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.

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.

To Peyton, On Your Fourth Birthday

Peyton,

Today should be your fourth birthday. I imagine you here, brown curls, blue eyes. This year feels so different, or maybe the wave just hasn't come for me yet. I am sitting here, next to the light that you have been turning on for me all week, thinking about how amazing and strong in spirit you are to continuously find ways to remind us of how connected we are. How can I feel anything but joy, love, and appreciation for that? You make me so proud.

It feels like Daddy and I have every ball up in the air right now, juggling a million decisions at once, but I know in my heart that no matter where they land, no matter where we land, you will be right there guiding us.

Some days I miss you so much I can taste the mint of your hospital room in my mouth. I can feel your head on that heavy place in my chest. I nearly believe that if I reach out just far enough, you will be there reaching back. I am learning to live with the fact that you won't. I am learning to accept a life of never again getting to cuddle and hug you. It's hard. It's always hard. It always will be hard.

Some mornings I hear your brother and sister laughing in their room, and like to imagine you in there whispering little jokes in their ears, or singing them songs. Maybe you are.

Squeaks reached out for your picture the other day. I explained to her that you are her "big, little sister." She just laughed. I promise you that I will raise your siblings knowing how amazing you are.

Peyton, there are so many things I wish could have been different. So many things I wish I had done differently. So many scenarios that I play, and replay in my mind, just searching for the one that would have saved you. I wish I could have, baby.

Daddy, Bubba, Squeaks and I are going to be sending lanterns up to you tonight. Will you look for them, baby girl? Will you feel the heat of my hugs in their flame? I hope so.

I love you my sweet forever-baby girl.

I will never stop wondering why you had to go.
I will never stop feeling grateful to have had you to love.

Happy Birthday.

Love,
Momma

Peyton Elizabeth 

9/4/08-10/2/08

First. Loved. Always.

****

September 4th is here already. 

To honor what would have been Peyton's 4th birthday, we are doing a Gift Card Drive to benefit families with critically ill infants at Connecticut Children's Medical Center. From Sept. 4th (the day she was born) through Oct. 2nd (the day she passed) we will be collecting gift cards to the following establishments:

*Dunkin Donuts 

*Friendly's

*Shop Rite, Stop and Shop, Walmart, Target, Price Chopper, etc.

*Gift Cards to Area Gas Stations (Sunoco, Shell, Valero, Getty, Gulf, Mobil, BP) 

These gift card donations are tax deductible. Please provide us with your address and keep your receipt.

Gift cards of any amount would be greatly appreciated and can be mailed to:

Doing Good In Her Name

P.O. Box 1281

Burlington, CT 06013.

Fading Memories

I asked my husband the other day if he felt like he was losing Peyton. He nodded. I admitted that I felt it, too.

Peyton hasn't been replaced. She hasn't been overlooked, or intentionally forgotten, or fallen in any way down the rungs of love in our heart, and yet my husband and I, two parents who think of her multiple times a day, have felt our memories of her slipping further out of reach.

We started talking about the memories that we hadn't lost. The sweet, minty smell of her. How she let out a little kitten-like sigh when she would lift her head to readjust against my chest. I mentioned her hands, how they were exactly like my mother's but on a tiny scale, and how her entire life there was goo on her knuckles and a bruise on the back of her hand from that very first IV.

We talked about the emotions that follow us along certain drives--the drives down the roads away from our house on the way to and from the hospital. I remember in crisp detail what life was like the day before the fungal infection was discovered. How full of hope we felt. I remember conversations about the Fall, and stopping at Dunkin Donuts on our way to see her that first time. If I close my eyes, I can probably replay every moment of Peyton's short life in my mind.

My husband shared his memories, too. He said he didn't think that his were as crisp as mine--something he attributes to the fact that he didn't see Peyton's death coming. I saw it coming. I didn't want to, and wouldn't have admitted it even to myself at the time, but I did. In my heart of hearts, I knew she wouldn't survive and I am disgusted by that.

I started to say that I thought the reason we felt like we were losing the details of our daughter, Peyton, was a self-preservation thing--because to stay there, in that dark, early, abyss of grief would be so crushing we couldn't possibly survive. I do think to some degree that that's true, but as I was saying it to him, it hit me. My memories of Peyton aren't numbing or disappearing, so how can I say that I am losing her when every detail, every-single-detail of her tiny life, is burned into my brain?

No, it's not that I am losing her. It's that now that I have had other children, healthy children, growing and changing and doing-by-the-day children - the magnitude of just how brief, just how robbed, just how un-lived a life my first child had-- it's overwhelming. I only have so many memories of Peyton, because there only are so many memories of Peyton. Twenty-eight days of life is not enough.

Pressing Pause While Flashing Back

I participate in a weekly critique group. It is a wonderful, blissful two hour block of time devoted to writing, and I love it. We meet in the evening, and usually run late, so I tend to go to bed thinking about the feedback I received, and then stay in the same train of thought as I wake overnight to feed the babies.

The other night, when the snowflakes woke me at around 4AM, I started thinking about words. Which words are the right words to convey what I am trying to say. Which words have the strongest impact on imagery etc. etc. For some reason I got caught up on the word "doorknob" of all things, and before I knew it, I was holding tight in my mind a clear picture of the doorknob to a family suite that I used to pump in at the NICU. 

PTSD is funny that way. You really never know what is going to trigger you.

When I look back on the fact that we only actually spent 8 days in the NICU before Peyton was transferred to the oncology floor, it is so hard to believe, because those 8 days felt like a lifetime. Those days, despite the fact that Peyton had been diagnosed with such an awful disease, represented the best of times that we would share with her.

8 hopeful days.

8 days of believing naively that she would make it.

8 days spent surrounded by supportive staff who encouraged things like skin-to-skin time to improve her bloodcounts, and breastfeeding.

I am not knocking the care we got on the oncology floor, but there was a different level of attention that we received in the NICU as parents. A level that now, in retrospect, I realize must come from working in a place where you see so many parents come in with their children, and leave without them.

As my mind wandered from the doorknob, into the suite, I could see myself, and feel it like I was actually there. I couldn’t tell you if it was day 4 or day 5, but I had gone in to pump while Peyton napped.

 I was pumping, for my child.

A small TV against the wall was showing an interview with Mariska Hargitay. She was talking about her career, and life growing up as Jayne Mansfield’s daughter.

I won’t even attempt to try and understand why I remember that interview. I have come to realize that little about PTSD makes sense.

When I finished pumping, I walked over to a sink in the room and cleaned the bottle parts, careful to do so in the most sanitary way so as to protect my immuno-compromised child. My husband was at the lunch cart, buying us a snack.

I remembered it.

Smelled it.

Felt it.

I knew I was flashing back, and yet I chose to stay in that moment. To hold onto it. Despite the worry and the exhaustion, I was hopeful in that moment. I was making milk for my child who (I believed at that time) would need it. I was gearing myself up for the long haul. This was going to be my new life – living in a hospital rather than home with my first child – but I had accepted it.

There is another memory that comes right after that one. It is not a pleasant memory. It is the moment where my hopes were dashed some five minutes later and down the hall, but I pushed that memory away, and chose instead to hold onto the moment that had come calling for me.

Usually flashbacks make me want to run. There are more moments than I can count that are so painful that I can’t write them. The only post I have ever taken down from this blog was when I shared just such a moment. I took it down because it hurt more to have it out there than to not.

But not this moment. In this moment I was too naïve to recognize that the battle had already been lost. That she was born destined to die. That there had never been any hope. In this moment, this memory, I was just a mother, doing my best to make milk for my child, and looking forward to her waking from a nap so I could hold her again. In the entire span of Peyton's short life, this was as good as our time together ever got to be.

Remembering doesn't change anything. We still lost Peyton. She won't come back. But the flame of hope that burned that day, and the feelings of love I felt for my first child, are not to be forgotten. I choose to cup that moment gently in my hands and fan it from time to time, so as to feel its warmth against my skin. To watch the beauty in that ember glow.

In flashing back to how it felt to be in that room, I choose to pause.

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

"Nightmare"

I had a nightmare.
Anyone who has read here for a while will understand.

I dreamt I was walking along a concrete path, and everywhere I turned, I was met with one of those little yellow lawn pesticide signs.

The grass all around me was coated in a white, powdery film. I walked carefully and held my hands close to my body, not wanting to touch anything.

The chemicals were everywhere. I was a rat in a maze, turning and turning, looking for a safe way out.

Suddenly I came upon a large festival full of families walking through the grass like it was no big deal.

Young children rolled around and played in the lawn and I felt nauseated watching as the white powder took refuge on their bare skin.

"You have to get that off of them!" I screamed.

No response.

"Don't you know pesticides are linked to leukemia!"

Not even a look in my direction.

"Why aren't you listening? Your children could die!"

Nothing.

The families just went on smiling and celebrating.
Rolling around in the grass as white powder coated their bodies.
Picnicking as it stuck to the food that they brought to their mouths.

"Please listen."  I begged.

But no one did.

They couldn't hear me.
They lived in a different world.

Naive.
Unaware.
Together.

I realized in that moment that I knew too much to ever be like them.
I realized that no matter which direction I traveled, I would always be alone.

**




I am really excited/humbled/honored/stoked/etc etc to learn that my little ole blog here has been nominated for Babble's Top 50 Mom Blogs. It would mean A LOT to me if you all would take a moment to vote for my blog by clicking here. If you sort by popularity I should be on about page 2. If you sort alphabetically I fall around page 13. You can vote for as many bloggers as you'd like. I did. Some of my favorites are also on the list :)

On Living - Right Where I Am

"As long as I can I will look at this world for both of us. As long as I can I will laugh with the birds, I will sing with the flowers, I will pray to the stars, for both of us." ~Sascha


It's been just over a thousand days since Peyton left this world. 
Just over a thousand days since I held her in my arms that last time as the sun broke through the clouds, and cast white light across her small body. 
It's been just over a thousand days... 
God I miss her.


I spent the better part of the first year without Peyton being furious. 
At God mostly. 
It hit me tonight, as I looked at my two beautiful blessings, that it may be time to start working on toning down that fury
It may be time to start feeling Thankful rather than Spiteful when I think of Him.
It may be time, but that is a post for another day.


In that first year after Peyton's death I saw very little hope in the future and no joy in the day to day. Even to think about feeling joy felt like some sort of betrayal, and yet when people tried to remind me that living was not a betrayal, I hated them for it. 


People would see me spending all day every day at her grave that first year, and they would say, "Peyton wouldn't want to see you like this" and I would think, "what the hell do you know anyway? Was your child born unexpectedly with cancer? Did your child die in your arms? Do you live with the aching arms? And the nightmares? And the daytime ones?"


I was hurting. 
Everything was darkness. 
Telling me that I was disappointing Peyton in my grieving just added to my fury. 
To my fury, and to my guilt.


In that first year people told me I would survive.
They were right.
I did.
Every second of every minute was agony, but somehow, some way, I came through it, even if only by the skin of my teeth.


The second year without Peyton I lived on Pause. 
Every day was Groundhog's day. 
The sun rose.
My child was dead. 
The sun set. 
My child was dead. 
Families around us grew.
My child was dead.
Children conceived after Peyton died had now outlived her, and yet, my child was still dead.


It is still hard for me to believe, sometimes, that I no longer live in that long gray fog that consumed the second year. At that time the world around me seemed to be moving at lightning speed, while our world, our tiny little corner of the universe, sat immobile - seemingly stuck on its axis unable to turn towards the sun.


And then, just like that, one day it did.


One day there was forward momentum, a feeling that had become so foreign a concept to me that I didn't know what to do with it.


In that moment we were afforded a new lease on life, and the blessing that this is has not been lost on me. 


Peyton's third birthday is just a few mere months away, and I feel something shifting in me once again. For the first time, in a very long time, maybe ever, I find myself thinking of Peyton and smiling. 
Not all the time of course, many memories of her still stir feelings of being robbed, scared, and heartbroken, but every once in a while an image of that little girl - so tiny, so brave - pops into my mind and I can see her lifting her sweet, perfectly round little head up off of my chest when we did skin to skin, and the corners of my lips turn upward in gratitude.


Yes, you read that right. Gratitude.


Peyton did something no one else in this world can ever undo. 
She made me a mother, and through the aching, I can't help but to feel grateful for that. 


She came into this broken world, loved me with a pure heart, and left so many gifts for me that I am still discovering them day by day.


Some have been easy to see - the friendships I have made within the BLM community. The connection I have been able to feel with my writing. The deep sense of empathy I feel for those who are hurting - and others have taken more time to fully grasp - like realizing how important it is to truly appreciate each and every day.


Even the tough days, because a tough day is just another chance to overcome something difficult, and discover something beautiful in its wake. 


That little girl has enriched my world. 
She has made colors crisper.
Experiences richer.
Meanings deeper.


Because of Peyton I appreciate what a gift it is to wake up each morning.
Because of Peyton I can feel the wind on my cheek and know that somewhere, somehow, in some way that I am too human to understand, we are sharing that moment.
Because of Peyton I truly, TRULY, know how lucky I am to be a mother.
I know what a gift it is to be exhausted from a sleepless night with the babies.
I know not to take for granted any moments with my children, even the challenging ones like those that I have faced in breastfeeding the twins.


That's not to say I don't ever moan or groan or feel sorry for myself about this or that, because I do, I am human, but usually, a beat or two behind whatever gripe I may be airing, I stop, think of that little girl and all that she has taught me, and that quickly puts things back into perspective.


Maybe everyone goes through this? 
Maybe this, this feeling that I owe it to Peyton to live the life she wasn't afforded, is just another stage of grieving.
I don't know.


What I do know is that she can't laugh, so I feel that I owe it to her to fill my life with laughter
She can't have a family of her own, so I owe it to her to love mine with all of my heart.
She can't chase her dreams, so I owe it to her to never stop believing in mine.


As the poet Sascha says, I owe it to Peyton to do all these things "for the both of us."


I miss my daughter.
Nothing will ever, nothing can ever, change that.


I still have days where the tears come calling, but something inside of me is shifting.


I am coming to see that honoring Peyton is not equivalent to spending all of my life longing only for what I can never have.


I am coming to see that it honors her memory more to embrace and rejoice in all that I do.

****

This post is part of the StillLife With Circle's Right Where I Am Project. I'm about a month late to the party, but hey, better late than never.

****

I Love To Write

Last week I mentioned jotting down characters for my next novel in a journal, and I got an email asking me about it, so I decided to answer the question with this post about writing.

I used to be in sales. Medical sales to be exact. I was quite good at making contacts and closing deals and my father who had also spent his life in sales would say, "Krissy, you can sell Ice to the Ice Man."

I was quite content in my professional life before Peyton. I made good money and my career was headed in the direction I wanted it to go, so even though I had always loved to write, I filed my aspirations for it under the heading of "someday", saying things like, "someday, when I have free time on my hands, I'm going write a novel." Little did I know how quickly that "someday" would be upon me.

When Peyton died I lost my drive for sales. I no longer felt happy, or personable, two qualities that I needed to be successful in that field, and I wasn't brave enough to face my clients, all of whom had last seen me very, very pregnant. I was grieving. And lonely. And depressed. I had lost my hopes and dreams, my sense of self, and I was drowning. Immediately after her death I turned to writing for relief, so in some ways I think of my life of writing as Peyton's gift to me. 

Peyton died in October and by November I had recorded some hundred pages of her life, detailed accounts of all that had happened to her and to me, knowing that eventually I would want to share them. This was long before I found the blogworld. I spent the next six months writing a memoir about what it is to be a bereaved mother. I wrote about all of it. The beautiful bits and the painful bits and the taboo bits dealing with PTSD and depression and my feelings of failure as a mother.

In May 2009 I met with a literary agent to discuss my memoir. He was youngish, maybe 8 or 10 years older than me, and he told me that he felt the book was "very well written, but sad."

"It's a sad story," I said, "my daughter died. My world came crashing down. I went to a very dark place."

"Well I think it is too sad."

"Is there such a thing as being too sad over your child's death?"

The agent's words hit me like a ton of bricks, not because he had chosen not to represent me, but because the reason for my writing the memoir, much like my reason for writing this blog, was to offer an honest account of what grief looks like. I explained that not every grieving mother wants to read about rainbows and happy endings, nor do we all buy into the notion that we ought to feel grateful that our baby is "in a better place," or not feel angry with God. Sometimes, when you are in that dark early place, you just want to read that your newfound fear of the dark, or the aching in your arms that wont go away, or your inability to recognize yourself, are somewhat normal. Not normal to the outside world, but normal under such extremely abnormal circumstances.

I don't know why I never pursued it further with another agent. Maybe at the time I was too raw. Some time has passed now, and though I still don't believe in wrapping that memoir up with a neat little bow, I know that now I could sit through a meeting like the one I had had with that first agent without feeling so defensive because I have come to realize that there are just some people outside of the loss world who will never, ever, understand. But there is bound to be an agent who will, and when I find him/her, Peyton's story will be told. It was a week or so after meeting with that agent that I started blogging here, and the rest, as they say, is history.

I love to write. 

At the end of last year I completed my first novel. It's funny, and brash, and has nothing at all to do with loss which may come as a surprise to many of you. It is three hundred or so pages that have been over a year and a half in the making. I started writing it at the writer's retreat that I talk about in my Sea Glass post and because of my own stupidity - and an accident involving my car running over my flash drive that we will go into another day - I have actually written this novel in its entirety twice.

Sometimes I think of the characters in this novel as friends. Though they are caught up in their own misadventures, and have no idea that I, their creator, even exists, these characters have, in their own funny ways, seen me through my roles as newly bereaved mother, TTC infertile, bed resting momma to be, and now breastfeeding mother to healthy twins. I am doing my final edit on it now, before submitting it to agents, and though it is taking me longer than I expected because most of my time spent working on it is one handed, or no handed, as I breastfeed, I love working on it nonetheless and cannot wait to see it finished and published.

I love to write.

Memoir, blogs, short story, poetry, prose, novel.

I love to write.

It may be a post on my blog, a poem written by Peyton's grave, a chapter in my novel, a short story, or a note on a napkin for a future story idea, but every day, regardless of what else is going on in my life, I write in some capacity.

Writing is my friend. 

My confidant. 

A view inside my soul. 

Through my own words, the act of writing unleashes my imagination. 

It frees me of my demons. 

It helps me to both remember, and to escape.

I love to write.

The Commonalities of Grief

I went up to Peyton's Hill the morning of Mother's Day. I needed to be near her. I needed to tell her how much I love her, and miss her. How grateful I am to her for giving me the gift of motherhood. I feel the need to do this every day, but Mother's Day makes missing her especially hard.

I walked up to her grave and commented on the weather. I apologized for the sad state of her site, and remarked about the newest pinwheel we had placed up there, which had already gone missing. It gets very windy on Peyton's Hill, so I imagine a good gust came along and was just too much for it.

I stood for a while, breathing the place in. I watched birds in the trees, closed my eyes, and tapped my chest in the spot where her back used to be when she fell asleep against my chest. In the silence of her Hill, I began singing "Smile Awhile," one of the songs from my repertoire when I had rocked her in the hospital.

It's a World War I song about loss.
Most of the songs I sang Peyton were about loss.
Maybe I just knew.

Smile awhile and kiss me sad adieu
when the clouds roll by I'll come to you
then the skies will seem more blue
down in lover's lane my deary
wedding bells will ring so merrily
every tear will hold a memory
so wait and pray each night for me
till we meet again

Halfway through my song I was approached by an older woman. She looked disheveled, as if the day had snuck up on her somehow, and was covered in dirt from flower pots that she held in her hands. I recognized something in her. Something I had seen in myself so many times before. She looked neither present, nor lost. She just was.

We got to talking and she pointed out her son's grave. I knew her son. His name was Mike. He was paralyzed, wheelchair bound after a freak construction accident, and used to walk his dog around the path at the cemetery each afternoon. Mike, G, and I were a sort of lonely hearts club. Three outsiders with broken hearts who had nowhere else to turn for relief but a cemetery. Mike died suddenly last year. He got the flu and aspirated when he vomited in his sleep. Mike wasn't even forty years old.

His mother told me she had come up to plant some flowers around a bench she had placed on the Hill.

"It was your idea you know," she said, "I hope you don't mind."

I didn't.

The idea to get a bench up on the Hill was one that came to hubs and I early on, but the months had passed, and then the years, and the truth is I didn't know when we were going to get around to placing one up there. We had mentioned the idea to G who had mentioned it to Mike's mom, and when I came up last fall to find her bench placed, I was happy to see it.

I told Mike's mom how sorry I was for her loss. We got to talking, and talking led to crying. She was really suffering through facing Mother's Day without her son.

"I can't make it through a ride in the car," she told me, "without breaking down. I cry all the time. I feel his loss all the time."

I nodded, knowing exactly what she meant. So many car rides these past two and a half years had been spent crying tears of sorrow and loss for my little girl. So many songs on the radio had triggered emotions in me, or felt as if they had been somehow sent directly from her.

"And I know I sound crazy," she continued, "but sometimes I get little signs from him."

"Funny things happening with lights?" I asked.

She looked at me, mouth agape. "How did you know?"

"It always seems to have something to do with lights," I smiled. "If you feel something happening, and you think it is Mike, cherish that. Who is to say it isn't him?"

We exchanged stories about funny little occurances that we felt were gifts from our children. Flickering flashlights at my house. A solar light that suddenly became aglow on her birthday at hers.

"Was Mike your only child?" I asked.

"My only son."

"I'm so sorry."

She looked at his grave and let out a deep sigh. "I am just so afraid people will forget about him."

"I won't forget him." I offered, knowing this feeling too well, this fear that my child will be forgotten. That there will come a day where this earth rotates as if she had never even existed.

Talking with Mike's mom showed me how many commonalities there are in the grief of one's child. It doesn't matter how old they were when they passed, though losing a baby is certainly different than losing a teenager and that is certainly different than losing an adult child, there are certain common threads to the grief of a mother.

Mothers cannot let go.
Mothers always hurt.
Mothers feel the absence of the child they have lost all the time, and strive to feel their presence in whatever ways we can.
Mothers all share the great fear that our children, their lives, and their impact on this great wide world, will be forgotten.

To lose your child is to forever lose a piece of your own soul.
As mothers we need to protect our children.
As bereaved mothers we need to protect their memories.

What should be. What WILL be.

What should be:

A day spent admiring my three beautiful children.

A reflection on the joys of the last three years of motherhood.

A giggling little girl playing with her baby brother and sister, showing off her ever expanding vocabulary and doing "big girl things".

What WILL be:

A day spent admiring my three beautiful children.

Two in my arms, one only in my memory.

A reflection of the long road that motherhood has taken me on.

A road filled with tears of joy and sorrow. 

With obstacles overcome, and those that never can be.

An ache for my giggling little girl who never lived to learn to giggle.

The pain of her absence ever present,

regardless of the other joys in my life.

This is the best I can hope for.

For this Mother's Day, 

or any others to follow.

For the first time since becoming a mother, I am not dreading Mother's Day. I am looking forward to celebrating these three amazing little beings, and all the ways that they have changed me, but as with all milestone dates, the countdown to Mother's Day brings with it a mix of emotions.

The joy over all I have,

and the pain over all I can't.

As Sunday approaches, Peyton feels that much further from me.

Not from my soul of course. 

But physically. Just so very far. 

I want to hold her again. I want to feel her nuzzle against my chest. I want to breathe in the sweet minty smell of the hair on her head.

Each day I tell her brother and sister about the amazing things that she did. How strong she was. The way she would stare into our eyes for hours and rarely complained despite the trials she was put through. I tell them how at just a few minutes old, Peyton reached out and grabbed her pacifier, sticking it into her own mouth -  a feat that at nine weeks old, neither of her siblings have yet managed to figure out.

I tell them these things because it is all I can do.
It is the only way they will ever know her.
Through me.
Through my telling.

What should be will always haunt me.
She was here.
She was perfect.
She was mine and she is gone.

Still gone.

Despite two and a half years of prayers to the contrary.

My daughter Peyton is gone and the permanence of that is something I will struggle through all the days of my life.

What will be is beautiful,
but what should have been can never be forgotten.

***
Whether TTC, giving up on conceiving at all, waiting for a rainbow, carrying your rainbow, holding your rainbow in your arms, facing your first Mother's Day without the child you have lost, facing the tenth Mother's Day without the child you have lost, facing countless Mother's Days without ever having a child - regardless of where you are in your given journey, I know that Mother's Day can be the cruelest day on the calendar.

Please know I am keeping you all in my heart this Sunday.

So close and yet so far.

This isn't the post that I sat down to write. I was going to tell you about my frustrations over Peyton's grave. I was going to tell you how guilty I feel that her spot has gone neglected these last few months. How I lie up at night sometimes, thinking about it.

I tried to go up there to fix it up yesterday, but I had two fussy babies on my hands and by the time I got there it was too buggy to get out of the car.

I was going to talk about how it makes me feel to think of Peyton looking down from Heaven and watching me leave the cemetery without even exiting the car because circumstances didn't allow for it. How I was so close to her grave, yet a world away from her (hence the title of this post) that it hurt my heart and I worry she might feel as though she has somehow been replaced.

I wish that I could get the message to her that replacing her - our first child - our brave little warrior - is impossible.

That is what I was going to write about, but as I started writing this is what came out instead.

Yesterday I ran into G, an elderly man that I have come to know during my visits to Peyton's hill. I drove into the cemetery and when our eyes connected, I could see a familiar sadness in his. We exchanged hellos and G proceeded to tell me how down in the dumps he has been feeling lately which came as no surprise since every conversation we have ever had has involved G telling me that he is feeling down in the dumps. I've almost come to expect it. 

G doesn't seem to want or to permit even the smallest bits of joy to creep into his life and to see him on one of his visits feels more like bearing witness to an act of penance as he leans for three hours a day, day in and day out regardless of the elements, against the cold stillness of his wife's stone. There is nothing cathartic or healing for him in his routine. 

The sad truth is that G has given up. He had already given up by the time I first met him, and it is something that has always struck me about him. Even during my darkest days on the hill I found it difficult to understand the level to which G had let go of allowing himself to find any measure of joy in what life he has left. Don't get me wrong. There were days, months, that first year really where I found little joy or humor in anything, but if a smile crept through, or a laugh, I welcomed the change. G does not and this has always struck me as especially ironic as I would peer into the young face in Peyton's picture at her grave, and note that while my daughter was allotted so few days on this earth, G has wasted so many.

He is in good health. He is living independently despite his age. He has family and friends (us included) who frequently invite him to dinner, or over for holidays, but he declines all invitations because to accept one might mean accepting happiness, and G sees this somehow as a betrayal to his lost love. 

I see G's story as a cautionary tale for all of us. It demonstrates what can happen when we, as the grieving, fall into a pattern of belief that to love those we have lost is dependent upon punishing ourselves.

Finding it difficult to find joy or to even want to find joy is a normal reaction to loss. There were days in my grief, many days, when I would let the phone go unanswered. Days when I thought the sky was black like pavement, because I didn't look up to see the sun. Days where I believed my smile might be lost forever... but not every day. Not every minute of every day.

I think it is important to remember that regardless of what stage you are at in your grief, if there are times when the sun pokes through the clouds and you feel joy, even if that joy lasts only the briefest of moments before another reminder of all that you have lost,  it is okay to embrace it. Punishing ourselves to the point of never experiencing joy benefits no one.

Not our families.
Not our friends.
Not the loved ones we have lost. 

G's wife died more than two years before Peyton - which means that this pattern, this slow march towards death, this refusal to enjoy one single moment of life, has gone on for nearly five years.

Five years where new connections could have been made, lessons could have been learned, experiences could have been had.
Five years where even if the overwhelming majority of his time had been spent grieving, G may have felt his suffering ease for a few brief moments here or there.
Five years of moments that would never and could never have replaced his wife or cheapened his love and commitment to her.
Five years of a death sentence that G could have spent living.

When I look at G leaning against his wife's stone, I see so much tragedy in the fact that with her death, so died his willingness to ever again allow himself to live.

Loving those we have lost should not carry with it this kind of a death sentence.
Love is not a punishment.

****

This Sunday is International Babylost Mother's Day. I am wishing for you all a day of beauty, peace, and if possible - joy.

****
Exhale Magazine is hosting its first ever visual arts contest with the theme SEEING WITHIN. There are great prizes available. The deadline to enter is this Sunday. Check out the details here.