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.

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.

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.

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.

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.

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.

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.