Snow Kisses

It's snowing today.  It's one of those really pretty snows that would have sent you straight to the back door in the kitchen, begging to get out and play.  I would have bundled you up to the appropriate degree of "mommy ridiculousness".  I would have gotten my own snow clothes on (which are always the leftovers because you have to make sure your family is warm first) and hoisted your marshmallow body up onto my hip.  We would have probably ended up just sitting in the snow and laughing at your brother and sisters.  You would try to crawl to them, but I'd scoop you up on my lap and kiss your red, frozen cheeks. I can almost feel it.

I wonder, what does it look like from where you are?  Can you see your siblings building a snowman for you?  They've been out there for hours, laughing and playing.  Do you get to play in the snow?  How I wish I could know the answer to that question, and not just have it be a "guess" from someone who's never been there and is trying to make me feel better.

Do you ever wish you were here, the way that I wish I were with you?  It scares people when I say that.  Sometimes they think that means I would do something to make sure I got to be right next to you.  But, they don't know how much I love you. They don't know how much I've learned about the gift of health and life.  I have too much left to do.  There are still people out there who don't know you, and I have to make sure they do.  I promise I will make it matter. I will make you proud.  I will teach others to love the way you taught me.  Some will not ever understand, but they'll at least hear your name.  I hope you know how powerful that name is.  It reminds people to hug longer, love deeper, and laugh more often.  Do you know how precious that is?  Do you know what it means to me to hear how you've changed lives?

So, enjoy the snow today, baby.  Watch your brother and sisters if you'd like, or build your own snowman with Pa.  I promise to try each day to be less broken.  I'll try to imagine you enjoying a pain-free body.  I'll cry more for myself and what I've lost than I do for you and what you would have never had. I'll try to enjoy the snow.  And now, I think I'll go to the kitchen door and close my eyes and kiss your frozen, red cheeks.

This Woman

There is this woman.  She's not necessarily "new" around here.  I had seen glimpses of her a few months ago, but her appearances were brief.  Now, she never leaves.  Her eyes are hollow and empty, her smile never sincere.  She looks haunted and confused.  But, also wise in ways that no one wants to be.  She drifts from room to room performing mundane tasks, and can actually be quite proficient at times, which is strange considering she is only a shell of a being.

I've seen her go into his room.  I've seen the way she drinks up any trace of him while standing among his things.  I've seen her go through every piece of clothing, hoping for the smallest whiff of life left in the fibers.  She holds them to her nose and breathes in deeply.  She's often disappointed, but every once in awhile there is a brief moment of recognition.  It quickly turns to nostalgia and she moves on to the next piece.  I've seen her glance in the direction of his toys with a look of pleasure mixed with pain.

I try to think of ways to take that pain from her.  Sometimes I think that I can "trick" her into thinking about something else.  Perhaps if she could come up with a hobby, a goal, a purpose, that might make her feel better.  And other times, I wonder if she just immerses herself in the pain, if it will in some way bring a moment of comfort.  I find pictures and videos for her, and allow her to dream for a moment that the beautiful laugh she is hearing is right there in front of her, and not some memory that she is terrified of losing.

Sometimes if I look really hard, I feel like I catch of glimpse of the woman she might have been.  I think perhaps she used to smile.  She has laugh lines around her eyes that suggest that possibility.  She has so many friends and family members trying desperately to surround her with their love and support.  Surely someone with that kind connection to other people was once someone worth connecting to, right?  Even if she were that person at one time, I don't know that it's possible that she'll ever find that again.  Something terrible has happened to her.  Someone has sucked the air from her lungs and the slowed the beat of her heart. She functions only to barely survive.

I've seen her hold her husband's hand. I've seen her hug others when they approach her.  They seem to be both trying to provide comfort and find it at the same time.  She follows through with the motions, but looks more empty each time.  It isn't that she doesn't care for these people, or that she loves her husband less.  The touch of a another human being doesn't hurt, but it also provides little comfort.  In fact, it's the "nothingness" she finds in human contact that scares her the most.  

So, how do I help her?  How do I remind her to participate in the life that goes on around her?   How do I fill her lungs with air again?  How do I glue something that's shattered?  I'm pretty sure than even if I could, I would never find all the pieces.  I suppose at the very least, I'll just stop looking in the mirror.

Easton Flies

The first time I heard your voice, my tears of joy did fall

Later I would learn it was your first battle call.

Each day you fought to be here, we loved you more and more

You wore the costume of a little boy while inside you waged a war.

Dark hair in perfect ringlets, the softest flowing curls

Eyes of purest blue

Too much beauty for this world

We can ask the same old questions, and even wonder why?

But we've always known the answer...Superheroes fly.

The sweet sounds of happy squeals

And all animals say "moo"

That piece of my heart that's missing

Is the perfect shape of you.

Dark hair in perfect ringlets, the softest flowing curls

Eyes of purest blue

Too much beauty for this world

We can ask the same old questions, and even wonder why?

But we've always known the answer...Superheroes fly.

Empty arms have never been so heavy

A thousand tears we cry

But you were never meant to stay here

Superheroes fly.

Punching Santa

If you're a fan of Kubler-Ross, and you're keeping track, I'm now officially pissed off.  I'm raging mad.  Furious.  I'm so angry, I've envisioned actually punching someone in the face.  The actual face doesn't really matter.  The punch is the point.  I would do it with passion and purpose.  I would use every ounce of rage and REALLY make it count. And let me just tell you how much Christmas is helping with that...not so much. I'd punch the guy in the red suit, if given the chance.

Today I had to go to my kids' Christmas parties at school.  I knew I would have to do it because they needed me to be there, and I want them to know that, no matter how broken I am, I WILL show up.  But, wow did it suck.  That's right, being around little children excited about Christmas sucked. First of all, anytime I leave the house I feel like I have a bulls-eye my forehead.  I see the looks, and then the darting around of eyes because people are unsure if they're supposed to be looking in my direction.  And the thing is, I totally get it.  It's like trying not to look at a wreck as you pass by on the street.  You know you shouldn't, but you just can't help it.  It's human nature.  It just feels especially shitty when you realize that YOU are, in fact, the "wreck."  

All I could think today, as I walked around from room to room, was that he'll never be in these classrooms.  He'll never make a gingerbread house in preschool.  (I'll always only have three of those in my house).  He'll never learn to carry a tray in the cafeteria.  I won't get to watch him stumble over words and then jump up and down with excitement as he reads his first book.  He'll never know what it means to be loved by Mrs. Mak.  I've already experienced my last "first day of Kindergarten", and I didn't even realize it.  I didn't even get to complain about it like everyone does when they know it's their "last."  I didn't get to obsess for the last year of stay-at-home-mommyhood about what the hell I'd do with my life when my last child goes to school.

One of the craziest parts of the anger stage is that sometimes I find comfort in certain things, and then someone else can say it and it makes me want to pull my hair out.  For instance, hearing that my son is "now an angel" should be this beautiful, comforting image.  Instead, sometimes it makes me want to scream, "BUT HE ISN'T HERE!!!!"  I want him here.  Right here next to me.  Not in heaven.  Not with Jesus.  Not with other loved ones.  I am his mom.  How can being anywhere else be more important than being with me?  I know this sounds bitter and ungrateful, but it's the truth.  It's what I'm feeling.

I miss him so much. I actually physically ache.  It hurts, and I can't make it stop.  That pisses me off, too.  One more thing I can't freaking control.  I also get pissed that I am no longer one of those people who thinks that bad things won't happen to them.  But, I know that NO ONE is exempt from this type of pain.  Some people lose children to car accidents, some to disease, and still others to a million other reasons.  The truth is it doesn't really matter.  It's all unbearable, unavoidable pain.  

I realize that I have several more "steps" in the grieving process, and some are going to be prettier than others.  But, I have to write about them all.  They all matter, and they will all be a part of this.  I hope that I don't lose friends along the way, and in that spirit, I'll do my best not to punch Santa.

Know Code

NO CODE.  Every member of medical personnel involved in direct patient care will know what this means.  It can be signified with a special armband, or simply written in a chart. Basically it means the patient and/or caregiver is refusing CPR in the event of cardiac arrest.  But, it is so much more than that, and I want medical personnel, the world over, to know what it actually represents.  I call it the "know code."

The "know code" is what I did with my son.  They may not have been aware at the time, but I wasn't about to let anyone take care of him without KNOWING him. He was in a coma for a majority of the time and very few of them actually got to meet him although they cared for him several times over the course of a month.  It didn't matter if it was the attending physician or the housekeeper,  I shoved my phone full of videos in the face of anyone who walked in our room.  If we were going to be making impossible decisions about his life, they were going to know what was at stake here.  I wanted them to know that I wasn't losing a blood pressure and respirations.  It wasn't just going to be bradycardia and eventual asystole.  It wasn't going to be a decision I would be coming to lightly.   Because what I was losing was a belly laugh.  I was losing an ornery grin and laughing eyes.  I was losing crazy, infamously curly hair. I was losing the little boy who struggled to talk, but said "Momma" with the greatest of ease.    My children were losing part of them.  My husband was losing a "Mr. Brown Can Moo" buddy.  My father was losing his recliner partner.  He was losing his Bubs.

So, walking into that room and telling them to make him a "no code" did not come easily.  It broke me.  It turned my body inside out and upside down.  The person saying the words was the nurse inside me.  Meanwhile, the mother was SCREAMING at the top of her lungs at the inevitable loss of her child.  It was a war within myself.  I knew the nurse had to win, but the Mommy wasn't giving an inch.  That part of me tried to rationalize that I would take anything that came back to me, no matter how dire the circumstances.  The Mommy part loved him so much that I felt it difficult to breathe at even the thought of giving this type of permission.

Then something incredible happened.  While I thought at the time that the nurse inside was in charge of this part, I realized that the Mommy would always win.   The very part of myself that loved beyond measure was the driving force behind the final decision.  And although my exact words were, "Please make him a 'no code,'" I knew in my heart that we had reached these incredible people on a very human level. They wept with me.  They felt the sting and pang of loss as well.  My son had once again proven that his natural pull on the human heart was nothing short of miraculous.  MY son was KNOW CODE.

Death In Real Life

Did you know that death is real life is altogether different than the one you've thought about time and time again?  Think about how many times you've considered the possibility of death.  Everyone has done it, even if only subconsciously. It floats in and out of your thoughts just like anything else.  It can be triggered by a recently tragic event, or just while grocery shopping one day.  You conjure up some story in your head, and imagine, for the briefest moment, the feelings that would be associated with that.  But, luckily, death isn't something that happens to you.  Not really, anyway. It's this really sad and awful thing that happens to other people.  Meanwhile, you can get back to picking out that grapefruit and dismiss the idea until the next time.

Death in real life is personified in a way that makes you want to attack it.  You want to beat it over the head again and again until the screaming stops.  You want to squeeze the breath from it's lungs to ensure that it never comes back.  But, you can't because it's everywhere.  Perhaps if it were just in the walls, in the floor, in the air you breathe, you'd have some way to combat it.  But you can't, because it's in YOU.  Did you know that death in real life is forever?  It isn't just for that brief moment in your brain, or for a week, or a month, or a year.  It's forever.  Unless of course you believe in a life hereafter, but even that isn't a comfort on some days.  It's too intangible.  In the words of my 5-year-old, "I know that he's all around us, but I want him right here in front of me so I can play with him."

It's in the toothbrush hanging on the mirror next to mine.  The one with the Sesame Street characters that hangs in it's little cow holder.  It's in the smell of baby lotion that now serves as my only perfume.  It's in the ache in my chest in the middle of the night when  I've forgotten for the briefest moment as I climb the stairs and look over into the empty crib.  It's in the memorials that line my house.  They're beautiful and magnificent, but they are also death.  It's in the flowers sitting next to a high chair that will someday be removed from our kitchen forever.  The carseat in my van, with the crumbs still clinging to the cushion, is left to remind me of the life it held, but is also, inextricably,  a constant reminder of death.  It's in the automated emails I receive daily from publications that sold his medication.  I never open them, but I can't unsubscribe because that's one step closer to erasing him.  I can't move any of his toys, because what if he was the last one to touch them?  What if his fingerprint lingers here in my house and I feel like it's the only thing I have left?

It's my husband going to work, and my kids going back to school and the sudden panic as I pull away and realize that I'm alone in the van.  How can it be such a surprise when you knew it was coming? How can it be unexpected when it's the very thing you've been dreading for a week?  But still, it stings.  That's when you find the tears you thought you'd completely run out of.  It's going Christmas shopping and reaching for the little toy train, but then letting your hand fall before even touching it because you know that there is no reason to put it in the cart.  It's seeing other babies his age recognizing the excitement in the air and considering hugging them for a moment, but knowing that it will never ever feel the same.  They won't smell the same.  They won't wrap their arms around your neck in quite the same way.  And it will only last a second anyway, because they will eventually pull away and look for their Mommy.

This is the day when everything feels like it's "over."  The day when everyone goes back to life.  I don't know  how to do "living" when death is everywhere.  Is it even possible? I suppose someday it will "get easier" as I keep hearing, but since I know that death in real life is forever, I think I'm going to have to learn to let living and dying grow right alongside one another.  They're going to have to become friends, because, for right now, neither one of them is going away.

Heavenly Homerun

Some call them shooting stars.  Science calls it a meteor shower.  But, I know better...

Easton Scott Zanger, named for his parents' favorite pastime, had several limitations in his life.  He eventually worked his way back to being able to crawl, but he never learned to stand on his own, let alone walk.  However, one thing that our son could and would do willingly is hit a ball off of a tee.  He steadied himself by holding onto his Daddy's hand, and gripped the bat with the other.  He'd pull it back as far as he could and knock the ball off the tee with a little squeal.

It began to be painfully obvious that Easton would never hit a ball on his own.  It's one of those things you imagine your child doing when you're carrying them during pregnancy. It's also one of the things that many parents have to give up on early in their child's life.  Ironic, isn't it, that a child named for a bat couldn't even lift one on his own?  Until now.

Tonight we spent some time at my parents' land.  It's as close to heaven as one can get. We feel closer to him there.  The kids call out his name and wait for neighboring cows to answer back, because cows were The Beast's favorite animal (and the only sound he would make).  We'll be there often over the next few weeks, months, years.  This time was especially wonderful because one of my "sisters" and I laid a blanket out on the grass and just watched the stars together.  Today happens to be her father's birthday.  He's been gone for ten years now.  And while we watched shooting star after shooting star dart through the sky, I asked her if she thought Easton had met her Dad.  She said, "Yes, that's them playing baseball up there."

She was RIGHT!! I hadn't even thought about it that way. Fastballs all over the galaxy.  And MY son was up there taking his first swings. Standing.  Alone. Learning what it means to dig in, and take a practice cut.  Pulling his cap a little lower over his eyes to shield them from the sun.  Hearing the sound of the fastball as it whizzes by.  Noticing that familiar "thwack", smelling the leather, and tasting the gritty dust in his teeth as the ball hits the catcher's mitt.  He winds up again, and just as he saw when he was here, another curveball comes his way.  But this time, he's ready.  Remembering what his Daddy had shown him.  Bracing himself for the hit.  And when it happens, it grabs the sweet spot.  We know what that hit feels like.  The sweet vibration of the bat, the beautiful sound of a seemingly effortless base hit.  He rounds first, feeling like he's flying (and maybe he is), he digs his spikes into the dirt and flops down at second, wrapping his arms around the bag.  His first double.

My baby's first ballgame, and I had a front row seat.  Let me know when you play again, Son.  I'll be the one down front, waiting for that first heavenly homerun.

Breathing

I'm not going to do this right.  But, I'm also not going to do it wrong.  I have to keep reminding myself of that.  People say, "what are you doing out?  Why are you here?"  The truth is that I don't know. The truth is that sometimes my body just takes me places for no particular reason at all and sometimes I am paralyzed with the pain and loss of my son.  In those moments, you won't see me.  You won't be there to watch me turn inside out and upside down, and scream so loud that my throat hurts.

Sometimes when I'm outside my house I find myself wondering, "Do I look sufficiently miserable today?  Do people recognize that my pain is right at the surface?  If I laugh will they think that I'm better and that I've moved on?"  What is a mother who lost a child supposed to look like?  I'm still me, you know?  I still move the same way.  My hair is still the same color.  I still put clothes on everyday, although sometimes I lack the energy to get out of bed.

Every person I've talked to, who actually "gets it", says that it will take time.  What I want to know is where the hell is this "flying" time that everyone talks about?  "Don't blink or time will pass you by in an instant and you'll have missed it."  I say bullshit.  I say time is still.  Time is being lazy and trying to piss me off.  It's like I'm waiting for a pot of water to boil on a stove that hasn't been turned on.

I want to know when the burning stops.  When does the actual, physical ache in my chest subside?  When do I stop noticing little reminders of what will never be?  But, the thing is, I don't want answers to these questions, from anyone.  Because, honestly, no one knows.  No one is going to grieve exactly the same way I am.  No one else was Easton's mother.  And no one gets to put a timeline on my grief.

So, you're going to see me out sometimes.  And sometimes, you may not see me for days.  A piece of me is gone, and I've got to learn how to function without it. Right now, breathing is about as good as it gets.

Mud Puddles and Ice Cream

I know there are a million things I could be praying for right now.  Peace.  Comfort. Healing.  But, all I can think to pray for right now are mud puddles and ice cream.  I told you to fly.  To fly to Papa because he would be waiting to hold you, and you can let him for a moment.  Let him breathe in the baby shampoo that I put on your curls in those last hours.

 But then I want you to get up and run. Run forever.  Because you can now, baby.  There are no weak sides.  No seizures claiming your balance.  No need to hold onto anything as you go.  Just run.  And get dirty.  Find a mud puddle and get covered in it.  Roll around if you'd like and feel the coolness of it on your face.  Then get back up and run again.

When you do, you may find an ice cream stand.  It's ok if it's breakfast time.  Have all the ice cream you want.  It will not be the "special" ice cream you had to eat here.  It will not taste strange in your mouth.  It will be as if you are 10 months old again, and it will slide down your throat so smoothly.  You'll love it just as much as you did then.  Maybe more, because I'm guessing there are better flavors there!

And if you'd like to take a break from running sometime, you can climb the trees.  You can swing from the branches and then flop down on the grass to do a little fishing.  Papa loves to fish and he's the best teacher.  He'll show you how to be patient, and how to take your catch off the hook.

When you've run, and fished, and filled your belly with ice cream, if you have a moment, I would love to see you again.  In  a dream, or any other way you'd like to show me that you're ok.  I'll be waiting for it, but don't feel like you have to rush it.  I can be very patient.  And, hold onto that piece of my heart that I gave you before you left.  It will fit right back in it's place when I see you again.

Red Eyes

"Mommy, when will your eyes stop being red?"

"I don't know."

"Why are they red all the time now?"

"Because a piece of my heart is missing."

"That makes you have red eyes?"

"I guess so."

"Will your missing piece grow back?"

"No, your brother took it with him."

"Then how will your heart work?"

"The other three parts of my heart are so strong that they'll keep it working.  Maybe even harder than before."

"Good, because I need you, Mommy.  I need your heart to work again."

"I know, sweet baby."  (And that's why I'll stay.)

What If

Today your eyes opened a little bit more, and with that comes so many emotions.  The first is the thrill of seeing something I've longed to see for so long.  The next, and nearly instantaneous feeling is fear.  Fear of the unknown.  Fear of what is to come...or isn't.  But for the moment, I'm going to pretend that none of this is happening.  Because I saw you for the briefest moment.  You looked at me, and I knew you were in there.

What if...

What if we get up and fly away from here.  I'll disconnect all the tubes and wires.  I'll carry you out the front door and we can go anywhere you want.  We'll read your favorite books, play your favorite games, and sing your favorite songs.  We'll pretend that they're all still your favorites.  We'll eat ice cream and just lie in the grass and look up at the sky.

What if I don't want to hear what the numbers mean anymore?

What if I never discover the result to THAT special test that could mean letting you go?

What if I don't WANT to let you go?

What if tomorrow, no one could find us, but we knew that we were exactly where we needed to be?

What if I have low moments where I wonder what I'll do with your clothes, or your toys?  What do I do with your toothbrush if you aren't there to use it?

What if you've touched so many people that you aren't allowed to leave?  Not just yet.

What if anger, fear, and fatigue replace rational thought sometimes and I stop reading and asking questions?

But, what if I'd never had the pleasure of meeting you?  Had never nursed you, held your hand, or sang to you?  What if I'd never known what it meant to bypass using a comb and just run my fingers through your beautiful mop of curl? What if we hadn't been given that second chance for me to get to know what an amazing fighter you are? I know "what."  I know that my heart would have a hole.  I wouldn't have known unconditional love from family, friends and strangers, as I do now.  People may not hug their children as often. The may not know to open their hearts in this way. I'm grateful for every breath you take, but if there comes a day that breathing is too much, you just let me know.  We'll have our secret conversation, as we've done many times before.  And I'll live with my "what ifs", because you've given me so many "I knows."

Our Rainbow

I'm not exactly sure why I feel so compelled to write this at the current moment, but as you know, I'm not one to exactly "filter" my thoughts, so here I go!

Most of us have heard the expression, "It takes a village to raise a child."  I've never been more convinced of that in my life.  Children may reside with their relatives, but I assure you that their "family" extends far beyond one living room.  So, in that spirit I'm asking you to consider helping to add a new member to "our" family.

A special organization called "Reese's Rainbow" is about to become instrumental in bringing one of our children to us.  She will live with her parents and two sisters, but she'll need our help to get her there. Chris and Jill Reffett already know that this is their daughter.  That was the easy part.  They will be counting on us to help with the leg work.  And, I don't know about you, but I can't imagine anything more wonderful than getting to see a child united with her "meant to be" family.  And I don't just mean the Reffetts. Obviously they will have the awesome experience and responsibility to raise her as the loving and compassionate woman that all of their girls are destined to be.  But WE will get the opportunity to love another baby!!  I don't know if you've noticed, but this community doesn't just pass you on the street with a half-hearted smile and a wave. They lift you up and wrap their arms around you and hold you on your darkest days.  Let's be that for the Reffett family.  Let's make her "our rainbow"!!