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Tuesday, December 24, 2013

Christmas Tree

Somehow it came.  In less than an hour it will be here.  I'm not sure how that happened because I felt I was doing my best to make it feel unwelcome.  Still, my efforts have gone unnoticed.  My pain didn't scare away the snow.  My shattered heart didn't deter the world from hanging mistletoe and decorating trees.  Everyone around me still bought gifts for their loved ones.  They still made "to do" lists and ran around in the same stressed out circles trying to complete everything before the big day.  Why?  I don't know. How?  I can't imagine.  But it's true. Christmas is here.

Although I guess this is technically our second Christmas without you, it feels like the first.  I don't know if that's because of the horribly close proximity of your death to that date last year, or if every year will feel like the first.  Maybe it's just that last year was my first Christmas without breath.  This one is my first without YOU.  I began to feel the hole widening when I realized that time was running out for buying gifts for your brother and sisters.  I remember thinking to myself, Ok, as much as you hate every aspect of this holiday, at some point you're going to wish that your children had something to open on Christmas. And not because they NEED any of the things you're buying, but just because you don't want more things to be ripped from them. So, I did it.  I bought things.  I found items on shelves and put them in carts and brought them home to be wrapped.  I did all of those things.  That seemed like enough.  That should have been enough.  But of course it wasn't.  I couldn't buy those gifts without getting yours too.  I found the greatest gifts for you.  You'd love them. And actually there were times when I was buying them that something felt lighter.  Something was holding me up and allowing me to enjoy that process.  Part of that was the love of a friend, and part of it was you.  I know you chose your gifts. But the thing is, I also had to wrap them.  The paper is covered in my tears because of course I knew that the little boy who would have loved them so much wouldn't be there to open them.  I know you'll never see them.  I know you won't race to the living room to beat your siblings to the tree.  I know you won't cuddle with me on the couch while we play with your new toys.  The funny thing is, I'm very aware of all of these things and yet, I also know that the first thing I'll do when I come up those stairs is look for you.

Tonight your siblings set out their stockings.  They jumped up and down with excitement and watched Christmas movies together.  I sat here and watched them.  All I wanted to do was crawl into a hole and never resurface, but I didn't.  I'm sure my smile wasn't as broad as they'd like it.  I know they recognized my pain. But what they couldn't possibly see was the war raging inside me. How could I be here watching this all unfold?  I don't even like when all five of us are in a room together because it makes that missing piece of our puzzle feel so much bigger. Your piece completed us and without it, none of us seem to fit.  So how could I possibly be part of something that is supposed to be full of such joy and happiness when my pieces are missing?  But, still I sat there.  I wanted to scream and punch something.  When your sister handed me the picture she'd drawn of our family, I wanted to throw it back at her.  She'd forgotten to draw you.  When your Dad took your siblings to church and I sat home alone, I wanted to hate him.  Why were they trying to make Christmas look the same when clearly that wasn't ever going to happen again?  Why was I the only one who could see that?  Why was I alone in my efforts of stopping the world from spinning?

All of these things went racing through my head, and yet, I never would have thrown that picture back at your sister.  As crushed as I felt in that moment, some part of me knows her pain runs deep.  And when Daddy suggested that she finish the picture by adding you, she said, in all of her adorable innocence, "Well, I didn't have time to draw the ornaments on the tree.  And Eastie was supposed to be pulling the ornaments off. I'll draw him doing that.  That's why I hung that yellow ornament so low on our tree this year.  Remember how he always pulled that one off?"  And sure enough, the bottom of the tree held a gold ornament with Santa on it. It's so low, it nearly touches the ground.  I hadn't noticed it before, but it had been like that the whole time.  This time I was the one who'd forgotten.  She was right.  That was the exact ornament you pulled off over and over again. Not only had she remembered, but she'd hung it low enough so that you could reach it.

I realized that as ugly as this life has become, we're still doing it together.  Our methods of grieving are so very different, and yet there is no denying the invisible thread that holds us together.  All six of us.  Daddy and I will forget things that your siblings will carry forever. They'll need us to remind them to include their little brother at times, just like any other family.  We each have our special memories with you that we keep tucked away for those private moments when we talk out loud to the sky. And tonight I'm asking for your strength and love to be with us tomorrow.  Help us to make it through, one breath at a time.  Look for us, Baby.  We're always here.  And I assure you that I'll never stop looking for you.  Even if it has to be tomorrow, under that Christmas tree.


Tuesday, November 19, 2013

Thank You, Mr. Larry Fitzgerald

Brothers. I've always been grateful that we were able to give our children what I consider to be their greatest gift, siblings.  There are some things you can only learn from your siblings, and they also provide an understanding of your life that no one else can touch.  When I was pregnant with 3 of 4 of my children I was a gestational diabetic, which means I had SEVERAL ultrasounds.  I would drag my once excited, but now bored three-year-old daughter to every one of them.  The first one thrilled her beyond words, although she tried to articulate her feelings in her adorable baby way.  However, by the time we'd reached what was probably the seventh one, she had resigned herself to bringing a book or toy and occasionally placating the amused technician with a cursory glance at the monitor and correctly named the vital organs being shown there.  I, however, watched carefully each time because there is something thrilling about seeing that little human doing somersaults inside your body and feeling the movement at the same time.  Although my husband and I prefer the "surprise" when it comes to the gender, I'd now seen so many ultrasounds that I was more than positive that this child I was carrying would be a boy.

I remember being ecstatic when I first discovered that we'd have another son.  Obviously, it's a 50/50 shot and none of us can control the outcome of that any more than anything else in our lives.  But, I was thrilled that my son, Logan, was going to have a brother.  I kept the secret to myself (even from my husband), but made sure that we had a video camera ready when the kids came in to meet him.  I couldn't wait to see my son's face when they handed him his new brother.  Just as I'd anticipated, Logan was over the moon.  He held him first and just stared at him as if to say, "Are you REALLY a boy?  You're ACTUALLY a brother?!?"  After years of being surrounded by mostly women, he'd been anticipating this moment more than the rest of us.  He immediately began telling Easton about all the things he was going to teach him.  He'd show him how to throw and fish and bother his sisters.  He'd be there to defend him if anyone were dumb enough to pick on his little brother.  I'll never forget the look on his face that first time he held him.  It's one of my most cherished memories.

Last December, Logan was robbed of all of those moments he'd envisioned with his brother.  He'd already given up so much.  He learned rather quickly that Easton wouldn't be like other brothers.  He wouldn't be able to go on bike rides with him, or run and catch a football.  But, he never gave up on him.  True to big brother form, he simply changed the game.  One of their favorite things to do was a game in which Logan lay on the floor and Easton would slap him in the nose repeatedly.  Logan took it for as long as he could and then rolled away in mock pain, and Easton would throw his head back and laugh hysterically.  This game went on for hours at times.  Watching the two of them together was truly something to behold.  I remember sitting on the couch once and staring in awe at them.  My boys had not been deterred by illness.  They hadn't lost to seizures.  They still found a beautiful way to just be brothers.  I will also never ever forget the look on Logan's face the day I had to tell him that his brother was only going to get worse and that he couldn't come home.  I remember the pure pain and agony in his eyes.  I remember the way he punched the hospital bed and threw his body over his brother's, begging us to be wrong.  I remember standing there, helpless, watching those brothers embrace for the last time.  It's a bizarre mix of emotion when you realize in that instant that you've seen an entire relationship of love with your own eyes.  I had watched as they placed Easton in his arms the first time, and I was there as Logan clung to him for the last.

How do you take that kind of pain from your child?  How do you tell him that everything will "be ok" when he knows better?  We can't.  All we can do is love him through the process.  One of the ways we've decided to take on that task is to take each of our children on their own get-away with Mom and Dad.  Logan chose a weekend of sports, of course.  We saw a great St. Louis Cardinals game on a Saturday, and on Sunday we watched the Rams play his favorite NFL team, the Arizona Cardinals.  He'd worn his jersey that boasts the name of his favorite player, Mr. Larry Fitzgerald.  Before heading into the locker room after warm-ups, Mr. Fitzgerald came over to Logan and handed him his practice gloves as a keepsake. My son's smile lit up the room in that moment.  He put the gloves on and didn't take them off the rest of the game.  The Cardinals lost that game, but he was too proud of his special moment to even take notice.  Jeff and I were so happy just to see him smile a real smile.  We hadn't seen it in so long, and it was beautiful.

Jeff wrote a long thank-you to Mr. Fitzgerald so that he would know just how important that moment was to our family.  He spoke of Easton's life and death and how much he'd meant to his brother.  He thanked him beautifully for giving us that moment.  Today, a couple of weeks after Jeff had sent the letter, I received a package.  The return addressee said, "Larry Fitzgerald."  I assumed my husband had bought something for Logan, so I opened it.  Inside was a signed 8x10 of Larry Fitzgerald and on it, a note to Logan:

To Logan,
I'm proud of you for your courage and perseverance.  Losing your brother is not easy.  My heart goes out to you and your family.  I know you will always keep him close to your heart.  I got a letter telling me that you were a fan of mine.  I want you to know that I am a fan of yours and that I am proud of you for just being you.  Keep working hard in class and be a good big brother to your sisters.
Best Wishes,
Larry Fitzgerald    Faith, Focus, Finish!

I don't know about you, but I consider this to be one of the greatest achievements of a professional athlete.  He reached out to a young fan in pain, with no expectation of accolade or acknowledgement.  I couldn't wait for Logan to get home and read what his hero had sent him.  I video-taped him as he opened it.  I don't ever want to forget the look of awe as he opened that package.  He was beyond thrilled, and called everyone he knew in the next ten minutes.  He ran to neighbors' houses to show them.  His smile was back tonight.

If I could tell this story to every person I know for the rest of my life, I would.  We've already written the thank-yous that we're sending back to him, but I wanted to tell as many people as I could about this amazing man and his beautiful soul.  So, THANK YOU, Mr. Fitzgerald.  Thank you for my son's smiles.  Thank you for giving me happy memories of his face as he opened your gift.  I have entirely too many pictures in my mind that are formed by pain and suffering, and in this simple act you've replaced them with something truly inspiring.  Thank you for giving him a reason to continue to strive for success in his life.  And most of all, thank you for showing him what it means to be an incredible human being.  We'll forever be grateful to you for your kindness, for your "love for the sake of loving" (as is written on our ETO cards).  He'll know what it means to be generous.  He'll know what it means to be kind.  He'll know what it means to love.  And that, sir, gives him back a little piece of his precious brother.

Monday, November 11, 2013

One of Those Days

Today is one of those days.  One of those mercilessly frequent days when we feel the entirety of our brokenness as a family.  Today my husband mourned the last day that he had "his boy."  The last day that he held him and played with him before that horrible seizure led to the coma that stole him away forever.  He mourns in silence because the enormity of his pain is too much for any of us to bear.  Who can you possibly reach for in those horrifying moments, if you can't even bring it to your own family?  He only wanted to reach for one person, and that little person is gone.

It's one of those days where, in the midst of my husband's grief, I was doing things that kind of looked like functioning.  I went to the grocery store.  I prepared a dinner.  I gave medications to our sick kids.  I was sort of reeling over my utter ambivalence about the fact that two of our kids had very high fevers and had been vomiting all night.  I kept thinking about how easy this "illness" was.  No need to pack a bag for a potential hospital stay.  They would simply get better.  Did that still happen?  Was that was this new world meant for us?  No need to fear that the vomiting would result in the expulsion of vital anti-seizure medications, or that a high fever would encourage more seizures.  Was this possible?  Did I only need to sit back and watch as their bodies healed themselves?  As I sit and write this, they each have their own books and are smiling in their own little worlds.  So, I guess the answer to all of these questions is "yes."  At least that's today's answer...

This day encouraged my husband to ask me for my phone because, as of right now, it is the only device we have with recorded videos of our forever baby.  Like most of the pieces of our grief lives, we view these videos differently.  He watches them to remember and to help soothe a need.  I don't watch them at all.  I did for a time, but today upon showing him how to retrieve them from the phone, I started one and the sound of my son's laughter filled my ears and shattered what's left of  my heart.

Like I said, it's one of those days.  One of those days in which my skin feels like it's barely strong enough to keep me from going everywhere at once.  One of those times where all I can do is lie down and lose myself in a book in order to take my thoughts anywhere but that searingly painful place.  And it all started with a laugh.  A beautifully rhythmic baby giggle that at one point would have seemed like the sweetest music, but now burns an irreparable hole into my soul.  My physical relationship with my son has been reduced to a video.  While I know that the blessing of this video is a true gift, I wonder, would it be enough for you?  I don't just hear the laugh when I watch it.  I see the toy he was sitting on and I remember the first time he manipulated it successfully.  I remember our cheers as a family in the middle of our living room floor, and his look of wonder at what we could possibly be so excited about.  I remember the feel of that fleece Old Navy pullover that he wore all the time.  I remember the smell that wafted up from the collar as his body snuggled against mine.  I remember the frayed ends and how it became too short during his last autumn in my arms.  I see that baby laughing at his sister and I remember the woman on the other side of the camera trying desperately to enjoy the moment, but ever vigilant as she waited for one of the harder seizures to take his right side by storm and slam his body on the concrete.  I remember her need to stop the camera and take him inside to prepare his third meal of the day, and I remember his reluctance to eat it and the frustration that brought.

I can no longer hear that laugh without the sting of pain.  That toy has been banished to his room where everything else is piled around it like haunting relics of what will never be.  The little girl in the video has lost her best friend and her eyes are forever changed.  And that fleece pullover...that wonderfully soft piece of baby sweetness that used to be a regular part of my life has lost its sweet scent.  I'm always amazed at the millions of ways in which we are capable of losing one person.  And although the heaviness of that loss is always present, today was particularly grief-laden.  Once again I've lost my son, and this time, at the hands of laughter.

Thursday, November 7, 2013

Moments

It's the season of germs.  Every school in the midwest is experiencing the joys of vomiting, feverish children leaving for various doctor appointments.  Today was my turn, and although this is an "annoyance" most of the time, for me and my family, it was our first trip back to a very familiar and very painful home away from home.  I dreaded this moment from the time I confirmed the appointment for my oldest son. In fact, when my oldest daughter found out that he had to go, she asked with tears in her eyes, if he was going to die.  My children don't fear shots as much anymore. Doctor's offices are much scarier than any vaccination could ever be. While I was quick to assure her that his was a minor illness, I, too, feared the worst. My reasons were just a bit different.  I imagined being taken to the same room and seeing the same Nurse Practitioner that marked the beginning of the end.  Each time I thought about the possibilities, my stomach would turn and I'd try to distract myself.

I ended up needing to take both my oldest son and my youngest daughter, because she'd been acting a little under the weather as well, and I wasn't about to take the chance in needing to come back to this place.  By the time I got to the office, I'd conjured up every possible scenario.  However, when I walked through the front door, nothing happened.  Nothing.  No breath sucked from my lungs.  No racing heart.  And you know what the truly amazing part was?  I got to watch my two "sick" children walk through the doors on their own.  And when we were taken to the room, which was mercifully different from the scary one I'd anticipated, I listed their symptoms with no fear.  Do you know how many times I got to answer "No" to the potentially scarier questions?  I was absolutely aware of how blessed I was in that moment.

I also had some questions about a possible issue with my son, but even in that moment, I wasn't afraid.  And do you know why?  Because NOTHING surprises me.  This is one of those hidden gifts given in a situation like this.  I hear seemingly horrible news all the time, and it isn't that I don't care that "this" person has cancer, or "that" person was in a car accident.  It's that I'm never surprised by that.  I realize how terribly morbid that probably sounds to some, but I can also tell you that it's completely freeing.  I know I have control over nothing, so I don't stress about trying to make it all work according to some plan.  That's a complete 180 from my previous personality.  And quite honestly, a piece I wouldn't give up.

After the appointment, we had to get lunch before going back to school because they'd missed it.  We went through a drive-thru.  Again...BLESSED.  I could NEVER do that when Easton was here.  You cannot have normal food around a 2 year old on a ketogenic diet.  Especially not when his siblings are the ones getting to eat it.  Now, obviously, I'd rather have my son here and would avoid ever eating out again if I had to, but he isn't here and the little people who are don't have the diet restrictions he did.  So, I got to feed my children horrible, grease-filled, deliciously indulgent fast-food.  I'm grateful for that.  The next time you chastise yourself for shirking your "dinner responsibilities" and driving through somewhere, try to consider the blessing in that.  (It makes fries taste lots better, too) :)

I dropped my son off at school and he went in on his own, to his wonderfully supportive school family, where he does very well.  Blessed a thousand times with that moment.  Do you know how many things have to go right for a ten-year-old boy to be able to do all of those things, while simultaneously being relatively happy and fulfilled?  I do.  I'm very much aware.

I'm not better, and I won't ever be better.  Not today, not tomorrow, and not 20 years from now.  However, I do have moments where I see the beauty in the life I'm experiencing.  I always have.  But, now I have a heightened sense of appreciation for what used to seem like the small things in life.  I'll continue to have these moments. Just as I'll continue to have the periods of time when I can't seem to breathe, but they're my moments.  They're my life, and they're mine to experience.  I know he's with me.  The signs are too ridiculously obvious to ignore or explain away.  And while I'd readily  have given my own life to have been able to create a different earthly existence for my son, I'll honor his memory by seeing the beauty in the small moments.  He continues to show me daily, that they're the big ones.

Tuesday, November 5, 2013

The Date

Yeah, yeah, yeah...that "date" is coming.  It's going to be December 8th soon, and while no date in the last year has been a good one, I think most people assume that this one will be the hardest.  Will it?  Hell if I know.  In my experience, the days leading up to "the date" are actually worse, and it's nearly impossible to shed even one tear on the day that everyone expects you to be a heaving mess.  You want to see that?  Come over a few days before, or now for that matter. Why does it work that way?  Who knows?  I know it doesn't make much sense, but the beauty of grief is that NONE of it makes any freaking sense.

In fact, do you know what day scares me the most?  December 9th.  Why?  Because then the "date" will be over.  A year will have officially passed and the last day that I'm allowed to be visibly upset will have come and gone.  I know, I know, "there is no time limit on grief," "take as much time as you need", etc.  Sure, except that isn't true.  The truth is that even those with the best of intentions assume that at some point, this part will pass.  I don't believe that, and maybe it's just because I'm in the beginning stages and it only happened five minutes ago.  Does time even matter in this situation?  I think, no.  I recently heard a woman say that she didn't want to let go of her grief, because it was the last thing that connected her to her daughter.  Thank allah for that woman because I was beginning to think that maybe I was a little crazy. (No comments necessary on that one.)

I was having a seemingly innocent conversation with a friend a couple of weeks ago, and I remember saying, "Oh yeah, Easton was Superman last year for Halloween."  That was right before the punch in the gut.  I felt like I'd literally had the wind knocked out of me.  It's a very physical experience and it happens all the time.  Immediately after saying that simple line, I realized that it would be the last time I'd ever be able to start a sentence with, "Last year he...".  Never again will that be true.  None of my years or "last years" will involve a story in which Easton was alive.  How is that possible?  I have no idea.  It makes absolutely no sense.  These moments happen so often that it's almost become routine.  Wake up, brush teeth, get punched in the gut.  Exercise, eat something, punch in the gut. Smile, laugh, gut punch.  Over and over and over again without fail.  And as awful as that sounds, this is not the worst part.  Insane?  I know, trust me.

The part that makes your head spin, that brings you to your knees, that surprises you on a daily basis, is the loss of self.  I'm no longer the same person.  That may sound cliche, or even "expected", but the truth is that you could never expect to know what it's like to wake up in a completely different body that's guided by some new person's brain.  Is all of it bad?  Of course not.  Of course there are parts of this new person that I'm eternally grateful for.  She's much slower to judge and quicker to love.  She has no expectations of anyone or anything, so everything that happens is pretty much a "roll with the punches" situation.  She no longer fears any of the things she used to because nothing she experiences now will even come close to what she's already seen.  However, I don't KNOW her. She's broken. She's foreign.  A stranger.  And she never goes away.  She's still there when I'm supposed to be compassionate about someone else's "dire" situation.  Hers seems to be the only perspective that matters.

Anyone who knew me before, doesn't know this woman.  Anyone who knows her now wouldn't recognize the person I thought to be me.  A particularly poignant moment in my recent experience came as I was remembering the first Christmas that my oldest son was old enough to care about presents.  I was working nights at the time and had been up all night Christmas Eve, but stayed up the next day so that I could see him enjoy the day.  I remember telling my husband that although I was a nurse, I didn't care what I had to do in whatever job I happened to have at the time, I would never miss a Christmas morning with my children.  But that was the old me.  This new woman hates Christmas, and all other holidays, or any family gathering for that matter.  I can't imagine anything worse than sitting around a tree, with a room full of family, passing around gifts that mean nothing.  So, like so many other things, I've also lost Christmas. How many ways can you lose someone?  You'd be surprised...

So what's the point of saying all of this?  Why do I keep re-hashing pain that isn't going to go away or change?  Because, like I said, she doesn't go away.  All she knows is pain and grief.  It's the air she breathes and the water she drinks.  The woman before her has died, and to expect her resurrection is as futile an expectation as that of Easton's.  She's not coming back, so say your good-byes to her and move on or don't, but know that no one misses her and simultaneously loathes her existence like I do.






Thursday, October 17, 2013

No Commercials

One of my guilty pleasures is the tv show Glee.   They recently aired an episode in tribute to Cory Monteith or "Finn", one of the stars of the show.  I don't know when it was actually shown because I tried to watch it then, and made it about 5 minutes before turning it off.  I couldn't do it, but saved it for another time when I knew I could fall apart in the privacy of my own pain. Today was that day.

The opening monologue from his "brother" talked about the numbness and the inability to answer the question of how you're feeling.  He also mentioned the fact that the reason for his death was irrelevant, because regardless of the "how", the end result was the same. His brother was gone.  I agreed wholeheartedly with that sentiment.  I also found myself nodding along as each character expressed their surprise at the pieces of him that they missed.

But then came the scene of his mother sorting through the things in his bedroom.  She fell to her knees and talked about how she always turned the station when she heard a story about someone losing their child.  She couldn't bear to watch something so horrible, but always found herself wondering the same thing.  How did they get up in the morning?  How did they breathe?  She then goes on to say that now she knows that you do get up. Every. Single. Day. And for a split second you forget, but then you remember...and it feels like you're hearing it for the first time, again and again and again.  And you have to keep being a mother, even though you no longer have your child.  All of this is so true, so very nail-on-the-head, except...

In real life there is no "end scene".  There are no commercials.  You can't pause the show or turn away when it's too hard.  Trust me, if there were a way to fast forward 50 years from now I'd take it in a heartbeat.  I wanted the mother scene to last forever.  I wanted to watch her and see how she DID get up each day.  I wanted them to show the part where she does the laundry and realizes that his shirts are no longer coming through to be cleaned.  I wanted to see her go to the grocery store and pass an aisle that she could never have skipped before because of the son  who would have demanded his specific favorite.  I want to see if she breaks at that thought, too.  Does she stop and suck in her breath when someone who looks eerily close to her baby walks by?  Does she wonder if today might be a good day to simply stay in bed and forget the list of things she's "supposed" to do?  Are there times when that isn't even a choice, but a demand?  Does SHE ever scream out in the middle of the night, reaching for someone who never reaches back?  Does SHE know the pain of the "never will"?

No.  She doesn't.  Because this is a television show.  But, it struck me that this is how anyone on the outside of my own grief could be viewing it.  It's a television show.  Once they're no longer in my presence they're able to hit pause.  They're able to fast forward to the part of their day that "must be done."  THIS is why grief is so lonely.  Everyone else is given a magic remote while I have to watch all of it in real time.  I don't have the luxury of walking away from the show, the salve that is the commercial, that brief break from the agony.  And while many will gladly come to my "house" and watch my show with me, maybe even provide the kleenex, they'll never give up their remote.  They need to be able to turn the channel, to walk away.  No one wants to trade places. And why would they?

So, lonely is commonplace.  Pain is as natural as walking.  Crying is breathing.  And there are answers to the actresses questions, "how do they get up each day?" and "how do they breathe?"  But, they don't come in hour long tv shows.  They don't come with fancy background music, or impressive monologues.  They come in the eyes of Debbie and Vicki.  In the hearts of Chelsea and Amy. In the kindness and generosity of June and Tiffany. In the compassion of Cathy and Megan.  And maybe someday, even for me.  But there will be no commercials.

RIP
Andy Fleer
John Hiland
Racheal Jamison
Caitlyn Bishop
Samantha Otte
Cadan Frericks
Klayton Howell
Molly Mann
Easton Zanger

Monday, October 14, 2013

Sleepless

What's the first thing that comes to mind when you hear the movie title, Sleepless In Seattle?  Is it Tom Hanks, or Meg Ryan?  Maybe you just get confused and wonder if that's the one where she gets mail?  I think for many of us, the first scene that we recall is that last one.  You know, the one where she leaves her dinner with her former fiance, and begs to take the last trip up to the top of the tower in hopes of meeting her soul mate.  That's everyone's favorite scene, right?  I mean, that's why we're watching the movie...again.

The most infuriating, confusing, painful thing about grief is all of the unknown.  There are so many twists and turns that you never expect, and lurking around each corner is a new way to throw you off of an already foreign landscape.  Everything changes.  Everything.  All that you've known up until that point is either in direct opposition to what you now know, or is so deeply buried in the murky, evil bowels of grief that you couldn't possibly recognize it as anything familiar.  It's insane how even the little moments in your life become wary strangers.  Did you know that every single song, book, and movie you've ever experienced takes on a whole new meaning after you've lost someone you love?  I've been shocked by this fact more times than I can count.  For example, never again will I stop on a station showing Sleepless In Seattle if it's current scene is anything but the very first one.  I don't know that I'd ever even noticed it before, but now it means more to me than the rest of that movie ever could.

The opening scene shows Tom Hanks' character, Sam, in his high-rise office talking to a colleague.  His friend asks about something work related, and Sam becomes angry and throws all kinds of unwarranted hatred toward his costar.  When he realizes he's just had an outburst, he looks at his colleague and says,

"Don't mind him.  He's just a guy who's lost his wife."

No line has ever been more accurate.  When I say that everything changes, that's exactly what I mean. I don't mean that sometimes there are subtle reminders or that I notice some differences every once in a while.  I mean that each breath I take feels and even sounds different.  And while some of these things may eventually return to something more familiar, my essence is forever changed.  I will not be the same person.  My world has been colored with pain and loss.  Even beautiful moments come with a sting that can't be denied. A life without that simple truth will never again be part of my reality.

However, I've noticed that there are people surrounding me that don't judge that change.  They accept that this is my reality, and they even support it.  They never say, "I'll love you if..." or "You should be doing this" or "You're not doing that".  I'm extremely grateful for those people.  I know with certainty that if they haven't freaked out and run yet, they're probably not going to.  I've been horrible and unfair.  I've yelled and screamed.  I've blamed and hated.  And yet, there they are, saying nothing.  Because honestly, nothing anyone has to say will change any of it.  Somehow they know this.  One of my good friends recently said, "I don't know what everyone is looking for.  I still see you.  You're still in there."  Unfortunately this friend understands the expectations of others all too well.  Luckily, we both know that each day that we live being true to who we are, and forgetting what anyone else thinks we should be doing, is the ONLY way to do this.

I assume there will be a day somewhere in the very distant future where more pieces of  the old me will show more frequently.  I also assume that anyone uncomfortable with the current version of me will start to drift back in, and I suppose that's up to them.  I honestly don't think about that very often because no matter what I lose now, it will never be worse than what I've already been through.  I give very little power to anything that doesn't keep me going in the current moment.  But, even if I do eventually find that place of familiarity, I'll remember those who were here for this part.  I'll remember that you held me during the dark moments, and that you talked to me on the phone late into the night even when you were exhausted.  I'll remember that you walked silently beside me as I screamed and cried, and offered a hug when I needed it.  I'll remember that you never said, "I know you're sad, but..." If you give me time, I'll be that strength for you too.  In the meantime,

"Don't mind her.  She's just a mother who's lost her baby."


Sunday, September 29, 2013

Princess

One of the most difficult things about losing a child, ironically, is having more children at home.  I  know that seems to be in direct conflict with mainstream thought, because it's been suggested more times than I'd like to count that I "get better" or "continue living" for my other children.  However, one who has never been in this situation cannot possibly know the pain and fear brought on by the "other" children at home.  They are potential for more pain, pain that you know better than anyone else.  The truth is that IF someone CHOOSES to live beyond that moment that changed their entire world, it is because they themselves make that decision every minute of every day.  I assure you that it's not one you make and then are free to simply forget your other options, and I'm not suggesting that the choice to truly live is the right one for everyone.  As scary as that statement may be for some, for me and anyone else who's lived here, it's simply truth.

I've learned that nothing in life is coincidence.  None of the people we meet come into our lives purely by chance.  When I was about 16 years old, I met a woman whose name I wouldn't actually come to learn until many years later.  I remember that she walked up to me with her beautiful little two-year-old daughter bouncing on her hip.  I was wearing a crown at the time, (small-town fodder to be used at a later date, when I find it more amusing) and she asked if I'd be willing to take a picture with her little girl who was pretty convinced that I was a real princess.  I smiled and reached for the baby and we took the picture.  When I returned her to her mother's arms, I noticed that their smiles were identical.  They had those "whole face smiles". You know, the kind that makes it impossible to do anything else but smile with them?  I remember thinking, even in my 16-year-old ego-driven brain, that this was one of the beautiful moments. Their identical eyes smiled back at me, and I knew I'd witnessed something great.   I watched as that woman carried her daughter away, and she was giggling and whispering to her precious, cherub-faced mini-me.

I've thought about that moment a lot over the past year.  At the time, I'd known that it was special, but I'd had no idea how much those two people would come to mean to my life.  That sweet little baby girl has grown into an incredible young woman. A young woman who's had to become incredible without her mother because she was taken from her entirely too early.  Although her youth suggests that I would be the one teaching her about life and loss, I'm amazed daily by what she teaches me. I know, because of her, the value of a child's time spent with their mother.  I see the pain of the little girl who misses her Mommy, while at the same time she shines as a woman who's choosing, each day, to honor her mother's memory by becoming something incredible.  She's still beautiful.  She still captures my attention with that smile, and she still boasts those unforgettably identical eyes.

My husband and I decided to take each of our "other" kids on a special trip this year instead of having birthday celebrations.  They each got to choose a destination and we bought three tickets for each trip, one for the child, one for Daddy, and one for Mommy.  These trips were meant to focus on them individually, so we left the other two with family.  We were never able to do things like this when their brother was alive because he needed such constant care that my being away from him for more than a day at a time proved impossible.  And even if I'd allowed for a brief time away, my thoughts were always consumed with him and his well-being.  This weekend happened to be our youngest daughter, Morgan's, trip.  She chose Disney On Ice.  I don't know what it is about that man that built a world around a mouse, but his healing powers cannot be denied.  She loved every second.  We spoiled her rotten.  Price tags don't exist on these trips and the tears we typically seem to find daily, give way to hugs and giggles every time.

This morning, in the last few moments of our one-on-one time, she climbed into my bed while I was reading, and opened her own book.  We lay like that for a while before Daddy came down to find us.  He asked her what she was doing in his bed and reached to tickle her.  She laughed and begged him to stop because he was moving the blankets and it was making her cold.  He said, "You sound like Mommy, now.  She's always stealing the covers because she's cold."  She didn't hesitate, but looked straight at him and said, "I AM Mommy."  He told her that she did look very much like Mommy, but she shook her head and corrected him again.  "I AM Mommy."  How many times had that other baby girl thought the same thing, and wished for one of these moments?

Daddy left the room and I looked over at my beautiful baby girl, the one who looks so much like my forever baby that sometimes it's painful to do so.  I reached around and tickled her until we were both laughing so hard we could barely breathe.  Then she looked over at me, sleep lines still not completely gone from her cheek, and in all her 6-year-old innocence said,

"Mommy, there's a tear in your eye."

"I know, Baby."

"But why, Mommy?"

"Because my heart is so beautifully broken and full all at the same time."

Although she probably didn't totally understand, her response was perfect.  She simply reached up and caught the tear as it fell, then snuggled closer.  And in that moment, that crossroads of the beautiful moment given and the one that will never be, I couldn't help but think of that baby girl and her Momma.  So, to the woman who brought her wide-eyed, giggly girl to have her picture taken with a princess fifteen years ago:

Thank you for that day.  Thank you for this moment with my own daughter.  And thank you for the opportunity to know and love YOUR princess.  I assure you, she's everything you'd ever dreamed of and more.

Friday, September 20, 2013

The Pillow

I asked for a dream and I got one, but it was the kind of dream that makes me want to scream when I'm told to try and "get some sleep."  This is what happens when I try...

It was a strange mix of two women experiencing something at the same time. The two women being my "now" self and my "dream" self.  In the dream, I knew that Easton was going to die long before that day ever came.  The "now" me knew the twisted agony of loss and kept encouraging my dream self to cherish every precious second, to soak up every scent from every fiber, and to trace every line with my finger.  At times he could even speak and would ask questions that suggested that he didn't know he wasn't going to have a future.  Other times, he was that baby that I knew. He was the one that I was nursing as he was staring up at me with such innocence.  You know how your baby looks up at you mid-meal and when they catch your eye and smile, milk runs out of their mouths and your whole being is consumed with love for this little person?  It was that moment, and in that moment I was telling my dream self to forget the idea of wiping away that milk that would soak my clothing as it dripped from his mouth.  I urged the dream me to envelope myself in that moment, pulling him closer to me, letting him nurse longer.  Forever wouldn't be too long.  In fact, forever would be perfect.

When he was able to ask questions about a future I knew he wouldn't have, my now self told my dream self to just answer as if we had all the time in the world.  Tell him that someday he'll be begging for a car and that first taste of freedom.  Tell him that the books will get heavier as he nears graduation.  Tell him that you'll be there on the day he tells you he met the love of his life, and although you vowed you never would, you'd secretly pester him about grandchildren. Tell him these things and save the pain for later.  Save it for when you alone are experiencing it and he is in a place of peace.  Carry the burden of relentless pain over the "never wills" on your own and spare him that moment.

Then I woke up, my body shaking violently, wracked with sobs.  The sleep stupor gave way to the harsh slap of reality (as it always does) and the realization that he was already gone settled in once again.  There was no longer a dream self.  There was just that now self.  The one who'd already cried a thousand tears.  The one who'd already isolated herself from the world she'd once known.  My now self raged with anger as I cried myself fully awake.  My face hot, and my tears hitting my burning cheeks, I rolled to my side to crush into my pillow and bury the sound of sobbing because the now me had already woken too many in the middle of the night with her pain.  No reason to do that again.  Instead, I cursed whatever silent power had allowed me to dream in such a painfully paralleled way.  In my head I was screaming at how unbelievably unfair all of it was.  Of course I'd asked for a dream, but did everything have to come with an edge, a knife just waiting to dig into a still very open wound?

But, as I lay there letting my body regain some semblance of control, I began to see the dream from a different perspective. This is how it could have been if you would have known. At one point, we could have learned of his disorder, but because he didn't fit the bill, the doctors didn't pursue it.  Babies with this disorder DIDN'T get better.  The first hit should have killed him.  I remember when we finally did test him, and I sat alone in his room with him, reading what a positive result would mean.  I clutched his hand and BEGGED for them to say they'd gotten it wrong and that he actually had cancer.  PLEASE say he has cancer.  PLEASE tell me that we are fighting a disease that said that though our chances are small that we at least have SOMETHING to fight.  TELL me he needs an organ.  I have all of them, and he can have any one of them.  Just give me that chance, because I know that this particular disorder means one thing...no future.  After that positive result there would be no begging, no pleading, no last glimmer of hope.  There would only be pain and impossible decisions.  And that's exactly what happened.  How could a "yes" carry with it so much undeniable "no"?  It meant no more possibility.  It crushed my being in a single moment.  It wiped away any hope of any "prayer" being strong enough to save us.  This was it.  This was reality and living it for the next 12 hours was indescribable.

So, maybe this dream was yet another "gift."  Maybe it was showing me how it might have been had I been forced to know that each moment no longer represented the joy of a "first", but instead came with the sting of a "last."  Maybe someday my gifts won't come with such excruciating pain.  Maybe I'll be allowed to learn a lesson covered in goodness and light instead of being shrouded in unrelenting dread. Maybe my dream self and my now self will feel loved and protected enough to really sleep again.  Maybe. But for now, the pillow still catches the tears and stifles the screams...for both of us.

Wednesday, September 18, 2013

Forever Baby

Your friends are in school now.  Did you know that?  Three-year-old preschool has begun.  They wear their new backpacks and tennis shoes and spend a few hours learning their colors and shapes.  Some of them cling to their parents' sides and others race ahead, not wanting to wait another second to start their school day.  And I get to watch all of it.  I get a front row seat to what will never happen.

Sometimes I imagine the things I'd be doing during your school hours if you were still here with me.  I assume I would have had that same look of mixed emotion about letting you go that first day.  I'm sure I would have mentioned that you were growing up too fast.  But, now when I hear that from others, my immediate thought is that it beats the hell out of the alternative.  I don't think anyone actually wants that "forever baby" that they think they do.  I have one and it doesn't mean what they think it would mean.  It doesn't mean that you get to keep all of the wonderful parts of infancy and complete dependence.  Instead it's a never-ending list of "never get to" moments. I didn't get to see your little face looking back at me as you joined your friends for a day of playing and learning.  I didn't get to laugh at your silly choice of backpack.  I didn't ever utter the words, "he's growing up too fast" or "what will I do with two hours to myself?!"  Those things didn't happen, and they won't.  But why?...

Your "class" is made up of all of those babies we used to see waiting for siblings to get out of school.  They're still here.  They grew up.  Why didn't you?  I know some will throw out the name of a disease at this point, but that isn't a sufficient answer for me.  I need to know why I won't be getting a puzzle piece picture frame of a curly-haired little boy.  I want to know why my fingers won't stick together as I try to separate  3-year-old works of art.  I have to know why the moms around me get to do these things we all imagined were inevitable and I don't.  Why?  Didn't I want it too?  Didn't I complain about the same stupid things they did?

I still pause several times daily and marvel at the fact that you're not here.  A stoplight can cause a violent burst of fresh tears as I realize the silence of my empty car is now supposed to be the norm.  A momentary lapse of memory can leave me curled in the fetal position for an entire day when I accidentally turn your favorite show on, but then can't find you smiling up at me from your Elmo chair.  And seeing those babies run to their mommies after preschool will inevitably take me to my knees.

I don't know how we got here, you and I, to this place of seeing each other only through signs and dreams.  I suppose I was given what everyone else claims to wish for, right?  I have a "forever baby."  Well, I have a new wish and it doesn't involve you being frozen in time.  I know I'll never see an updated picture of you.  I'll never clean the glue off your fingers after a day of popsicle stick art.  We'll never sing "Wheels On The Bus" as I drive you home from school.  But, if you could, allow me to sleep long enough to dream of your beautiful three-year-old self.  Please give me at least the illusion of my curly-headed monster running through the school parking lot to be wrapped up in a hug. Let me feel your arms circle my neck and squeeze the pain away.  Let me get lost in one sweet moment of a promised future, a growing boy, and no sign of that coveted forever baby.

Monday, August 19, 2013

First Day

The house is clean and everything is in its place.  I wish I were tripping over toys and cursing about the mess...

The supplies are all packed and ready to go.  I wish that I'd forgotten some of them...

Everyone has the haircut they wanted for the first day back.  I wish I hadn't had time to consider that...


The first day back to school brings so much anticipation for so many.  I see numerous posts about everything being "ready" for that special first day. Some are worried about what outfit will be best to ensure the best start for a successful year.  Others are teary-eyed at new milestones reached.  Everyone is planning something for that first day back.  Maybe it's a special picture, or a new lunchbox. It could be any number of things, but in some way we all prepare for these moments with anticipation, and try to begin any "first" in the best way possible.

I was thinking about what my perfect first day of school would look like, if I got the chance to draw it up myself.  I would start by complaining the night before that the house was a mess and that I'd forgotten about three things on each child's list.  Then I'd finally rush through getting kids in bed and drag myself back to the living room to change, medicate, and hold my baby, silently begging him to give me just ONE night of sleep.  He would undoubtedly keep me awake long after everyone else had fallen asleep and I'd resent him for it.  I would finally get him down and make an attempt at sleeping myself only to be woken up at least 4 times throughout the night.  I'd stare blankly at the clock, watching my precious minutes of sleep time slipping by as I held him and rocked and rocked and rocked.

When morning came, I'd drag myself out of bed and rush through breakfast, and maybe comb someone's hair, or maybe not.  I'd be frustrated at the lack of organization and any semblance of a schedule. I mean, we should at least be able to have that on the first day!  I'd be short and cranky with my children as we got ready to leave because of the sheer exhaustion.  Then I would wake my sick baby and drive everyone to school only to watch parents who have it all together taking pictures outside for the big first day.  I wouldn't have had time to even comb my hair and taking him into such a germ-infested place was out of the question. So, as other moms took their babies into their new rooms, I'd trust that my kids' premature independence (born out of necessity) would carry them to the correct places.  That point is usually when the frustration became to much and tears would fall, but only a few as it would be seizure counting time and I would need clear eyes for constant movement between the road and that sweetest, sleepy boy in my rear-view mirror.

None of those things will happen this year.  Everyone has exactly what they need for school.  Everyone picked out the "perfect" thing to wear.  Everyone will be well-rested, and breakfast won't be a sprint.  I have such mixed emotions about the perfection of this day.  On the one hand, I'm monumentally grateful for the opportunity to parent my children without feeling rushed or obligated to get it "just right."  I'm even grateful for the moments of perfection we get to enjoy.  But, on this night before the first day of school, I find myself aching for the frustration, yearning for the torment of another chaotic day, and burning for that sweet, sleepy smile in that mirror.

Sunday, July 28, 2013

Go Back

I need to go back and tell her.  I need to tell her that the first time she holds him and feels that her family is "complete" is exactly the moment that will be her coffin when he's no longer there.  I need to tell her that all the times she buries her face in his soft neck are precisely what will bring her to her knees on a daily basis once that neck has been kissed for the last time.  She needs to know that the first time he gets really sick will seem like a skinned knee compared to the anguish and unknown of what is coming.  Somehow I've got to tell her that coming home from the hospital after that initial illness doesn't mean that she's "won" anything.  I have to go back in time and have the conversation that lets her know that no matter how many parts of her die, no matter how hard she "fights", no matter how many pieces of her life that she gives up along the way, she cannot make him stay. There has to be a way for me to warn her about those memories she thinks she's making.  I need to tell her that the happy times full of smiles and laughter will eventually become razorblades.  That they'll know exactly when and how deep to cut in order to leave her a gaping sieve of pain, but not enough to completely end it. They'll tear at her flesh until there is nothing left but a shell, and she'll be expected to be ok with living in that shell.  She'll be expected to want to wake up another day, only to be cut again and again.

She looks so happy right now, but I know what awaits her.  Shouldn't I be able to warn her?  Shouldn't I be the one to tell her that what's coming will leave her a dead woman among the living?  But, I can't.  It isn't possible for her to know what lies ahead.  No one will tell her.  No one will turn her face away from that soft neck for fear of the future pain.  She'll bury her face in it again and again and drink in his beautiful scent, all the time assuming that she can always come back for more.  When he gets sick she'll push and push and let herself die so that he might live.  She'll forget her friends and her family.  She'll ignore her own needs, and all for nothing.  For now, my inability to give her that information is her gift.  The gift of ignorance.  And although I may be wiser to what's in store, although I may know something that she doesn't, I'm grateful for her innocence. I'm grateful for my inability to crush her.  That will come soon enough, and when it does it isn't the presence of the biting razorblade memories that will be her end, it's the absence of that sweetest scent that will mortally wound her soul.


Wednesday, July 24, 2013

Cheap Seats

I recently read in one of my MANY books on grief and afterlife, about how people surrounding the grieving person were struggling to do the "right thing" when it came to comfort.  One of the things the author talked about was going to a library and finding books on grief and coping mechanisms.  Although I know that there is no rule book for grief, and no way that any one person could possibly write the perfect manual, I do think that this is one of the better ideas.  And that thought brings me to the pieces that I would add to such a book.  I'm typically uninterested in academic degrees alone than I am in such a title playing a submissive to role to actual life experience, and am much more likely to listen to insights about grief from someone who has a PhD in pain. Having said that, these are my thoughts.

SIT AND LISTEN. That's it. It's really that simple.  Show up and sit down. But, only do so when you have nowhere to be because grief doesn't understand time or appointments.  I would advise you not to give the impression that you are constantly available because, first of all that isn't true, and secondly, you can't be all things to another person at all times.  It's just not feasible.  It's sort of the "grab your own oxygen mask before applying it to others" airplane rule.  And think about it, isn't saying that you can do ANYTHING for the grieving person sort of implying that they could be doing something differently as well?  That maybe if they worked harder, prayed harder, meditated more, reached out, etc, etc, etc, that things could be better?  Listening also means mouth closed and ears open.  This is the hardest part, but the best thing you can do is to just be. Just listen.  If, however, you sense a break in the outpouring of grief in which you feel compelled to respond, immediately remove these next few phrases from your brain, thereby making it impossible for them to reach your lips:

"You should..."
"Yes, but..."
"You have to stay strong for..."
"Maybe if you just..."
"In a better place"
"An angel now"
"Time heals..."
"I understand"

None of these things are helpful, because there is no fix.  There is no "all better."  There is no "someday."  Those possibilities have been erased.  Know that if the person you are listening to (not TALKING to) has made it this far in that particular day, it's likely all that they are capable of doing.  And the same will be true for tomorrow and for each tomorrow after that.

CRY. I'm often surprised at the number of people who shy away from talking to me because they "didn't want to break down because that's the last thing you need."  Interesting.  I suppose I might feel the same way if I weren't the one living this, but because I am I can tell you that I've never once been upset with someone for sharing in my pain in that very physical show of emotion.  How could you NOT cry?  And if crying makes you uncomfortable I suppose it probably is better to avoid talking to me, or anyone else who's grieving for that matter.  But know that your tears cannot make this worse.  Your emotion doesn't lessen ours or make it go away.  The grieving person will be able to let you know when it's too much because they'll simply move on, as they've lost the ability to take on any more.  So, just let the tears fall, at least for me.  I'll likely be right there with you.

EXPECT NOTHING. This happens to be exactly what a grieving person has to offer. Nothing.  Expect that phone calls will not be returned.  Expect that your biggest gesture of love and comfort may not be immediately noticed (although I will tell you that it doesn't go completely unnoticed).  Expect that the grieving person will say something that makes you uncomfortable.  Examples:

"I'm SO angry!  I hate everyone!"
"I can't possibly continue living another second."
"I need to drink/smoke/sleep to get through the next few minutes/hours/days/years."

Do you know what your response is to any one of these three things? It's quite simple really.  The only required response to anything related to the above statements is NOTHING.  Say nothing.  That's right.  You have absolutely no control over how this moment/day/year/lifetime turns out for this person.  You do, however, have a choice.  You can hold their hand while they do it, or you can walk away from the pain.  And although the latter may sound cruel or harsh, the truth is that it is just as acceptable as the former.  Grief is ugly and unpredictable.  It's exhausting and relentless, and sometimes that is just too much for someone whose view is from the sidelines.  And no matter how close you are to the situation, your view is always from the sidelines, from those cheap seats located in the furthest reaches of the stadium.

CHEAP SEATS. Keep this important aspect in mind as you watch this person navigate their own grief.  You may be extremely close to the situation.  You may have your own pain to deal with associated with the loss (and if this is true, it is unlikely that you are the one being sought out by the grieving person). And as much as you feel for that person and as often as you think/pray/meditate on their behalf, you are still viewing it from the outside.  You have moments when you can "forget" for a time.  You can get dressed without feeling guilty for continuing to live.  You can drive a car in silence and not be completely blind-sided by a horrifying image that you only wish were a nightmare, but that you know you actually did experience.  Those times of mental playback can be so incredibly vivid and can drop you without a moment's notice.  The grieving person doesn't have the luxury of experiencing this from the periphery, so remember when you think you have an "answer" or a suggestion that you've rested.  You've stepped away for a moment.  You've lived. Take that moment of reflection on your view from the outside and be grateful that you missed out on the front row.



Saturday, July 6, 2013

PICU vs. PITA

I've got an idea for a new "reality" tv show.  First I'll explain how I came to this mind-blowing discovery.  I happened to be flipping through channels and I had to get up and attend to something else, so I left it on the current channel.  When I returned to the tv I noticed that the commercial was over and the show that was on was called, "Say Yes To The Dress."  I was sort of preoccupied so the show remained on my tv and I started to catch glimpses of what the people were trying to do.  Here are a few gems from the episode I saw:

"I just want everything to be PERFECT for this wedding because I'm kind of OCD about it."

"I'm getting really nervous because I haven't seen the dress in so long and I'm just hoping I like it as much as I did then.  I mean, can you IMAGINE if I didn't like it?!?"

"I can't believe it, but this ISN'T at all the dress I remember wanting.  For one thing, it's a little more white than ivory..."

This got me thinking about some clips I saw (by accident) of the show "Toddlers In Tiaras."  I specifically remember a mother telling her child that her hair looked awful and that she needed to keep her fake teeth in because her regular ones were "hideous." You know, hideous in the way that only a 5 year old can be...the nerve those children have, losing their baby teeth at such an inopportune time.  I also saw one of the girls talking about how she would "just die" if she didn't win grand cupcake supreme al a mode or whatever the hell it was.

How can I put this in a way that is tactful, yet gets my point across?...ARE. YOU. FREAKING. KIDDING. ME????  Screw tactful, I'm just pissed.  You've GOT to be joking.  We're talking about a perfect wedding dress?  Really?  Perfect teeth on a five year old?   A perfect ivory versus a less than perfect white????  This is absolutely ridiculous. And people WATCH this crap.  Tell me you don't get all teary-eyed when the bride's dress doesn't fit like a glove.  Tell me you don't wait with baited breath as the entitled, self-centered, ego maniac deliberates her final say on whether or not this piece of fabric is up to par.  Please tell me that's not what's driving people to watch these shows.

Needless to say, 45 seconds of the show was all I needed to see before changing the channel and seriously considering throwing the remote through the tv.  This brings me to my original thought, the new reality tv show.  I would call it PICU vs. PITA.  This is how it would work.  The show would feature just a room with chairs lining opposite walls.  One side would consist of the "characters" from these two shows, and the other side would feature PICU moms.  For those of you who don't know (first of all consider yourselves extremely fortunate) the PICU is a pediatric intensive care unit. Each time someone from the aptly named Pain In The Ass group complains about anything, the PICU moms get to choose someone from their team to "teach" a little perspective.  For example:

PITA Mom: "My daughter had to go up on stage with an imperfect hairdo!  The horror!!"

PICU Mom, whose daughter just had to be consoled as she cleaned up the clumps of hair that fell out onto the pillow as a result of the poisonous chemo treatment she just received, doesn't need to say a word.  She's simply allowed to meet the idiot in the middle of the room and slam her in the head with a 2x4.

PITA Group: "But, if my dress doesn't come in a sweetheart neckline, I may as well call off the wedding! It wouldn't be perfect anyway. I never get what I want!"

PICU Mom with no malice in her voice, only fatigue and endless pain: "Do you know what the perfect day would be for our family?  The day that we even get to hope that there could ever be the possibility of a wedding."

PITA Mom: "I hate to see her mess up on stage like that!  She's worked so hard!"

PICU Mom: "Hard? Today I had to watch as the medication that has the same potential to kill my son as it does to cure him, drip from the top of his iv pole into his battered arm. And I told the doctors to give it."

I know this probably seems extreme and crazy, but guess what?!?!  Just because you don't WANT to see it, doesn't mean that it doesn't exist.  REAL people deal with this every day.  They have no idea what it means to feel anxiety over a botched pirouette. Their anxiety comes from countless sleepless days and nights.  Their fear lies in how much longer they can scrape by, having not eaten in 4 days because food isn't a priority.  And as awful as all of that is, as painful and insane as the PICU existence can be, there are those of us who would give everything we have to get the chance to fight through that Hell again.  We'd give it all up for one more smile, one more whiff of our children's perfect scent, one more grasp of their hands. So, yes, your dress may be less than perfect and your child may not be named little miss candy corn princess, but I have to say that I don't really give a damn.  Unless of course you're signing up for my show, in which case, let me be the first one to greet you...with my 2x4.


Tuesday, June 11, 2013

Stranger

I don't belong here anymore.  I don't fit.  You can't live through this kind of pain and then function in the world that existed before your fall.  Somehow people still care about mundane things.  Even though they know he's gone, they still have the capacity to think about something other than the gaping hole he left.  I don't.  I can't focus on anything but the pain.  How could I not?  How do you ignore a fire in your chest?  This is one flame that can't be extinguished.  It can't be fixed.  But, the difference between myself and everyone around me is that I know now that sometimes that's just the way things happen.

I question myself constantly. Did I try hard enough?  Did I "fight" as people claim to be doing every day? Did I give up?  I must have, right?  I mean, if it's true that others are making it because they're fighting, the only logical explanation for someone who no longer has that option is that they've failed.  I get in trouble for saying that.  I'm berated for thinking that I could have done something to protect him, to have saved him from the Hell that he experienced.  But tell me what I'm supposed to think.  If it's true that you aren't at fault when your child is in pain, why do you keep trying to prevent it?  Why do people continue to kill themselves to stay one step ahead of their children's happiness?  And I'm not even talking about sick children.  I'm talking about all parents doing everything they can to prevent even the smallest injustice from plaguing their child.  The idea that anyone has any control over that makes me angry.

I'm angry because I couldn't protect my children.  This is why I don't fit.  I will never again worry about whether or not my child has a good nap, or the right cup to drink from, the best teacher, the right sports team, etc.  None of that matters, and I know that.  Anyone can read that sentence and see that of course those things don't matter, but you don't KNOW it until you KNOW it.  Some would say that this type of thinking is a gift, a blessing even.  You no longer concern yourself with details and are therefore able to focus on things that matter.  But, I assure you, this is NOT a gift.  It's isolating.  The loneliness on this side of things is so overwhelming that it goes beyond description.  How are you supposed to engage in conversation with friends and family when this is your way of thinking?  How do you offer any insight into anything other than the giant, raw wound that permeates every part of  you?

Sure there are times when I talk about other things.  I can even be pretty convincing in certain conversations. But, I'm not fooling myself.  The pain is still there.  It's as strong as ever, even when I'm smiling.  Just because I'm not sobbing at the moment doesn't mean that the pain has subsided even a little.  It's jarring and crushing, all day long, every day.  It doesn't go away when a fun day is planned.  It isn't hiding during a perfect distraction.  It's there.  Always.  Never leaving.  This is not conducive to normal relationships with normal people.  I hear them talk about typical life happenings and I'm overcome with emotion.  I'm not angry at them.  EVER.  I'm jealous.  I ache for the ability to assume anything is within my control.

I know what kind of response is elicited from a statement like that.  "She's grieving.  She's sad.  She only thinks nothing is in her control because of the huge scar on her heart."  But, I know better.  I know the truth. The only question is, how do I live with that truth?  I have to learn how to be a completely different person.  Every decision I make, every response I have is a combination of the old me and the new me.  The new me always gets more consideration.  That, too, is no longer within my control.

My hair is the same.  My eyes are the same blue.  I still walk with the same stride.  Even my smile can be faked enough to look like it always did.  But, no matter how many similarities remain, the woman in the mirror is a complete stranger.

Friday, May 31, 2013

My Bwother

I've had a hard time articulating my feelings lately.  The words in my head aren't doing my heart justice, and that's frustrating for me.  Tonight, my 5-year-old daughter, Morgan, expressed what I knew was coming for a couple of weeks now.  And the fact that she can't say her "r" sound makes it even more heartbreakingly beautiful.  So, I've decided to let her do the talking.

"Mommy!  This isn't wight! It's not the same without my bwother.  I want to hold him.  I want to see him.  I want to hear his little giggle.  Wemember his giggle, Mommy?  Wemember how he used to destwoy my towers in the living woom?  Wemember how he laid his head on my chest when I hugged him, and then pushed me away when he was all done?  Do you wemember, Mommy?"

I remember, baby.  I remember every second of every day.  I remember when I'm playing with you outside. I remember when I'm forcing a smile because you've drawn a picture of him.  I remember when you smile and I see the same crinkle in your eyes as your baby brother. I remember when I hold you in the chair and the softest scent of baby shampoo nearly breaks me in half.  I remember in the car, in my bed, in the kitchen, in the store, in the dentist's office.  I remember with every breath.

"I know I don't get to decide for my soul, but sometimes I don't like being here.  Sometimes I want to be an angel and go to heaven and just get to see his face again.  It isn't faiw, Mommy.  My othew fwiends get to play with their bwothers every night.  I just want one mowe time.  Do you want one mowe time, Mommy?"

Sometimes the pain of living is so overwhelming, I feel as though it can be seen as some sort of color emanating from my body.  Is it red for angry?  Is it blue for pain?  Black for emptiness?  I know this feeling well, baby.  Sometimes I hate the people I see.  I hate the trees, and the ground, and the sky, and the "rainbows denoting salvation and promise for tomorrow."  I hate the air that I breathe.  It's at those times that no amount of placating, no ridiculous platitude can pull me from the depths of the Hell that I'm in.

Through choked sobs: "Mom-my, I-just-want-him-back.  I-can't-stop-the-cwying-some-times.  Help me, Mommy.  Can you make my heawt stop huwting like it's bwoken?  Does your heawt huwt too, Mommy?  Do you have the bad cwying sometimes, too?"

There are times when the pain is so much a part of my being that I can do nothing else but break.  It's during these times that I have to just stop everything else.  It doesn't matter if my house "needs" cleaned, or if I "need" to get a workout in.  Nothing else matters but my need to crumble into a heap of heaving sobs.  And now, I have to witness yet one more thing that I can't fix, can't heal with a hug. Tonight, I had to be on the other side of those sobs.  She has the same guttural scream, the same pleading in her eyes.  But this time, I was doing the watching.  I took cues from my sources of strength.  I held her as she cried and was silent as she screamed.  I waited until her breathing slowed and evened out before I tried to offer comfort.  I avoided saying things like, "he's in a better place."  Instead, I just promised to love her, because that's the only thing I can promise anyway.  I told her about the amazing gift I was given because of her.  I told her how I would never have to wonder what E would look like when he's 5, 10, or 20.  I'll never have to wonder because I seem him in her eyes every day.

"That is the best gift, Mommy.  I don't need any pwesents fow my biwthday this year.  All I wanted for my biwthday was to look in his cwib and have it NOT be empty.  You should have your bwother with you when you tuwn 6. I still talk to him, but he doesn't answer me. I need to know he can hear me.  I just want to see him one mowe time."

We stepped outside to get some air, and to our surprise, it had FINALLY stopped raining.  Not only had the monsoon quieted, but the sun was actually trying to make an appearance.  I looked toward it, and actually gasped out loud.  It was BEAUTIFUL.  I have seen the rays of the sun shining down through the clouds hundreds of times, but this I had never seen before.  Rays of sunlight were shining straight UP.  The sight was so breathtaking, and I couldn't help but imagine the immense beauty of this same sight from the other side of the clouds.  I piled my children into our van and drove past the trees.  I stopped, rolled down the window and said, "Hey, Morgie...I think someone is talking to you..."

The van was silent for a long time.  I took a picture and just stared.  Then from the back seat, I heard a soft, breathless whisper
:

"Thank you, Beastie..."


Wednesday, May 22, 2013

Three

Toy cars.
Elmo.
Mickey Mouse.
Skinned knees.
These are things a three-year-old should have on his birthday.  I don't feel like those things should be so much to ask.  I'm not asking for perfection.  I don't need potty training, or perfect manners.  I don't care about the best birthday cake and the most amazing gifts.  I don't need the perfect party theme or balloons and favors.  I just want you.

Your birthday is this Saturday, and as a gift to myself I picture how you'd look if you were here.  But, if I get to wish, I am going to go all the way with it.  I don't picture you here as you were.  I see you as you'd be if your body hadn't betrayed you.  Your curls are slightly longer, but the ornery grin is still there.  I struggle to keep up with you as you run from me giggling.  Run.  How unbelievably beautiful that would be.  That's my wish for you on this third birthday.  RUN, baby.  Move in ways that you couldn't while you were here.  And if you could, stop just long enough to let me know you're here.  I'd really love to "feel" you on that special day.

Your brother and sisters will be buying gifts for you.  They are excited to get you exactly what you'd want.  We know we'll just have to give them away in the end, but what's Super E's birthday without an ETO?  We'll  send you love and kisses from your favorite place on earth.  Look for the lights in the sky because I'm sending three lanterns your way.  I know you'll love them.  I realized I'm wearing the shirt you always liked best. Remember?  The one with the stars on it?  You used to point to them and look at me as I counted them.  Now you get to see the stars and your lanterns from a vantage point that I can only imagine.  Keep pointing...I'll keep counting.

One...Two...Three...

Happy Birthday, my sweet baby boy.


Tuesday, April 30, 2013

Goodnight Baby Boy (April 30, 2013)

Goodnight baby boy. (April 30, 2011)

Red race car pjs on because it's warm tonight, and because you like vroom vrooms.
We've rocked and read our book.
"You Are My Sunshine" has been sung and the nightlight is on, just the way you like it.
I tuck you in and quietly leave the room, so grateful that you've gone to sleep.  
I head down to my own bed because it's been a long day and it's going to be a busy weekend because your cousins are staying with us.
I lay down on my pillow, read my book, and fall asleep rather quickly because my bed is comfortable and this is my routine...

"SHANNON!!! SHANNON!!! Something is wrong.  He's shivering or twitching or something!"
Who's talking?  Who's saying this?  This must be a dream.  Who's shivering?  Get them a blanket...
Oh, wait.  My sleep fog is lifting.  It's my baby.  It's my husband holding my baby.  Okay, focus.
I'm nursing you.  But wait, the twitching is still happening.  Should I stop?  Yes, I should stop.  Why?...
What if you have to have surgery?  I should stop.
I should call a doctor.  It isn't stopping.  You're looking at me and even smiling sometimes, but that twitching...
No, I need to call 911.  Yes, 911:
"Something is wrong with my baby.  He's twitching.  Coherent? Yes.  Wait, I think so???  My address?  Ummm, ok, I think I can remember that.  I'm standing in my driveway holding him.  I'll wait for you."
Daddy is holding you.  He looks so scared.  He needs me to tell him that this is ok. I can't. 
I'm shivering. 
Is it cold? 
No, it isn't.
Why is this taking so long? Why are you still twitching?  Stop, baby, please stop.
I leave you with Daddy while we wait in the driveway.  I'm scared to hold you. 
 SCARED to hold my own baby?  What's wrong with me?  What happened?  I put you to bed!! 
I was asleep.  ASLEEP!  Because that's what you do at 3 am, right?  So what is happening?  
Why are you STILL twitching?  This should be done now, right?  Whatever this is...
Wait, nurse brain is kicking in.  This must be one of those febrile seizures.  This will stop soon.
We'll get some medication.  It will be scary, but over soon.
The ambulance is here.  Daddy is handing you to me.  Maybe just being in my arms will stop this.
The paramedic has medication.  Good.  That's what we need.  Give it to him. NOW!
It's not stopping. Why isn't it stopping?  Can't this man see that I need this to work??  Make it work!
NOW!
We must be at the hospital now.  The driver has stopped.
They're rushing us in.
Now they're cutting your red race car pjs off of your body so they can give you the medicine.
Can you feel my hand?
 Are you ok?  Can you hear me?  I'm here.  I'll always be here...

You weren't ok.  I know that now.  And now, I'm not ok.
I will stay up with you tonight as I did that night.  I will not sleep until your seizure stops.
Every year. I promise.
It's been two years since that night we were shivering in the driveway.
It's funny, though because so many things have happened since then but so many things are the same.
I'm still shivering. And it still isn't cold.
Your nightlight is on, just the way you like it.
"You Are My Sunshine" has been sung.

Goodnight baby boy. (April 30, 2013)



Saturday, April 27, 2013

YES

Grief is a tricky thing.  It's a constant barrage of warring emotions.  However,  in that moment when you're feeling a particular emotion, it's as if it's the only one you've ever had.  It consumes you and you're incapable of anything but that feeling, and only moments later you're inundated with emotions that are in direct opposition to what you'd just been experiencing.  This is why one really can't say something "right" or "wrong" in these situations.  Someone can say something in one moment that will be perceived in a particular way, and the same utterance only days later will evoke a completely different response.  As you can imagine, this is extremely exhausting, and sometimes you just shove all of those burning emotions down, momentarily accept the things you can't change, and ask the important questions.

Today I was having one of these moments.  It often happens when I'm driving alone.  I'll be pulled in a thousand different directions, and then out of the desire for nothing other than self-preservation, I will quiet the chaos in my head by simply accepting my loss.  I find myself asking my son questions when I feel like this. Today it went something like, "Ok, I know I couldn't do anything to have changed what happened.  I know that you're gone, and you aren't coming back. But, I need to know that you knew love.  If the only thing in my power was to teach you how to love and be loved, was the time we had together sufficient for you to have learned this most important thing? Did you know how very much I loved you?  Did you feel that same love for me?"

The deafening silence caused me to turn the radio on, and I heard the introductory chords of an old, familiar song.  Each word that came through the speakers brought more tears...

Sometimes late at night, I lie awake and watch her sleeping
She's lost in peaceful dreams, so I turn out the lights and lay there in the dark.
And the thought crosses my mind, if I never wake up in the morning,
Would she ever doubt the way I feel about her in my heart?
If tomorrow never comes, will she know how much I loved her?
Did I try in every way, to show her every day that she's my only one?
And if my time on earth were through, and she must face this world without me,
Is the love I gave her in the past gonna be enough to last, if tomorrow never comes?

Some will say that a grieving mother will grasp at anything they can pass off as a sign from their child.  I would agree with this sentiment, because the pain is so very physical and the burning in your heart can only be quelled by the person you are missing.  Sometimes I have moments where I search everything surrounding me for just the smallest glimpse of my Easton.  I've learned that in those times, I usually find very little, and then it can feel silly to be searching for something that probably isn't there.  However, sometimes the signs are indisputable.  This is one of those times.  I know in my soul that this was our moment.  He was answering the burning question.  I have finally heard my son's voice, and although he sounded very much like Garth Brooks, I know he meant for me to hear this song.

So, I thought about those questions: If my time on earth were through, and she must face this world without me, is the love I gave her in the past gonna be enough to last, if tomorrow never comes? He was only 2 1/2 years old and his speech was limited. And even though the pain is mostly unbearable, even though there are still times that I just can't breathe and screaming is all I can do to release some of the burning, I can say to my baby with absolute certainty that the answer to his question is a resounding...Y.E.S.

Monday, April 8, 2013

Where Are You?

Where are you, Baby?  It may sound silly, but I was wondering if maybe finally seeing the sun would help me find you again.  I look for you everywhere I go.  You're not in your crib.  You're not in your carseat.  You're not outside on our swing.  I have trouble even sitting on that swing now.  It used to be one of my favorite parts of our home.  I can't hear your baby voice when I sit down and pretend you're next to me, and that silence is too painful.  I can't feel your pudgy hand pulling on my sleeve because you want me to pick you up and go a little higher.  The sun didn't bring you back.  So where are you?

The truth is that the sun actually makes it harder to bear.  We were such good buddies on nice days.  Remember our bike rides around the neighborhood?  Remember that moment when I stopped and was absentmindedly looking at my phone, and you said, "mo!"?  I do.  I remember looking around, frantically, wanting someone, anyone to have heard what I'd just heard.  My baby wanted to go again, and had actually told me so.  Your face was so funny when I reached around to kiss your little cheek as tears were rolling down mine.  You had no idea what gift you'd just given me.  Thank you for that day.  It was a good day, right?  It was warm and sunny and we were together.  So, why did you leave?  Where are you?

Daddy is back on the ball field again.  Are you there?  He would really like it if you were.  Maybe you could take a ride on the gator sometime.  Please let him know you're there.  I love him and his pain is too much to bear.  I see him hurt as he watches little boys play catch in the stands.  You must know how much he loved you, and how many times he pictured a ball in your hand.  We would have shown you everything about the greatest game on earth. You really seemed to love it.  So, where are you?

Your brother and sisters are playing kickball in the backyard and riding their bikes in the driveway.  Remember the time you watched your sister hoola hoop for an hour, and you laughed so hard you fell over? I do.  I remember sitting up behind you on the concrete and laughing with you because no one could escape that belly giggle.  We laughed so much that day that my stomach hurt.  Logan, Addi, and Morgan would do anything to make you laugh.  They love you and miss you every single day.  They want you to interrupt their basketball games by scooting your walker in front of the goal.  They write your name in sidewalk chalk and ask you to come play with them.  So tell me, Baby...where are you?

I can remember the way your hand felt in mine.  I can remember the way you would "moo" every time we passed the cows on the way to Grandma and Grandpa's land.  I still stop there.  I wait to hear you, and I check the mirror to see if you're pointing out the window at your favorite "pets."  I remember that most precious sound...that sound that makes all others obsolete.  Sometimes it was said in protest, sometimes in defiance, and sometimes with such longing.   I can hear it..."Momma."  Did I ever ignore that sound?  Did I ever take it for granted?  Did I ever once fail to take you in my arms at your request?  I hope not. Because now, I would give my own life just to hear that most beautiful sound.  "Momma."  So simple, so sweet, so saturated with love.  Thank you for learning that one sound.  I know your life was difficult, and that everything you accomplished came at a cost.  I'm so grateful to you for your perseverance in learning to utter the one name that makes me feel whole..."Momma."  I love you today and every day, Easton.  I will reach up to Heaven to bring you back down.  I will swim out to the ocean to scoop you up in my arms.  I will run the length of the earth to hug you one more time.  Just please tell me...where are you?

Tuesday, April 2, 2013

"Better"

I'm not better.  I don't sleep better. I still don't cook or clean, and I rarely want to move.  But, the thing is, I don't WANT to be better.  Not right now. Not just yet.  And you know what? That's ok.  It doesn't always feel ok, and I complain about not feeling better all the time, but the idea of letting go of even a small part of the pain I'm in now, terrifies me.  It feels as though relinquishing it takes me further and further away from the time that my son was still physically a part of my life.

So, if you are so inclined to give an opinion, please do so directly to me.  I will gladly explain the pain and horror I relive every single time I try to close my eyes.  I'll give you a play by play of the sights and sounds of the last two years of my life.  I'll try to do justice to the torment and utter despair that takes over every part of your being as your imagined control slips further and further from your grasp.  I could take a stab at describing how differently the world looks when you have to learn how to live in the one where your children actually die.  If you've never experienced this, you aren't in this world.  Even if you're EXTREMELY close to the situation, you're not in it. You cannot possibly know what it's like to wonder every day, how you are supposed to find the strength to stand up, let alone be functional.

It's important that these things are said because grief is so lonely and unknown.  It's full of so many emotions, all vying for their chance to inflict more pain and confusion.  So full in fact, that there is no more room. Absolutely no room for even one ounce of judgement.  The only role anyone has in someone else's grief is to be there to witness whatever they ask you to share with them.  That's it. Nothing more.  There will be times that you'll question their motives.  There will be times that you'll wonder how other members of their family are dealing with their "current state of grief."  My advice?...do so silently, or be prepared for an answer beyond your comprehension.

I can give some insight on parents who've lost a child, because that's what I've experienced.  I would not pretend to understand what it means to lose your husband, your mother, your brother.  I can tell you that losing one child and having others to take care of can be nearly impossible at times.  However, that does not mean that I've lost my ability to love them.  What you must remember is that I'm not parenting your children. I'm not parenting children who believe that missing out on a happy meal toy leaves them short-changed.  I'm not parenting the little girl who throws a tantrum at every small injustice, or the boy who thinks that having the newest video game is a right and not a privilege. My children are certainly spoiled in their own right, but they know better than most adults that you don't always get what you want. They know that Mommy and Daddy don't always have the answers.

As a family, we have moments of unfathomable pain, but we also share smiles and even giggles.  If you do not currently live in my home, you don't see my 5 year old reading books on the couch every night before bedtime.  You don't see the way we look through old photo albums when our children want another glimpse of the little boy who no longer gets to participate in family game night.  You don't see the torture on our faces  as they turn the pages and each memory slices through us with renewed pain.  And still, we do it. Why? Because our children need it in that moment.  And we will continue to do that...together.  However, this is something only the 5 of us can do.  No one can fix it.  No one can offer suggestions as to how we support one another.  The truth is, my husband and I are the best people for this job right now.  Our children couldn't be parented by people who still believe they have any reason to pass even the smallest judgement.  They're wise beyond their years, but in ways that burn your soul.  They can't hear general platitudes and claims that "everything will be better."

Things are not going to be "better." I know that makes people uncomfortable, but we honestly have no room for anyone else's comfort.  We're trying to breathe.  Some days are harder than others.  Some moments are full of crushing pain.  Sometimes we do it together and sometimes we can't bear to witness the pain of another, so we find a way to be alone with our grief.

It's also important to mention that we're inundated with support and love.  We feel it from friends and family daily.  Sometimes it's all that keeps us going.  We'll forever be grateful for the strength of our community.  But no one can save us from this.  We will always be alone in our journey because it is ours and ours alone. If you're so inclined to be there when we're able to live again, we'll welcome you with open arms. Just don't ever expect us to be "better."