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Saturday, May 28, 2011

I Will Never Forget

As I sit here in the comfort of my living room, on a lazy Saturday afternoon, I get to watch my kids play in the rain.  I get to see them move on their own, with smiles on their faces, and toys in their hands.  I get to help them with the "problems" in their day...an untied shoe, a dropped sucker, a scraped knee.  I  now know the importance of being able to "fix" such things for your children.  And, I know that a day will come again when I will take the simple act of brushing my daughter's hair for granted.  But, right now, in this moment I have not forgotten that there is another world of parenting out there.  A place where parents don't have the answers and kisses don't fix boo boos. 

Living in a hospital full of sick children is sort of like living in a parallel universe.  You know in your head that somewhere out there parents aren't spending their days watching heart monitors and respiratory rates.  You know that the biggest obstacles for the day are running to and from grocery stores and ballgames.  But, it becomes extremely hard to remember that when you run into parent after parent with strain in their faces, slumped shoulders, and dark circles under their eyes.  Everytime you think that your day couldn't get any worse you get into the elevator with a mother who has been there longer, a father whose daughter used to be an athlete and now lays motionless in a shell of her former self.  It's heartbreaking and emotionally draining.  It physically pulls you closer to the ground.  You can actually feel the pain in the middle of your chest, and you ask again, "Why?"

I met two families in my stay at the children's hospital, and we shared several of those "been there" moments.  The difference is that I sit here at home while my baby progresses, and neither of them got to bring their children home.  Mothers here in my hometown discuss which teachers their children will have next year, but in that other world, my new friend/familiar stranger tells me how she plans to hold her baby as he leaves the world.  And people called ME strong?  You don't get that kind of strength by choice.  You get it because there is no other alternative. 

I'm not strong, and at times I even felt like a coward.  When my baby was struggling the most, and things were the most scary I stood at the foot of the bed and stared.  The doctor asked if I wanted to stand up next to him and hold his hand, and I remember thinking, "I should WANT to shouldn't I?  I should want to be there for him and touch him during this scary time."  But there comes a point where you are sure that you absolutely cannot take another second.  It is difficult for me to share these things because I'm ashamed of those moments.  Did I walk up next to him and take his hand?  Of course I did, but it wasn't because of strength.  It was because the alternative wasn't an option.  These are the moments that I remembered all of those people who were praying for us.  I recalled the encouraging words of our friends and family members, and I let THEM hold ME up.

For whatever reason, our current outcome is a good one.  It's difficult, but ultimately positive.  I do not take that for granted.  I know how lucky I am to be able to even share these thoughts with others.  We will continue to take steps forward.  We will continue to be fearful of falling back, but will celebrate the little victories along the way.  But, no matter how far forward we go, I will not forget the place from which we have come.  I will not forget the families who mourn losses, or the ones who continue to fight that impossible battle.  I promise today and everyday, that Kailey and baby Noah will not be forgotten.

Thursday, May 26, 2011

The Seventh Sign

So, I don't really even know where to start with this latest debacle in the Zanger family saga.  I guess the beginning is as good as any other place.  Everything I write about in this post was very serious and quite scary at times, but I have a feeling that it will take on a more humorous appearance, simply because all I can do now is laugh at the absolute ridiculousness of my life.

Jeff and I headed to St. Louis yesterday for Easton's appointment with neurosurgery and for a blood draw.  The first minor issue we had was that we left early enough to do the blood draw first, and waited in the crowded waiting room for about 20 minutes only to find out that they don't draw blood from broviac lines in the outpatient lab.  So, basically we sat in a room full of other germ-carriers (as this is now how I see human beings) only to be sent away.  We then went to our appointment with neurosurgery and decided to deal with the blood draw later.  When we got to the office, the doctor informed us that although he did see a malformation, it wasn't bad enough that he needed to put a shunt in his head at this time.  To which we replied, "Oh, that's good."  But, inside we were both thinking, "What the hell are you talking about????  We hadn't even considered that!"   After the appointment, a nurse was kind enough to come down and draw his blood from the broviac even though he wasn't her patient. (By the way, STL Children's is AMAZING)

Oddly enough these were NOT the most unfortunate events of the day.  If you live anywhere near the midwest, you can probably guess what was in store for us next.  We left St. Louis and drove directly into the heart of the worst storms I've ever seen in my entire life.  There were tornado warnings in absolutely every single county in MO, and I swear we drove through every one of them.  We eventually just decided to go into a Super 8 motel in Bowling Green and ask if we could come in for awhile.  This was not a case of "no room at the inn."  Those people welcomed us in, brought us blankets, and offered hot chocolate and coffee.  It was incredible.  They even reserved the bathroom for us because we were traveling with a baby and it was considered the safest place to be when the tornado came through.  I was seriously in awe of these people.

But, you really know you're screwed when you pull up to a motel and 10 people are staring out the window.  And, THEN you go into the "safe" room and an old hispanic woman is mumbling in the corner and you realize that she's saying a ROSARY!!  Yep, I figured it was the end.  Although, I felt pretty good about the woman being old, because I figured if she was the one praying we were probably getting the best direct line to the Big Guy. I can understand why she felt it necessary to whip out the big guns because these were some SERIOUS storms.  I'm not talking about a  "this will be fun, let's pretend we're Dorothy," kind of storm.  We're talking more of a "grab those ruby slippers and HAUL your ASS out of Kansas" kind of thing.  Of course, I'm freaking out the entire time that my son is going to start seizing in this motel, in the middle of tornado weather.  Luckily I did remember to bring his rescue medications in from the van and was ready to administer them at any second.  He, however, was much less concerned about the whole situation and SLEPT through the entire thing.  Apparently once you've been in a coma, tornadoes are sort of child's play.

Oh yeah, by the way, I forgot to mention that when we were driving through the storm before we stopped at the hotel, I began shaking violently.  Because I got FREAKIN' MASTITIS on the way home!!  Are you kidding me, right now?  If you've never experienced mastitis, it is an infection in your breast that is associated with breastfeeding.  The symptoms are a large knot in your breast that is extremely painful to touch and is warm and red.  You ALSO experience fever, fatigue, and chills that seriously should be called convulsions.  I couldn't even hold the hot chocolate I was trying to drink.  At this point all I could think of was the movie the Seventh Sign.  It's the one with Demi Moore, and she's pregnant with what may potentially be satan and as she nears her due date all of these insane things start happening in the world.  The line from the movie that kept playing over and over in my head was, "Will you die for him?"  I looked at Easton sleeping peacefully in his carseat and thought, "And today is your FREAKING birthday.  Is this some sort of sign?  I mean, seriously how much more can a person take?  So, I just looked up at the sky and said, "Dude, I'm pretty sure I've answered the 'will you die for him?' question several times in the past month.  Can we knock it off with boom booming, the funky looking clouds, and the exploding boob?"

Tuesday, May 24, 2011

Home

We.  Are.  Home.  Last night we pulled into our driveway just as we have done a million times before, but this time it was different.  I got out of the car, opened the back door and pulled my baby out of his carseat.  I stood there in that driveway and held him for a moment.  Tears ran down my face as I realized that at one time during all of the chaos, I had considered the fact that this moment may never happen.  I looked around at all of the familiar houses.  I enjoyed the cool, still evening.  I breathed in the smell of the lilac bush at the neighbor's house.  I resisted the sudden urge to return to my running regimen right then, because as soon as my feet hit the familir pavement, I was ready to go.

I finally came into the house and began crying again at the sight of my children's bookbags sitting on the floor.  Bookbags have never meant so much to me, but in that moment they represented two healthy, extremely capable children who have completed the end of their school year without my help.  I LOVED seeing the toys all over the ground because it means that my children were happy and playing.  They didn't have to think about what muscles to use when reaching for a toy.  They didn't have to concentrate on the fact that they were in a sitting position. These things that I had never even given a second thought a month ago, are now precious gifts.

We were terrified when we walked through the door.  And, we are still scared today.  But, somehow all of the normal tasks of a day make life so much more bearable.  I had to comb my daughter's hair this morning.  I had to shower (in my own bathroom!).  Easton seems to be more comfortable too, and even rolled over today which is a skill that we'd been working on in the hospital but could never quite master.

We didn't have to prepare any meals.  People continue to bring food and monetary donations.  I didn't realize how great the meals would be.  But, when you are so focused on watching every move your baby makes all day long, the last thing you think of is what kind of meal to prepare.  Luckily, we've got more support than any two people deserve.

I don't understand why all of it happened, and I still don't have any acceptable answers.  But, I can now see some of the beauty that has come from such pain and frustration. People who have never met are working together to create a sort of bubble of protection and giving around my family.  Children are bringing their piggy banks to school and emptying the contents in support of my son.  They are setting up their lemonade stands and advertising that all proceeds go to Easton Superman Zanger! And, we have learned to appreciate the "small stuff."  I LOVE the mess in my house.  I LOVE the smell of lilacs.  And I LOVE the familiar faces of my hometown.

Friday, May 20, 2011

Spoiled Rotten

I've always considered myself a sort of "tow the line" kind of mom.  I really do expect my children to behave in public and to be respectful, caring citizens.  I was the mom whose kids eyes would light up like it was Christmas when they got to have soda.  They know that we go to Wal-mart to buy things we need, not toys for them and they are ok with that.  However, this is the mom that I was BEFORE my world came tumbling down.  I have a feeling that things may change a little when I get back home.  I may give a whole new meaning to the word "spoiled."  Easton makes one little whimper and I pick him up immediately.  So, I'm just going to apologize right now for how absolutely ROTTEN this child is going to be.

I imagine myself using this experience as leverage several years down the road:

Teenage Easton:  "But, Mom, I just can't.  I'm so tired!"

Me:  "Oh, really son?  You can seize for 24 hours straight, be in a coma for 5 days, re-learn how to sit, talk, walk, etc....but taking out the garbage is just too much for you?"

Each good day we have brings more of these thoughts.  I imagine dealing with an incredibly spoiled, entitled,  'pain in the butt' child for years to come.  And each time I have that thought it is immediately followed by, "I pray to God that I get the chance to be that miserable."

Wednesday, May 18, 2011

Thank You, Merci, Gracias

How do you say "thank you"?  How do you tell the people around you that without their love and support, you would not have been able to continue breathing?  How do you make someone realize that your very existence is solely dependent on the fact that when you needed them, they were there?

My family has experienced tragedy, but I have a feeling if you take a look around Payson and Quincy, IL right now, it is not sadness that you would see.  It is strength, determination,  love, and devotion.  You would see complete strangers rallying around one another to lift up one broken little family.  You would see smiles as they read of the progress that our little superhero is making.  

Can you tell me what love looks like?  Many of us have been fortunate enough to feel it's effects, but I'm telling you that I have SEEN it.  It comes in the form of prayer and encouragement through text message, email, or facebook.  It takes the shape of a Superman shirt that covers the backs of so many kind people.  It walks for 24 hours straight in recognition of the struggle and suffering of one little boy.  It takes the shape of a friend who sets aside her own life for awhile and sits at the bedside, comforting a breaking mother.  It's family members pulling together to support and attempt to continue some sort of normalcy for our other children.  It's women leaving their own homes to come and clean ours so that we don't have to worry about such things.  It's care packages brought by several friends with everything we could ever want or need.  It's answering the phone and knowing that there is nothing you can say to make it better, but just listening as I scream and cry and tell you that I can't take it anymore.   It's smiling through tears as I tell you that we have made progress.

I could never even come close to thanking every person that has had a hand in making this nightmare bearable.  I can't quite wrap my head around the enormity of the situation back home.  What I can say is that I am extremely proud that I come from a place full of such big hearts.   I can say that through all of this chaos and pain, you have all played a part in allowing me to smile again.  Thank you from the bottom of my broken, but healing heart.

Tuesday, May 17, 2011

April 29th

On April 29th I got up and got the kids ready for school.  I went through all the motions of being  mother of four without paying attention to what  I was doing. I spent the day helping out with my nieces because my sister and her husband were out of town.  On April 29th, I had ice cream with all 7 babies.  My four children, three nieces, Jeff and myself walked to the nearest gas station and got cones as a special treat.  We had just been playing ball in the backyard.  On April 29th, the weather was nice.  The sun was out and there was a slight breeze. But, I didn't even notice.  On April 29th, I nursed my baby just like every other night before that, and was completely unaware of the fact that it may indeed have been the last time.

On April 29th, I still lived in my own house.  I was lucky enough to be frustrated with the fact that it was never clean enough.  I still got to read to my babies and kiss them goodnight before bed, and I took it for granted.  On April 29th, I had the luxury of complaining that the baby kept me up late at night.  I climbed into my own bed, in my own pajamas, and turned the light off in my own room.  I didn't take notice because it was just my life.  But that was on April 29th.

Somehow between the evening of April 29th and the wee hours of the morning on April 30th, everything changed.  My house is no longer the one in which I had been complaining about.  It's an institution with hundreds of other weary parents.  But for some of them, April 29th was February 5th or even October 3rd.  My bed is no longer the one that I share with my husband, but a pull-out vinyl chair.  I don't play ball in the backyard anymore, or go on leisure walks for ice cream.  Instead the games I play all have the very specific goal of bringing my baby out of his current prison.  I don't get to kiss my babies goodnight.  I call them on a cell phone from 2 hours away and sing the songs that I've been singing to them since they were infants.  I hear them cry on the other end of the line begging me to come home.  I tried to nurse my baby just like I all of those times I had taken for granted, but he doesn't remember how and he may never do it again.  I may have experienced my last feeding without even knowing it.  I now pump the milk out and pour it down his throat because he's lost the ability to suck and swallow.

I know that I can't change all that has happened.  I know that I couldn't have done anything differently to have erased the virus that took our lives from us.  But if I had the opportunity to go back in time, and if I could take what I've learned and change just one thing about all that has happened...on April 29th, I would notice.

Sunday, May 15, 2011

Anger is a Feeling Too

I blog to get my frustrations down and out of my head.  It helps to see them in print.  It's comforting and therapeutic.  But, I've found lately that what is coming out is all of the sentimental and sad parts of this ordeal.  In the spirit of true honesty, I feel that I need to write about the other component.  ANGER.  I'm not always so sweet and strong and loving...etc.  Sometimes I'm so pissed I can't see straight.

I ask 'why' almost every single minute of the day.  I see kids being pulled around the garden of the hospital in wagons.  They are pointing to flowers and smiling, and it makes me angry.  I don't understand why it's us and not them.  My niece was sick the same time Easton was, and it was most likely the same virus but she is fine and here we sit in this Hell.  Do I want other people's children to be sick??  Of course not.  And I love my niece, but that doesn't mean that I don't ask why.  Does that make me a bad person?  I don't know, but I'm willing to admit it as truth.  I hate it when a nurse comes in and talks about her kids at home.  She smiles and tells me some cute little story about her youngest getting into trouble, and it makes me WANT TO SCREAM!!!!  I want to yell, "DON'T YOU GET THAT IT COULD HAVE JUST AS EASILY BEEN YOU?!?!!?"  They've done countless tests, and have discovered that Easton doesn't have any immunodeficiencies.  There is absolutely no reason that it's him and NOT the little boy that I saw eating french fries in the cafeteria and watching the fish swim around.  So WHY??  WHY us?  WHY him? 

I also can't handle people telling me that they know how I must feel because they are mothers.  Being a mother does not make you know what this is like.  And telling me that your kid has been in the hospital before is probably not the best idea either.  We aren't talking about needing a little oxygen or being dehydrated and needing fluids.  That's sort of the "tball" of child hospitalizations.  We are in the BIGS.  I know people don't know what to say, and they are trying to make me feel better.  I so appreciate the love and support of all of those surrounding me, that's why I feel it necessary to forewarn anyone who may have the unfortunate chance of talking to me anytime in the near future.

This is the not-so-pretty side, but it's still real.  It's there, always lurking below the surface.  Sometimes it's more than I can handle and it comes out in the form of hatred.  I don't like this part of myself, but I also can't control it.  I feel everything on a supercharged level now, and that includes anger.

A Letter to My Baby

Easton,

Before I had you, I was already a busy mom of three young children. I, like most overworked mommies, was getting pretty good at complaining about the everyday "annoyances" and frustrations that plague every young mother. Then I became pregnant. Your Dad and I were immediately thinking about the expansion of our family. Would our house be big enough? Would we be able to handle four small children? We began to get very excited at the prospect of expanding our family. And then, eleven weeks later I miscarried. It was one of the hardest things we had ever faced. Bad things didn't happen to us. We were still naive enough to believe that we were somehow exempt from experiencing the unthinkable. It was a long and grueling process but we leaned on each other until the hurt became more bearable.

A year and a half later, we were setting up for your brother Logan's 6th birthday party and I didn't feel very good. I went to the doctor for some medicine and was totally shocked when the doctor said, "We have some other results from the tests that we ran. You are pregnant." Although the initial response was that joy of being a mother, I immediately put up my defenses because I couldn't bear the thought of enduring that kind of pain again. It took a lot of convincing by the doctors, but I was finally able to give myself permission to hope. Your pregnancy was very different from the others, simply because now I had experienced the pain of loss. I did everything I could to ensure your safe arrival. I still believed that I could control such things. I was diagnosed as a gestational diabetic and that meant giving up my normal diet, but that seemed such a small price to pay, considering it would mean bringing you safely to my arms.

You were born on May 25, 2010, at 8:32 a.m. You weighed 7 pounds 14 oz., and you were 20 inches long. My smallest baby by far, but no less beautiful and no less perfect.  At first we thought you looked just like Daddy, but as you grow you resemble Mommy and Morgan.  We've had our ups and downs with illness.  You had several ear infections and some issues with possible asthma.  At the time we thought we were really dealing with something difficult.  We had our share of "sleepless" nights and moments of frustration.  But, we also love every minute we get to spend with you.

You are such a silly baby.  You can be content for long periods of time simply playing by yourself, but when you decided that you want Mommy your patience becomes quite thin.  You scrunch up your face and sort of whine when I pass until I pick you up.  You LOVE ice cream, and you become very angry when someone has it and doesn't share with you.  You love to watch Curious Buddies and Brainy Baby.  In fact, if we happen to get in your way, you will maneuver yourself around us until you can see it again.

You have taught me so much as a mother.  I always knew that I loved my children with a passion that I could never express, but now that love has been tested and I've seen a glimpse of just how far it goes.  During your hospital stay I have laughed and cried, smiled and screamed.  I have BEGGED and PLEADED with anyone who will listen, asking them to tell me how to take your place.  I want to crawl into that bed and take over your suffering just so that you can get up and play peek-a-boo with Daddy.  I want your brother and sisters to be annoyed when you crawl over and mess up their game.  I want you to get dirty and get into trouble.  I want you to learn.  I want you to find love.  I want you to LIVE.  I don't know why they won't let me trade places with you.  It's ok if I never get to leave this hospital as long as you live the life you deserve.

It's terrifying to love someone this much.  It hurts so badly sometimes that I can't breathe.  But then there are those moments when no one else is in the room, and I turn on some music and hold you against my chest.  I sing to you and you look up at me.  I swear in that moment that I can see my little boy.  You're in there somewhere, and I promise you that I will be here when you come back.  I will endure the heartache and the setbacks just so that I can see that tiniest step forward.   You have a strength that defies logic, and you are teaching me everyday.  I am your Mommy, and I will be here every step of the way.

Monday, May 2, 2011

My Little Superman

I now keep my toothbrush in my purse. I keep my mind from going places that are too scary for words. And I keep a constant vigil at the bedside of the strongest, most beautiful baby boy. So many things have changed in the last 24 hours. One minute I was climbing the stairs to give good night kisses and in the very next instant I found myself climbing into the cockpit of the small airplane that would serve as the best route of transportation for my very sick baby.

When did all of this happen? At what point did I go from playing patty-cake and tickle games to counting respirations and pushing tubes aside just so I can touch his hand? When did I stop thinking of myself as a veteran momma with routines and answers and become this scared, uncertain bystander questioning every single decision I've made over the last year? I know that there are no answers to my questions. It has become abundantly clear that you don't get answers in this new world, at least not without adding a dozen more questions. But, I still have to ask them, even if only in written form. I need to a way to make the arbitrary concrete. I need to be able to do something to bring my brain out of hyperdrive for a few minutes.

Everyone surrounding us has been absolutely amazing. It is nothing short of a miracle the way that our support system has come together in this time of crisis. I am in constant awe of the display of love and support that we have been given. The medical teams are outstanding. Their knowledge and level of expertise is truly incredible. I wouldn't want to be anywhere else at a time like this. New people keep coming in to take care of my boy and each one has commented on how cute he is, and how they love his dark hair. Although this makes me smile inside, it also makes me want to scream. I want to tell them that they aren't seeing my baby. Sure the child lying in this bed is beautiful, but he isn't the person that I know. I want to tell them how he already knows that he likes ice cream better than any other food he's ever tried. I want them to see the scrunchy face he makes when he's playing and being silly. I want them to see how he follows my every move, making sure that Mommy isn't going too far. Unfortunately this also makes me wonder if I have seen these things for the last time. I know that the thought is morbid, but that doesn't mean that it isn't there, always threatening.

I have already learned so much in the past day and a half. My own nursing knowledge has been tested and has grown further than I have ever wanted. But I have also learned other things. I've discovered things about my husband and myself and this life we've created. I know that we have surrounded ourselves with only the best friends, that we have been given amazing family. We have family by chance and family by choice, and although I knew at one time, I can no longer remember who falls into which category. I have learned that although I may not be perfect, I am absolutely certain that I have chosen the best Daddy for my babies.

We are constantly checking each of Easton's organs and making sure that they are functioning properly. It is great to know that his kidneys and liver are great, and that he has the heart of superman. This last one makes me especially happy because I know all too well what it's like when that particular area isn't working. I can say this because each time I look over at my beautiful, motionless baby boy I know that my own heart is broken.