Coasting In On Fumes

The Circle of Life (as told by an ebayer)...

2011-08-16T14:06:00.000-04:00

There was a chill in the air yesterday that gave me the feeling that autumn may come early this year. I knew what had to be done. Last night, I sat on the living room floor and opened the box of Henry's fall clothes from last year. I started the painstaking process of taking out each little shirt, each little pair of jeans, and each little set of pajamas. As I removed each item from the box, I made a note of the size and brand, ironed it, took a picture, carefully folded it, and placed it in a cardboard box, lined with dryer sheets. Michael watched from the couch, occasionally commenting:

"Are you sure those are too small for him?"
"Is that a stain or fuzzball on the sleeve?"
"Awww... I LOVE those pjs!"

Yes, Michael, I love those pjs, too. Unfortunately, our financial situation does not allow us to become too attached to inanimate objects. When we are done with them, they become income. It will be cold soon and it is time to say good-bye to our "3T Toddler Boys Fall Winter Clothing Lot." There are thirty-seven items... the Mother Load! Name brands, no flaws, all from my smoke-free/pet-free home. Two hours after I opened the box, the lot was listed on eBay. It is ready and waiting for someone to take the first bid. And by my calculations and experience, it should net enough to buy Jack's winter coat this year, with hopefully enough left over to buy a hat, gloves, and maybe even his boots... all of which will be purchased, second-hand, from eBay. That's how the eBay Circle goes. Henry wears Jack's old clothes, which get sold after he outgrows them, and we use the money to buy most of Jack's "new" clothes, which Henry will wear in two years, and then grow out of... at which time, I'll sell them on eBay.

It's really quite beautiful when you think about it. Somewhere, someone who maybe struggles like we do, is taking photos of the coat that Jack will wear to school, this year. And somewhere else, someone who can't afford store prices knows that her child will be warm in a coat that did the job for Henry last year. I like to think of eBay as a method of Pay It Forward, except with a little extra cash, included! It is an outlet for those whose options are limited. It is a way for us to connect to each other and help our fellow man, by providing things we want and need at reasonable prices.

Occasionally, that connection goes deeper than any of us realize. I recently sold two chairs on eBay. I had intended to keep them for the boys, but the chairs didn't fit at the art table. The woman who purchased them, was a total stranger to me... just an eBay id. A little over a week ago, a few days after the sale was finalized, I received an email from her. She had clicked the link to my blog from my eBay page, and had been touched by my words. My original goal in creating this blog was to reach out to those who need a silver lining when the sky seems darkest. I wanted to make people aware of my boys' condition, and also the plight of the lower middle class, but in a positive way. Her email gave me validation. Last night, I sadly put little pajamas online, as I have done many times before, to sell to strangers, wishing that we had the stability to save them for our grandchildren, or even more children of our own. Then this morning, I realized that my sacrifices are not in vain. I received another email from the buyer of the chairs, who I now know as "Lori." She had been a stranger, but has become a lovely person in my life. Her email provided me with a link to a blog that I apparently helped inspire her to write, with a beautifully written post about yours truly. Thank you, Lori, for showing me the little ways in which we can impact the lives of others. Thank for giving me the ultimate compliment of saying that I inspire you. Thank you for reading my blog and thank you for sharing your story, as well.

Henry's fall clothes are packed and ready to ship to the highest bidder. Jack's winter coat will be purchased next month, at which time Henry's summer clothes will be boxed in preparation for being listed on eBay next May. And with that, the Circle of Life -- of eBay -- continues.

To help keep the circle flowing, as she has been so kind to promote me on her website, I would appreciate it if my followers would check out the blog of my new "friend," who I would have never known, if not for those two little chairs that I didn't have room for. : )

http://lori-logic.blogspot.com

The best medicine...

2011-06-29T11:06:00.003-04:00

One of my favorite movies of all time is "Little Miss Sunshine." My sister saw it first, at the theater. She called me and said, "Anna, you MUST see this movie. You'll pee your pants." Since my family considers laughing until you pee your pants to be the absolute pinnacle in judging a comedy, I listened to her.

And yes, I almost peed my pants. It was one of the most hilarious films I had ever seen. For those of you who haven't seen it, it is about the Hoover family, making a cross-country trip to get their daughter, Olive, to the Little Miss Sunshine pageant. Every member of the family is a failure in his or her own right, and the pageant becomes a delusion in their minds. They are so down on their luck, that they take every last penny they have and pin all hopes of any chance of winning at anything on poor little Olive. They are a desperate family on a mission, and they will let nothing stand in their way.

The following day, I went to work and told everyone I encountered to go see this movie. A few days later, my boss pulled me aside, and expressed her disappointment in me. "I saw 'Little Miss Sunshine,' Anna," she said. "I didn't laugh at all. I thought it was depressing, I thought it was sad, and I can't believe that you are the type of person who would laugh at the misfortune of others."

I was stumped. Had we seen the same movie? Did I miss the point? Was I a bad person for enjoying it? Upon viewing the movie again, this time with my mother, who laughed even harder than I did, I realized that I hadn't missed the point. My boss had. She just didn't "get" it.

The themes of LMS are not the most positive: Suicide. Unemployment. Drug Use. Bankruptcy. Death. But it is the manner in which the family handles them that makes it funny. I am not laughing at them, I am laughing with them. In one way or another, I have been there. I understand wanting something good to happen, and being willing to go through anything for a "win." There is a fine line between determination and desperation. Trust me, once you cross that line... sometimes all you can do is laugh.

I have been crammed in a Volkswagen Rabbit with no A/C in the middle of July with four other people, including my handicapped grandfather and a weeks worth of luggage, in a car that kept overheating. My dad was so determined - er, desperate - to get us to WV for vacation, that he kept waiting for the car to overheat, only to let it cool, pour some water in the radiator, and restart the car to drive five miles before having to start the process again. At the time, not so funny. Looking back, pretty hilarious.

I have gone with my mom and step dad to a vacation on Deep Creek lake, knowing we couldn't afford to go, but so desperate for a change of scenery, went anyway. Then I called my husband, convinced him to get into our son's piggy bank for enough change to get him enough gas in the car to come join us, with no way of knowing how we'd get home. After he arrived at the lake, we laughed about it all week long.

I have thrown impromptu Yard Sales in my front yard, selling anything from the rack the clothes were hanging on to half used bottles of hand lotion, because I was desperate to go out to dinner that evening. Insisting that a toothless woman wearing a mumu pay me $1.00 instead of $.50 for a bottle of Curel that I had just used after my shower that morning, just to get to eat a decent cheeseburger, that's worth a giggle or two.

I have been there. And I have not been alone. The best part of having a dysfunctional family, is that you are a "family." You are with others who are like you, who understand you, who "get" you. My boss came from a well-to-do household, where the car always ran, vacations were planned a year in advance, and she never had to have a yard sale in her life. Because of that, she doesn't understand that when faced with problems or tragedies, people find different was to cope. And my family, now and always, chooses to laugh. We understand that life is crappy, and as long as you surround yourself with people who understand that, everything with be okay. And if it's not, at least you have someone with whom to laugh about it.

My favorite scene in "Little Miss Sunshine," is right after the grandfather dies. (Hilarious, right??) Unable to afford funeral arrangements and having only an hour to get to the pageant, the Hoover family steals the dead body from the hospital, throws it in the trunk, and goes on their way. Soon after, sirens can be heard. Richard, the father, warns his family, "Pretend to be normal," and heads to the back of the van, where he fears the police officer has found the body. Instead, the officer has found the grandfather's porn stash. In an effort to distract the cop, Richard pretends that they are his, and he and the cop ogle the magazines while a dead body lies in front of them, covered only with a sheet. It is one of the funniest moments in movie history.

While my family doesn't regularly buy porn or use heroin, I am proud to have a family like the Hoovers. I am proud to have people in my life who "get" me. We understand each other's failures and flaws, and we accept them. And I am proud to be raising my children to laugh at themselves, instead of feeling sorry for themselves, by finding humor amid utter devastation. Sick kids, past due bills, overdrawn checking accounts, broken furnaces and all, I happen to think my life is, well, like Richard describes his copy of "Big Jugs" magazine... Sweet Sweetness.

http://www.youtube.com/watch?v=VWyH_twcMl0

A Memory of My Dad (for Father's Day)....

2011-06-15T12:35:00.002-04:00

It was a dark and stormy night. I was fourteen years old. It was the middle of winter and our heat had gone out. Again. Coming from a long line of family who had also coasted in on fumes, my dad decided to fix it himself. I was in my bedroom, listening to the Jackson 5 and writing up a Science lab, with a space heater at my feet. I could hear, through the vent, the normal sounds that came with my dad fixing things.

Banging. Clanging. Cussing.

I knew my mom was minutes away from calling a repairman, so I prayed that I would soon hear the familiar click of the furnace, so that an argument would be avoided. What I heard next was not a click. It was not a bang. It was not a clang. It was not a @#$*. It was the closest sound I had ever heard in my life to a KA-POW! I looked over to my heating vent and saw a puff of smoke come out of it. And then I heard my mother screaming. I flew downstairs to see smoke in the kitchen and smoke billowing from under the door of the basement, where my mother stood, calling frantically for my father. With still no response, my mom and I looked at each other, knowing someone was going to have to go down to see what happened. My little brother and sister stood huddled at my mom's legs, eyes wide with fright. Then, we heard his familiar footsteps. We backed up to give him room. When he reached the top of the stairs and the smoke had cleared, we gasped. We did not greet my father with cheers that he was alive, or hugs of relief. We met him with laughter.

My dad looked like Wile E. Coyote after an ACME stunt gone incredibly wrong.

What little hair he had left on his head when he had gone downstairs, was now singed to his scalp. His eyebrows were completely gone, and his moustache was burnt and frayed and sticking straight out from his upper lip. Angry at the utter lack of support from his family, my dad pushed past us to the bathroom mirror, to survey the damage. As he stood wiping the black off of his forehead and from around his eyes, I tapped my brother on the shoulder and pointed to my dad's legs. One thing I will always remember about my dad, is that he is perpetually hot. So, no matter the season or temperature, he always performed home repairs wearing a pair of cutoff shorts and no shirt. That night was no different. And the explosion had burnt every last hair off of my dad's legs. As our eyes drifted upward, we saw that the ten hairs that my dad had proudly displayed on his chest since puberty, were also gone. When we all composed ourselves from hysterical laughter, my mom spoke. "Larry, I yelled and yelled for you. I was worried! Why didn't you answer??" He slowly turned to look at her. "I couldn't answer you," he calmly replied, "because I was putting out the FIRE that was on my FACE!!!" And with that, the laughter started all over again.

In the end, the culprit was a faulty pilot light. Dad had tried to relight it with a Bic lighter, but hadn't checked to see if the gas was off, and it blew him all the way across the basement. A few days later, Dad began speaking to all of us again and soon found humor in what had happened. Aero Oil installed a new furnace the following week. And Dad's body hair grew back, just like normal.

But he never touched a lighter, again.

Happy Father's Day, Dad!!

Hello, my name is...

2011-06-01T02:10:00.017-04:00

One of the charities that we support is the March of Dimes. Henry was premature, and the MoD does wonderful work. When you become a benefactor to the MoD, they show their gratitude by sending labels to you. They also ask for more donations, by sending labels to you. They send labels for every season. They send lots of labels. Thousands. I now have so many address labels that I have decided that we can never, ever move. The other day, I decided to organize them. The ones with snowflakes, I placed into an enveloped marked, "January." The ones with hearts - "February." Flip-Flops - "July." Pumpkins - "October." After a half an hour, I started giggling. I was labeling my labels.

From a sociological standpoint, when labels are applied to an individual, it can affect his behavior, particularly when the label is a negative one. Often, those who are labeled are forced to conform to how they are being judged by the labelers. For this reason, labeling concerns me, especially regarding my children. Children should never be labeled, but inevitably it happens. I catch myself trying to do it to my boys. I guess I think that since I love them, if I create the label, then they will be protected from someone else doing it. But not even I can find a label for them. They have Noonan Syndrome. That automatically makes them different. And while that difference needs to be understood and accepted, it should not be the basis on which to judge them. On the other hand, it also should not be ignored. It is there, and it is important that others acknowledge it, but not focus on it. And therein lies the dilemma.

So, are they "disabled?" Because they have a congenital syndrome that affects their overall health, with the proper paperwork, the state would say, "Absolutely!" And their physicians agree. I have a hard time with that, though. The Disabled Label implies that they are unable to do things that others can. My boys may take longer to do physical things, like hop on one foot or pedal a bike, but eventually they are able to do most things that other kids do. Jack is able to play football. But he is not allowed. A wrong hit could cause internal bleeding, that could be fatal for him. Therefore, we have been advised to never let him play. Henry is able to kick a soccer ball and chase it down the field. But he is not allowed. In addition to the bleeding issues, pushing himself too hard could put a strain on his delicate heart. Their conditions cause limitations only because of the risk involved. There is no piece of paperwork in the world that allows you to check a box that says, "Able, but not recommended."

Occasionally, I do use the term "special needs," when talking about the boys. It seems fair. If the boys get sick, they need extra time to get better, because of weak immune systems. If they fall or get cut, they need to take their clotting medicines. They also need to see at least five specialists, annually, in addition to their regular pediatrician visit. I guess the problem I have with the Special Needs Label is that it's a little broad. I think that even parents with healthy children would consider their kids to have "special needs." You could argue that all kids have special needs. I mean, Noonan Syndrome aside, Henry needs at least five minutes of snuggling after he wakes up, or his day just doesn't begin properly. Jack needs to have his oatmeal put in the freezer to cool off, or he won't eat it. Henry needs his blue clogs before he leaves the house, and Jack needs his boo-bah before he goes to sleep. And those special needs affect my daily life much more than the medical needs do.

Unfortunately, some labels my boys will never have. Normal. Healthy. Athletic. And that's okay, because those don't necessarily apply to Jack and Henry, either. It's only a matter of time before their peers realize that they are smaller than other kids their age. Or that they miss a lot of school. Or that they can't play as rough. But it's also only a matter of time before their peers realize that the vocabulary and grammar of my boys is more advanced than those of some adults. Or that they are so imaginative, they can create an entire day of play based around an empty paper towel roll. Or that they charm everyone that they meet, even if it's just in line at the grocery store. I can only hope that by the time they begin to be labeled, their medical issues take a backseat. I can only hope that others realize that there is much more to my boys than their NS. I can only hope that they are labeled Kind. Generous. Trustworthy. Gracious. Honest. Good.

As I finished labeling my labels, the boys came up to me and asked if they could have some of my "stickers." So, using a Sharpie over my own name and address, I finally did it. I labeled my boys. On the one with the mess of curls, who looks exactly like his mother and has a laugh that can light up a room, I placed a sticker that said, "Jack." On the one with self-cut bangs, his daddy's eyes and a devilish grin, I placed a sticker that said, "Henry."

They stood, happily, proud to display who they really are, my Henry and my Jack. And I hope that those labels stay with them forever.

Quality of Care...

2011-04-08T12:39:00.005-04:00

It seems that Health Care is always being scrutinized, but never for the right reasons. Medicine has become a political issue... who should receive disability, should we vote for Obama Care, should women have the right to choose? While those questions are important economic and moral questions, as the mother of two special needs children, there's much more to Health Care than that.

I am what those close to me call a "Medical Snob." I believe that everyone deserves high quality health care. I am that person who arrives at a party, and someone inevitably says to her husband, "There's Anna. Don't mention our trip to the ER last week, she'll never shut up." I can't help it. I feel that people are ignorant to the care that they are supposed to be receiving. I was ignorant myself. Until I had children, I had minimal experience with hospitals. In the last five and a half years, my children have spent a total of 25 nights in a hospital, with more to come. When you have children who see specialists on a regular basis and who are hospitalized for the smallest procedure, mediocrity is not an option. I am a medical snob. I am a BIG medical snob. The extent of my snobbishness is severe: If you live in my area and the hospital you are talking about is NOT Johns Hopkins, don't bother.

Obviously, I haven't been to every hospital in the United States, so I am not saying that JHH is better than EVERY hospital (though it has been ranked #1 Best Hospital in the United States, according to US News and World Report TWENTY YEARS in a row!). I have heard wonderful things about CHOP and Children's Hospital Boston. There are some fabulous hospitals in this fine country of ours. But, there are some lousy ones as well. And if you live within a 50 mile radius of my town, it's slim pickings. (I'm sure someone with bring up Hershey Medical Center. HMC is great, but it's not as great as Johns Hopkins.)

Going to Johns Hopkins for the first time was like putting on a brand new pair of glasses.

"Wow! This is what it's supposed to be like? This is what I should have been seeing all along??"

I had no idea that the standard of care could be so high. And unless you've ever been a patient there, you don't have any idea, either. So, to give you an idea of what Health Care is supposed to be, may I present:

THE TOP TEN REASONS WHY I LOVE JOHNS HOPKINS HOSPITAL

10. The Food Court Don't laugh. I'm being totally serious. When my kids spent 25 days in the hospital, I had to, too. And I had to eat. Only my fellow moms of sickly children will understand the importance of a food court. JHH has a food court that is simply amazing. At 3am, after an exhausting day of blood work, procedures and surgeries, sometimes the only joy that can be found, is in the first bite of a Subway sub.

9. The SWAG Who doesn't love free stuff? I am a huge fan of hospital SWAG. When you leave JHH from an overnight stay, you get diapers, wipes, bandages, thermometers, baby wash, and much, much more! Not only do they take care of you while you are there, they give you what you need to continue the care at home. What other hospital sends you home with a plastic laundry bag filled with parting gifts?

8. The Accessible Testing When Jack was hospitalized for dehydration a few months ago, he was admitted to York Hospital because they are affiliated with our Pediatrician. Each time he needed an x-ray, I had to carry him down the hall (dragging the IV stand) to the elevator, and down to X-Ray. At JHH, if the tech can't come to you (which they usually do), two nurses take your child, in his bed, to where he needs to go. It's extremely convenient and takes the stress out of an already stressful situation.

7. The Sky's the Limit Testing Most would probably not see this as an advantage, because of the rising costs of health care. But, in the long run, it is totally worth it. JHH leaves no stone unturned. Whatever the complaint, they test and evaluate until a solution is found. You never leave with unanswered questions.

6. Email = Constant Physician Availability True Story: While Henry was at JHH for a Gastro issue, I noticed some swelling on his testicle. A Peds intern checked him but I wasn't satisfied, so I emailed the boys' JH Urologist, Dr. Gearhart (thank you, JHH wireless internet access). Within minutes, he replied that he was literally on the beach in South Carolina, on vacation, but that he would check him when he returned the next day. An hour later, a Pediatric Urology Resident appeared at Henry's hospital room, with an ultrasound machine and Tech. Dr. Gearhart had called him, from vacation, and asked him to go check on us right away. Seriously, it doesn't get any better than that!

5. The Knowledgeable Staff There is nothing worse than having to retell a nurse your child's history at every change of shift. At JHH, I don't know how they do it, but no one asks questions unless they need to clarify something. Every person who enters the room, knows your child's case and history, and wastes no time with small talk.

4. Nurses' Scheduling JHH does something with their nurses' schedules that I've never seen before. They keep a record of the nurses who have been assigned to your child. And (if possible) that nurse is assigned to your child whenever she is on shift. During Henry's ten day stay, he only had FIVE different nurses. And that was including the three days he spent in the PICU, on a different floor! There was no having to get reacquainted, and Henry was comfortable, because he got to know all of his nurses. They keep the records, so when Henry is admitted for surgery in June, he will have those same nurses, provided that they still work there. When Jack was at York, he had 8 different nurses in three days, and two of them forgot his name.

3. The IV Specialists JHH has a one and done policy with the administration of IVs. If the nurse tries to run the line once and can't get it, she stops and calls an IV Specialist. No jabbing and jabbing and jabbing until the vein is found. Having kids with blood clotting issues and small, rolling veins, I LOVE the IV Specialist!!

2. The Doctors The Physicians at JHH are among the most amazing, caring, intelligent and talented people I have ever known. 'Nuff said.

And the Number One reason why I love Johns Hopkins Hospital....

1. The Nurses You will find none better, anywhere. It's been almost three years and countless appointments, procedures, surgeries and overnight stays since our first trip to JHH. And I have never met a nurse who didn't perform her duties to the fullest extent. They are guardian angels, sent directly from Heaven. I have always been made to feel like they care about my children as much as I do. And that is a beautiful thing.

While this list tells you all the wonderful things about JHH, I didn't even scratch the surface or tell you the BEST part: Despite being the best of the best, and despite being almost perfect in every way, even they are aware that there is always room for improvement. Just when I thought that the #1 Hospital in the United States couldn't get any better, it has been announced that a new 205 bed Children's Center Building will open in 2012. I encourage you to check out the website:

www.hopkinschildrens.org/new-hospital.aspx

My children will have a lifetime of health issues. Knowing that they are in the hands of competent health care professionals, in a state of the art facility, brings with it a sense of peace. Johns Hopkins Hospital should set the standard for what health care should be. Every nurse should treat each of her patients like they are the most important. Every doctor should treat each of her patients as she would want to be treated. Every hospital should treat each patient as Johns Hopkins treats it's patients. Everyone deserves to have an exceptional quality of health care.

Once Upon a Time...

2011-03-02T03:21:00.010-05:00

In 1997, I, like many other people, went to see Titanic. I was 18 years old, and thought that it was The. Best. Movie. EVER. Way before Edward and Jacob, there was Jack Dawson. I was struck down by Leo Love, and it was serious. The morning after I saw the movie, I sat in the kitchen with my mom and I told her the movie. Let me clarify: I didn't tell her *about* the movie.  From the opening scene to the closing credits, I replayed the whole movie in my head, and told her (scene by scene) the entire movie. (I have an uncanny ability to practically memorize a film, even the dialogue, the first time I see it - if I like it enough.) We sat at our kitchen table, for what seemed like hours, as I wove the tragic tale of Jack and Rose, in my own words. When I was finished, my mom sat with tears streaming down her cheeks and said, "I must see this movie!"

That afternoon, I waited patiently for my mom to return from the theater. When she got home, her face was dry and there were no tissues in her hand. Confused, I said, "Well?? What did you think? Didn't you absolutely love it??" She replied,

"Meh. It was okay. I liked the way you told it better."

(Blogger's Note: Titanic went on to win ELEVEN Academy Awards. And, according to a movie-goer, I "told it better." Take that, James Cameron. Who's King of the World, now?!)

From that moment on, if my mom wants to see a movie, she usually just waits until I see it, and then asks me to tell her about it. Although, it doesn't always work. A few months ago, I called her and began to tell her about Toy Story 3. I made it through what would have been the first ten minutes of the movie. She became so hysterical; she begged me to stop. I never even got to finish, and she still cried for a week. (Thank God I didn't make it to the end.)

While my mom sees my ability to recap a movie as gift, most see it as a curse. My husband, my family, my friends, and probably even the followers of my blog, would probably point out one specific characteristic when asked to describe me.

They would say that I am extremely long winded.

I love to talk and I love to tell long stories. But I don't see myself as "long winded." I see myself as someone who pays very close attention to detail, and then shares those details. That's why I tell movies so well. I share details when I tell someone about a movie, about my day, or about my experience at the McDonald's drive-thru window. I can take a scenario that lasted five minutes, and turn it into a twenty minute narrative. In my head, I think that if it is important enough to talk about, why not make it as detailed as possible? I appreciate movies. I appreciate my kids. I appreciate my life and everyday experiences. And I want to make sure that everyone else does, too. Maybe it is a narcissistic notion to think that everyone is interested in the same things that I am interested in, but I just can't help myself. Those that love me, understand.

My college roommates became so accustomed to my elaborate tales, that they would say, "Oh, God... is this going to be an 'Anna Story', because we really need to go study!" But they always listened, anyway. Or, at least they pretended that they did.  When my husband gets home from work, and I say, "Guess what happened to me at the Post Office this morning..." he takes a deep breath and says, "Wait a minute.  Let me pee, get a drink, and sit down, and then you can tell me all about it." I like to think that the people around me appreciate the way that I tell my stories. Sure, it's funny that Henry threw a temper tantrum at the bank. But it's funnier once you find out that there were twelve people in line to witness it, one of which was one of my parent's old friends who I haven't seen in years, and that it was time for the teller to take a break. These things are important.

Don't get me wrong.  I know I have a problem. I do tell long stories. And I write long blog posts. And I usually have a hard time fitting my Facebook status into the limited space provided. So, I guess maybe I am long winded. But I promise, despite all of this, I am also a very good listener. Anyone who has ever told me anything can rest assured that I listened to every word that they said. And then I revised it in my head, corrected the poor grammar, and added my own spin, so that when I retold it to someone else later, it sounded much better.

Yeah, I know. I should have probably mentioned that I am also terrible at keeping secrets.

But that's another story...

Living in Holland...

2011-02-19T09:23:00.013-05:00

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...

2011-02-07T16:53:00.007-05:00

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...

2011-02-01T12:05:00.001-05:00

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)....

2011-01-18T15:40:00.004-05:00

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...

2011-01-14T10:56:00.004-05:00

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. God 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, 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...

2010-12-02T09:51:00.001-05:00

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, at home and 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...

2010-11-22T13:28:00.002-05:00

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, Jack and Henry, are doing well.  Jack 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 Jack 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.
              In October, we learned that we are expecting a new addition to our family, in June. We also learned that losing a round of Vatican Roulette should not be considered "losing." My pregnancy is progressing well. My morning sickness is becoming under control. My mood swings are manageable.  Michael has gotten better about arriving home on time, with the Subway subs that I so desperately crave. It took him awhile, but once he realized how important it is, that I eat when I'm hungry, we started getting along much better. His bruises are barely visible anymore.
              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

And then there were five...

2010-11-04T12:31:00.002-04:00

So, it seems that as the Corbin family is "coasting in on fumes," we are going to need another car seat.

That's right, I am due in June.

This pregnancy was not exactly planned. But, the thought of having another little one in the house to pinch, squeeze, and snuggle, has Michael and I positively ecstatic. Of course, since I have already introduced you to my elephant, you may think that we have a lot of concerns with this pregnancy. You may think that we are apprehensive to bring another child into the world who may have Noonan Syndrome. You may think that we are scared that the baby will inherit my mutant genes.

And you would be very, very wrong.

When I studied Deaf Education in college, I read about a lesbian couple, who were both deaf, and wanted to conceive. They specifically chose a deaf sperm donor, to better their chances of their child being born deaf. I was appalled, when I heard this story. I thought that the women should be criminally charged, for forcing their child to have a disability. Twelve years later, the ethics behind their choice still concern me, but I can't help but have a deeper understanding of their decision. To them, deafness wasn't a disability, it was their way of life. They lived normal, functioning lives, and knew they would be able to give their child the same, despite any adversities. I have done the same for my children, because I do not see our condition as a disability.

That does not mean that I would ever plan to give my child Noonan Syndrome. It also does not mean that I hope that this child will have Noonan Syndrome. It does mean, that I would not let my Noonan Syndrome prevent me from conceiving again. We are aware of the risks. There is a 50% chance that this baby will have NS, just like his mother and brothers. There is a 50% chance that this baby will have a heart defect, like his brothers. There is a 50% chance that this baby will have blood clotting disorders, just like his brothers. There is a 50% chance that this baby will have numerous health issues, related to NS, just like his brothers.

But this baby also has a 100% chance of being absolutely loved and adored, just like his brothers.

This child that I am carrying is a very lucky child. If he is born without NS, he will learn patience and understanding, living in a home with a mother and brothers, with health issues. If he is born with Noonan Syndrome, he will be born into a home with an understanding of his condition. He will already have the best doctors in the country, looking over him. And, he will never ever feel alone.

Every parent dreams of having healthy children. My happiness is not contingent upon my children being healthy. Regardless of their issues, my boys are very happy, and full of more life than any other children I have ever seen.

I am thrilled to add another child to our family. And despite what any blood test will tell us, I know he will be nothing less than perfect, just like his brothers.

"Behold, children are a gift from the Lord, they are a reward from Him." (Psalms 127:3)

Letter to the Editor...

2010-10-11T10:30:00.001-04:00

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, 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, fully. 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)...

2010-10-04T05:28:00.002-04:00

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 you 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." Plus, everyone knows you have to speak slower to Cashiers, since all they know how to do, is push buttons.

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, 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 Electronics, 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 Butterscotch 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...

2010-09-23T12:03:00.007-04:00

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 blood clotting problems 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...

2010-09-22T19:36:00.000-04:00

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 step dad'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, who 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 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...

2010-08-05T03:23:00.001-04:00

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 highly demanded, that I barely get to both of my venues on time.

Fortunately, for me, they 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."

Love and Gore...

2010-07-29T03:32:00.003-04:00

A little late in the game, and with much resistance, I have jumped on the Twilight bandwagon. I am reading each book in the series, and following it immediately with the corresponding movie. While watching New Moon tonight I became as giddy as a schoolgirl when Jacob Black, sensing Bella was in danger, jumped over the railing of his porch, took a flying leap into the air, and turned into a werewolf before hitting the ground.

It was so hot.

My husband was watching with me. My husband. My love. My soul mate. I sighed, knowing that he will never do what Jacob did. I don't mean I'm upset that he'll never turn into a werewolf, that's ridiculous. I mean, that I don't think that Michael could gracefully hop over any railing, to come to my rescue. Ever. If a pack of wolves cornered me, outside of our house, he would probably hide inside, call 911, and cross his fingers. And in the event that he HAD to come outside, he would still ignore the railing shortcut, and walk gingerly down the steps, being cautious enough to not stub his toe, or snag his flip flop.

There was a time, when vampires and werewolves were the main characters in horror stories. Now, they are the main characters in love stories. These creatures have become representatives of romance, and of true love.

At first, I didn't get the appeal of the Twilight Saga. Now that I have given it a chance, I am obsessed. And I totally get it.

The franchise makes vampires and werewolves become the sexy heroes.

The entire concept is genius. No one cares about romantic comedies, anymore, because they are "real" people doing unrealistic things. Men do not, ever, interrupt weddings to steal the bride away from the groom. A man wouldn't stand, in the pouring rain, embracing his lover, oblivious to the weather. Men don't travel miles and miles to profess their love to someone they just met. Stephanie Meyer, the author of the Twilight series, has done the perfect thing. Since men will never live up to our romantic expectations, she has given us something that will: the supernatural. She has made every tween, teen, middle-aged, and elderly woman in the world who have read her books, stop wishing for Prince Charming, and start yearning for Dracula. She made unrealistic, romantic dialogue acceptable, because the creatures speaking the words aren't real in the first place.

Vampires aren't real.

That's why it seems totally plausible that a vampire would utter the words,

"Bella, you give me everything just by breathing."

If I heard Hugh Grant fumble that line, I'd change the channel while gagging. Robert Pattinson says it, with his pale skin and amber eyes, and I swoon.

There is nothing remotely attractive about Robert Pattinson, in my opinion. But, as Edward Cullen, the love struck 109 year old vampire who jumps between his soul mate and a minivan, smashing the van to smithereens, he's a dream come true.

Werewolves aren't real.

That's why it seems plausible that a sixteen year old boy, dressed in nothing but some frayed denim shorts, would jump twenty feet over his lady love's head, and transform into a werewolf in mid-air, to protect her.

My friend, Chrissy, says that Taylor Lautner, who plays Jacob, "looks like someone hit him in the face with a frying pan." And she's absolutely right. But, his tan, flexed abdominal muscles, glistening with sweat, while he pleads with Bella to choose him... *sigh*. Those sixteen year old abs, alone, transform me into a dangerous creature myself - a Cougar.

Some women read romance novels, and dream of a pool boy or fireman, who will come sweep them off of their feet. These fantasies leave them drowning in disappointment when searching for their perfect mate. However, women know that they will never find a mate like Edward Cullen or Jacob Black, because not only are they fictitious, they are mythical. There can be no comparison to regular men. Stephanie Meyer has created her characters to be romantic, compassionate, thoughtful, protective... and as far from human as possible. And therein, lies the appeal, and the perfect fantasy.

So, it's okay that my husband is not the bravest of the brave. It's fine that he is not very athletic. And it's completely understandable that his belly is shaped more like a small keg than a six pack. Of course, he's not the "perfect" man.

He is only a mortal, after all.

"Short" Stories...

2010-07-20T11:55:00.003-04:00

Four feet, eleven and three-quarter inches.

Since I was fifteen years old, I have been four feet, eleven and three-quarter inches tall. I have found a few ways around this. My license reads, 5'0", thanks to clever shoe choices, and some overly fluffed hair styles.

I have learned to accept the fact that I am vertically challenged, and I believe, as my mother always taught me, that "Short is beautiful." But, it wasn't always easy. I thought it would fun (and therapeutic), if I would share some amusing (or sad) moments, in the life of one with little height, and how they affected me.

In Kindergarten, I came home from school, everyday, with wet pants. I had been potty trained, since I was two, so my parents were concerned. After some interrogation, I admitted that the bathroom door was too heavy. I was too small and weak, and could not open the door. I was also too shy and too embarrassed, to tell the teacher. So, I peed in my pants. Everyday. It was finally decided, after a meeting with the school, that when the designated teacher would take the children, who were in Special Education, to the bathroom, they would take me, as well. I still remember, that the Special Education van would arrive a half an hour after school started, and it would "beep." Upon hearing the beeping, through the window, the other children, in the class, who were cruel, would giggle, because they knew that Jenny, the little girl with braces on her legs, would be entering the classroom, soon. I never giggled. I smiled a smile of relief. With that beeping, I knew I would get to go to the bathroom. Besides, I loved Jenny. She was just like me, and couldn't open the bathroom door, either. She was also very nice to me, and ended up becoming my friend.

Being small, taught me tolerance.

I entered First Grade, in a new school, in a new state, with no kind Kindergarten teacher, and no Jenny. My parents, again, became concerned when I began arriving home, with cuts and bruises, everyday. I explained that the second graders loved to play "House," and because I was so tiny, I had to be their "baby," and they carried me around the playground, at recess. Only these second graders liked to drop me, when their arms got tired. My parents told me, that I was nobody's baby, but theirs. They told me to go to school, and and tell the second graders not to touch me, and if they did, to tell the nearest teacher. I marched to school, and told the only "friends" that I had, that I did not want to play with them anymore. It resulted in many lonely days on the playground, but I didn't care. My bruises healed.

Being small, taught me to stand up for myself.

After two years of unsatisfactory supervision at public schools, my parents decided to transfer me to Catholic school. My favorite way to participate in the Mass, was to lector - to read the readings for the Mass, on the altar. Of course, I always had to request that a stool be placed at the pulpit for me. My parents told me, "You are further away from the microphone than everyone else. Be sure to read in a loud, clear voice, so that the people in the back can hear." Lectoring developed into a love of Public Speaking, leading to success, and national rankings for me, on my high school and college speech teams. As an adult, I am still a lector at St. Vincent de Paul Church, and every other Sunday, I loudly and clearly proclaim the Word of God. And now, if I wear high heels, I don't *always* need a stool. I love when my fellow parishioners say, "How does such a little girl, have such a big voice?"

Being small, taught me to compensate for my size, with my other strengths.

Looking back, I wouldn't want to be any taller. Sure, there were bullies, who called me names, but they never hurt my feelings. I had so much positive reinforcement at home, that nothing anyone else said, mattered. I learned to see myself as "big" when I looked in the mirror. And I didn't care what anyone else saw. And, of course, I am teaching my boys the same principles, that I have learned.

I took Jackson, who's four, to the pediatrician a few months ago. There was an 18 month old boy in the waiting room, who was a head taller than Jack. When the diapered bully, gnawing on his binky, took a toy out of Jack's hands, Jack shrugged, and picked up another. He looked UP at the child and said, "It's okay, you take it. I know that you're just a little baby, who doesn't know any better."

I smiled behind my magazine. The cycle continues...

A place for everything...

2010-07-17T08:38:00.003-04:00

Not long ago, I was chatting with my mom on the phone, having my morning cup of Coca-Cola. I was looking pretty stunning, that particular morning, wearing a pair of Betty Boop pajama pants that were purchased at a yard sale, one of Michael's old, grey fraternity t-shirts, from his Penn State days, and my dirty hair was pulled up on top of my head in a loose, floppy bun. My mom said to me,

"I'm so happy for you, for getting just what you wanted out of life. You are right where you've always wanted to be."

I stepped over the boys, who were laying on the floor, fighting over an action figure (one of twelve thousand that were scattered all over the living room), to peek at a mirror.

I giggled.

"Mom, please tell me you are being sarcastic."

She began to explain. I was a bit socially awkward, growing up. Any school dance I ever attended, I attended, because my parents forced me to go. I was a bookworm, and a home body. I was also a late bloomer, who was still playing with Barbies, when my friends were getting their first boyfriends. Because of my late development, late puberty, and small size, my parents always wondered if I would be able to have children. Although, they'll never admit it, I am sure that they also wondered if I'd ever get a boyfriend, much less a husband.

Lo, and behold, I came out of my shell, and met Michael. First came love, then came marriage, then came... well, you know the rest. I am an ambitious, competitive person. I have many years left, to get the most of life, and to settle myself into a successful career. And I know that good things are in store for me, because I have a desire to achieve. But, first things first. I have done what everyone doubted I would ever do. I have a loving husband. I have two beautiful boys. I have a home and a family, and that is my primary focus, right now. My mom was right. I am a very lucky girl.

This past week, for the first time, since the boys were born, Michael had to go away on business. At first, the boys and I celebrated, having a break from the family neat freak, by leaving dishes on the table, letting crumbs fall to the floor, and not putting DVDs directly back into their cases. But, by the third day, I began to miss having someone to share a smile with, when Henry told a new knock-knock joke, or when Jack said something only a forty year old woman would say. Thursday night, I had trouble sleeping. Why was it so quiet? Why could I hear every creak that the house made? Then I realized, that for six years, Michael has been in bed next to me, sleeping, breathing, snoring. I've gotten used to him being... there. That's not to say that half of the time, I want to whack him with a frying pan, when he's not looking. But the other half of the time, our life, as a family, is awesome, and it makes me thrilled, to know that it's "forever."

Yesterday afternoon, excited to see my husband, I took a shower, shaved my legs, applied some makeup, and even flat ironed my hair. I put on a cute sundress, and the boys and I headed to the airport to pick up Michael. We had a joyful reunion, at the airport, and then, the four of us came home. It was nice to all be together, again. Through the baby monitor, I listened to Michael read to our giggling boys, putting them to bed, while I went upstairs to change. I washed the makeup off of my face, and took off the cute sundress. I put on my Betty Boop pajama pants, and Michael's old, grey ATO shirt. I twisted my hair up to it's comfortable position on top of my head, and went downstairs to join Michael on the couch. We shared some milk and cookies, and started watching some DVR'd, "Attack of the Show." As Michael drifted off to sleep, halfway through the episode, and began to snore, I smiled, and leaned my head on his shoulder.

Everything is as it should be, and just the way I want it.

Spinning Out of Control...

2010-07-08T11:03:00.004-04:00

Based on my own parents, I always viewed parenthood as primarily a position of authority. I always knew that I wanted children. Anyone who knows me, will tell you that I am a bossy, control freak. Naturally, motherhood would be a perfect fit. I imagined having a tribe of miniature Annas, who would share my balance of liberalism and Catholicism, love Motown, and have "Gone With the Wind" memorized by the age of five.

Boy, was I wrong.

There has never been a greater feeling, of loss of control, than in parenthood. It starts from the beginning. There is no planning in parenthood. My husband and I wanted to wait two years after getting married, to have a baby. I saw a plus sign, on a stick, five months after the wedding. During my first trimester, I wanted to eat a strict diet of fruits and vegetables, only to find out that everything except Taco Bell made me vomit. And then, there's "The Birth Plan." To this day, Michael and I giggle, every time we hear a first timer talk about her Birth Plan. Let me share with you my idea of a realistic Birth Plan:
1. Get drugs
2. Sleep and/or cry
3. Get more drugs
4. Get the baby out as quickly as possible
There was nothing to prepare me for how much labor hurts. If my husband would have even mentioned an Enya CD or a focal point, I would have kicked him in the face. I was thrilled when I found out that my second child would be a scheduled c-section. "Finally," I thought, "I can be in charge of my delivery." Then my water broke five weeks early. And the plans we had for pre-conception college funds for our kids??
HAHAHAHHAHAHAHA!!!!

As children grow, the lack of control exhibited is more of an annoyance than anything. I loved "The Muppet Movie," as a child. Before my children were born, I planned on showing it to them one day, because I knew they would love it, and we'd have a "moment." A few months ago, I sat the boys down, and began the first official viewing of "The Muppet Movie." Fifteen minutes in, they lost interest, stopped watching, and went to their playroom, leaving me alone with Kermit and the gang. I resisted the urge to duct tape them to the couch, and shout, "You WILL watch this with me! It's FUNNY! We're having FUN!"

One of the biggest surprises of parenthood, is the ability to love someone so much. It's different than any other kind of love. Sure, I love my husband, but I'd have to think about it, before I'd jump in front of a truck for him. (I mean, who would take care of the kids??) For my sons, I'd jump in front of a truck to prevent them from getting a paper cut. That kind of love is a scary, scary thing.

As hard as it is, I can handle the boys not sharing my love of all things Muppet, and I can cope with the fact that I gave birth to boys, who will probably never play Barbies with me. Those are little things. But, the feeling of helplessness that sometimes occurs, as a result of no control, is downright painful. As a bossy, control freak, I was not ready at all for the true trenches of parenthood. Labor was nothing compared to watching doctors repeatedly stick your toddler, searching for a vein, while he tearfully begs you to make them stop. Waking up to your water breaking before your planned delivery date, is much better than your baby waking from a nap, with a diaper filled with blood. College funds are the least of your worries, when you are scrambling to put together enough money to prepay your copay, so your child can have a surgery, that he needs. Watching children refuse to play with your son, because he's "too little," makes you want to duct tape the little brats to the floor, and MAKE them be his friends.

Everything in parenthood is out of your control. You will never be prepared. You will always be surprised. Honestly, that's what makes being a parent so wonderful. There is no way to ever maintain control, so you just do the best that that you can. And, sometimes, that means that as everything around you spins, in a million different directions, just hang on... and try to not get dizzy.

Foam hats and playing catch...

2010-06-27T02:21:00.009-04:00

There are some movie quotations that almost everyone recognizes.

"Frankly, my dear, I don't give a d@%*."
"Go ahead, make my day."
"Toga! Toga! Toga!"

In my inner circle (meaning my mom, my sister, and my husband), we like to use obscure movie quotations and references in everyday conversation, to make valid points, and to express ourselves clearly. As a result, we sometimes communicate using sentences that probably wouldn't make sense to anyone else. Unless, of course, that "anyone else" was a movie buff.

To demonstrate what I am talking about, (if I haven't lost you, already), I've decided to share my top five favorite quotations, used by my family, and how we relate them to everyday life.

"And that's when the big bucks start rollin' in!" ~ Coming to America

Maurice (Louie Anderson) explains the fast food hierarchy to new employee, Hakeem (Eddie Murphy). He says, "Hey, I started out mopping floors... but now I'm washing lettuce. Soon, I will be on fries, and then the grill. And pretty soon, I'll make Assistant Manager, and that's when the big bucks start rollin' in!"

We usually use this one, sarcastically, when we are discussing ways to improve our financial standing, by taking baby steps.

EXAMPLE: "Don't worry. Soon it will be September, and I can sell the boys' old winter things on ebay... and that's when the big bucks start rolling in!"

"I think I'll start a paper route, right now." ~ Pee-Wee's Big Adventure

This is the line, announced by Pee-Wee Herman (dressed as a nun), who is about to steal his beloved bike, back, from a movie set. He thinks by saying that he'll start a paper route, he can just ride off without any trouble.

This one we use as a reference when someone does something underhanded, or tries to avoid an issue, thinking no one will notice.

EXAMPLE: "Did Henry ask to take a snack to bed?"
"Nope. He just started a paper route, and took the cookies, into the room!"

"Those little lights aren't twinkling, Clark." ~ Christmas Vacation

I love when Clark W. Griswold's father-in-law, Art, points out this minor detail, after Clark puts on the most magnificent Christmas light display in the history of the world.

This is used when someone is being nitpicky.

EXAMPLE: "When you unloaded the dishwasher, you forgot this fork."
"Oh, thanks. And I bet the little lights aren't twinkling, either!"

"It's not my fault that you wouldn't play catch with your father!" ~ Field of Dreams

Terrence Mann (James Earl Jones) exclaims this line, when Ray (Kevin Costner) tells him that reading Mann's book caused Ray to boycott playing baseball with his dad.

We like to use this, when someone is being used as a scapegoat.

EXAMPLE: "Great, Mom, you called, to chat, and I didn't get any laundry done."
"Oh, please. It's not my fault that you wouldn't play catch with your father!"

Foam Hats ~ Dumb and Dumber

Okay, so this isn't a quotation. "Foam hats" refers to the scene in Dumb and Dumber, when Lloyd goes to the store, with the last of the duo's money. After being told to only buy necessities, it shows him walking, with a bag of goodies, wearing a giant, foam, cowboy hat.

This is used, exclusively, between my husband and I, whenever he goes to the store, and strays from both the budget, and my list.

EXAMPLE: "Michael, why did you buy Reese's cups and a Mad Magazine??"
"Don't be mad! I only bought a few foam hats!!"

Many times, we have said these things, in public, only to see people give each other questioning looks, like, "Isn't she a little old for a paper route?" "They don't sell foam hats here!" or "What does cooking dinner have to do with playing catch?" But, that's just us, my quirky family. I understand them, and they understand me. I hope that you are enjoying reading about them. I'll try to keep you entertained. I may be just a disgruntled mom, who started a blog, but I am hoping to get a lot of followers, and then maybe even a book deal.

'Cause that's when the big bucks start rollin' in!

It takes a village...

2010-06-21T10:47:00.004-04:00

Once upon a time, a little boy was born. He was a happy boy. He giggled and cooed. He was a bit precocious. He liked to run and to climb and to explore. He gave his mom hugs and promised to buy her "coffee drinks" and "pretty dresses," when he grew up. He shared cookies with his granddad, who lived with his family, and watched "Old Yeller," over and over again. He was a happy boy.

The little boy grew. He went to school, and he made friends. He became an altar boy, a job that he took very seriously. He played Little League, and his coaches and teammates called him "Smiles," for obvious reasons. He tried to find ways to embarrass his teenage sister, as little brothers do. He became an idol and role model to his little sister, as big brothers do. He liked to make his sisters laugh, doing celebrity impressions, and reenacting his favorite parts of movies. His family swore that he would grow up to be a comedian. He was a happy boy.

Then, one day, the boy started high school. He made the golf team, as a Freshman, and that made him very happy. But, then, his grades began to slip, and he was no longer able to participate on the golf team. He stopped making his family laugh, he stopped smiling, and he became withdrawn and angry. He was a sad boy.

When his older sister came home from college, one Thanksgiving, she discovered, through a friend, that her brother had been targeted by bullies. Apparently, when the boy made the golf team, he took the position previously held by a Junior. This Junior, and a few of his friends, cornered the boy daily. They had been humiliating and torturing the boy since the beginning of the school year. When the abuse resulted in the low grades that cost the boy his position on the golf team, they turned to psychological warfare. They called him "stupid," and "worthless." He was a very sad boy.

When his parents began alerting the authorities, the school, and their Church about what was happening, life changed dramatically. One bully was expelled, but the others were given a slap on the wrist. When the boy's father asked the principal why the other bullies were not punished as severely, she replied, "Well, their parents are upstanding members of our community, and their support is valuable to Delone Catholic High School."

The boy changed schools.

The boy's Parish priest was confronted, about the church's intramural basketball team, that the boy played on, because one of the bullies was also on the team. The priest, like the principal, referred to the bully's family as an influential benefactor to the Parish.

The boy and his family stopped going to Church.

Friends that the boy's family had had for years, stopped visiting. They were supporters of the Church and the school, and did not understand why the boy's family needed to rock the boat. Instead of supporting the boy's bravery, members of the community began condemn him, for challenging the perfect world, in which they all lived. The boy's parents began to argue. They argued over how everything could have been prevented. They argued over treatment of the boy.

The boy's parents divorced.

When the boy graduated high school, he moved away. His visits home became more and more sparse, and then they stopped all together. He said that his home was no longer his home. He said that the town he had grown up in, was never supportive of him. Everything was a reminder of his past.

It has been said, that it takes a village to raise a child. While that may be true, it can also be said that it can take a village to destroy a child. In fact, a village has enough power to destroy a family.

It has been a little over ten years, since the episodes of abuse that my brother endured at Delone Catholic High School. I don't think that any of those, who are familiar with what happened, know of the lasting effects it had on our family. My brother was a victim, yet he was never treated as such. The loyalties that lie, in our area, to the town's only Catholic high school, are disturbing. They are loyalties that are stronger than morals, friendships, and the love for a child. Our family crumbled, yet the school, and the community, still stand, proudly, full of hypocrisy and greed.

Saturday was my brothers birthday. He turned 26 years old. I haven't seen him in over two years. His nephews are growing up without him. I miss him everyday. He was such a happy boy.

The Great Outdoors....

2010-06-12T14:03:00.006-04:00

You would never call me "one with nature." I am not a fan of the outdoors. I don't mean the "outside." Give me the sun, some sand, and the ocean, any day. I mean the "outdoors"... as in, tall grass, lots of trees, creepy crawlies, and wild animals that require traps to be set.

I will never own a cabin.

I will never live somewhere, where a view of the road is blocked by forty trees.

You will never, ever, hear me say, "Yeah, Michael and I are packing up our sleeping bags, and taking the boys camping this weekend."

Fortunately, I married a man, who shares my opinions. If he can't plug in the charger to his Nintendo DS, and I can't plug in my hair dryer, we aren't going.

I am writing this, while on our summer vacation, with my husband, my boys, my mom, and my stepdad, Jim. My mom and Jim treated us to two weeks, in a lake house, at Deep Creek Lake. This is the third time we've been to the lake, and we love it. The house, this year, is gorgeous - air conditioning, floor to ceiling windows, remote control fireplace, dishwasher, washer/dryer, an outdoor hot tub, and two bathrooms. My husband and I were discussing, the other day, how Deep Creek Lake is as close as we get to "roughing it." And by roughing it, I mean, we have to walk in grass that hits just above our ankles to get to the dock, and we have to wear swim shoes, because the bottom of the lake is muddy, and has rocks in it.

We are not snobs; we are too poor to be snobs. We just think that God gave us mattresses, air conditioning, and running water, for a reason, and we should take advantage of it.

That's not to say, that I am an anti-environmentalist. I love our planet, and I do what I can to save it. I recycle, I turn the water off while I brush my teeth, and I do... other stuff. I appreciate nature, even if I don't like being in it.

Last night, after my mom and Jim went to bed, and the boys fell asleep, Michael and I took the baby monitor, and some iced tea, and headed out to the hot tub. As the warm bubbles surrounded us, and the multiple jets massaged our backs, we sat back and observed the outdoors, in all it's glory. The cool wind blowing through our hair, the chirping of the evening bugs, the smell of the lake a few feet away, and the clear sky, lit up with stars, was all quite breathtaking.

"Wow," Michael said, "This is just gorgeous."

I took a deep relaxing breath, closed my eyes, and agreed.

About three minutes later, I opened my eyes.

"Michael, I'm kind of hot. Let's go back in to the air conditioning."

"Oh, good," he said, clearing the side of the hot tub in one leap, to the deck. "I was hoping you'd say something. Let's go watch some T.V."

*sigh* We're soulmates, I tell ya.

Time to meet my elephant...

2010-06-04T09:42:00.003-04:00

It's been said that when there is an elephant in the room, you should introduce it. For those of you reading my blog, you know that I have mentioned Noonan Syndrome and I am sure many of you have no idea what I am talking about. Since I wanted you to get to know us first, I have chosen to delay telling our story. But, I think it's time.

When Henry was six weeks old, we found out that he has Pulmonary Valvular Stenosis (PVS). We came home from the Cardiologist and as I tried to explain to my mom what was wrong with her grandson, I realized that I couldn't. When the doctor spoke with Michael and I, all I heard was, "Congenital heart defect," and after that it just seemed like static in my ears. So, I turned to my friend, Google, for assistance. As I attempted to sort through reliable medical websites, I noticed, that often "Noonan Syndrome," was listed as a factor regarding PVS. Curiosity got the best of me, and I clicked a link, since I had never heard of Noonan Syndrome. What I began to read was a bit overwhelming.

- Delayed puberty (I got my period at 17, and went from a B to a C cup, naturally, at 21.)
- Short stature (I'm barely 5'.)
- Large, widely spaced eyes (Umm... have you met me?)

As the list went on and as I read it aloud, I began to have an odd feeling in my stomach. When I finished, my mom and I spoke at the same time.
Mom: "That sounds like you!"
Me: "This sounds like me!"

I became convinced that I had this genetic condition, and had passed it on to Henry, and possibly to Jack. My husband was skeptical and tried to tell me that I was crazy. But, after I made him read the information that I had printed, even he became nervous. In August of 2008, the boys had a joint doctor's visit - Jack for his three year check-up and Henry for his six month. It was at that visit that we found out that Jackson had dropped off of the height chart. I brought up Noonan's to the pediatrician. I'll never forget the look on her face. It wasn't doubt. It was as if she, too, had a moment of clarity. She set up the blood work for the boys. Genetic testing takes five weeks. It was a L-O-N-G five weeks. The call finally came in, one September morning.

"Mrs. Corbin, there was a mix up at the lab. You're going to have to bring the boys back in, to be retested."

Nice.

Fast forward ANOTHER five weeks. I still remember it; I was in the kitchen making fettuccine alfredo. Michael was on his way home from work and it was almost 6:00pm. The phone rang.

"Mrs. Corbin, how are you? Sorry to call at this time. Are you in the middle of dinner? Oh, what are you making? That sounds good!"

(Let me give you all a bit of information that I have learned from experience. When a doctor calls you and makes small talk, it's bad news. Good news, they'll tell you right away. Bad news, they like to butter you up.)

On that night, October 23, 2008, we learned that Jackson and Henry, both, have a mutation in the PTPN11 gene - Noonan Syndrome.

So... yeah, thank God for Google.

I went for my blood work the next day. Five weeks later, was the Monday after Thanksgiving, and the doctor called.

"Mrs. Corbin, how was your holiday? Did you cook, or did you visit relatives?"

Uh-oh.

That was probably the weirdest phone call I had ever received. It's not every day that you find out at age 30, that you have a genetic condition. A genetic condition that is defined by subnormal development and abnormal facial features. I hung up and spent forty-five minutes staring at myself in the mirror, because all of a sudden, I looked like a different person. Geez, after that phone call, I became a different person. This was all supposed to be a hunch - a crazy Internet hunch. And now my boys and myself had a medical condition that we didn't know anything about. I called my mom.

"Mom, I have the gene mutation, too. I have Noonan's. It was me that gave it to the boys. All three of us have to go to a geneticist at Johns Hopkins, as soon as possible, to be evaluated. I ..."

"--Anna," My mom interrupted, sobbing. "I need to get off the phone for a minute. I just found out that my child has Noonan's and this is a little hard for me, too."

That moment was when it all became very real. This was really happening and it was going to change our lives.

After going to the geneticist, we got a better handle of what we are dealing with. More testing needed to be done, because Noonan's affects the development of everything - including organs. As it turns out, the boys have numerous health issues, as a result of NS. Some that could potentially be life threatening and others that are not as serious.

Emotionally, it was difficult at first. It was hard enough, learning at 30 that I've had a genetic condition since birth. But, the fact that I had passed it on to my children? That was the worst feeling in the world. I had a rough couple of months.

I felt sad, that this was happening to our family.

I felt angry, at all of the kids on the playground when I was a child, who had ever said, "Hey, Shorty - what's wrong with you? Why are you so short? Are you a midget?"

I felt guilty, because although I have the same condition, I have had a relatively healthy life and yet my boys have so many problems.

Slowly, as I saw how brave my boys are and how they just eased into the lifestyle of children with NS, my bad feelings faded. Noonan Syndrome is something we have, not who we are. I have not had all of the required testing, to determine if I have any of the health issues relating to Noonan's. I have chosen to focus on the boys, first. They have a team of doctors at Johns Hopkins, from Cardiology, Hematology, Genetics, and Endocrinology. They are in good hands. We are learning how to deal with all the issues that they have and all of the issues that they may develop.

I am much more at peace with our situation. God doesn't give you anything that you can't handle. (He must think I am something else!) It's been a year and a half since our diagnosis. I tease my husband, because he is the minority in our house. I have a spontaneous mutation of the PTPN11 gene and had a 50% chance of passing it on to my children. Instead, both of my children inherited it. With Michael's love and my mom's guidance, I have stopped looking at myself as "damaged goods" - which is what I called myself for awhile. I know that these things happen, and they happen for a reason. My boys are awesome. I'm not sure if they know that they have NS or not, but they definitely know that they go to the doctor a lot. And it doesn't even faze them. The Noonan Syndrome Support Group has been wonderful. I can't even begin to describe the comfort of knowing that you are not alone.

My husband and I discovered something, after contacting other families affected by Noonan's, seeing photos of their children, and looking at our boys. Each case of NS is different, but thing is clear: Noonan Syndrome makes for some beautiful babies! Seriously, BEAUTIFUL babies. We can't believe that medical journals would say that these children have "abnormal facial features." In fact, we often wonder, if our boys didn't have Noonan's would they have been as cute??

So, that is our elephant. I am the mother in a family of four, and three of us have a rare genetic condition. But, I am okay and my boys are okay. If and when the day comes, when one of us is not okay, we will be prepared to deal with it. For now, my job is to keep my boys as happy and as healthy as possible. And to make sure they never feel insecure or "different." Fortunately for them, they will always have each other, and myself, to turn to, as they deal with the many issues that this condition presents. And in our house, at least, "different" happens to be the norm!

We have a ritual that we perform every morning. The boys get dressed, and then look in the mirror, and I say, "Well, how do you look?" Jackson says, "Handsome!" and Henry says, "Pretty!" and I say, "Absolutely." As I watch them walk, confidently, out of their room, I know that they believe what they have said. They believe it, because it's true. They are two pretty handsome boys, and they are amazing.

Wishing for Ward...

2010-06-01T20:45:00.011-04:00

When I started dating my husband, I made myself clear: I did not need special treatment as a woman. I was strong-willed, my own person, and I could open my own doors. I wish I could go back to that independent twenty-one year old girl that I was, and smack her upside her head.

Little did I know, that there would come a day when I would learn that it is a little difficult to open my own door while eight months pregnant, with a two year old on my hip, and my arms filled with a diaper bag, a boobah, and a cup of Cheerios. I also didn't know that when put in that situation, the sight of my husband strolling leisurely to the car (empty handed) would have me teetering on the edge of divorce.

I've said it before, and I'll say it again, women's lib is awesome, but it has taken all of the enjoyment out of the role of a stay at home mom ("SAHM," to my fellow Facebookers and Bloggers).

Don't get me wrong, I still see myself as an equal. But, what is "equal?" Women are expected to be superheroes. Back when it was acceptable, and common, to stay home, and raise your own children, THAT was your job. Now that SAHMs are the minority, it's as if we have to work overtime to prove ourselves.

June Cleaver can bite me.

Of course, she could perform all of her duties wearing pearls, with perfectly coiffed hair, in high heels. All June had to do was cook, clean, and occasionally remove Beaver's hand from a jar. Ward did the heavy work. I cook, clean, take care of the boys, refinish furniture, repair appliances, paint baseboards, fix doorknobs, do yard work, and handle our household finances. And then, I feel guilty because I only have time to shave my legs a few times a month.

In my husband's defense, he's not useless (necessarily). I choose to over work myself. I feel guilty that the burden of supporting our family lies with him. We live in a society where men and women are supposed to, both, fulfill the financial responsibilities of a household. Our society makes me feel as though I need to overcompensate, by taking on many jobs of the home. I find it interesting, that now that the role of full time mom has become so much more difficult, there are less moms doing it. Things were easy for June. She could make friends, because all of the women in her neighborhood were SAHMs, too. I have trouble finding peer interaction for myself or my sons, because I know of few mothers who are home during the day, like I am. June was respected in her community, just because she was a devoted wife and a good mother. When I go to parties, and state my "profession," the other moms give me a look of pity, and say, "Oh, well, the boys will be in school before you know it, and you can go back to work." Ummm.... I really don't want to rush my children's childhoods, but, thanks. Even running errands was simpler in the Fifties. All June had to do, was throw Wally and the Beav into the back of the family's Ford Fairlane, and be on their way. When I take my boys to the grocery store, I have to budget a half hour of time, just to get them in and out of their state required car seats.

I do love my job. I love that I will remember every moment of my boys' lives. I guess I just long for a simpler time, when it was good enough for a woman to "just" be a wife and mother. I wish that a successful day for me, would be to have the dishes done, the living room vacuumed, and dinner on the table, all while looking fabulous. So, I suppose my animosity toward Mrs. Cleaver stems from the fact that I envy her. I may have once been a feminist, but now I guess, I am just a mom, who wants to be June Cleaver... well, except for the heels. I hate high heels.

Generic Wisdom....

2010-05-24T14:05:00.008-04:00

Today, I think I'll try something new, and share some words of wisdom that I have learned, living these last few years on a tight budget. Before I quit working, we lived in a name brand world. When we started living on one income, and the boys' medical bills began pouring in, we learned that we needed to make some changes. In order to adapt to our new, frugal lifestyle, we began experimenting with generic products. We quickly learned, that while there are some things that are worth the savings, there are other things that are definitely NOT worth the sacrifice. There are good generic products, and bad generic products. Please, use my knowledge, based on years of trial and error, and save yourself some trouble, in case you ever find yourself in the riches to rags situation, as we did.

THE BEST:
1. Instant Oatmeal: I don't eat oatmeal, but my kids love it. What's even better is that they prefer the generic brands. I haven't figured out the reason, but they really don't like Quaker Oats Instant Oatmeal. Considering that the price difference between generic oatmeal, and Quaker oatmeal, is over $2.00 a box, I'm not complaining.
2. Contact Solution: My husband and I both wear contacts. Once we discovered that a DOUBLE pack of Equate Multipurpose Solution is less than one box of B & L Multipurpose Solution, we have never looked back. My optometrist told me that B & L is better for your eyes, but I think she's on their payroll.
3. Cleaning Products: As Clint Eastwood said, in Million Dollar Baby, "Bleach is bleach." And I don't know anyone who wants to argue with Clint Eastwood.
4. Candles: Ya'll can keep your Yankee Candles. Dollar Store candles mask the smell of baby poop as well as anything. I don't need to spend $30.00 to make my house smell like Sugar Cookies. I can do that by baking a batch for a couple of dollars.
5. Chili: You have heard it here first - GREAT VALUE (Walmart) CHILI WITH NO BEANS = BEST CHILI EVER!! I am not kidding.... spread this heavenly goodness over your hot dog, and your taste buds will thank me. I've served this at countless cookouts, and my guests always beg me for the recipe. You can even mix it will melted cheese, for an amazing nacho dip. At $1.07 a can, it's as much a treat to your wallet, as it is to your belly!!

THE WORST:
1. Cereal: Generic cereal is just plain awful. If you are unable to afford name brand cereal, perhaps instead of spending money on generic, you could go out to the street, gather some gravel, roll it in sugar, and pour some milk over it. The taste and texture would be about the same. Budget or not, we buy Honeycombs and Cheerios. Sure, the cost is a bit extravagant, but we feel we are saving money by not having to pay dental bills for cracked or broken teeth.
2. Cotton Swabs: If you have never cleaned your ears with generic cotton swabs, I DO NOT recommend trying them. In addition to only a thin layer of cotton protecting your tympanic membrane from the plastic stick, you risk causing permanent damage while using tweezers to remove the remnants of cotton left behind in your ear canal. If you value your hearing, trust me... Q-tips or nothing!
3. Soda: I hate any form of generic "cola." There is no substitute for Coke or Pepsi. Period.
4. Toilet Paper: Using generic toilet paper is like using 20 grit sandpaper on your most sensitive of areas. I have given birth to two children, and have had hernia surgery in the last four years. I have enough trouble using the bathroom. I would face a foreclosure of my home, before I'd give up my Quilted Northern.
5. Toothpaste: I'm not saying that generic toothpaste doesn't work, but it tastes like a mouthful of baking soda. If Crest or Aquafresh is not in your budget, you would be better off really saving money, and using, well, a mouthful of baking soda.

There you have it. A guide to the best and worst generic products. You might agree or disagree, but these are the basic guidelines we follow at the grocery store. I could elaborate further, but it's time for lunch. And, for some reason, I am really in the mood for a chili dog.

This little light of mine...

2010-05-17T16:37:00.006-04:00

Sometimes, all we need is something small, to remind us that we are not alone. Sometimes, the tiniest thing can serve as a sign that everything will be okay. And sometimes, you can find all that you need, literally, in own your backyard.

Last summer, the boys had orchiopexy surgery, at the same time. As usual, the simple procedure required an overnight stay, at Johns Hopkins, to receive IV medicine, that helps their blood to clot. Henry went through surgery, and recovery, with flying colors. Jackson did not fare so well. He was three at the time, and did not like the hospital experience. He hated the IV, the fact that he couldn't get out of the hospital bed, and he just wanted to go home. The next day, when we brought the boys home, my mom came over to give us a hand. (For the record, I do not recommend having your one and three year olds go through surgery at the same time - it's exhausting!)

Within an hour of arriving home, Jackson started vomiting. A call to the pediatrician confirmed that Jackson's anxiety triggered Cyclic Vomiting had returned. The doctor told us to give him Pedialyte, and try to get his spirits up. We tried everything to make him happy, and nothing worked. He was weak, lethargic, and vomiting every half hour. We were all very frustrated, over whelmed, and felt as though we were out of options. I had almost reached my breaking point. After eight hours, we decided that we should probably head to an ER, because dehydration seemed inevitable. At that point, he couldn't even walk himself to the bathroom. My mom went outside, to get some fresh air, and immediately, ran back inside the house. She yelled for us to come outside and to bring Jack. Michael carried out pale, practically lifeless, little boy to the backyard, and what we saw, took our breath away.

Our yard was filled with lightning bugs (fireflies, to Yankees). Actually, "filled" doesn't do it justice. It was as if there was a lightning bug resting on each blade of grass in our lawn. Our tiny yard had more blinking lights than the Rockefeller Center Christmas tree. It was one of the most beautiful sights that I have ever seen.

I should mention that lightning bugs are Jackson's favorite. He watched the extraordinary light show that nature was putting on, behind our house, for a few minutes. Then, he slowly slid out of Michael's arms, and began running to them. As he ran, those beautiful, blinking creatures swarmed his body, and circled his head, like a halo. It wasn't long before the glowing vision was accompanied by the equally gorgeous melody of Jackson's giggles. As he danced among the lightning bugs, we began to see his spirit renewed. When he grew tired, he ran over to me, and said the words that I had longed to hear all day:

"Mommy, I'm hungry."

That was one of the most amazing experiences of my life. To my mom, my husband, and I, it was something that we shared, that can never be duplicated. It was an isolated moment of divine intervention, that will remain with me forever. Sometimes, I need to remind myself of that night... of a time when I felt so helpless, and something so simple, brought me so much peace. I have always been spiritual, and I try to never doubt my faith. Witnessing an obvious sign from above, made me reflect the simple things, and how grateful I am to have so much faith and love in my life.

Spring is, once again, upon us. The other night, I happened to see three or four flickering lights, buzzing around my front door. And with each flash, I said a silent prayer of thanks.

"If I ever go looking for my heart's desire again, I won't look any further than my own backyard. Because, if it isn't there, then I never really lost it to begin with."
- Dorothy Gale, The Wizard of Oz

Nothing wrong with a little competition...

2010-05-11T10:10:00.007-04:00

My parents always taught me to not be a sore loser. The way that they instilled this lesson, was to teach me to always try to win... always. I come from a very competitive family, and we love to win. This has turned me into what my husband calls, "a sore winner." I not only love to win, but I enjoy winning, LOUDLY. I've been losing friends, playing board games, since I was five years old. I'm frequently accused of "taunting" and "being obnoxious."

But, like I always say, if you don't like to lose, you probably shouldn't play games against me.

All of this stems from my mom and dad teaching me, from an early age, how to lose. My dad never threw a game of Candyland in my favor. But, I learned to try. Playing catch for the first time with a real baseball, when I was seven, resulted in the only black eye I have ever had. But, I learned to keep my glove up, when Dad threw his fastball. My youth group had a "Mother's Night" when I was a teenager. We played an ice-breaker game, called, "Birdie on a Perch" ("Musical Chairs" with people). My own mom knocked me to the floor, to reach her partner first. But, I learned to not let ANYONE get in my way. : )

I should clarify that I am by no means, an athlete. I am not the best at sports. (Except Wiffle Ball - I will beat you down at Wiffle Ball!) That doesn't mean that I don't play, when given the chance. That doesn't mean that I don't try my best. And that doesn't mean that I don't exhaust all efforts necessary to win, despite my lack of ability. It's not that I think winning is super important. I just like the feeling that I get when I win. It feels good... it feels really good.

This is why I have such a problem with children's sports. In our area, youth soccer and little league teams don't keep score. That doesn't even make sense to me. Why play a game, if there's no winner at the end? What is that teaching our children? I can tell you what it's NOT teaching them. It's not teaching them to try their best, to achieve a goal. It's not teaching them sportsmanship, because they never have to congratulate, or feel empathy for the other team. Most importantly, it's not teaching them how to lose.

As I said, I am not a sore loser. I know this, because I have lost, many times. I don't like to lose, which is why I try so hard to win. Our children need to be taught how to lose. A child who thinks he can never lose, develops a false sense of entitlement. They don't have the desire achieve, because there's no reason for it. I can't help but think that there is a direct correlation between Generation Y's "slacker" reputation, and the fact that competition (and, therefore, ambition) is no longer taught. Winning isn't everything, but the truth is, life is one big competition. Not everyone gets into college. Not everyone gets the promotion at work. Not everyone can run the beer pong table, winning every game, for four hours straight, the first time she ever plays. *clears throat arrogantly*

In our house, we thrive on competition. We keep a tally of who guesses correctly, during the "Head, Gut, or Groin" segment of "America's Funniest Videos." Jackson does a victory dance, when he beats his dad and I at Yahtzee (fair and square, I might add). My husband and I throw elbows, to get to the sink, first, to brush our teeth at bedtime. My boys will need ambition as they get older. Being different, they will have to deal with bullies. Being small, they will have to struggle to be heard. Being sickly, they will have to fight for their health. It is my job to teach them to compete, to teach them to reach for their goals, and to teach them to get back up and to try again. They will be a force to be reckoned with.

The other night, Henry, my two year old, was randomly pushing buttons on his brother's Nintendo DS. The battery died, and the screen went black. Henry raised his fist triumphantly, smiled, and shouted, "I win!!"

I was so proud.

Just like Mommy...

2010-05-04T19:08:00.010-04:00

As the mother of little boys, modesty and privacy are two things that I rarely experience. If I take my chance to enter the bathroom, alone, it's not long before four little sets of fingers begin reaching through the gap at the bottom of the door.

"Mommy, what are you doing?"
"I'm thirsty."
"Are you pooping?"
"Can I have a cookie?"
"Are you almost done?"

My quiet time finally comes when my husband gets home. While he occupies the kids, I take my nightly bubble bath. I soak in the hot water, with a washcloth over my face, and I forget that there is anyone else in the world.

For a few minutes, at least.

During one of my bubble baths, Jackson tapped impatiently on the door.

"Mommy, I have to go to the potty."

Oh, well, I was about to get out anyway. I pulled the plug, wrapped a towel around myself, and opened the door. Jackson sat on the potty, doing his business, while I tried to, discreetly, get dressed. Jack sighed, dreamily.

"Mommy, I can't wait until I grow up, and get big boobs, like yours."

I stifled a giggle, and told him that I am girl, and he is a boy. Girls get boobs, boys don't.

He was not convinced.

"Well, Daddy's a boy, and he has boobs."

This time, I giggled out loud.

"Oh, Jack, he does not."

"Yes, he does," he replied. "I've seen him get out of the shower. He's really got boobs."

I took great pleasure in relaying the story to Michael, who was not amused, and fiercely defended his man boobs.

"It's muscle," he insisted.

Again, I stifled a giggle.

When I was young, I dreamed of having little girls. Little girls, who would want to be like me, and play Barbies, wear makeup, and let me curl their hair. I grew up to have little boys, who wrestle, put worms in their pockets, and..... want big boobs, like mine.

Henry got into the boys' art kit, the other day, and strategically blotted a stamp on each of his cheeks. "Mack-ut!" he proudly proclaimed. (translation: "Make-up!")

I spend a lot of time with my boys, so it's no wonder that they want to be like me. I know it won't last long. Someday, I will be begging them to spend time with me, instead of begging for privacy.

It's only a matter of time, before they want to be like their dad, and they won't need me anymore. There is a special bond between fathers and sons, one that is similar to the bond between mothers and daughters... one that I will never get to experience with my children. My husband will get to do the important things, with our boys. He'll get to teach them how to shave, how to tie a tie, how to pick up girls, how to work on their pecs....

Okay, well, nevermind... maybe they'll still need me, a little.

Nothing to be ashamed of....

2010-04-29T00:21:00.005-04:00

A few weeks ago, while we had company, our telephone rang. I peeked at the Caller ID, and hit a button to silence the ring. Jackson, in an effort to impress our guests, gave an exasperated sigh, rolled his eyes, and said, "Probably just a bill collector."

Clearly, we need to teach my four year old about proper dinner conversation.

Fortunately, our visitors just pretended that he hadn't said anything, and we happily ignored him, as well. Now, before my readers begin sending me messages about debt consolidation, or money management programs, let me stress that "bill collectors" do not call our house, regularly. As those of you with children know, you can say something ONE time in front of your child, and they will inevitably repeat it, at the most inopportune time.

That being said, this blog ain't called "Coasting in on fumes" for nothin'.

Yes, Jack has heard us say the phrase he repeated. I am not ashamed of that. I don't want pity, or advice, and I definitely don't want to be judged. What I do want, is for people to understand the choices and life situations that are made by families such as my own.

My boys have Noonan Syndrome. As a result, they both also have Von Willebrand's Disease, which basically means that their blood doesn't clot. This past September, Henry had a Meckel's Diverticulum rupture in his stomach. Of course, I did not know that's what it was, when he awoke from his nap, with a diaper full of blood. York Hospital's ER did not know that's what it was, when we arrived there, and they discovered his blood count was dangerously low. And, even Johns Hopkins did not know that's what it was, when we were rushed there, by ambulance, because York Hospital felt he needed the best care possible. When we arrived at Johns Hopkins, we were informed that they did not have the time to find the source of the bleed. All they knew was that if he did not receive a blood transfusion within an hour, his heart (which was at 214 BPM) was going to give out.

After the transfusion, a million tests, and three days in the PICU, they discovered that a Meckel's Diverticulum (very rare) had ruptured in his stomach. Since Henry's blood doesn't clot, it had put him in a life threatening situation. He had surgery, which required more platelets, and more monitoring. I spent ten days, with Henry, at Johns Hopkins Hospital throughout the ordeal. Words cannot begin to describe what it was like. It was easily, the worst ten days of my life.

I can honestly say, that we did not bother to pay any bills, or even look at our checkbook, during the ten days in which we wondered if our son would live or die. In addition, Michael had limited vacation time, so he had to take four days off, with no pay. Yes, bill collectors began calling our house. I am not ashamed of that. For those of you who have never had the experience of an unexpected, extended hospital stay, insurance does not cover late night trips to the vending machines. It does not cover gas money to get home to check on your four year old, who doesn't know where his brother is. And it, most definitely, does not cover the $25 that you have to spend at the hospital gift shop, to buy an outfit to take your baby home in, because the only clothes he has, at the hospital, are soaked with ten day old blood.

It's been seven months since we almost lost Henry. The physical, emotional, and financial scars are still there. We are coping. We are dealing with what comes at us, as it comes at us. Jackson makes inappropriate announcements because we teach our boys to not be ashamed of who we are, what we go through, or what we have. If people want to judge our lifestyle, or how we manage our money, that is their problem, not ours.

When we left the hospital, the day Henry was released, I knew that he was back on a normal diet, and that after a seven day liquid diet, he had had three days of hospital food. I also knew that, since the veins in both of his feet, and both of his hands, had collapsed under the strain of the five different IVs he had, his last four blood draws in the hospital had been taken from his head. And I knew that if there was ever a child that deserved a treat of McDonald's french fries and a Coke - it was him. Despite the money problems I knew we were going home to, I counted out the change in the console of my car, and went through the drive thru, for my brave boy, before we got home.

And I am not ashamed of that.

"I had it first..."

2010-04-26T13:12:00.004-04:00

I hear these words at least one hundred times a day. They are usually preceded by a four syllable version of "Mom," and followed by either tears, or an act of violence.

"Mo-oo-oo-om!! I had it first!"

I hate these words.

The best part, is that the "it" in question, is usually nothing of importance. I've seen my kids come to blows over a piece of aluminum foil that one got out of the trash. True story.

I make an effort to teach the boys that it does not matter who had it first, what matters is, how they resolve the conflict. After all, more often than not, once one stops showing an interest, the other does, too. In my house, I do not care who "had it first." I have one rule: No fighting. Period. If an argument occurs, the toy gets taken from both boys. Unless, of course, one boy gets injured, in which case, the injured party gets the toy, and the injure-er gets the corner.

I wish more parents did this. Unfortunately, the emphasis most parents put on such trivialities, tend to perpetuate the aggression, causing a vicious cycle. Many parents feel that who had it first, is not only vital information, but an easy solution to any disagreement.

EXAMPLE (as witnessed by me, at a recent gathering):

We'll call the children "A" and "B" to protect the guilty.

A takes a toy from B.
B slugs A in the stomach, very hard.
A crumples to the floor, in tears.
"Mom": "What happened?"
A: "B punched me in the stomach."
B: "A took my toy."
His mothers response?
"Who had it first?"

After deciding that if A hadn't taken B's toy, he'd have never punched his brother in the stomach, "Mom" hands the toy to B, steps over A (still laying on the floor, probably suffering from internal injuries), and walks away, pleased that the fight is over, for now.

At that point, I wanted to slug their mother in the stomach.

These are the same people, who, as adults, can be overheard saying, "Did you see how she decorated her porch with hanging geraniums? She knew I hung my geraniums first!"

Ugh.

As for myself, I will continue to teach my boys, that who had it first is not important. Sharing is important. Wanting another person to be happy is important. Not causing your brother to have a concussion, over a Trick or Treat pumpkin, in March, is important. I am a person who just doesn't care. I allow someone to cut in front of me in line at the grocery store, if they have two items and I have a full cart. When they ask, I don't say, "Well, I'd like to help, but I had this place in line, first."

I hope that one day, my children will understand these lessons and philosophies, that I am trying to teach them. I hope that they will have respect for others, I hope that they will never use violence to retaliate against another, and I hope that they will learn to not covet what others have, in the first place. And I hope, above all, that they begin to understand that having something first is not all it's cracked up to be.

Of course, when they are older, I will have to explain that there are exceptions to every rule, and that yes, sometimes, it should matter who had it first. Just ask the American Indians.

Ode to Mimi....

2010-04-20T01:42:00.000-04:00

My family has been watching the series, "Life," on the Discovery Channel. The more I have watched, the more I can relate to the animals, whose lives and behaviors have been captured so beautifully on film. No matter the species, the theme of motherhood is universal.

I was moved to tears, watching the strawberry poison dart frog, the size of a postage stamp, carry each one of her tadpoles, one by one, up a one hundred foot tree, to safety.

I was mesmerized, by the octopus, who after laying her eggs, settled in to protect them, for the rest of her life. Keeping a constant vigil on her babies, she eventually starves to death.

Perhaps, I most identified with the young elephant, who had just given birth. When her baby became stuck in a mud pit, she tried, unsuccessfully, to save him. Just when it seemed that all hope was lost, her mother became frustrated, and knocked the young mother out of the way, with her trunk. Then, she effortlessly rescued her grandchild from the treacherous mud pit.

With the exception of a brief rebellious period, I have always been close to my mother. Our bond became stronger, when I became a mother, myself. She has been a hands-on grandmother (lovingly called, "Mimi," by my boys) since day one. When I went into labor, with my first child, I got into the bathtub immediately. When I realized what horrible, excruciating agony that I was about to endure, I crawled out of the tub, and laid down on the floor. I yelled to my husband, through clenched teeth, "CALL MY MOTHER!!"

I have a vision of her now, walking down my hallway, swinging her metaphorical trunk, knocking Michael out of the way, to pick me up off of the floor, saying, "Michael, if you are going to take her to the hospital, she's going to need some clothes!!"

Now that I am up to my neck in the mud pit of parenthood, my mom isn't trying to pull me out. She doesn't need to... I am happy here. Instead, like the devoted octopus, she has opted to jump in with us. There have been times, when she has shown up at our door with the milk and bread that we so desperately needed, overdrawing her own bank account in the process. She was by my side, when my boys and I were diagnosed with Noonan Syndrome, a year and a half ago. She has traveled with me to Johns Hopkins, to appointments for the boys, more times than I can count. She held my hair, when I threw up, as my husband drove us home from my hernia surgery, a few months ago. And, she'll be there tomorrow, when I call to tell her I have made another blog entry. (She was my first follower.)

I consider myself very fortunate. I am fortunate, just to still have my mom, but I am most fortunate to appreciate her, and to already value the time I spend with her. Although I can't imagine life without her, I know that day may come. So, I attempt, everyday, to incorporate the lessons that she has taught me, into the way that I parent my boys.

As I struggle to carry my boys, safely, up the tree of Life, I know that my mom is there, behind me, to give me a nudge, when I slip. And, knowing that she is there, makes the climb so much easier to make.

Unbroken vows....

2010-04-05T00:56:00.000-04:00

Today was not one of the boys' better days. Nothing was easy. They didn't want to get dressed for Easter Mass. Henry decided to go on a hunger strike... ALL DAY. Jackson threw tantrum after tantrum. The two of them fought from the time they woke up this morning. It was not a picture perfect Easter Sunday.

Bedtime turned out to be the biggest struggle of all. When they were finally asleep, I crawled onto the couch, still grouchy over the day's events. I kept thinking,
"What have we done wrong, to cause this behavior?"
"They aren't getting any Easter candy tomorrow."
"I need to come up with better punishments."

My mind was racing.

When Henry cried out, about an hour later, I became even more aggravated. I went into the boys' room, and picked him up, to move him, so to not wake up Jack. But, he stopped crying as soon as I lifted him. I stood, as he lay on my shoulder, and I swayed gently, until he settled. I laid him on his bed, and he opened his eyes, just slightly, and said, "'Nugs??"

('''Nugs" is short for "snuggles" - how could I resist?)

I climbed into bed with Henry, and he wrapped his chubby arms around my neck, and I rubbed his back, until he fell asleep. As I lay there, listening to the sound of his breathing, while his damp curls tickled my nose, all of the anger and tension, that I had been feeling, went away. I had scolded Henry, at least one hundred times, today. Yet, he wasn't upset; he didn't hold a grudge... he just needed my love.

It made me think of marriage vows. You take the same vows, when you become a parent, only they are stronger. You don't stand in front of witnesses and proclaim them. You don't use rings to symbolize them. And you don't sign a license to prove them. The silent vows that you take, as parent, come from the depths of your soul. You can't break them, because they only exist in your heart. It is a biological, emotional, and spiritual connection, that is there, for life.

I got up from Henry's bed, and looked at Jackson, who was sleeping peacefully. I felt guilty, because he did not get any 'nugs before bedtime - just a threat of no TV tomorrow. So, I went to the edge of his bed, kissed his cheek, and whispered in his ear:

"Jackson Corbin, Mommy loves you. I love you, for better and for worse, for richer and for poorer, in sickness and in health, until death do us part."

And, still sleeping soundly, he smiled.

Happy Easter, everyone!!

And then came Henry...

2010-03-31T11:12:00.000-04:00

My first child, Jackson, was the "perfect" baby. He was an excellent sleeper, he breezed through teething, and follows instructions as well as an adult. We never had to childproof our home. And then, came Henry. Henry was born almost six weeks premature. His lungs were not fully developed, so he had to be sent to the NICU. In recovery from an emergency c-section, I could not see him right away. My mom was able to take a peek at him, while the nurses took his vitals. Henry used what he had of his lungs to scream angrily, each time a nurse touched him. "He'll be fine," my mom assured me, "He's too mean... he's definitely a survivor."

She was right. Eight days later, Henry came home from the NICU, as good as new... and just as mean. It was as if he held a grudge, against everyone, for the extended hospital stay. He did not like having company, and he preferred to sleep either in my arms, or right next to me, in our bed. He hated baths, and it was a chore just to get him to laugh.

Henry began walking at fourteen months, and my life and my house will never be the same. He pulls leaves off of my plants, has torn two tablecloths, and has broken six of my dishes. He eats crayons, dirt, and the occasional rubber band. Now, at two years old, Henry has developed a more pleasant disposition, but we have dubbed him, "Houdini." He can escape any gate, break childproofed locks, and can scale our furniture with the agility of a monkey. There is never a moment's peace, unless he's napping. My husband has accused me of having a past, secret rendezvous with the Tasmanian Devil, resulting in Henry's conception.

You would think that having a "perfect" child, the first time around, that I would be overwhelmed to have such an active little boy. Yes, I am overwhelmed. I am overwhelmed with joy, to have this little monster, who leaves banana hand prints on my clothes, gives me snotty kisses, and giggles sweetly, as I rock him to sleep.

When Jackson was eight weeks old, he began sleeping through the night. When Henry was eight weeks old, we discovered that he has a congenital heart defect, Pulmonary Valvular Stenosis. We take him to a Pediatric Cardiologist, at Johns Hopkins, every six months. We await the appointment, in which, they tell us that it is time for surgery. As Henry grows, the pressure in his heart will become too much for his pulmonary valve to handle. When that day comes, he will need to receive a replacement valve. Since he is so young, it is difficult to tell how many surgeries he will have to have, or if they will be successful. It may mean limited activities or sports. Although, his heart condition may not be life threatening, other factors with Henry's health make his future uncertain. We will know that his heart is beginning to not function properly, when his activity and energy levels start to decline.

So, when I exercise patience, as he jumps on the couch, or throws a rock and breaks a window, don't judge me. And when he runs from me, holding an important piece of my mail, or flushes my favorite bracelet down the toilet, don't accuse him of being a "bad boy." His daily antics only prove to me that his little heart is beating as it should, and reminds me of how precious life is.

Henry has filled my world with adventure, taught me patience, and has given me an appreciation of every breath my children take. Yes, Jackson, my first born, was an angel. And then came Henry, who made our family complete.

An introduction...

2010-03-30T14:15:00.000-04:00

I was financially independent when I got married, in 2004. I was the manager of a successful salon, matched my husband in income, and loved every minute of it. I have always considered myself a feminist, and intended to stay that way. My co-workers and I found it amusing, to make fun of stay at home moms, who wore Christmas sweaters, and held Longaberger parties on weekends. That did not change after I had my son, Jackson, in August of 2005. Before I gave birth, I had already arranged to have my aunt babysit in my home, so that I could continue to work full time. I loved my son, but I also loved my pre-baby lifestyle. And to be honest, it did not change. I went from working 50 hour weeks, to 40 hour weeks, but other than that, I was determined to not have my life be altered, just because I had a baby. My situation was great. My aunt adored my son. I came home every night, and he was already bathed, fed, and ready for bed. I'd spend a few hours with him, while juggling any household affairs that needed tending. I'd rock him to sleep, (unless I was too tired, in which case, my husband would) and then relax for the evening. Money was rolling in, I had maintained my independence, and someone else handled the hassles of motherhood for me.

All of that changed, when Jackson turned a year old. Around that time, he started to walk and talk, and he could express his opinions clearly. And his opinion was, he didn't want "Mommy," he wanted my aunt. At first I thought it was normal, but it didn't take long before it started to bother me.... REALLY bother me. I cut my work hours back, and tried to make myself more available to him. However, just as I had gotten used to my lifestyle, he had gotten used to his. After a bit of soul searching, I found the perfect solution: my background was education, and there was a child care facility across the street from my house. I thought, "I can continue to work, but have Jack by my side everyday." So, I quit my job at the salon, and Jackson and I started at Kindercare Learning Center, together, in April of 2007. It was great. Jack and I became closer, I loved my job, and I didn't have to work as many late nights. But, that didn't last long.

Four months after I started working at Kindercare, I received a promotion to Assistant Director. I went from supervising my son's room, to working in the front office. Working limited hours turned into working double shifts, and late nights. I had done it again. I had put my own ambitions over the needs of my son.

Jackson started getting sick about two weeks after I started at the day care. He had fevers and vomiting, very frequently. At one point, he was admitted to the hospital for four days for dehydration, and was back in the ER the day after he was discharged. I missed a lot of work to stay with him, and by the time my promotion came, he seemed to be improving, having only a few bouts of vomiting a month. Then he took a bad turn, with daily vomiting. The doctors kept telling us that he just had a "weak stomach." The more I worked, the worse he got. We finally decided to switch pediatricians. Our new pediatrician called to our attention the fact that Jack had gone from the 75th percentile in height and weight, to the 5th percentile in both, in just six months. The vomiting had had that much of an effect on him. They ran every test possible on him, screening him for everything from hydrocephalus to cancer. I went into my work, and told them I would not be back until he was better, that I needed to be home. It took three weeks for all of the tests to be done, and for us to get the results.

In those three weeks, something happened. I became a mother. I snuggled with Jackson on the couch, while we watched Scooby-Doo. I gave him baths in the middle of the day, just for fun. I made dinner for the three of us, that we actually sat down and ate, together. And then, something else happened. Jackson started getting better. During that time, he had no vomiting spells, he talked more, and slowly, the little chubby rolls on his arms and legs began to reappear. I looked around at my life, and the truth hit me, hard. My husband and I lived in a world of plasma screen TVs, Sephora products, and drive thru dinners. We had never settled into family life. Before any of the results came back, I knew what they were going to be. They were all negative. Functionally, there was nothing wrong with him. He was diagnosed with Cyclic Vomiting Syndrome, a rare condition affecting children whose mothers suffer from migraines. (I've had them since I was ten.) It is anxiety related, and Jackson's trigger was having to spend so much time away from me. It's a hard pill to swallow to hear that your two year old has anxiety issues. So for me, there was no doubt as to what needed to be done.

I quit working in October 2007. For the last two and a half years, I have been a full time mom, to Jackson and his brother, Henry, who was born February 2008. Both of our boys have multiple health issues, relating to Noonan Syndrome, a genetic condition that all three of us have. Even with the added medical expenses, I still stand by the fact that staying home was the best decision I have ever made. Each day is a struggle, financially, especially in this economy. However, there is a home cooked meal on the table every night, the house is in order, and, most importantly, I am the one who kisses the boys' boo-boos when they fall. Although we have had to sacrifice, we are so happy. My husband no longer comes home from an hour commute, for me to plead with him to go back out to pick up something to eat. My focus has changed, from myself to my family. It feels wonderful, to no longer feel the need to keep up with the Joneses. I know that I am here for my boys, whenever they need me. There is no doubt - I am their mother.

I never thought in a million years, that I would enjoy being a stay at home mom, but I think I have found my calling. However, a few things haven't changed. I do not own a Christmas sweater, and even with my free time, I still turn down invitations to Longaberger parties. Dinner on the table at 6:00 is one thing, but even I have my limits!