Five years

It was grey the day you died.

There was this weird misty rain coming down and I remember stepping out of the car as we arrived at the hospital thinking, ‘this feels like the day she'll die.’

I knew. In that moment. I knew. Something deep within me told me that you were not going to come home with us. Not that drizzly fall day five years ago. Not ever.

The doctors had given us hope the day before, they actually told us things were looking not-as-bleak and that we should go home and rest up because you had a week full of surgeries ahead. A week full of surgeries. What the hell kind of world do we live in where babies are put through the things you were? I am so sorry, Peyton. More than you can ever know.

We took the doctors’ advice and missed out on spending the last night of your life with you. A night that an intern later wrote to tell me she spent in your room with another doctor, dressing you up in all your cute clothes and having a ‘girl’s party.’

Things were looking up—so why, then, when I stepped out into the brisk fall air to see you, did I know? Is that mother’s intuition? I feel guilty to this day over having had that thought because a good mother, the mother you deserved, would have stepped out thinking, ‘today is the day our miracle will come. Today she will be cured.’

I failed you even in that.

This year is so, so different than the others in facing your death day.

What I would like to do is crawl into my bed, pull the covers over my head, and lay in the darkness with my anger and my bitterness and my longing and my aching arms and my heavy heart and my depression and my ptsd and my never-ending sadness at the thought of what you went through and cry until my eyes are dry and my throat is sore and my body remembers.

I need to cry. To wallow. To feel, really, truly allow myself to feel how absolutely shitty this is… again.

But I can’t.

I know that with the sun of tomorrow comes the responsibilities of caring for your brother and sister and it is they who I need to focus my energies on even if selfishly I want it to be my grief.

In that way I was lucky that you were our first because I was able to go there, to really go where I needed to, to feel what I needed to, to hurt how I needed to. I used to envy the loss moms who had other living children to help them get through the day, but I know better now. I know how much more difficult and complicated grief is when you have to be responsible for more than yourself.

I’m in this odd place of having all I ever wanted with your siblings and still yearning for something that can never be. And though my days are so full right now I feel like I am getting to take less time to tend to my wounds and it shows; in the way my body always hurts, the weight I carry despite my best efforts with diet and exercise, my wrinkles, my awful sleeping patterns and ever present fatigue, and worse—the many ways I feel I am less than I could have been for your siblings.

When they tantrum or fight or do the things that two year olds testing the waters do, I wish I was better. I wish I didn’t get frustrated, or tired. I wish I was one of those supermoms that it feels to me that every other mom is, who patiently smiles through their child lashing out. Shouldn’t I be basking in the glory of motherhood every moment of every day? Isn’t that what’s expected of me as a loss and infertility mom? Aren’t we supposed to walk through life thanking every lucky star that we have been given the opportunity to do this thing that comes so easily to others?

I know firsthand to never take one single beautiful moment for granted and this is why I feel angry at myself for being tired, for being frustrated, for selfishly wanting to lay in my bed and grieve you on your death day. I am angry at myself for being five years out and still feeling so broken at the thought of you. I am angry that your siblings have been robbed of growing up with you. That we have been. That at twenty eight I had to buy a cemetery plot and I became an old woman. That this broken world had to throw in our face the horrific truth that no matter what God you pray to or how well you try to live your life, cancer doesn’t care.

I spent a lot of time wondering where God was when we needed him in the hospital and the early years of grief that followed your passing. I’ve since given up on wondering and even that is guilt inducing because if I don’t hold onto my faith how can I ever see you again in the next life?

Tomorrow marks five years since the most horrific of days. Five years since impossible decisions to live with were made. Five years since I held you knowing I would never hold you again. Five years since I watched your spirit leave your body.

I’ve worked to move forward, as I know you would want me to. I love your siblings with all my heart. I try to be what I think you would want me to be in this world but there is this raw undercurrent that is ever present reminding me that this is always going to hurt.

I’m so sorry Peyton. For what you went through. For what we couldn’t do for you. For all you were robbed of in this life. I am so, so sorry, and so sad.

On Facing Your Fifth Birthday

The night before you were born, I couldn’t sleep. I laid in the hospital a ball of nerves—a million questions running through my mind. What would you look like? Were you a boy or a girl? What would we name you? Would you have ten fingers? Ten toes?

The night before you should have turned five, I couldn’t sleep. I cried in the shower until no sound came out. I laid in bed, the all-too-familiar aching in my arms returning.  A million unanswerable questions ran through my mind. How could this have happened? Will grief season ever get any easier? How do I make it through this month without letting your siblings know how absolutely, devastatingly broken I feel?

Today I should be sneaking into your room to sing you Happy Birthday and wake you with a surprise. We should have a party planned for you when you return from school, because as a “big girl” now, you’d be going to Kindergarten, or, maybe I would have kept you home to spend the day celebrating together. Instead I am wondering how to make it through this day without you here.

I am wondering how to keep your siblings from noticing my swollen eyes, my tears and heartbreak, because they are so little and impressionable and they deserve all of me all of the time. I don’t want them to know they’ve never had that. I don’t want them to know that before they were born, a large part of me died. I can’t bear the thought that they might look at me and see the brokenness.

Today I should be planning your party but instead I am trying to find a way, some way, to mark this day in a way that feels worthy of you. If the weather cooperates we will head to the beach and release some lanterns, but it’s a poor substitute for the joy we would feel watching you blow out your own candles, marking another glorious year here with us.

I wish I could be that loss mom who only recalls the blessings you brought into this world. In years past I have focused on your love and light on your birthday post, knowing that there are twenty-seven more days in grief season to go to recall the pain, but the reality is that the hurt of missing you on this birthday hit me with such a wave last night that I don’t know how to do this gracefully. 

I don’t know how to find the beauty in the pain when the memories of all you were put through in your short time on this earth are still fresh. Just as I felt five years ago, I don’t know how any of this could happen.  I don’t know how our reality could possibly be that you are not here with us.

Today marks the first of twenty eight days, your whole life, that I got to touch you, but it wasn't holding you in my arms, it was putting my hand in your isolette. Today marks the day that I watched a tiny baby become a little warrior. Today is the first of a limited  number of times that I got to look into your knowing eyes wishing for more for you. It should mark the day we became parents, it should have been one of the happiest days of our lives, but in reality today marks the second most painful and traumatic day of my life—a close rival in emotion to the day we said goodbye. Today marks the day that we were utterly, and completely blindsided by the cruelty that is cancer.

I know where you are your birthday is Happy. I know you are free of pain and surrounded by those loved ones who have gone before us, and I pray you feel a level of warmth and security that is the opposite of the suffocating emotions that I am feeling down here in this broken world. I just can’t seem to convince myself to be happy about facing yet another birthday without you here.

Some Firsts Are Harder Than Others

There is something particularly special, and difficult, about this Fall.

Special in that it marks five years that my heart has beat for my sweet little Peyton, loving her as I do even though she is not here. Difficult in that this year should have held such a magical milestone.

Grief is so strange. There are so many firsts we never had with Peyton. No first steps. No first words, or even first tantrums. No first rides on a bike, or first "I love you Mommy," moments, though her heart beating against my chest when I held her told me she did. 

There were so many firsts that should have been with Peyton that at some point in my grief I almost, *almost, became numb to them. I think that's what so-called healing is, your mind and body deciding to either numb-up, or give up.

I posted this photo on Facebook today, with the following message:

In another life on the other side of the loss universe, I gave you a hug and sent you off to Kindergarten this week.

I imagine that had she been born healthy, I would have had so much trepedation and so many nerves about leaving my child in the care of someone else for the first time. The reality is that from the moment of her birth, to the moment of her death, Peyton was always in the care of someone else, down to my inability to even make decisions over when to feed or bathe her. 

If Peyton were here, and healthy, this would be the moment in time for me to watch as my little girl became a big girl, and root her on as she walked off independent of me, into a new experience. Because of the cards we were dealt, that moment came in the pediatric intensive care unit as I urged her to please let go and be free of the pain of this broken world, when she took her last breath in my arms and was finally, finally, pain-free and at peace.

Even five years later, you never get over a moment like that. I imagine that in fifty years, I still won't.

I received so many beautiful messages from friends, but one response to my facebook post by a dear babyloss momma friend especially resonated with me: 

Perhaps in that other life somewhere our little ones enter kindergarten together, holding hands and filling the room with joy.

So tonight I am holding tight to the beauty of that image, to the thought of all of the precious and much loved little ones from this community holding hands as they walk into their first day in kindergarten, and all the while I am hoping that wherever Peyton is, she knows how very, very loved she is by those of us left behind.

Fake It Till You Make It

I'm sure just about everyone in the loss blogosphere has now either watched, or heard about, the Ricki Lake Show, and the episode they did last week on the topic of child loss.

I am over at Still Standing today, talking about child loss, and why the advice Ricki Lake's expert gave to a grieving mother of just five months to "fake it till you make it," was exactly the wrong thing to say.

I'll never be okay with this.

If you are looking for a positive or uplifting post, you have come to the wrong place.

Four years ago today, Peyton's suffering ended and my suffering began. 

I would like to say that loving and losing Peyton made me a better or stronger person. I would love to bask in gratitude for all of the lessons she taught me, or feel joy that she is with Jesus. There are a lot of beautiful ways I would love to be able to spin this in my mind, but the reality is that four years ago today my child struggled for her final breaths in my arms.

I will likely never be okay with that. 

I am angry and hurt. I am sad and bitter. I walk a line between feeling incredibly blessed and grateful for the joys in my everyday life, joys that I know Peyton worked hard to bring me, and feeling an immense amount of sorrow over how incredibly robbed she was. Of life. Of joy. Of growing up. Of everything.

Peyton never even felt the sun on her face. She never breathed fresh air. 

She was born into a world where she gave only love, and knew only pain.

I guess four years is not long enough to blunt my anger at that.

What does it feel like?

The first year was intense.
The second felt like Groundhog's day.
The third full of anxiety and apprehension.
The fourth?

Next month would be her fourth birthday, so what does this fourth year without my little girl feel like?

Surreal. Distant.

I wonder did that happen to me? All of that?  Was she ever really here? She feels so far from me some days that the distance hurts more than the memories. Did I really watch her die? Was I that woman who cried and wailed and gnashed my teeth in agony over losing her and my fertility?

Sometimes it is so hard to believe that this life, this me, is the same person who lived through that.

Sometimes my days are so busy, and exhausting, and full of squealing toddlers, and diaper changes, and milestones that I almost feel... dare I say it... normal.

I never thought I would find myself here. In this place that feels a lifetime away from that place, and while my blessings are too many to count, and I am grateful beyond belief for this new normal (or as close to normal as I will ever be) I have to wonder at what expense to her memory this is happening.

My visits to Peyton's hill are few and far between these days. Most often they are (like all attempts at accomplishing things with twin toddlers) hurried as I race to say what needs to be said, or to feel what needs to be felt, before one or both of her siblings start to cry, or fuss, or... or... or...

My Snowflakes are now 17 months old. 17 months that have gone by both at the pace of molasses and in the blink of an eye and they are truly all consuming.

They deserve all of their momma's attention... don't they?

But what about her? The littlest big sister.  What about the one who came first and mewed at my chest and comes to me in the quiet time before I fall asleep?

Does she not deserve my full attention too?

There is no handbook for this. No "How-To" guide on how to be a mother here and there at once, and so my children who are here, who press for my attention and fill my day with the delights of their milestones, they get nearly all of me these days. As a result, I feel a distance from Peyton that I never could have anticipated.

Even things I want to do, like focusing on Doing Good In Her Name, just don't happen. I keep saying next week, or next month, and those timelines come and go without progress because my here and now of mothering twins, and trying to freelance for extra money every free second I have, gets busier (and more hectic) by the day.

Of course the love I have for her is no less, but that connection--the way I used to talk to her in my heart and mind all the time--it is fading.

So what does this fourth year without her feel like?

I guess I would have to say that it feels like I am losing her all over again.

Still Hers

I've been in a sort of funny place this week. Vulnerable. Emotional. I've written a number of posts without hitting publish. I never do that.

We started breaking down Peyton's room this weekend. I know... I know... it's long overdue. These little ones now need their own space, and yet somehow, knowing that just didn't make the task any easier. Neither did the fact that Peyton never actually came home to that room. It was still hers.

I can still feel, see, smell, hear, taste exactly how it was to be in that room in August of 2008. I sat in the chair with my feet up on doctor's orders. Hubs assembled the crib piece by piece and hung shelves. I folded tiny clothes, placing them into lined drawers.

We were ready.

Today marks 1112 days since Peyton died, nearly 1/10th of my life has been spent missing her. 1112 days of looking for answers that don't exist. Of trying to understand who I am now, and figure out where to go from here. I have grown a bit in these last 1112 days. Joy comes more readily now, as does gratitude. But Peyton, my sweet, sweet Peyton. She is no less gone. No less absent from our every day lives. No less a gaping hole in my being.

There is now a couch on its side where Peyton's crib once stood. And a file cabinet. And an office chair. Items stacked in a corner until my writing space can be arranged. The years of grief and dust in which I had written her name on that crib has been wiped clean. The mattress removed, replaced by one with certifications assuring me that there will be nothing toxic coming from it as my child sleeps. That crib, so long identified in my mind as Peyton's, is now the place where Squeaks sleeps (or refuses to sleep, as the case has been this week) in a room down the hall. Her brother, by her side, in a crib all his own.

But in that room, that room once meant to be hers, I can still sense the little girl who never came home. The baby who smelled of sweet mint, and was the first to lay her head across my chest. I can still feel the child who made me a momma.

With time Peyton's room will be redecorated and re-purposed. The writing studio I have talked about for the last few years will come into being and the bumble bee decor will come off the walls, but it doesn't matter. For me that room is still hers. It will always be hers, and I will always wish that she had come home to it.

READERS DIGEST CONTEST UPDATE: I NEED YOUR HELP
As a way to honor her third birthday, I have entered the Reader's Digest "Your Life" Contest with an entry about my experience mothering Peyton. The voting is open until November 15th, and you can vote once a day. It would mean a great deal to me to get Peyton's story in Reader's Digest. Can you please help me out by visiting this link and casting your vote for my entry. I have fallen way behind, currently in fifth place, a full 9000 votes behind first place! There were some issues with voting last week that sort of took me out of the running, but after contacting Reader's Digest about them, they seem to be fixed now. Also, you don't need a Facebook account to vote from what I have been told. Thank you so much! I would really love to honor Peyton this way. To raise awareness about the fact that little babies are born with, and die of, Leukemia. Peyton's story is a rare one, but it still deserves to be told. xoxo

Three Years Ago.

Three years ago, baby girl, you left and my world crumbled. I thought, on that day, that I had hit rock bottom. I was wrong. Rock bottom came later. Months later. Possibly years later. Rock bottom came in the crying and the grieving and the depression and the PTSD. It came in the flashbacks and the never ending questioning and the anger. Rock bottom came, and it went, and through all of it you were there, your little spirit guiding me in that way you always do, and we survived.

I can't think about that day without second guessing every-single-decision that we made on your behalf. If the right decisions had been made, wouldn't you still be here?

This year feels different than the last two. The first anniversary of your death was like dying all over again. Last year I remember laying in bed with your siblings floating in my big belly, and crying until I felt I couldn't breathe. I begged them at the time to understand. I explained to them that there are tears that will always come for you. For what you went through and never got to experience and your beautiful little unlived life. This year I find myself treading water, trying with all my might to not go there, not because you aren't missed. Not because I love you any less. But because I have these two little beings here who are dependant on me. They learn everything from me, the good and the bad, and I don't want them to know at 7 months about a level of darkness that it took me 28 years to be exposed to.

I am trying to think of the right words here. The ways to tell you that I think of you constantly. You never leave my mind. My thoughts. My heart. I have your picture on the window sill in the family room, and every day, every-single-day I look at it trying to remember how you smelled, to breathe in that sweet minty smell that was you, and to recall your features. When I went through your box the other day, I was struck by how absolutely tiny your hands were. How could someone with such a huge personality have been so tiny? But you were... weren't you? Too tiny to fight such a giant's battle, but you did, and with a level of grace far beyond your years, and one that I can only strive to ever live up to.

I wish I had the strength to be an advocate for you. I see so many parents lose their children to cancer and they trudge forward honoring them by raising funds and awareness. Truth be told, when I hear about childhood cancer, I curl up inside myself. I retreat. I run scared. I feel ill, and struggle not to be flashed back there. To the helplessness. To the horrors. I was so scared Peyton. Every moment of your life I was scared. And in over my head. When you came into this world, I didn't even know how to bathe a baby, and yet I was being asked to make decisions regarding treatment plans and chemotherapy. It was too much.

If I had it to do all over again, knowing what I know now, I think I would have pushed to birth you naturally. Even knowing that your little body wouldn't have survived it. I just can't help but to feel that in some way, sparing you of all of it would have been kinder. I wish you hadn't had to feel one needle stick. One test. One spinal tap. One surgery. I wish you had been spared, instead floating painlessly from this life to the next. Someday, when I leave this world and we are reunited, I hope to make this all up to you. I like to think we will be in some beautiful field somewhere, with the sun shining, the birds singing, and the clouds floating over, and I will hold you in my arms, watch the light dance across your face, and rock and rock and rock you, until we both feel whole again.

I love you.

Momma

Tucked Away In Some Corner

I feel sick.
Like vomit sick.

I thought I would feel differently.
I thought moving it would bring me a step closer to healing.

Today I tackled this --

It has sat under my dining room hutch for three years.
It has stared at me, reminding me every.single.day.

I didn't know what to do with it then.
I still don't.

Opening it was a sucker punch.
Cards that tell me how sorry people are that my baby is dead.
A box with casts of her hand and foot prints.
A locket of her hair.
Her pacifier.

There is a tiny bit of matter on one of the casts.
A speck of something --
Maybe dust.
Maybe blood.
It was the last thing on my daughter's hand when she died.
It is entombed forever in that cast.

This is so fucked.
All of it.
No one should have a box like this in their dining room.
No one should have cards saying, "I am sorry your baby died."
No one should have a few strands of hair as the only remaining DNA to prove their child existed.

I thought it would be a relief to move it.
I thought I would feel better --
I don't.

My grief is like this box of items.
It may appear neat, tucked away in some corner,
but peek under the cover and you'll see --
inside it is still just a mess.

24 Hours In Hell

I am grateful to be writing the post I am about to write.

More grateful than you can possibly know.

Here is why.

Bubba has a rash. 

Nothing too impressive. 

Here, check it out for yourself.

We went to the doctor's yesterday to have it looked at. It isn't the first time he has had a rash, he tends to be more prone to baby acne, cradle cap, contact rashes etc, so I wanted to talk about what else I might need to eliminate from my diet.

While there, I noticed a tiny red dot. 

Also, not very impressive.

It looked like a pin prick.

I pointed it out to the doctor.

He pressed on it and it did not blanch.

He pressed on the rash on Bubba's belly.

A few of those also did not blanch.

The doctor told me we had to have blood drawn,

a complete blood count and another test I didn't recognize the abbreviations for,

to rule out some things.

One of the things they needed to rule out... Leukemia.

Yes, you read that right. 

Leukemia.

Even typing that vile word makes me want to vomit. 

I saw stars.

Felt the room spin.

"But Peyton's type of cancer doesn't run in families."

The doctor told me he wasn't concerned.
I tried to believe him.

He said to head over to Quest because they are good at getting blood from little babies.

He said if they couldn't get it there, we would have to go to the children's hospital.

THAT children's hospital.

The one where Peyton lived.

The one where Peyton died.

The one I can't even think of driving past without feeling a part of me die.

The doctor gave us a lab slip and told us not to worry.

Yeah... right.

We headed to Quest.

"You have to take him." I told Hubs. "I can't do it." I started to cry.

It wasn't seeing him get a needle I couldn't handle.

I fly solo on the trips to have them vaccinated.

I couldn't be there to see him have THAT test done.

I was a mess.

I felt suddenly weak.

I thought I might drop him if I took him in.

The whole visit took maybe 15 minutes.

When they came out, Bubba had a single tear in his eye.

"He was laughing right up till the point they stuck him." Hubs told me.

I scooped Bubba up into my arms.

I begged him to be okay.

I cried.

And cried.

And cried.

There was no call last night with results.

I didn't know how to feel about that.

This morning I woke worried.

I called at 8.

At 8:30.

At 9:20.

"_____Pediatrics, this is Anne"

"I'm calling for my son's test results."

"His name"

"______ ______"

"Please hold a moment."

That 'moment' took nearly five minutes.

A myriad of thoughts ran through my mind.

Why was it taking so long?

Were they getting a doctor on the line?

I waited anxiously, repeating "He's fine. He's fine. He's fine. He's fine." with each second that ticked by.

My knees were shaking.

My hand holding the phone was shaking.

I heard a voice at the other end of the line.

"Hello, is this _____'s mom."

"Yes."
"This is Sherry, the nurse practitioner."

"Hi Sherry." My voice cracked. "Do you have ____'s results?"

"Yes I do. They are all normal."

Heavy sigh of relief. "Oh Thank God."

From there we discussed what else might have caused the red dot and the rash. 

None of which were serious.

There are no words for the relief I am feeling today.

Last night I saw images of another life. 

Of a different outcome.

I could see myself there, because I have been there.

It scared the hell out of me.

It made me want to curl into the fetal position on the floor and die.

Today I feel yet another new lease on life.

My son is healthy.

BOTH of my children are healthy, thank God.

And I am so, so grateful.

I was going to...

I was going to write a post here about the steps I have been taking in the right direction.

I was going to talk about how I got the courage to go into Peyton's room, and to wash the unused baby clothes in there in preparation for the snowflake's arrival.

I was going to say how big a deal this was for me.

How I must be healing.

How having this beautiful positive event in my very near future was bringing a sense of closure to my pain and anxiety.

I was going to say all of these things, and then tonight I went in to grab the last few items from her dresser, and I came close to the plastic bag - the one on the floor with her clothes in them.

The bag that has sat untouched,
unwashed,
unattended to,
since the day she died.

And I started to panic.

To panic about things that no one else panics about.

To panic that in being in the room with clothes that had chemo on them, maybe I had exposed myself and the snowflakes to something I shouldn't have.

To panic that the chemo on the tiny clothes in that secured bag may have somehow gotten onto other items in the room.

To panic over fears that wouldn't make sense to anyone else because people don't have babies born with cancer.

People aren't forced to start their child on chemo when they are just 6 days old.

They don't know what it looks like and feels like to hold a 28 day old little girl as she draws her final breath because the chemo has ravaged her body beyond repair.

People don't have to wonder two years later if using items that have been in the same room as a bag of clothes with chemo on them are going to equal some devastating exposure.

Exposure.

Exposure.

Do you see a theme here?

Exposure.

How am I supposed to relax when I am afraid of everything?

I see dangers in everything and feel so much pressure.

Pressure to protect them.

Pressure to keep them safe.

I am responsible.

I am their mother.

But how can I protect them when I couldn't protect her?

I tried my hardest, and it still wasn't good enough.

I didn't lose Peyton to some condition that the risks of can be ruled out at some point.

I lost my child to cancer.

EVERYTHING has been linked to cancer.

P.A.L. might as well stand for Paranoia and Anxiety after Loss because that is where I am tonight.

I was going to write something uplifting here about facing forward with a renewed faith in the future.

I was going to,
but then the triggers and the fears came for me instead.

What's The Point?

What's the point?

I mean seriously, what * is * the * point?

I eat all this natural and organic food.
I have stayed on bedrest (with the exception of the rare outing here or there) for the last 140 some odd days!
I won't allow myself to indulge in anything that has ever been even remotely linked negatively to pregnancy/children/fetuses/cancer/fertility/development/etc. etc. etc.

I do these things and I just can't help but wonder, what's the point in trying when my house has decided to go to total sh*t over the last month, and every day it seems I am finding myself being exposed to something else?

Something harmful.

A few weeks ago it was the gasoline fumes.

Then the mercury.

Now today we had a plumber, and an incompetent one at that, who decided that even though I was out of the house ALL day so as to avoid any fumes, dust, etc. as he was working, he should hold off on doing any of his gluing or soldering until I got home.

So really, what the hell is the point to even trying?

Clearly this universe is amused at the joke it is making of my sanity.
Amused - and cruel.

I was at my NST yesterday, listening as the nurses explained to the woman beside me that her child's fluid was low because of all the soda she was drinking.

I sat quietly as they called in a dietitian who detailed for her and her husband/partner/boyfriend why it was NOT okay to eat only junk food and that she needed to take a vitamin. Yet, when asked if this baby was her first, the woman (who I am sure has always exercised the same level of care in every pregnancy) told them that no, she already had two children at home.

Two living (and yes I know I am assuming here) healthy children despite the fact that she has done NOTHING to try to provide them with good prenatal care.

So what's the point to any of it?

I am driving myself crazy trying everything * possible * under * the  * sun to bring these babies into this world healthy, and life keeps spitting hazard after hazard into my face.

I just feel so exhausted. 

Plain and simple. 

So
Exhausted.

Defeated.

Disheartened. 

I hate grief.

I hate grief.

I hate the way it leaves me feeling vulnerable and exposed.

I can't go into what happened today, but I got the sense that someone used the sadness of my story for their own benefit and it just makes my stomach turn.

Maybe they did.

Maybe they didn't.

Either way that's the feeling I was left with.

The feeling of being used.

I hate grief.

I hate that I have never mastered the art of sugar coating my feelings about what happened to Peyton.

My daughter was born very, very sick.

My daughter suffered a tremendous amount in her short life.

My daughter died, struggling for breath, in my arms.

How the hell do you sugar coat that?

How do you sugar coat that for the rest of your life you are going to miss this little being who could have and should have been somebody?

Who could have and should have been given the same shot at life as the rest of us?

Yes my life is full of many joys.

Yes I am grateful for the blessings that each day brings.

Yes I am looking to the future with a renewed sense of hope.

No that does not erase what happened to Peyton, or the fact that her absence is permanent.

I hate grief.

I hate that I can't hide my grief, even when I want to.

I hate that if a stranger learns of what happened, and asks me about my daughter, I am going to cry.

Why do I do that?

A stranger is not worthy of my tears.

I have earned my tears.

In every hope I had for her, and fear I felt for her while she was here.

In every terrible decision that had to be made.

In every moment of this life that I should be sharing with my daughter but can't because she now lives in the cold earth.

I have earned my right to my tears.

A stranger has not.

I hate grief.

I hate the judgement that sometimes comes in that moment.

I hate when they say, "I am sorry," 

but their eyes say "You still cry over this?", 

or their tone says, "What is wrong with you?"

I hate grief. 

I hate that the only thing I have had to cling to through this journey is my honesty, and today I felt like someone twisted that honesty into something else, something perverse.

I hate that my tongue got tied in that moment, and what I wanted to do was scream and tell them how inappropriate they were, or that it must be nice to live in a world where the worst day of my life is just another bonus to something they were trying to accomplish, but I couldn't. 

I froze.

I hate grief.

All of it.

I hate that people can't get that grief IS what it is.

The definition is "a reaction to a major loss." 

That's what grief is.

I hate that people always want to put some damn title on it.

They want to summarize it so they can feel more comfortable about it and separate themselves from it.

Depression.

Weakness.

The inability to move on.

"Oh I don't have that," they can tell themselves,

 or,

"I've never been in your shoes, but if I were, I am sure I would handle it better."

I hate grief.

I hate the stigma that surrounds grieving a baby.

I want to know what exactly society considers a "normal" and acceptable response to losing your child?

Pretending she never existed?

Would that be a more "normal" response?

Or just more convenient?

Either way, if you see the devaluing of the life of a child as "normal," and grieving their absence as "abnormal," then you are the one with the problem, not me.

I hate grief.

I hate it more than anyone watching me go through it ever could.

Grief is messy. 

It is tiring. 

It is forever.

Not the darkest days of course. 

Nothing compares to those early darkest days.

But if you somehow think that a year or two years or ten years or fifty years later, my daughter's life should no longer matter to me anymore, than I don't want to associate with you.

I do not see her as any less deserving of my love because her life was brief.

If you do, than I consider that your shortness of character, not mine.

I hate grief.

I hate feeling like I have done something wrong for experiencing it.

My child died.

I didn't seek that out.

It happened to me.

Nothing about this is a choice.

If I could, I would go back to September 3, 2008.

I was 42 weeks pregnant.

I was excited for her arrival.

I had no idea what was to come.

My life was so good.

The implication that any part of grief is a choice frustrates me.

I hate grief.

Most of all, for making me defend it.

Wanting to Want to Remember

I had a nightmare.
At least I think it was a nightmare.
Sometimes PTSD makes it difficult to distinguish between what is a dream
and what is a flashback,
especially in the early moments after waking.

I dreamt of our camcorder.
Sounds silly, right?
It was a wedding shower gift from my bridesmaids.

I replayed in my mind all the discs we had created with it.
So many discs.
So many memories worth saving,
all contained to the first two years of our marriage.

Our trip down to Florida to see hub's family.

Long car rides with the camera rolling
as we cracked jokes and bantered nonsensically to break the monotony.

Images of my husband waking in the early hours of morning.
He hates to be recorded this way - I love it.
How intimate it is. How only I get to see him like this.

The two of us talking over my pregnant belly.

My mind played over the contents of each disc,
and then it stood in fear
before the one that we can't seem to watch again.

Less than an hour long.
It is her whole life.

There are scenes from my first induction.
That trip to the hospital was full of hope.
It failed and we went home empty handed and I felt it then.
In retrospect, though I had no way to know, I felt it.
It was a foreshadow of what was to come -
me staring longingly at the car seat in the back.

The empty car seat.

I felt it and it scared the life out of me.

Then came the scenes from a week later - her second induction.
Peyton was stubborn.
She wouldn't come out.
We still didn't know.

I had felt it on that car ride the week earlier,
but we didn't know.

At this point in the video,
we still thought we were having a take home child.

The images move on to the Operating Room.
Hubs telling me we had a girl.
Me looking at him in disbelief.
The anesthesiologist asking what her name was.
"Peyton," I uttered, even though it was not the name we had discussed and decided on.

These first five minutes of the video are joy filled.
Or at least as close to joy filled as any in her life.

I am in a haze,
a deep anesthesia induced haze,
but I feel joy.

I remember the fear and disorientation from the drugs.
The way my body shook violently.
The nausea.

I remember feeling that I was missing her birth in my fog.
But there was joy.

She was here.
She was fine.
The doctor told me she was perfect.

That scene ends.
Then, of course, the joy is lost.

The rest of the video details her degradation
from a perfect, pink little thing,
to one who is bruised and battered.
Our little Peyton, by the end of the hour,
is barely recognizable.

We watched the video right after she died.
Literally right after.
In those early days.
It might have been the night of her funeral.
I can't remember.

What I remember is that my parents were here,
and we sat together
and we watched it.

It was so hard
that we couldn't face it again.
So we put it away.

"Maybe each year on her birthday?" we said.
"Or her angelversary."
Neither has ever felt possible for us.

The videos ended.
The nightmare continued.

That's what my dream/flashback was focused on this morning.
On the after.

There are no videos after that one.

This, among all the other things listed, is what scared me the most.

There was life.
And then Peyton and her death.
And then grief.

Can one simultaneously live and grieve?

If you can, we haven't figured out how.

Not truly.

Maybe in a day to day way.
But never in a way that felt worthy of remembering.

Since her death there has been cause for documentation,
but no desire.

A cruise my parents took us on in the early months.
The birth of my nephew.
Weddings.
A camping trip.
Christenings.

It's as if we have been going through the motions but not really living them.
Seeing things but not experiencing them.
Breathing but not being.

I want to get back there.
I can feel that change happening inside of me.

I want to get back to that place
of wanting to remember where I am,
rather than just wanting to survive it.