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Monday, December 31, 2012

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.

Monday, December 24, 2012

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.

Saturday, December 22, 2012

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.








Friday, December 21, 2012

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.

Tuesday, December 18, 2012

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.

Thursday, December 13, 2012

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.

Wednesday, December 12, 2012

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.

Monday, December 10, 2012

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.

Sunday, December 9, 2012

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.)

Monday, December 3, 2012

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"!!

Monday, November 26, 2012

No Hero

I've lost him twice now, the son I knew.  The first time I was filled with rage most of the time.  I asked 'why' so many times I've lost count.  I cursed and hated, screamed and cried.  I felt sorry for myself on several occasions and even sorrier for my baby. It was so hard for me to see children his age doing absolutely normal things.  I'd watch parents chase their kids around the parking lot at school with that look of fatigue and annoyance. I read countless facebook status updates about the toils of potty training and temper tantrums.  And I felt the burn each time.  I felt the heat rise within me, fighting against that part of me that was saying, "They SHOULD be complaining about these things.  This is normal.  This is ok."  But in those moments, I don't care.  I'm not rational, and I don't particularly care to be.  I say this because I want people to know that I'm no hero.  I don't stand here and pretend to have all the answers (or any, for that matter).

This time is slightly different, and it has been since the very beginning of this chapter or our nightmare.  First of all, we were only hospitalized because I felt like something was "wrong."  A couple of days into our visit, I felt sort of foolish because he was doing so well.  Obviously as the week unfolded I realized that listening to my gut was the one of the smartest things I'd ever done.  Secondly, I reacted differently as I watched seizure after seizure take my baby further and further away.  Instead of being just afraid and silent, I rocked him and sang to him, telling him that it was ok and I was right there.  Last time, I'd let him lie down on the bed and I held his hand while they gave him drugs and he slipped deeper and deeper into "sleep."  This time, I held him until the last possible second.  Until they came at me with the intubation tube.  I rocked him, and smoothed his hair and told him I loved him over and over.  I cried too, of course, because I knew all too well what was coming.  But, I did NOT let go, not until they made me.  In this moment, I'm grateful for that difference.

We also happen to have had different circumstances this time, and although I've had some lousy days in my life, I wouldn't necessarily have been able to tell which was my lowest point.  Now, I can give that answer and I realize that even as I write this, that could change.  I've now been to "that place."  I thought I'd been there before, but I was mistaken.  You see, there is a fine line between struggling to watch your child suffer and telling him that it's ok to let go.  I never thought I'd be able to imagine that, let alone say it out loud.  But, I've been there and it's real possibility that I'll be back.  I understand what it means to be in that moment.  Where time stands still and races around you on all sides at the same time.  You notice everything, from the heart beating in your chest to the antiseptic smell of the room, but you don't realize it until after you leave the moment because your brain is currently flying.  You run through so many "what if" scenarios and "how to go on if" questions.  And while all that is happening, you somehow channel that part of you that loves this person so much you could burst.  And that's the part of you that talks to him, that tells him it's ok, that you're right here and you aren't leaving.  That's the part that takes over and drives when everything is spinning out of control. You get to some sort of insane auto-pilot mode.

Getting to this place has made me realize that although this is hellish, it's also taught me so much more than I ever would have learned on my own.  I know what it means to run out of tears.  I know what it means to love beyond measure. And I know how important it is to share that, because you never know who might be reading and needing to feel like someone understands.  I've been asked several times why I update people on my son's condition.  Why do I write blogs about his illness and our journey?  Am I afraid that it will be on the internet forever and maybe he won't want that someday? I've asked myself these same questions.  But I realize now that this child doesn't belong to just me.  He's beauty and light, all by himself.  He's love and compassion.  He's grace and kindness.  He brings people together and shows them how to open their hearts.

I've laughed at the idea of WWSZD, but I also find myself answering the question sometimes.  What will I do?  I'll cry.  I'll scream. I'll crumble.  I'll get angry.  But, I will also smile.  I'll laugh.  And I'll hold my son, and I'll sing to him.  I'll smell his hair and read him his favorite books if I'm given that privilege.  I'll cherish the moments we have because they are a gift.  Like I said, I'm no hero.  I'm just a mommy who knows what it means to lose her child and be given the chance to love him again.

Tuesday, November 20, 2012

"Other" People

The social workers and the "Don't Jump Off the Bridge Team", as I like to call them (actually called PACT, but I can never remember that and the other name is so much more fitting), keep telling me not to take on "other" people's pain.  I ask them, daily, how that is humanly possible.

 First of all, it surrounds me. And secondly, I don't feel like they're "other" people.  Their pain is mine and mine is theirs.  We may have only just met, or as is often the case, have never even spoken words aloud to one another.  But we know.  We know in places that we're scared to talk about that each of us is fighting a battle here.  We have learned to decipher between the newbies and the lifers.  Parents new to our world often have red, tear-stained faces and questioning looks.  They cry loudly and openly.  For those of us who've been here more days than we can count, the look is more like stone.  We've cried more tears than we'd ever imagined possible and lack the energy to produce more tears.  We hear "good" news and fear reporting it because bad news always seems to follow. We've been places no parent should ever have to experience.  We're drained, shredded, and turned inside out.  But, it's those of us who get to be beaten another day that are the lucky ones.

I see children with bald heads and beautiful smiles.  I see the ones who can barely open their eyes, but when they do, show you a fight like no other.  I see babies running around units acting perfectly normal, and you know they're headed in for the surgery of their lives the very next day.  My mom heard a 9-10 year old girl walking behind her mom saying, "But, Mom, I just don't get it.  I need a heart right now, if I'm going to get better."  She wasn't whining or complaining.  Just asking her mother why they can't get her the organ she needs.  The mother looks straight ahead with that steel will and continues walking, because what other choice do you have?  

So much pain and sadness.  So many tears and unanswered questions.  So, I ask you to tell me how I'm supposed to forget about "other" people's pain?  It isn't strength or some amazingly  kind and generous nature.  It's just the reality of this place.  It's the need to connect with other human beings.  And above all else, as always, it's the human heart's incredible capacity to love.

Monday, November 19, 2012

Love Enough for Two

Books are his favorites. He likes watching Mickey and Bubble Guppies and Baby TV.  He points for things he wants, and smiles and nods when someone understands.  He crawls over and pulls himself up to be loved.   And he has a special preference for his Momma.

There are so many possibilities in the next few days, and each possibility lends itself to a different set of worries.  For awhile those worries included, "will he ever walk?  will he be able to have a job, or live on his own?"  Recently they changed drastically to, "how do I walk out of this hospital without that baby in my arms?  how do I go into my house and walk over his toys, brush my teeth and not notice his toothbrush hanging in it's holder on my bathroom mirror?  what do I do with his clothing, his diapers, his food?  how do I create a life that isn't centered around measuring, cooking, therapy, snuggling?"  I don't know the answers to any of those questions, but I do know that the need to answer them is still a very real possibility every second of every day.

I have no idea why this child is still here.  Nothing in my scientific, medical background can make any sense of it.  But, for whatever reason, he's still fighting.  If he gets to come back, who will he be?  Will he remember Mickey?  Will he eventually know that he was once able to crawl and can he get back to that place?  If I close my eyes and listen very carefully, I can still hear him saying, "Momma, Momma".  I'm so very grateful that I had a few months of hearing that beautiful sound.  It's one that I'm incapable of forgetting. And I'll hold onto that because I don't know that the child who wakes will remember my face.  I know the little boy who left me last week thought that I hung the moon, but I've been here before and I know that it's possible that he won't remember me.  I remember him, and I'll love enough for both of us.

Wednesday, November 14, 2012

Fear

Fear.  Let's talk about fear.  I used to think I "feared" many things.  I didn't necessarily like taking my kids to get vaccinations because I didn't want them to hurt.  I hate elevators, and will take the stairs every chance I get whether I'm headed to the first or fifty-first floor.  I'm afraid of heights in some instances.  Every person has a certain amount of fear in becoming a mother, I suppose I did too.  But what I'm currently experiencing is so far beyond any definition of fear that I've ever considered.

Each time I wake up, I'm reminded of where I am.  Lights flashing, machines beeping, parents crying.  These are the sounds of our world.  Certain machine noises can send my stomach lurching to my throat in an instant.  When that happens I have to grab hold of anything near me and keep myself on my feet.  I have to put my hand to my mouth to keep from vomiting.  This happens approximately once an hour.  I've learned to eat as much food as I can when my body is allowing me to swallow, because I have no idea if I'll have that function an hour from now.  Sometimes it's just gone.

When I've left the bedside for any amount of time, I feel as though walking back is like walking to your own execution.  Although they never actually finish the job.  It's like someone is saying, "hurry up and get back to the place where you're blindfolded and someone gets to freely punch you in the gut every 20-30 minutes."  You get beaten to within an inch of your life every single day, but are left with just enough to make you come back for more the next day.  And you do it, because you have to.  Because failure to show up and hold a hand is not an option.  Because your fear is not as important as his life, or his possible fear.  Because even though it turns you inside out and upside down, you know that you're going to be right there, standing on two feet for whatever comes next.  Because that's what you promised him the day he was born.  You promised to love him and to BE there.  And so that's what you do.  Each day, you breathe in and you breathe out.  You put one foot in front of the other, and goddammit...you show up.

Friday, November 9, 2012

Stinky Face Strikes Again

Sometimes I wonder where my next ounce of strength is going to come from. As I entered the picu doors again during Easton's current hospitalization at slch, I felt that fear in the pit of my stomach returning like an old friend. Ahhh, yes. This is the part I remember. The part where you try to continue breathing while doctors rattle off issue after issue. The part where you try to avert your eyes from the children on mechanical ventilation, and those with bald heads, but know that you'll always take that glance in the end. Because you know that you're going to connect with them on some level. I remember all of it, and although we are different this time around, the same nauseating fear threatens to break me on a nearly hourly basis.

But somewhere along the way, somehow new strength is found. It can be from an encouraging test result or from the kindness of a complete stranger. I'm in hell again, but it's amazing to me how many angels seem to be here. The first was our nurse on the Neuro floor. Her quiet confidence and encouragement got me through the day, and then when things started looking worse and we had to get to the picu, she found me after her shift and said, "I just want you to know how amazingly in tune you are with your son. You got him the help he needed exactly when he needed it." she may never fully understand the weight of her words, but I'll carry them forever.

Then there was the time that my charger for my phone wasn't working and I went to find one in the hospital. I couldn't find one to match and the security guard helping me look said, "Will it work with an lg phone cord?" I admitted my ignorance when it comes to most electrical devices and she says let's try one more. She took me to her station and pulled out her personal cell phone. The charger worked. I said, oh thank you. I'll come back down and get my phone after it has charged a bit at your station. She looked at my parent tag and said, "Girl, you in the picu. You gonna need that phone. Just bring the charger back down when it's done charging. I'm here until eleven." I thanked her profusely while trying to walk away before she saw my tears. All of the bullshit hatred and hypocrisy in this country over the last couple of months didn't matter. Love won again. I assure you, that it always does, and happens to be extra special when it comes at the hands of a perfect stranger.

Next, there is Phyllis, who works at the front desk and gives me my new parent tag each morning. Now, she could ask my name, print the tag and be fulfilling her job requirements. But that isn't the Phyllis way of doing things. Every morning I come down before I even speak, she says, "and how is miss Shannon today?" She remembers my name. That is incredible considering. The hundreds to thousands of people she sees a day. One particularly bad morning, I walked to the desk saying nothing and when she asked how I was, all I could do was look at her. She sort gave me a sad smile and said, "I get it, you know? I understand your pain, fear and fatigue. My husband had a stroke in 2001, and he can do nothing for himself. I'm his care provider. Sometimes the worst part is that his mind is completely intact, but he can't speak even though he understands everything going on around him. So I do get it. I hope today is one of the good ones, Miss Shannon."

And then if you're really looking for some inspiration, you go to the Child Life playroom.  There you'll meet many volunteers led by one of the most inspiring people I have ever met in my life. The very first thing that everyone notices about Kelly is her wheelchair, but I assure you it will not be the last. She and Easton have a sort of kindred spirit connection that I just love to watch. She plays with him and encourages him when he's struggling to use his right hand. Last week she said, "Oh, it's my lefty that gives me trouble, but if you keep working it will come around. I wasn't even supposed to be able to eat without a device of some sort. The docs told my mom to institutionalize me. But, she's a nurse and she said there was nothing wrong with me, and she eventually told me the same thing. I now live on my own and I have a master's degree from Washington University. When I was in second grade my teacher was trying to get me to type because they thought my hands would never be capable of writing. When I learned to write, I wrote a letter to that teacher. We still talk today, and she apologizes for putting limits on me.  But I just thank her because telling me that I can't do something just fuels the fire. " Like I said, what wheelchair?

And finally the source of all of my strength comes from a curly-haired, cherub-faced baby boy today after a particularly bad seizure, when all I wanted to do was climb out the window to get away, instead I climbed into his bed. I held my blue-eyed baby to my chest and recited our Stinky Face story to him like neither of us should have a care in the world.  I made silly noises and changed the pitch of my voice as I mentally turned each page.  Then, from some place more beautiful than any other in the world, I heard the faintest rumblings of the greatest sound on earth. A baby belly laugh. This child who could not even find the strength to smile couldn't hold back from laughing at his goofy Momma. And that's when I knew. I'll never meet a stronger person. I'll never know someone with more determination. He had reminded me that the race is not yet over. And one way or the other, we're gonna cross that finish line together.




Wednesday, October 10, 2012

Just Wednesday

Today I had one of those moments where you're reminded that once you become a parent the term "just Wednesday" no longer exists.  My oldest daughter, Addison, is 7 years old and decided that it was time to get her ears pierced.  She has been hounding me about this for a month, but we've just never found the time. We're a busy family.  Someone always has a practice or a game, etc.  But, tonight was an "off" night and so I asked her if she'd like to go have it done while we had time.  Of course she jumped at the chance, and practically skipped all the way to car.

However, I noticed when I looked in the rear-view mirror that she wasn't quite as certain as she'd been when it was only a possibility.  Now that it was really going to happen, she was having second thoughts.  I asked her if she still wanted to go, and she asked the same question we all ask, "Will it hurt?"  I really try to be honest with my kids, so I told her that it would hurt some, but if she wanted it done she'd have to endure a little bit of pain.  Then the next question, "Will you hold my hand?"  I absentmindedly said "sure" as I reached to answer my ringing phone.

We got to the mall and rushed to the store because we had a few more stops to make and I wanted to "get this done."    Addi got to pick her own studs and of course she picked the expensive ones. Go figure, my diva daughter wants the glitter butterflies.  Ok, fine, butterflies it is.  I filled out the paper work as the salesgirl set up her station and Addison climbed hesitantly into THE CHAIR.  She squeezed my hand and shut her eyes tightly.  In they went, no problem.  Well, that was quick and painless...or so I thought.

Addison jumped down off the chair and admired her new look in the mirror.  The salesgirl said, "You did so great!  And now you have your ears pierced.  They'll be that way forever!"  Wait...she's right.  How did I not see this coming?  One minute I was trying to scramble and just get this over with so that I could continue on with my "to do" list.  Now all of the sudden I was the one with the deer in the headlights look.  Forever.  Yes, forever.  This was one of those moments that my daughter would likely remember for the rest of her life. Her entire future flashed before my eyes in a matter of seconds.  I imagined all of the reasons that she would be putting earrings in her ears. Prom,  maybe a job interview, a night out with girlfriends, perhaps even  some sentimental heirloom worn in honor of a loved one on her wedding day.  This day deserved much more credit than I'd originally given it.

I looked at my beautiful daughter and smiled, told her how proud I was of her bravery, and although I could imagine her as a woman I was suddenly overwhelmed with gratitude that she'd chosen the glitter butterflies.  For now, in this one special moment, she is still my little girl.


Tuesday, October 2, 2012

"One Upping"

Ok Ladies, let's cut to the chase.  Who is our worst critic?  Who are we killing ourselves for when we're trying to volunteer for every club, lose 20 pounds, make wholesome meals, get regular mani/pedis, and do it all with a smile?  It isn't our jerk of a boss.  It isn't our husbands/boyfriends, etc. It's us.  WE are the problem.  I'm saying we need to work on being the solution.

I recently had the pleasure of a rare "girl's night out" with one of my best friends.  We both changed outfits at least twice (because that's what we do) and upon making her decision, my friend announced that she was still reluctant to wear this outfit because she "didn't bring the right purse."  Now, I (being a bear of very little brain) have no idea what kind of purse she would have needed.  I happen to be one of those women that uses the same purse all year long (THE HORROR).  Well, at least until my mother and sister hand me a new one and demand that I change it.  But, I do know that for many women, the "correct" accessories are important.  However, correct me if I'm wrong here, but we were going out to find men, right? (For her, I know that I'm married, people. For the record, that doesn't mean that I don't want to look hot, too).  I don't know too many men who would have any idea what kind of purse she should have been carrying.  And trust me, if you'd seen how great she looked you'd know that they probably wouldn't even have been able to tell me she was carrying a purse.

I also had a great conversation with another friend (school mom friend).  We were talking about how overwhelming it can be to be a parent.  She admitted that there are times that she could just cry because of the stress and pressure and chaos of life.  I should have expected this I guess because we're all trying to do the same thing.  Survive.  However, this is one of those moms who comes to school every single day looking adorable and always has a smile.  I seriously have NEVER seen this woman not smiling. And you know what I couldn't stop thinking about after that conversation?  That in all the time I've known her and been awed by her, I've never actually told her.  And why shouldn't I?  The truth is we're all going a little crazy from time to time and who knows what a compliment such as that would have done for her day.

My neighbor/friend/fellow sweatpants guru, recently sent me a text message simply telling me that she was grateful for my family.  She even added that I had very well-behaved children.  Such a simple thing to do, and it changed my whole day.  I vowed then and there to do things like that more often.

 So, then, why do we do it? Why do we torture ourselves by pretending to be the "perfect woman"?  To impress other women.  And why do we have to impress other women?  Because women are constantly sizing each other up.  Comparing themselves and everyone else in the room to THIS woman or THAT woman.  We've got to stop doing this.  We're our own worst enemies.

I'm making a proposal that we make a conscious effort to encourage our fellow sisters.  Compliment her hair, her clothes, her children's good behavior.  And, yes, even compliment her on her recently increased exercise regimen.  Instead of peeking out the corner of your eye at the "super peppy bitch in spandex" who's running down your street, maybe roll down your window and cheer her on.  You have no idea what her day has been like.  Maybe this is her escape from a difficult reality.  Encourage her.  Give her a reason to keep going.  I'm not saying that we should stop one-upping each other as we all love to do.  I'm merely suggesting that we put a spin on it. The next time you're thinking about it, maybe you be the one doing the lifting.

Thursday, September 13, 2012

Life Power

This is how illness is supposed to go:  Get sick, go to doctor, buy medication, be slightly inconvenienced for awhile, and complain about how "bad things always happen to you."  But, what happens when the "bad thing" becomes a way of life?  Let me tell you, LOTS of things happen, but all aspects are not necessarily negative.  Obviously I've encountered this life changing event.  I think we're all on the same page there, but the incredible part of it is that with all of the scary, awful, stomach-turning pain, positive things have been creeping into my life right alongside them.

I'm my son's primary caregiver, which probably isn't that surprising given the fact that I'm a stay-at-home-mom for the time being.  However, my role has sort of been shifted from it's original position and now I'm also my son't primary physician.  Of course we all have our own ideas about what's best for our kids as far as their health goes.  We encourage exercise and eating right, and we generally seek the help of pediatricians and friends alike for certain childhood illnesses.  Sometimes we decide to treat as the doc orders and sometimes we just let it run it's course. But, in a "serious" situation (i.e.-anything that cannot be cured with a band-aid and a kiss) we take our children to the doctor and follow orders.  Even in the scariest of situations, in the back of our minds, we KNOW that someone will help us.  Someone will have the answer.  It might be tough for awhile, and might even mean a few nights in a hospital running some tests, but ultimately the answer will come and life will again return to status quo.

This is no longer the case for me and many parents like myself.  I no longer expect answers.  In fact, I doubt their existence. And, admitting that can be very scary.  My husband and I are in this together, but even he will admit that my perspective is different because I'm with Easton all day long, and I make most of the medical decisions.  And honestly, I wouldn't want it any other way.  The physicians we work with are all amazing, but who has more of a vested interest in this child's life than me?  No one.  So, I get the job.  And, I'll take it, but that doesn't mean that it doesn't get difficult.  I tried describing my life to my husband today.  I told him that it's sort of like running on a hamster wheel, and just out of reach is a projected image of  a glorious finish line.  People are cheering and everything you ever hoped would come true is right there in front of you. Beautiful, glowing words like, "progress", "promise", "future", and "hope" dance before you and urge you on as long as you can just keep going. Unfortunately, you can never get there while you're on the wheel.  You think about just stopping sometimes.  Just giving up, and saying that enough is enough.  But, if you do, the picture of the finish line is gone.  The words disappear and it's dark and scary and you have nothing lighting your way.

As exhausting and depressing as that sounds there is a part that you may have missed.  Despite the fear, I recently decided to wean my son's seizure medication.  That probably sounds like a good thing, but it's one of the most gut-twisting, awful decisions I have to make because the doctors don't agree with me.  They believe in the medication and it's abilities.  I don't fault them for that at all.  They've seen it work.  The problem is that it isn't working for us.  My son has been through all kinds of medications and the truth of the matter is that this beautiful child has been seizing hundreds to THOUSANDS of times a day since April 30, 2011.  So far we've failed him on all attempts to stop them.  This fact has encouraged my decision to go another route, and it shakes me to my core to think that what I'm doing may be dead wrong.  But, this is where the good stuff gets illuminated.  Not in the result, but in the decision-making.  By making the decision, I've chosen to keep fighting, to keep running on the wheel and I've never understood where that mindset originated. Where is this renewed strength (or maybe even blind stupidity) coming from?  People call you "strong", but you honestly BECOME this way because of your circumstances.  I'm only stronger than before because I have to be.  But how?

I've never been able to articulate that feeling of "strength."  However, today a stranger did it for me.  I decided to bike to the grocery store between my son's therapy sessions.  He was whining and complaining on the back of the bike, and the kid who couldn't possibly be called upon to perform any sort of fine motor skill during occupational therapy, had removed his own helmet and thrown it on the street three times during the ride!  As I walked the bike to the rack at the store, a woman looked over at my attempts to wrestle my squirming child from his seat and said, "You must have a lot of life power to be biking to the grocery store."  I smiled and acknowledged her, but as I walked past I thought about that term, "life power."  THAT'S IT!  It's LIFE POWER. We ALL have it.  The great news is that it can be distributed from person to person.  Sometimes we have a little more, and sometimes we have a little less, but we can lean on each other during those times.   My situation isn't different from anyone else's.  We all have our own crosses to bear, and we each use our own "life power" to get us through.  Some will have to call upon it more than others, but I assure you that those are the people who will have more of it to share in the long run.

Wednesday, August 29, 2012

Girl's Night Out

I realize that I already posted today, but in my little corner of the world, this has been one inspiring day.  Not only did my 2-year-old son take four steps in the water on his own, I also got to do some bonding with my favorite short women.  I'm going to go on record now and say that I'm guessing that there are fewer things in the world greater than sharing an impromptu frozen treat with your 7 and 5-year-old daughters.  I'm sure that some veteran mommas out there who have teenagers or grown children will tell me that they have some great moments of their own, but this has still gotta be one of the best.

I picked my oldest daughter, Addison, up from soccer practice and the baby girl, Morgan, was along for the ride.  I cannot tell you how many times I've experienced some of my best moments via the one-on-one car trip.  It started with Morgan as we were waiting for Addi to get out of practice.  She had wanted to ride in the front seat of the car (which is something that I've honestly never let her do).  Still, she asked and I said no, and when I explained to her that it was against the law, she gave this response: (keep in mind that Morgan's thoughts sort of circle the globe before she comes home with the ACTUAL reason she started speaking in the first place)...

Morgan: "Mommy, when I grow up I'm going to be an artist, a sign language teacher, and a person who gets to make up their own laws."

Mommy: "Oh, so you want to be a politician.  Ok, first of all, why do you want to be an artist?"

Morgan: "Because I want to paint pictures of pretty princess and put them in an artist book."

Mommy: "Fair enough.  Why do you want to be a 'sign language teacher'?"

Morgan: "Because, Mommy, everyone should be able to talk to each other," (pause for awww..how sweet..but then she follows up with the kicker). "The should be able to talk even though they are blind."

Mommy: "Alright (making mental note to explain deaf vs. blind at some point), and why do you want to be a politician and make up your own laws?"

Morgan: "Because, I would make a law that ALL kids get to sit in the front seat and big people have to sit in the back.  The kids can even drive.  ALL kids can drive...(here it comes)...even if they're blind." (REALLY need to have that conversation, and fast).

As if this weren't enough for one evening, she then starts discussing the fact that her cousin, Ava (5), wants to marry Justin Bieber when she grows up.  But, Morgan thinks that this is impossible because apparently, according to her, when Ava is a grown up, Justin Bieber will be a "grandpa."  So, I can't resist:

Mommy: "Morgan, why can't Ava marry Justin Bieber?  Because he's older?"

Morgan:"Yes, it is illegal to marry a grandpa."

Mommy: "Well, I married Daddy and he is much older than I am."

Morgan: "Yeah, but duh Mommy...he ISN'T a grandpa!!!...wait, is he?"

Following this amazing revelation from my 5-year-old, I decided to take the girls to the shaved ice shack for a little snack.  I should have known, at this point, that the night of zingers wasn't over yet.  I was enjoying this estrogen filled evening with my two favorite girls, and basking in the glow of our mother-daughter bonding time.  I even took a little picture of the three of us, and when I looked at it, I smiled at the thought of all of the fun "girly things" we'll do in the future.  And it was this endorphin-high  moment that led to the next conversation.  I hugged my babies and said:

Mommy: "You know, you girls are pretty cool..."

Addison: Looks up at me lovingly and says, "It's ok, Mommy.  I can teach you how to be cool."

Great.

Addison: "But really, Mommy, all you need to do to be popular and cool is...(oh god, I'm freaking out now, wondering where this is going when she surprises me yet again)...nice."

Mommy:"Oh, Addison, that makes me so happy that you said that.  You're such a sweet girl."

Addison: "Yeah, well, that's just what I say to win people over."

Well Ladies, here's to the next and many future nights of GIRLS NIGHT OUT! :)




One, Two, Three, Four!!!!!

Therapy.  Medications.  Weighing food. New recipes.  New doctors. No answers. No sleep.   And through it all...seizures, seizures, seizures.  Sometimes more.  Sometimes less.  This job is exhausting, and if it's possible it's exhausting in a new way nearly every single day.  I'm learning new things about my new life all the time.  It's not just that my son has seizures of unknown origin, or that we have absolutely no idea what the future holds for him.  It's the little things, too.  He's extremely susceptible to illness so taking him to any sort of indoor playground/germ cesspool is out of the question.  But, we can't go outside because it's too hot and his special diet makes him unable to regulate his temperature.  If he gets too hot he gets a fever and has more seizures as a result, which sort of makes "swinging at the park" not really worth it.

 When it finally is relatively cool outside, I take him to a park and see a mom giving her child goldfish crackers.  He sees it too, and cries for them.  I did come up with a recipe for him now so that he can have them too, but it didn't fix the whole problem.  You know how a stray kid will walk up to you in a park and look at your child's snack and you look to the mother and make sure it's ok to share one with them?  I can't do that.  Try explaining to someone else's one-year-old that they can't have any of my son's cookies because they are "medicine."  And of course I've gotten that, "well this lady is a bitch" look from other moms who don't know us.  I smile, but think silently, "Yes, I'm sure you think your child is adorable and irresistible, but trust me, you don't want me to share."  I usually try to explain as much as I can upfront to avoid these awkward situations (a little tip I learned from my mom).  Regardless, going to the park is a completely different experience than it was two years ago.

Easton doesn't walk, doesn't say any real words, and has the worst sleeping pattern on the planet.  We are exhausted and wonder sometimes where we'll find the strength to keep going.  I say all of this, not to throw myself a pity party, but to give you an idea of how incredibly significant my day was today...

It's been a rough week of no sleep and an exhausted boy during therapy.  I had just told my husband earlier this week that I was pretty sure Easton would never actually walk, at least not without an assistive device.  He just looked at me with the same, "I don't know either," look that we always give each other when we're discussing his progress.  The lack of sleep was getting to both of us and I decided to ask my parents if Easton could stay with them for the night, so that we could get some uninterrupted sleep.  I'd never initiated this myself, and was a little uneasy about it, but they readily accepted and I took him to their house.  When I kissed him good-bye and left for home, I felt awful.  Why couldn't I do this?  Why couldn't I take care of my own kid?  How could I leave him somewhere other than his home for an entire night without me?

Well, I'm glad I did because I slept more than 2 hours straight and felt like a functioning person today.  I even had the energy to take him swimming.  My dad was there watching us from the eating area above the pool, and Easton and I had brought friends along for the fun.  I was talking to one of the lifeguards when Easton looked at the side of the pool and pushed away from me.  He then took FOUR UNASSISTED STEPS to the side of the pool.  He WALKED.  He actually did it.  I couldn't believe it.  I looked to my friend, Ruby, for confirmation of what I'd just seen.  She smiled and congratulated him, so I knew I wasn't imagining it.  Then I looked up above the pool and saw my Dad smiling and clapping for him.  It was the most incredible moment.  If I could have bottled it up, I would have enough elation in that one bottle to last me a lifetime.  We've got a long way to go and the road won't always take us forward, but now I know that he can do it.  I just have to be strong enough to get both of us there...four steps at a time! :)

Sunday, August 26, 2012

Say Cheese

Has anyone else thoroughly enjoyed the "back to school" pics on facebook?  I love them.  Everyone (usually) looks happy and full of so much promise.  It also helps me remember how old my friends' kids are now.  I mean, I remember being pregnant at the same time as several of my friends, but I'll be damned if I remember which one I was carrying at that time.  I love the freshly washed faces and perfectly fitted clothing, the new backpacks and masterfully combed hair.  It makes me feel all sorts of geeky when I take my own children's pics and post them for all to see what a great job I'm doing (we all know that I'm basically just trying to convince myself with said picture, but hey, if you're not rooting for yourself, who is?)

However, as I was perusing my fb page and checking out all the cute little kiddos in their brand new attire, a thought occurred to me. Wouldn't it be great to see a REAL photo of kids going to school?  Something tells me that would be even more entertaining.  So, I vow to take a pic of my kids on some random Thursday in February.  I can already imagine what this pic would look like.  My oldest son's hair will be standing on end, because he's letting it grow and by that time he's sure to bear a remarkable resemblance to Tom Hanks in Castaway (and yes, I could make him cut it, but I'm too tired).  My youngest daughter will only have one shoe on, because it's imperative that she only be able to locate one shoe per day.  This is just in case Mommy is feeling even slightly sane, she's able to tip the scales back in her favor (which, I swear, is Mommy-looking-like-a-crack-addict).  My oldest daughter won't even be in the picture because she'll still be in the house looking for her library book that I told her twelve times to locate the night before.  If she does make it in time to say cheese, it will be with an ugly twisted look of pain on her tear-stained face because, "Mommy yelled at me for just being a little kid."  (Yes, she is THAT manipulative).  And my youngest son?...well, he isn't even IN school yet, but he will most certainly have something to do with our tardiness.  In fact, I'll probably have to wake him from a DEAD SLEEP because he was up partying all night long with Mommy and Daddy. (And if you're wondering to yourself whether or not Daddy actually gets up with him, the answer is, YOU BET YOUR ASS! We BOTH work, thank you very much).

And you all know that every single member of the family will be sporting some sort of "greenish glow" due to the past two weeks of school-related illness.  From December-April, everyone within a 30 mile radius of an elementary school is either going to be vomiting or shitting their brains out for an extended period of time.  And just to make it extra special, the children will take turns and drag it out so long that you'll consider moving their mattresses to the bathroom, just to save you a few steps in the middle of the night.

Yep, I think these pics would be quite amusing.  And, maybe they would remind us that not everything is roses all the time.  Not everyone wakes up every morning with a smile on their face and a pat on the back for little Janie and Johnny.  "Off to school my little miracles!  Make Mommy proud!"  No, no, no.  It's more like, "Here, eat this pop tart as fast as you can and for the last time, STOP telling your sister that she's going to get called to the principal's office.  Because, I will call him myself little missy and see to it that it's your narrow butt that gets dragged in there in front of all of your friends! And you over there, if you don't get that shoe on in the next three seconds I'm going to make you eat it..."

Okay, everybody, SAY CHEESE!

Monday, August 13, 2012

First Day Of Kindergarten

We all remember this day, right?

Pulling out all of the new stuff one last time the night before the big day, just to make sure it's all there.  The smell of new plastic folders and freshly, pre-sharpened pencils.  The excitement and anticipation mixed with fear at the prospect of starting something new.  Wondering if the lunches will be yummy, if the teachers will be nice, and if there will be friends at recess time.  Looking through the new bookbag to make sure that everything has been packed according to the teacher's instructions.  From the looks of it, this can be nothing but a successful year.  But, what if the first day is scary?  What if there aren't any nice friends and teachers waiting with open arms?  Just when the tears of apprehension threaten to steal away the smile of excitement, a hand is on your back.  And there is that sweet, familiar face, saying:

"Tomorrow will be fun!  There will be new friends and fun teachers, and all kinds of exciting things to do.  It will all be ok.  You'll see...Mommy."

But, luckily, she has agreed to hold my hand on that first day, just in case I do get a little scared.

(For all of us Mommies who, next week,  will be experiencing the first of many times that we will "let go".)

Thursday, August 2, 2012

The Perfect Mother

My children have the perfect mother.  Let me explain before you throw your computers across the room in disgust at my boasting.  I, myself, have plenty of imperfections.  I have strengths and weaknesses like any other human being, but luckily for me and my little family so do several other women we have the privilege of counting among our support system.  Some of these women are a part of our "inner circle" and some of them I am only able to see their parenting expertise from afar.  This being one of those instances when facebook can be a good thing.

As mothers, we have plenty of times in our lives when we find ourselves second-guessing our choices for our family.  It can be something as small as the proper veggies for a well-balanced dinner in which every member is well-groomed and sitting politely around the table, or something as big as making a life-saving decision for one of our children.  Either way, at some point, we are inevitably going to come up short.  What I am learning (the hard way) is that we actually have very little control over either of these things.  If you could promise to provide such wholesome veggies as broccoli and spinach every night of the year, or will your children to thrive simply by loving them, mothers the world over would never know defeat.  However, this isn't the case, and eventually, we all know it.  The upside?  We get to do all of it, together.  Each of the mothers I'm about to mention has her own individual strengths, and I'm not ashamed to say that I've drawn from their strengths many times in my life.  I may not have it all together on any given day.  I may not know exactly how to provide for my family's needs every second of the year.  But, luckily from me, on those many days that I fall short, I can take a cue from my "Sisters."

Here are some of my Sisters in no particular order:

Kate- This is one of those women whom you can always count on for at least one great laugh during any conversation.  But, one of her greatest "hidden" strengths is her ability to see that humor in her children.  We all know there are times when our kids are telling us one of their 600th stories of the day and we just sort of glaze over at the sound of their voices.  However, if any one of Kate's children gives her a reason to laugh, they get her absolute full attention.  And, not surprisingly, she has one of those amazingly robust, infectious laughs.  Humor is something she has passed on to her children, but without taking credit for it, she encourages her family to see the funny side of life.

Melissa- She is the quiet mother, who leads by silent example (which is pretty incredible because the woman has FIVE children).  You would never know it though, because she always seems to have it "together."  I know that we don't always have everything together at any given moment, but even if she's faking, no one does it with more style and class than this Sister.  She never puts one child's happiness over another.  Each of her children obviously feels a special connection to this amazing woman in their life.  She absolutely will not sacrifice family time to satisfy the hustle and bustle of "getting to the top" like so many American families find themselves doing.  And, this is no easy feat because her children happen to be incredibly gifted in the area of athletics.  Many would push their offspring to the brink of a nervous breakdown by age 8, just to prove that their child is "the best" at something.  Not Melissa.  That isn't her style.  No child's accomplishments/gifts get more attention than anyone else's.  And they will be better people for it.

Ruby- This Sister and I have a special kind of mothering relationship because we live right next door to one another.  We've seen each other dressed like a million dollars and our families falling in line accordingly so that everything looks absolutely perfect on the outside.  But, we have also seen each other on those days when make-up and bras are sort of optional and we can barely find the energy to brush our own hair let alone make breakfast for our kids.  We share stories of exhaustion and frustration with kids and husbands almost daily.  (We women need that kind of unconditional support from a fellow Sister).  However, no matter how frustrated or exhausted she may be on any given day, you are almost guaranteed to hear words of love and encouragement directed toward her children.  It doesn't matter if one of her daughters is reciting the Gettysburg Address or has just peed in the middle of her kitchen floor.  She still finds the compassion to say, "I just love your little face."  I have been awed by this simple statement many times.  And it reminds me to tell my children how happy they make me just by being them.

Missy- Ahhh, Missy.  She is the crazy, wacky mom who is cool enough to allow her children to wear tutus with cowboy boots and Halloween shirts in the middle of June.  Some moms allow these moments of expression from time to time, but they are usually limited to days of staying home.  Missy would let her kids wear this to a preschool graduation, and no matter how disapproving the looks can be from other parents she will proudly tell her child how amazing she looks.  Tell me that not every one of us can use a little bit of that kind of encouragement.

Jenny- This mother of four holds down three jobs, one of which involves helping bring more children into the world and somehow she makes each delivery seem like the most important she's ever witnessed.  She creates lifelong friendships with mothers whose only connection to her is that she held their hands while their children entered the world.  (She also happens to be the crazy woman who does all this and is the lead volunteer for her children's school activities).

Callie- Luckily for me this one happens to be both my sister AND my Sister.  The same qualities of nonchalance and carefree spirit that made me want to KILL her as we were growing up, are the things I try to emulate for the sake of my children.  Her kids don't know what it means to have someone tell them to "color inside the lines" or that certain patterns don't match, or that play-doh and finger paint are only for special occasions.  Her daughters will always know that it is more important to love your neighbor than it is to get straight A's.  They will understand the meaning of acceptance and unconditional love.

Mom- Of course she has her own given name, but I assure you that this particular woman has EARNED the title of Mom.  She raised a child with autism when it wasn't a buzzword, when no one had any "answers" or therapy methods.  She had to navigate her feelings on her own.  She endured pain and heartache as her child failed to miss the social milestones that her Sister's children were reaching right in front of her.  And she did all of this while making her two "normal" children feel like life was perfect.

Amy, Jessica, Lynn, Jamie- I put these Sisters in a different category, because they've earned it.  Each of these women has been threatened with losing their children.  They've had to make decisions for their children that go far beyond deciding which schools are best or which sports teams they should join.  They have pulled strength from the depths of their souls, when they were sure nothing was left.  They've begged and pleaded to have just one more day of loving their babies here on earth, only to discover just how hard it can be to keep pushing forward on a daily basis.  These women have a deeper appreciation for every milestone reached than most.  They delight in the tiniest steps forward and look to each other for those stumbles backward.  We are members of a club no one wants to belong to, but reach for one another in times of unbearable pain.  It matters not at all that I've only actually met two of them.


We may not get supper on the table every night at 5 pm, with all homework done, and a smile on our faces.  We may not be a size 2, and wake three hours early in order to get that extra workout in before the family rises.  We may not be boasting successful 6-figure careers and balancing a healthy home-life.  We may not be doing any of these things on our own, but together we are a force to be reckoned with.  So whether you are a new mom just starting out, or a veteran whose children are all leaving the nest you can find that ever-elusive Perfect Mother.  Look around you, She is present in all of us.






Thursday, July 26, 2012

Jillian, You've Met Your Match

I don't know if you know anything about Jillian Michaels or not, but she insane.  She's this sadistic, crazy bitch that I love to hate because she makes my ass live closer to it's original location.  I did her 30 day shred videos and got decent results, but became bored after awhile so I thought I'd try a different one.  Let me tell you, being cocky gets you nothing but pain and a seriously deflated ego in the long run...especially when your newly-found confidence is based solely upon the fact that your thighs no longer embrace as you walk from the couch to the refrigerator.  I thought I could just plow through the first two levels of her next DVD because, after all, I was IN SHAPE now.  I mean, I'd lost about 20-25 pounds (depending on the time of the month...we all know it's true) and I was looking less like an oompa loompa and more like an actual person.  However, I was wrong.  REALLY wrong.  I found the first level of  "Ripped in 30"  to be more difficult than the final level of the previous DVD.  Needless to say, I stayed with that one for a few weeks.  Then, when I stopped throwing up my intestines after every workout, I moved on to level 2.  At this point I began wondering if perhaps I should be considered for a mental evaluation.  Why was I doing this to myself?    Luckily, my kids have a way of reminding me:

(Recently, at a garage sale)- Morgan was sifting through some "treasures" and ran up behind me and said, "Mommy, Mommy, you need THIS!!!"

Oh, a "Buns of Steel" workout video.  Thank you, Morgan.

So, I plowed ahead with my workouts.  I eventually even made it to level 3.  I made myself an exceptionally large glass of water before starting this workout.  I even did a few of my own stretches before I turned the tv on to see what the psychotic little imp had in store for me now.  Let's just say the stretching did not help.  After completing level 3, I'm pretty sure I don't need to see level 4.  The only possible equipment you could need for that workout would be a bullet and a large gun.  This is the only way to make it more painful than level 3.

Sometimes when I lose motivation, I have my kids workout with me.  Only God knows why.  I mean, what good could possibly come of that?  I worked out with my eight-year-old son, Logan, and my 5-year-old daughter, Morgan.  And, as I'd suspected before we even began, they both said things that made me want to punch them.  Logan is REALLY good at telling me how easy something is at exactly the wrong time.  I believe this time it was, "Mom, this one is really easy.  It's even easier than the last one."  Yeah, well, I guess it would be, son...especially if I took three recliner breaks like the Bieber-headed goofball I see reflected behind me in the tv screen.  But, Morgan's comments were really stellar during this particular workout.  We were doing move working the tricep muscle and she chimes in with, "Oh, I love this one, Mommy.  It's really fun and so easy for me!"  She was behind me and so I couldn't see what she was doing, but this particular move makes my arms and abs scream for mercy and essentially beg me to let them die in peace.  So, I can't even respond to the little brat that's proclaiming her love for fitness just three feet behind me.  However, she then says, "Oh, wait a minute...are you NOT supposed to have your head on the floor?"  Now, I have no idea what in the hell that kid had been doing but it is physically impossible to do this move and have your head anywhere near the floor, so I responded accordingly.  "No, Morgan, your head should not be on the floor."  And then, the greatest moment of the entire workout, "Oh, I can't do it then...I'm gonna go get a popsicle."

So, my dear Jillian, you have most certainly met your match.  It just doesn't happen to be me.

Saturday, June 30, 2012

Glamour Girl

I am a glamorous mother of four.  And what do we glamorous mommies do on Saturday nights at 8 pm?  We go to Wal-Mart to go grocery shopping, sans children.  As sad as it sounds I get very excited about these late night shopping trips, even if they are to Wal-Mart.  I've got nothing against Wal-Mart, but I prefer to go somewhere else if I'm able. I should also mention that I make these trips in my pajamas.  Oh get over it, you do it too. And, no matter how uppity and sophisticated you think you are, the truth is, if you have children two things are inevitable:

1. You WILL shop at Wal-Mart at some point in your life, and
2. It will be in your pajamas.

I did manage to put a little make-up on, just in case I ran into one of those "judgy-mcjudgersons" that I'm almost guaranteed to see.  You know they type.  It's the woman in her stiletto heels and perfectly manicured nails picking out organic shit to spread on her low-carb tree bark.  She'll see you, flash a million dollar smile, and look you up and down about 6 times during your 30 second "conversation."  All I can think when I see this look of disapproval is, "But, you failed to notice that I did NOT kill my children today, in fact I even fed them...three times.  And I worked out and (luckily for you) showered."

If you can make it through this part of the trip, it's all uphill from here.  As you look around, you'll begin to notice your fellow shoppers.  And although you are wearing cut-off sweatpants and an old t-shirt, you'll feel as thought you may be ready for the red carpet.  You've got to love Wal-Mart shoppers, especially late-night shoppers.  However, the best part of the trip is seeing the pimple-faced, shaggy-haired teenage stock boy trying desperately to align the ever elusive tampon boxes.  How does one get this job?  What contest in Hell did he lose?  He fumbles with the boxes, and although his face is the color of a tomato and sweat is pouring from his temples, he perseveres.  I linger there for a moment, just to be...well...me, and give him a little grin.  Oh baby boy, if you don't know your way around a box of tampons...

Now comes the checkout.  Here's the thing, I only ask, "How are you?" because you asked me first.  I don't actually want to know.  And not ONLY because I'm a bitch (although my sister would disagree) but also because I don't know you.  Our relationship is strictly customer/cashier.  I do not automatically know your mother-in-law's third cousin simply because I got into your checkout line.

I get home and begin unloading groceries and realize that once again I've gotten everything that EVERYONE else needed.  Toothpaste for the kids, soap for the husband, whipping cream for the baby, and various other items on "my" list.  What have I forgotten for perhaps the 53rd time in a row?  A new eyeliner pencil. The one I'm currently using was a gift in my Christmas stocking...last year.  And you'd think this would be easy to remember because every time I use it, the color I achieve by applying it is actually blood that's drawn by the little wooden shards sticking off the end.  If I "sharpen" it one more time, it will be dust.  But, you better believe everyone else got their crap.  Not everyone can be this glamorous.

Thursday, June 28, 2012

Mother or Martyr?

At what point do we mothers decide that everyone else's needs are more important than ours?  It probably starts somewhere around conception, after the nausea sets in.  "It's ok little fetus, take all that you need from me.  I'll just live out my days with my head hanging over a toilet.  Surely at some point my stomach will just eat my intestines.  I should be fine."  Yes, I think conception is the beginning of martyrdom.

My sister and I make fun of our own mother for this all the time.  That woman would eat crumbs off the floor before one of her kids/grandkids even had the chance to hint at being hungry.  She was always the one that claimed to just love the crappy parts of fried chicken.  The legs and thighs would all be gone and she'd eat whatever was left.  She also recently offered to go on a Disney vacation with my family.  We've been wanting to go, but unsure how Easton would tolerate the trip.  So, of course my mom says, "Oh, I would love to go and just sit in the hotel room with him while the rest of you went to the parks."  Really, Mom?  I mean, who wouldn't want to travel 19 hours in a vehicle with 4 children just to sit and watch hotel room cable for 10 hours a day?  It's everyone's dream vacation.

Unfortunately, I've noticed that this trait doesn't stop with my mom.  I do it, too!  I don't even pee by myself. Why in the hell do I convince myself that my daughter's plea for her lost sandal is more important than my ability to urinate on my own?    However, I have realized that as much as I give up for my children there are some things that just don't fly.  For example, if you were to happen upon my stash of chocolate during a certain time of the month and decide that it was for you, I don't care how cute you are or how much DNA we share.  I will cut you.  Also, my husband recently decided that he was going to "take over" my blog to air some of his frustrations.  He says this with a little smile on his face.  Here's the thing, dude...dimples or not, you touch my keyboard and you'll be pulling back a nub.  This is my sacred ground, my holy place, my sanctuary.  It's MINE dammit!!!  Am I not allowed to have ONE thing for myself?  I gave up my breasts, my ass, and my elimination privacy.  I haven't had a good piece of fried chicken in 9 years.  But, I'm putting my foot down on this one...probably right on top of Morgan's lost sandal.

Saturday, June 23, 2012

5K

You know that sticker on facebook that says, "Running.  If you ever see me running, you'd better run too...because something is chasing me,"?  I've laughed at that one several times, but have come to really enjoy running.  Today I realized that it's because someone is chasing me.

I was supposed to run a 5K this morning.  It's something I've always wanted to do.  It's something I had wanted to cross off of my bucket list.  Although I've wanted to, I'd never really nailed down a day to do it.  I decided to set a date and that date was today.  My sister-in-law called about a month ago and said that she was going to try one on June 23 and wanted to know if I wanted to do it with her.  The idea of picking a day to do this excited me and I began to try and train for it.  I realize that a 5K is small potatoes in the running world, but it was going to mean something to me.  I went running when I could, which wasn't often enough, but sometimes life just gets in the way.  I was doing ok, but only getting to about a mile or so before having to stop for a breather.  I was getting nervous as the day approached because I had never made it the full three miles and was afraid that I wouldn't be able to finish.  Everyone kept telling me that I'd be fine because people are stationed all along the way cheering you on and giving you drinks of water.  Motivation would be everywhere.

Well, my life has a way of catching up to me and my big dreams and several roller coaster moments with my son's health caused me to miss the deadline for payment of the race.  And more importantly, didn't allow me to train as I had wanted.  So, once again, I felt that I'd been cheated.  I went to bed last night thinking about how nice it would have been to cross that finish line this morning.  It took me hours to fall asleep, and when I finally did, my son coughed and whined a little and I went to check on him.  It was 3:30 in the morning.  I laid back down, but I tossed and turned for the next hour and a half.  Finally I decided that enough was enough.  I got up, put my running shoes on, grabbed my ipod, and hit the road at 5am.  And I ran.  I ran hard and I didn't look back.  I pictured the face of my son, and the pain he endures on a daily basis.  I ran through tears.  I ran through side cramps.  I ran for me.

I pushed myself further and further, and each time I felt the urge to quit, I kept going.  So, I'd like to thank you, Epilepsy.  Because it's your ugly face that kept me going in my weakest moments.  It was the desire to kick your ass that made me push and push and push.  When I got home, I got in my van and tracked my route.  I kept my eyes away from the dash as it ticked away the miles.  I was waiting for that last moment.  The moment when I'd pull back into my driveway and see either triumph or defeat.  I thought about how I'd feel if I hadn't quite made it as far as I'd wanted. I may not have had the people standing along the road cheering me on.  And I may not have had the luxury of water breaks, but I certainly had motivation. I decided that either way, it would be a victory.  I pulled into my driveway, looked down at the dash and saw it...3.1 miles.  I'm pretty sure that a 5K is 3.2.  Well, I'll tell you what, Epilepsy, you can have that last tenth of a mile.  Because today is mine.  I got up before the sun.  I got up before you could knock me down.  And today, I win.

Friday, June 22, 2012

Skinned Knees

Time for a little truth-telling.  Some "brutal" honesty, as some may say.  I know that the humorous blogs are more fun.  I know that making fun of life is more entertaining than what I've been writing lately.  But, I write what I feel.  It's therapeutic for me to see my feelings written down.  And that therapy goes both ways.  Unfortunately, lately I've had more of those downer moments than I have good ones.

The truth is, this is really hard.  Living life afraid all of the time is exhausting.  I've always had an anxiety issue, but now it seems that the anxiety is warranted.  Before, all of my "what if" situations seemed crazy and unrealistic.  Now, my anxiety is reality.  We go to bed every night wondering what the next few hours may bring.  Neither of us plan ahead anymore, and that alone is a huge change for us.  We think about things that we'd like to accomplish the next day, but also know that we could be leaving for the hospital in the middle of the night without so much as a warning.  In fact, I've made a list of things to put together for an overnight bag in case I have to call someone to bring our supplies to us.  I keep it in my son's room.  I've gotten into the habit of showering at night and keeping a change of clothes next to my bed so that if I have to leave on a moment's notice, I can go that much faster.

The hardest part is the unknown.  We have no official diagnosis.  We have no actual path to follow.  Will this be something we look back on as some long nightmare?  Will we still be having this same conversation in 20 years?  Is 20 years something we can even hope for at this point?  Who knows?  I know that other people struggle with so much more.  I know that others have more hardship than we do.  I know how lucky we are to have support and love around us.  But, that doesn't change the pain and frustration of the day to day.  It doesn't make this easy.  I know that we are supposed to always smile and be grateful for what we have, and to remember that tomorrow is a new day with new possibilities.  But, if we're being honest, that isn't reality.  Do we have a new appreciation for life and the blessings we've experienced?  Absolutely.  In fact, it's one of the things for which I am the most grateful.  I have a passion for life that I never knew was possible.  I appreciate more in one day than I did in a year's time before all of this happened.  And, I will certainly write about those things.  I will cherish those things and even brag about them from time to time.  However, I will not forget to share the hurt.  I will not avoid talking about the pain because it's too hard.  I don't believe in only highlighting the pretty things.  I will not be fake.  I will not hide my fear and sadness.  They are part of this, too.

My husband and I have gotten stronger, that is certain.  But, our strength has come out of necessity.  It has come because while one of us is beaten and weeping in the corner, the other is standing and taking the wheel. We do this together, because it's the only way we can survive.  We feel defeated over and over again on a daily basis.  We revel in the good moments, and feel the sting of the not so great ones.  We are lifted and dropped, lifted and dropped, lifted and dropped. No matter what we do, the outcome is going to be what it's going to be.  We can't "work harder" or "try more". Helplessness is not something to be dealt with lightly.  It's one thing to say that you would die for your child. It's quite another to know that you would actually do it.

I want to stop being angry all the time.  I want to stop wondering why we are going through this and others aren't.  And that's the ugly truth of it all.  I am mad because I feel so alone in this sometimes.  All of the support in the world isn't going to make someone else understand the life we live:

-You know that time at the end of the day when the kids are in bed and you and your spouse just get to talk to one another?  It doesn't matter what it's about as long as it's just the two of you. I want that back.  Instead, we fall into bed nearly comatose and without even a word.

-I remember that time, when babies are discovering things and they point to everything around them and want you to see what they've discovered.  I remember being fed up with that, and gladly giving the job of explaining every object in the surrounding area to someone else for awhile.  I want to be bothered again.

 -Have you ever noticed that most toddlers have one thing in common?  Skinned knees.  I know chasing a toddler can be annoying and time consuming, but all I can think about right now is how incredible it would feel to see my son take steps on his own.  I would give nearly anything for my baby to have skinned knees.  His knees are perfectly intact.  No scratches from running too fast and falling.  No bruises from climbing into things that he shouldn't.  I want to kiss boo boos and fix things with bandaids.  I want to make it "all better" with just a hug.

I feel loved.  I feel grateful.  I feel happy.  I feel excited.  But I also feel pain.  I feel helpless.  I feel despair.  I feel loss. All of these things come with the territory.  I know that, and I'm certainly willing to admit to all of the above.  But, if I could, in what may be a moment of weakness, can I just ask for one skinned knee?