Tuesday, December 17, 2013

Life After Death...

This is a 100% completely true story about a plant. 

In December of 2010, I went to the doctor and despite being almost twelve weeks pregnant, I found out that our unborn child had no heartbeat.  As my life stands at this moment, it was the most heartbreaking thing that has ever happened to me and I did not take it well.  People sent us things, as they usually do when they hear of someone mourning.  We received sympathy cards and phone calls.  We got a fruit basket.  And my mother-in-law sent me a planter.  It was a lovely planter.  It was shallow, light brown, and was FULL of various green plants.  The moment it arrived, I decided that it would be the perfect memorial for our little one.  I would keep it and I would look at it and "Jude" would be remembered forever.  (We had been indecisive about names, but I liked Jude for a boy or a girl.  Now that we will never know the gender of what would have been our third child, Jude seems like the perfect name.) 

The thing is, as I didn’t take the loss well, I kind of gave up for a little while.  I stopped doing a lot of things and one of those things was watering the “memorial planter.”   All of the plants in the planter died.  They died a very slow death.  I don’t know why I decided to neglect it… maybe I was bitter.  Maybe I didn’t want to look at it anymore.  Maybe I didn’t want the reminder.  All I know is that I’d literally water all of my other plants that were around it and leave that planter dry.  Michael would say to me, “Anna, that plant is turning brown.  You should probably water it.”  I would sigh and say, “I know,” and I’d roll back over on the couch, buried under my depression.  After six months, all the leaves had officially dried up.  There was no green left, there was no sign of life, just brown sticks coming out of the soil.  Michael would say, gently, “Anna, that plant is dead, now.  You should probably throw it away.”  I would reply, “I know it’s dead.  But it is the baby’s memorial.  I just can’t throw it away.  I’m not ready, yet.”  So I stuck it up on top of a bookshelf, out of sight, out of mind.  There it stayed for a year and a half. 

Last year, a few weeks before Christmas, I was cleaning and I finally took the planter off the top of the bookshelf.  I wiped the dust off of it and I was immediately filled with feelings of regret.  I couldn't believe that I let the planter die.  I saw that all that was left was one, single twig, with four brown crumbly leaves attached to it.  A little, tiny, brown twig just barely sticking up an inch out of the soil.  I pinched the twig between my index finger and thumb and pulled.  It came out of the soil so easily; no roots holding it in place.  I took the planter and the twig that was still pinched between my fingers and I held it over the garbage can, ready to dump out the dirt, toss the twig, and move on.  And I just couldn’t do it.  I couldn't throw it away.  I set the planter down on the counter.  I placed the twig back in the planter, carefully patting the soil to hold it in place, and for the first time in over two years, I watered it.  I carried it into my home office – where I spend most of my time – and I cleared a spot on the table by the window. 

From that day on, every Sunday, when I watered my other plants, I would come into my office and I’d water the twig.  I could tell by the way Michael would look at me that he thought I was fighting a hopeless cause.  It was a dried up, dead twig, with no roots.  "But I can tell it's growing," I'd tell him.  "It's taller than it was last week!"  It didn't take long to realize that I was right.  It was growing.  A few weeks after I started watering it, it was significantly taller than it had been and the brown leaves were starting to turn green.   Then, after a few months, an amazing thing happened.  She sprouted more leaves!  She was alive and growing!  I knew then that she was going to be okay… that I was going to be okay.

I know that I will never fully recover from my loss.  No mother who loses a child, no matter what age, ever does.   I know that it's silly to think that because I brought a plant back from the dead that all my problems are behind me.  They are still ever present, with many more to come.  But what this plant did is give me what every person who grieves needs: Hope.  Hope that there will be a tomorrow and that it will be better than yesterday.  Hope that when all seems lost, miracles can happen.  And hope that with the right amount of determination, nothing is impossible.  I'm not saying that tomorrow will definitely be better than yesterday.  Or that miracles happen daily.  Or that it only takes determination to accomplish the impossible.  I'm saying that as long as you have the hope that these things will happen, all is not lost.  It is only when we lose hope that we lose the ability move forward.

The boys were too young to have been impacted by our loss.  They don't remember that I had been pregnant.  We don’t talk about it in front of them and they have never heard the story behind the plant in my office.  Despite that, I am constantly finding little toys that they leave in the soil of the plant.  They don’t do that to any other plants in the house, but every once in a while, I find a Lego figure or an action figure or a pencil or a Happy Meal toy laying in the soil, at the base of the plant.  It’s almost as if they are leaving “gifts” for their lost youngest sibling.

Sometimes, when I’m alone in my office, I look over at my plant with amazement, as I see what she looks like now: Tall, full, green, strong, and beautiful, with new spouts appearing every week.  This plant is no longer just a memorial to our lost baby.  She has become so much more. 

I like to name my plants; I always have.  Of course I had to christen my miracle plant, "Jude" -  not only for our little one who was not strong enough for this world, but also for St. Jude, who is the Patron Saint of Hopeless Causes.

Thursday, December 13, 2012

Keep Calm and Carry On...

When you are the parent of a child (or children) with special needs and/or health issues, you quickly learn that there are good days and bad days.  The good days are days when, if only for a moment, you get to forget.  You get to forget that things aren’t absolutely perfect, because to you, any day that doesn’t involve a doctor or an appointment or pain or worry IS perfect.

The bad days are days when you remember.  You remember every appointment, every needle stick, every illness, and every surgery, because every appointment, every needle stick, every illness, and every surgery reminds you of each and every one before it.  And you realize, again, that it will never be over.  There will always be more to come.

Yesterday was a bad day.  We met with a new hematologist.  This always means going over the medical history of the boys.  It involves opening up the binders and the journals that I like to keep closed.  If they stay closed, you see, it means that I’m not putting something in or taking something out – slicing open old wounds or creating new scars.  Yesterday, I had to do both.  After retelling their stories to a nurse, then to a hemophilia coordinator, then to a Fellow, and finally to the specialist (slice, slice, slice, SLICE), we learned that we would also be adding to our numerous psychological scars, because the boys needed to have extensive blood work done.

Henry went first.  Though he’s the younger one, he’s been through more.  He’s pretty familiar with the process.  He cried when the needle broke the skin, but quickly recovered as his mind drifted to the “prize box.”  He became a bit uneasy by the time they got to the sixth tube of blood, but he managed to sit still for all eight.

Jackson was next and on the verge of a nervous breakdown by the time he climbed onto my lap.  When they stuck him, I had to tighten my grip, because he flailed and screamed.  I whispered happy thoughts into his ear, but he ignored me.  My mom (Mimi was along for the trip, as always) made promises of McDonald’s and sleepovers, but he ignored her.  And then, Henry, the four year old seasoned veteran, approached us.  He put his hand on Jackson’s arm and said, “I know how you feel, Jackie.  I know it hurts really bad.  I know why you are crying.  That’s how I felt.”  Jackson turned to his brother, swallowing his tears and hiccupping.  He was comforted.  Henry stayed by Jackson’s side and Jackson looked at Henry while the rest of the eight tubes of blood were drawn from his little arm.  Even the nurses were in awe.

 The boys giggled and sang the entire way home.  After a two hour round trip, a three hour appointment, a million questions, two exams, and sixteen total tubes of blood between them, the only tears were those formed from laughing, as they made up songs about their butts.  They had recovered so quickly and I finally understood why.  The day, good or bad, had been normal for us.  It’s what we do.  My children know that better than I do. They’ve been having bad days their entire lives.  But I always encourage them to carry on and we sing and we laugh when it’s over.  If I keep trying to forget, if I keep trying to erase the “bad days,” I’ll end up erasing most of our memories.  And as hard as yesterday was, I never want to forget the connection between my sons that I was able to witness.  It was one of the most beautiful things I have ever seen.

I was not as perky as the boys were, last night.  I was mentally, physically, and emotionally exhausted.  I would have preferred a nice, quiet drive.  But, despite the pounding in my head from an impending migraine, I let the boys sing loudly and I enjoyed their giggles.  I didn’t tell them to be quiet.  The happy voices in the backseat helped me remember things.  I remembered how fortunate I am to have such fabulous children.  I was reminded of how blessed they are to have each other.  And I realized that maybe yesterday wasn’t such a bad day, after all.

Friday, September 7, 2012

Open Letter to President Barack Obama...

President Obama,

Allow me to introduce myself.  My name is Anna and I am a 33 year old mother of two.  I have two children with special needs, Jackson and Henry.  My boys and I share a genetic condition known as Noonan Syndrome.  Jackson (we like to call him, “Jack”) and Henry have multiple health issues and see many specialists, due to their NS.  As a result, I haven’t worked since Henry was born.  Living in this economy on one income, with mounting medical expenses and a large amount of credit card debt, places us at the low end of the middle class of which you frequently speak.  My husband and I are Catholic Democrats.  We voted for you in 2008 and we will vote for you again, this November.

There are some who think you have failed as a president.  There are some who doubt your abilities.  There are some who believe you do not know or want what is best for the United States.  I would like for them and for you to hear my voice:  They are wrong.

 In case you need some validation and in case those against you need proof, I am writing this letter to tell you, specifically, how you helped and consequently saved my family.  I should mention that you have had many wonderful accomplishments during your presidency.  You saved the automobile industry, you prevented a financial collapse, and you eliminated Osama Bin Laden.  However, those are things that benefited America as a whole.  I want to tell you what you have done for me.

Let us begin with economics, since that is the topic on everyone’s lips.  In 2008, when Jack was already being treated for multiple health issues and Henry was born prematurely, with a heart defect (which led to the boys' later diagnosis of NS), I knew I would no longer be working.  To save our family, we began adding to our credit card debt.  It was easy.  We were able to extend our credit limits, take new cards, and do whatever we needed to do to take care of our boys.  The credit card companies were very willing to give and give, so we took and took.  People may judge that.  However, when a doctor tells you that your child needs surgery and that he can’t perform it without a prepayment, you hand over your card without blinking an eye.  This happened to us multiple times.  It wasn’t until early 2009 that we realized that we were in a downward spiral.  The card companies were raising our rates at their leisure and payday didn’t always coincide with the due dates.  And then, as if by a miracle, you passed The Credit CARD Act of 2009.  The companies seemed to respond overnight.  Following the new regulations, they began to lock in our rates, give us more than two weeks to pay our bill, and allowed us to cancel our cards.  Before the Act, we were not seeing any decrease in our account balances.  It seemed that our payments only paid fees and interest.  Because of your bill, we began seeing a change.  Since 2010, we have been able to eliminate almost 40% of our credit card debt.  My family is in better shape, financially, than we were in 2008, because of you.  For the first time in three years, we see a light at the end of the tunnel.  And it is shining brightly.

On October 28, 2009, ironically on the one year anniversary of the day that a blood test confirmed my children's diagnosis of Noonan Syndrome, you signed the Matthew Shepard and James Byrd, Jr. Hate Crimes Prevention Act into law.  By doing so, you expanded the 1969 United States federal hate crime law to include crimes motivated by a victim's actual or perceived gender, sexual orientation, gender identity, or DISABILITY.  Mr. President, you have protected my sons.  I will forever be in your debt for recognizing that bullies do exist and that they more often than not, prey on those who are different.  While that fact may never change, at least we can feel some comfort in knowing that those who commit hate crimes will be prosecuted to the fullest extent of the law.

 Finally, let express my gratitude for what you have done for my family that is, in my eyes, the most important:  The Patient Protection and Affordable Care Act.  Jack and Henry are the definition of preexisting conditions.  They have many.  They were born with a condition that will continue to affect their health, for as long as they live.  But thanks to you, not only will they never be refused health insurance, not only will they be able to be covered under their father and I until they are each 26 years old, but they will have access to affordable health care for as long as they live, no matter their income.  I will grow old knowing that my boys, who can never be cured of Noonan Syndrome, will always be able to receive the care that they need.  I will never have to fight insurance companies on their behalf, because you have already done it for me.

 So, for the Republicans, for the conservatives, for the cynics, for the doubters, for the Tea Partiers, for the Birthers, but especially for you, Mr. President:  Here was the story of a lower middle class family who has benefited from the presidency of Barack Obama.  I hope and pray that our country allows you the opportunity to serve us for four more years.  I believe in what you say.  I believe in what you do.  I believe, with all of my heart, that you know and want what is best for me, for my family, and for the United States of America.

Thank you, President Obama.  Thank you and may God bless you.

Anna C. Corbin

Tuesday, August 16, 2011

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

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.  : )


Wednesday, June 29, 2011

The best medicine...

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.


Wednesday, June 15, 2011

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

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!!

Wednesday, June 1, 2011

Hello, my name is...

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.

Friday, April 8, 2011

Quality of Care...

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:


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:

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.

Wednesday, March 2, 2011

Once Upon a Time...

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...

Saturday, February 19, 2011

Living in Holland...

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

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


WELCOME TO HOLLAND  by Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

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

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

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

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

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

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

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

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

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.

Monday, February 7, 2011

Listen to Your Heart...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, February 1, 2011

Pajama Time...


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.


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