come here,
I am going to punch your face.
I need help with the laundry,

I am not your freaking slave.

Anyway, even if it's only for a half an hour a night, I guess I get a taste of what it would be like to be a rock star.  I have two adoring groupies who cheer wildly when I enter the room, are always thrilled with my performances, hug and kiss me as much as they can, and have even thrown their underwear (and diapers) at me.  (But, we'll save that story for another blog.)

Little do they know that it's the two of them who are the true rock stars.  There is nothing that they do, that I do not find extremely fascinating.  Just being in their presence makes my day.  They provide constant entertainment to our household.  So, if it makes them happy for me to sing to them each night, even if it's embarrassing I don't mind doing it.

It's my way of showing them, that I am their biggest fan.


"....Don't worry that it's not good enough, for anyone else to hear.  Just sing, sing a song."