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.

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.

On Being Human - In Under 200 Words

If I come across one more story or cruel comment attacking The Duggars and Santorums for how they handled the impossible situation of losing their babies, I am going to scream. 

There is something very wrong with a society that places time and age qualifications on when a child is "worthy" of the love and grief of its parents. I am beyond fortunate that I had a month with Peyton, but you can bet your life that if I had lost her after six months in my body, or two hours on this earth, I would have loved and missed her no less.

I don't give a flying fig where anyone sits on the religious/political spectrum. To me this is simply a matter of showing a basic level of decency to a fellow human being. When you alter the amount of compassion that you show a person who has suffered the worst kind of loss, that of their child, simply to discredit their political or religious views, you have sort of missed the point on what it is to be human.

To those fresh in grief.

I feel like there has been so.much.loss lately.
It is almost too much to bear.

You hear stories about soldiers in war who have seen so many terrible things that they almost grow numb to the horrors they bear witness to.

That doesn't happen here.
In this corner of the loss world.
You never, ever grow numb.

When you come across the story of a little one who has died, when you see the pictures of their parents holding them and saying goodbye, or read (and can relate to) a final post from a mother who realizes that the battle has been lost.

There is no growing numb to that.

Empathy-
It is both a gift and a burden.

I cry for children I have never met.
For loved little lives unlived.
For the pain that their parents now face, and the tough journey that I know firsthand is ahead of them.

There are days when you almost have to step away because there is SO MUCH SADNESS AND GRIEF that you forget the other side, the happy, blessed, sun-shining side of the world even exists.

You forget that most children are born healthy.
That they get to live full lives.
Because it seems the deck is so stacked against them.

You have to make a conscious effort to remember to celebrate.
To remind yourself about the beauty.
And the good.
Because the dark cloud of grief and loss is so vast that it can weigh you down.

Why are so many children born destined to die?
Why are so many loved children lost?
Why are so many loving parents forced to walk the road of grief?

Why? Why? Why?

The injustice is overwhelming.

I was trying to think of the right things to say to a friend whose baby just died, and went back to an email that I had sent to my cousin when her daughter, Faith, died late last year.

I decided that I would share it with this friend. But also that I would share it here.
For what it's worth.

This is my advice to those fresh in grief.
Some of this may be familiar to those of you who have read here for a while.

All I can tell you are the few truths that I have learned on this journey. You will survive this. It may feel impossible in the coming days and weeks but I promise you, you will.

When you don't know what else to do - just keep breathing. Things don't return to the way they were, but you will find joy again with time.

Also know that you and your husband will in all likelihood grieve differently. That is okay. There is no right or wrong way to grieve, just hold onto the love you have for one another, the love that created the amazing life that was your child, and you will come out the other side of this stronger than you can imagine.
 
Laughter is not a betrayal to the child you lost, and tears are not a betrayal to those loved ones you still have with you. Like the bible says “A time to weep and a time to laugh. A time to mourn and a time to dance.” It feels impossible but I promise you, you will dance again. And laugh.  

It took me 8 months to even want to go on living.  Two years until I smiled on a regular basis. That was my timetable. Do what feels best for you.

Even having walked this road, I find myself at a loss tonight. All I can do is tell you guys how loved you are, and direct as many prayers as I can from those I know in your direction. 

My thoughts are with all those on this road.

Those who will start on this journey tomorrow. 

And those who have come to a place where they can look back on the children they have lost with love, while embracing the possibility of the joys yet to come.

****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.Thank you so much! I would really love to honor Peyton this way, as well as to raise awareness about infant loss, infertility, and the reality of Peyton's cancer.


Peyton's story is a rare one, but it still deserves to be told. xoxo

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.

Making "The Best" Of The Holidays Without Her

Last weekend was the annual laying of the grave blanket on Peyton's hill.

Since her passing, my parents have made a tradition of providing Peyton with a decorated spray of greens meant to keep her warm and protected from the winter snow.

Here is a picture of my mother with last year's grave blanket...

Due to my being on bed rest, I wasn't sure that I would be able to join my parents on their trip up to see her this year. Ultimately I decided that since the cemetery is only a few minutes from our house, and since this stupid SCH had already cost me the chance of celebrating Peyton's birthday and balloon release with her, I would go along and just lay in the car if I had to.

This year my mother decided to go with a different style for the grave blanket, fashioning it into a candy cane. Didn't she do a lovely job of decorating it? I think this year's is her best one yet...

She and my father brought the candy cane over to Peyton's grave, and I watched from the car as hubs got to work attending to his little girl's spot. Even though she is not here, hubs still takes such care in making sure things are just right for her. He cleared out some fall plantings and cleaned up any lingering leaves...

When everyone was happy with the way things looked, hubs waved me over from the car and I joined in the celebration.

Here we are, all together - Hubs, Me, The Snowflakes, and Peyton...

(please excuse the awful, awful, wild static hair and lack of make-up

nearly a hundred days of bed rest will do that to you)

Peyton had a nice visit with her Gramma and Pop-Pop who said some prayers for her, and talked to her about the upcoming holidays...

There was even enough time to sing a few Christmas carols...

Our time with Peyton, unfortunately, was limited. On bed rest I am not allowed to stand more than 10 minutes at a time, and this short visit had my stomach and back in quite a bit of pain, but it was worth it.

I have really missed being able to visit Peyton on her hill these last few months. A mother feels her child with her always, it's a bond that even death can't break. But for me, that cemetery is sacred ground. It is where my child lays. Even though I carry her spirit with me everywhere, regardless of location, there is still something to be said for being so close to what remains of her physical being.

When we were expecting Peyton, this is certainly not the way I envisioned spending the holidays with my little girl, but nothing about living without your child can be expected. Though not ideal, our visit with Peyton was still nice, and I am grateful to my parents for creating this lovely tradition.

What traditions have you put into place to make "the best"  (or at the very least the "most bearable") of the holidays without your little one's here?

I am blessed. I am burdened.

Every once in a while I get a note, an email, or a comment from someone expressing concern that in missing my daughter, I am not focusing enough on the blessings that are these little snowflakes, or that if I focused more on the blessings that they are, it would make missing Peyton somehow become easier. I don't begrudge the comments, they are always well meaning and said with love. It's just that to me, the thought of focusing on your blessings not your grief sort of oversimplifies what it is to be in a high risk pregnancy after a traumatic infant loss.

Amongst the rays of joy and sunshine, my grief thrives, and deep down I know it always will to some degree. How can I not grieve when a part of me, the first life born of the love between my husband and myself, will never be here with us? Her loss has cut through me at an organic level. It has altered the very core of my being.

A wound like that is chronic. It may lay dormant at times, hidden beneath the surface of our smiles, but the pain at losing Peyton, in the manner in which we lost her, will always be there, and reminders of what we don't have, will always be evident.

I was coming home from the cardiologists office the other day (I have been having some cardiac issues this pregnancy too, but will go into that on another post) and passed a woman on the street pushing a twin stroller with two 18 month-ish children in it. Beside her, a girl who appeared a few years older, pushed a stroller of her own with a doll inside. The mother waved, and smiled, and I waved, and smiled, but it hurt like a dagger through my heart.

THAT was what should have been.

My daughter should be here, trying to make whatever sense she can in her own toddler way of my ever growing belly. She should be that little girl in a year and half's time, walking alongside her momma and siblings, pushing a doll down the street. There are so many things that should be with Peyton, but they won't and never will be, and that hurts.

I can accept that she is never coming back. I can accept that for all of my life I will struggle answering "how many children do you have" or wonder what she would have looked like at a particular stage in her life. What I can't accept is what I can't understand - that for reasons that have still never offered any answers, two perfectly healthy people made a cancer ridden child, and a month of suffering was the only life she ever knew. I do my best to hold onto the beauty - the memories of holding her, how she smelled, the touch of her cheek against my chest, but I will never understand why she is no longer with us. Why part of me is no longer with us. Why my husband and I will never again be "whole."

That's not to say, of course, that we can't live a life of joy. It's just to say that a life of pure joy is not possible.

We have seen too much.
Lost too much.
Cried too much.

I experience joy daily from the love of my husband, my family, my friends. The reassuring nuzzle of my dog Charlotte against my side. Each bout of morning sickness, though it taxes me physically, that offers a sign that things are moving along as they should be.

Each day I offer gratitude for these babies. After hearing the words, "you will never again have children" I know full well that each kick is a grand accomplishment, and every punch or jab is a reassuring gesture of love that all will be okay. I rarely allow myself to dwell on all the reasons that have me on bed rest, or the scary complications they can bring, and instead tell myself that in four months time, God willing, these little snowflakes will be born into this world healthy and whole, and another level of healing in my heart can begin. 

A level of healing. Not a cure. There is no cure that can undo what has happened to our sweet Peyton.

I look for joy and blessings in the every day - but I am only human.

I have found it impossible to experience so much loss - to carry a child I believed was healthy and discover at birth that she would most likely not survive; to try to live with making end of life care decisions that come to haunt me daily about that child who I so wanted, planned for, and loved; to have to bury that child, and then just get over it, or sugar coat it beneath life's other blessings.

I know that there are many who have had it worse than me, and remind myself of this every day, but somehow that just doesn't make this journey any easier to take.

Most days I wake up and I feel content - not whole, I will never feel whole, but content. On other days I am paralyzed by the fear of possibly re-living the nightmare that has been the last few years. Scared mostly by the knowledge that I got through by the skin of my teeth the first time.

Right after Peyton died, a friend told me that people would be looking to me as an example of strength. This friend has since all but vanished, and I have felt in my heart that it is because I didn't live up that expectation. I wasn't strong through Peyton's death, I didn't and still don't know how to be. The best I have been able to offer is honesty - my weakness and vulnerability exposed every step of the way.

In my current journey, the one of walking the tightrope between bereaved mother and expectant mother, I follow much the same path. Most days I feel confident that all will work out, but on others words like pre-term labor, infant loss, high risk, and leukemia come banging down my door, and when they do, all I can do is hold on tight waiting for that storm to pass.

There are certain African cultures where young boys are sent out into the woods to hunt at night as a right of passage. Some of these boys, too, struggle to be brave. Some of them find that they, like me, are not "examples of strength" but walking into that dark jungle is what they have been called to do, so they go out and try none the less.

Fears surround them - of the dark, of what lurks in the shadows, of the stories of other young hunters encountering wild beasts that over power them. They are sent into these woods with a spear and a message - a token of advice from the elders to get them through. "Yes these terrible things can happen in the jungle, but that doesn't have to be your story."

I think of these boys on the really tough days. The days full of guilt and grief and fear and I remind myself that yes I lost my first child with no warning and no answers and yes I am scared it could happen again, but even though Peyton's birth story and life were tragic, and will always stay with me, that DOESN'T HAVE TO BE the snowflake's story.

I repeat this message to myself until it starts to feel true, and when it finally does, I pick up my spear, and my gratitude, and push forward through the jungle once again.

Guilt.

Guilt -
Will this feeling ever go away?

My grief is like a tidal wave...

Triggers, triggers everywhere.

Reminders of all you went through.
Reminders of all we went through.

Tonight it was a movie. I didn't know it was that kind of movie.
It knocked me through a loop.

Just know baby girl that I am missing you so much. And I am so sorry I couldn't save you. And that I wish I could make peace with all that needs to be made peace with, because I know you would want that for me, but I have not yet found a way.

I found this poem tonight. It made me think of this journey through life without you, though to be honest I feel my grief is more of a tidal wave than a river, stealing my bearings when it comes, but a river is a beautiful image nonetheless.

Missing you always.
xx
Momma

My grief is like a river, 
I have to let it flow, 
But I myself determine, 
Just where the banks will go.
Some days the current takes me 
In waves of guilt and pain
But there are always quiet pools 
Where I can rest again.
I crash on rocks of anger 
My faith seems faint indeed 
But there are other swimmers 
Who know just what I need.
And loving hands to hold me 
When the waters are too swift 
And someone kind to listen 
When I just seem to drift
Grief's river is a process 
Of relinquishing the past 
By swimming in Hope's channels 
I'll reach the shore at last

~Cynthia G. Kelley~

Two Years Ago Today - In Flashbacks

Two years ago today, the fungal infection from the chemo had spread, and you, my perfect pink little Peyton, looked bruised and battered, tired and old.

Two years ago today, Daddy held you in his arms calling you his "Little Sugie Sugie", and we joked through the tears about who had lost more hair over the previous month, Daddy to stress, or you to chemo.

Two years ago today, I saw a group of doctors in the hallway. And then your social worker Mary appeared looking concerned, and I knew bad news was to come.

Two years ago today, more white coats than I could count shuffled into your room. They told us about a plum sized mass that they found in your brain, and I wondered how that could be possible when you showed no signs outwardly.

Two years ago today, you stayed awake with us for hours, staring deeply into our eyes. This was the greatest gift you ever gave us - these moments of bonding with us one last time.

Two years ago today, I received a prayer shawl with a prayer to Our Lady of Mt. Carmel in it from my boss. The note said it was "never known to fail," and I wrapped you in the shawl, praying and rocking and crying and begging in a way that was desperate and pleading and manic all at once.

Two years ago today, the look in your eyes told us not to worry. We believed in you, our little prize fighter. That you would pull through, and be that 1%.

Two years ago today, you stared past me at the wall, to an area where a red painting from your cousin Emily was hanging just over my shoulder.

Two years ago today, the neurosurgeon told us not to worry. He assured us the mass was not affecting anything, and that in two days, on that Friday, it would be easily removed.

Two years ago today, we felt hope and promise about your infection. The surgery the day before had been successful, or so they told us. It still makes me ill knowing what chemo did to you.

Two years ago today, you tried one last time to root. And I told nurse J that you were hungry, and she in turn broke my heart. She said you didn't know what you wanted. That you were only rooting because it came naturally, and that feeding you was impossible because of the blackness that had spread to the roof of your mouth. I am so sorry baby girl. I had no idea it was to be our last chance together in this life for that.

Two years ago today, I still held out hope for your future. I continued to pump and store milk, believing my antibodies delivered through your feeding tube would help you get well and be strong.

Two years ago today, you had come through your first white blood cell transplant with flying colors. We had been up with you all night the night before, hadn't changed in days, and were exhausted.

Two years ago today, the greatest regret of my entire life. At the nurse's urging and reassurance we left you at the hospital around 10PM, to rest up for the two long days of surgery you had scheduled ahead.

Two years ago today, your favorite Nurse Katie and the doctor on call spent all night with you having a "girl's party." I learned about this weeks later, in a handwritten Papyrus condolence card.

Two years ago today, your last night on earth before dying. I had no idea what I would have to do the next day, or how even years later, I would still be struggling to live with it.

Two years ago today, I didn't know yet what it was to hold my dead child. I didn't know how small you would look in your casket, or how permanent your absence from our lives would be.

Two years ago today, we listened to John Legend on the ride home. He asked "where did my baby go," the cruelness of this foreshadow still unknown to us.

Two years ago today, I wasn't that woman who cries out for you on a hilltop. I had never clutched the earth wanting to dig and get my child back, or cursed God for what he had done.

Two years ago today, I went home to rest still believing - that God and prayers and miracles could save you, holding onto my last bit of innocence.

Two years ago today, I still roamed this earth complete. I have since learned to walk on once again, but it is with the limp and struggle of an amputee, adjusting to a new awkward stride while never again feeling fully whole.

Someday it will be five years, and ten, and then fifty, and even then every moment of your life, every decision, every everything, will remain as clear in my mind, as burned into the core of my being, as it was when it happened two years ago. 

I miss you baby girl. I am so sorry I didn't see it coming. If I could go back I wouldn't have put you down for even a second.

If I had just seen what was coming, two years ago today.

Waiting for the other shoe...

Last night I had a dream. In my dream I was where I am now, a few days post IVF transfer, awaiting my pregnancy test. 

I dreamt that I was walking along a sidewalk in the city. Each stretch of concrete that I travelled was surrounded by a small patch of grass with little yellow tickets warning that pesticides had been applied. I tried to get away from the harmful chemicals, frantically crossing the street, but as I did, more little signs popped up. It wasn't until I came to an area where there was no longer any grass, that I finally was able to take a sigh of relief - and that's when I saw them. 


Men, dressed in protective gear, were spraying pesticides at weeds growing up through the cracks in the concrete. The smell burned at my nose, and I clasped my hands over my mouth trying not to let any of it in. I held my breath and started running past them as fast as I could, but as I ran, the chemicals from the sidewalk soaked into my socks and shoes, and I could feel the wetness spreading across my skin.

I was desperate to get away. The pesticides, it seemed, were everywhere. Standing in this concrete space, I began screaming and crying for someone to help me. Finally, after what felt like an eternity, a taxi stopped, and I begged the driver for a ride. I told him about my little babies, and that I needed to protect them, but he didn't care. He just stared at me, straight faced, demanding payment. When I checked my pockets, and showed him what few coins I had, the driver told me it wasn't enough, laughed, and drove away. 

I was alone, hopeless, and afraid. It felt like no matter what I did, where I turned, or what steps I took, my poor little embryos would be exposed to some cancer causing agent. When I woke up this morning, I was terrified.

I know they say that stress affects implantation, so I wish I could calm my mind, but as I look around me, I see threats everywhere. Threats I didn't pay much heed or attention to when I was pregnant with Peyton. Don't get me wrong. I ate all organic with Peyton, refusing any processed foods except on the rarest of occasions. I worked out five hours a week, and had excellent prenatal care. I did all these things, and still, she was born with cancer.

Now it is as if my eyes have been opened to a world full of hazards. 

I am afraid to walk down my own street, for fear of what neighbors may be putting on their lawns. I went tag sale-ing with my mother the other day, and couldn't even bring myself to get out of the car for the same reasons. I drive with the internal air being circulated at all times, worried that some fertilizer or chemical truck might pass me and send harmful toxins in through my vents, or that the cigarette smoke from the car beside me will harm these little ones too. And my fears don't stop there.

My husband took me out to eat last night. I got meatloaf. I love meatloaf. But last night I looked at the plate wondering if my veggies had been washed enough. If the beef was grain-fed, or full of antibiotics and hormones. If any of the ingredients came from cans lined with harmful BPA. If the water I was drinking, being city water, was being treated in a manner that could harm them. If the adorable dog who came up to me on the street wanting to be pet, had chemicals on his back. If the cheerios I ate to get me through my bout of nausea, were processed with too many chemicals for these little ones to tolerate. If the computer, on a table in front of me, posed any sort of microwave danger, or the cellphone my husband handed to me, was sending harmful rays.

You can see where this is going.

I KNOW that I need to find calm. I KNOW that I can't allow my fears to take over because stress affects success rates, and believe me, I am trying. But how? How, when the first time I did everything right, and still created a child so wracked with cancer, how can I find peace? How can I trust that these precious little embies who I love so much, will one day arrive in this world safe, and healthy, and alive?

How? 

When all I have known of motherhood has been heartache and loss, how can I BELIEVE?

rebirth

I could never use Peyton's room for another baby. It is just too full of sadness. I look at the room, and remember what it was to collapse into it. I see the gifts that lay unopened, and the life that went unlived. I pass that room with my eyes cast downward, and only rarely, when my heart or mood compels me to do so, venture in.

I feel taunted at times by that little room. It calls to me from behind its closed door with an emptiness that reminds me of what I will never have. Peyton is gone. She never came home and she never will. The bunny waiting in her crib will never be cuddled. The hand crocheted blanket will never give her warmth. That room remains empty, and in doing so, that room remains cruel.

I have given a lot of thought to that little room. If I had it my way, I might cement the door shut. Or cut it off from this house completely. But then there would be the cement, reminding me of what is behind it, and I would be back at square one.

When we bought this house, we termed the little room with the big windows "the baby's room," long before we even started trying to conceive. It just felt like the perfect little room - bright, full of sunshine with views of trees and birds outside the window. It faces away from the street, so passing cars would never interrupt a child's sleep with the sound of their engines, or the cascade of their headlights across the walls. For months we planned Peyton's homecoming. Decorating the room. Washing and folding tiny clothes. Plugging outlets. Now, over a year and a half after her death, this little room sits stagnant, veiled by a layer of dust and time.

There is this Superchick song "Beauty From My Pain," that has become a bit of a rallying cry for me, a mantra, my theme song. If you'd like to hear the song, it's in my playlist. The entire song really touches me, but especially these lines:

Here I am, at the end of me

Trying to hold to what I can't see
I forgot how to hope
This night's been so long
I cling to your promise
There will be a dawn

After all this has passed
I still will remain
After I've cried my last
There'll be beauty from pain
Though it won't be today
Someday I'll hope again
And there'll be beauty from pain
You will bring beauty from my pain


This song has gotten me thinking about this journey, and though it has been the most difficult time of my life, there has also been beauty, in the form of a gift that my daughter left for me here on earth - my words.

I always "liked" to write, but was too busy to invest any time into it. Peyton, in her own little way, reminded me as she was leaving this world, that I should write how I was feeling, and for me, that has been the "beauty from my pain."

My writing has comforted me. It has been cathartic and healing and therapeautic, and at odd times, through exploring fiction writing, has allowed me to escape all of this, and so it just feels right that when I finally feel peace about packing up Peyton's things, and filling that little room with new purpose, that it should be as a writing space. Long time readers of this blog will say, "yes, we know, you have mentioned this before" and I have, but something I received recently makes the transition feel more possible, and makes me feel a little more brave.

I was speaking with my friend Angie over at, among other places, Still Life 365. Angie is an incredibly talented writer and artist. I expressed to Angie that I needed something beautiful, a piece of artwork to breathe new purpose into that little room. I wanted a starting point, something that would make the process of  transitioning the room from a place of cribs, changing tables, and diapers, to one housing books, dictionaries, and inspiration, feel more possible.

I needed a focal point.
I needed something to remind me of the beauty of this journey.
I needed inspiration.

Anyone who knows Angie, knows that her life has recently gotten a little more busy with the birth of her adorable son, so you can imagine my surprise when she contacted me to let me know that she had something coming for me in the mail. I went to the post office, and found this waiting for me...

Angie calls the piece "Inspiration and Instinct." Isn't it beautiful?

The quote along the top is a favorite of mine by James Thurber. It says, "Don't get it right. Just get it written."

She explained the piece to me, saying :

"The image itself I wanted to make fantastical and accessible. I made your hair long and flowing to give it an air of exaggeration, as well as extend your arms out to encompass novels and ideas. I have an old dictionary/ encyclopaedia, and I thought it would be cool to cut out the definitions for inspiration and instinct...

I thought it would be cool if you were inspiring not just painted swirling ideas, bits of paper, literature, but also these butterflies and moths, each an inspiration. Moths I always associate with night, and butterflies day, so they are supposed to inspire work day and night. I actually thought of painting them, but liked that between your hands was both fiction and non-fiction; painted and from a book."

Seeing this painting, holding it, brushing my hands across the canvas - it just felt "right." It is beautiful, and inspiring, and compels me to write. This painting needs a home, and I know that home is the little yellow room. Having this painting here, I am feeling a little more brave because it helps me to see myself in there, writing away and feeling Peyton all around me.

Thank you so much Angie!

*Angie's artwork, as well as many other fabulous items, are available at her Etsy store. You can visit that here: Kenna Twins

*PRAYER REQUEST: 

Please join me in praying for a little baby boy named Gether who was born on 5/19 at 5 weeks premature. He has overcome many battles (including his heart stopping twice) and needs prayers for strength and healing. xx 

Tending To Our Wounds

"Don't you think it's unhealthy to talk about it all the time?"
"Don't you worry about what people will think if they read your blog?"
"Is writing about it really what you should be doing now? It's been over a year..."

When I was in college, my five roommates and I worked at a certain world famous theme park. One day I came home complaining about a man who I had called security on for having exposed himself. Nutty park patrons were something we all dealt with daily, and my story kicked off a sort of round table of griping about the weirdos that colored our days. I thought my story was the strangest, that was until one of my roommates, a hostess at a park restaurant blurted out, "you think you deal with weirdos, girl you don't know weird until you have dealt with the 'towel baby'. "

'Towel baby' was just that - a towel, dressed with sunglasses and a hat to resemble a baby. The park patrons who brought 'towel baby' were regulars at the parks, such regulars in fact that my roommate had been instructed during her training that she (and all the other employees) were to follow along with the couple's delusion.

When waiting on their table, staff were to comment on how cute 'towel baby' was, take food orders for 'towel baby', and treat 'towel baby' as they would any other child at the park. As they ate, the couple would sneak bits of food away from the table, to give the illusion that the child had eaten it himself. My roommate told me that she had heard that the couple had lost their child, and under the pressure of grief, the wife snapped one day and began treating the towel as it were her child. Not wanting to upset his wife's already delicate mental state, the husband went along with the front.

Many who heard the story of 'towel baby' would write her off as a wacko and laugh. I even came across a forum once devoted to making fun of this woman. In the years since I heard the story, I have often wondered how it was that someone could be driven to such a place mentally.

Nine years, and one dead child later, I have a little bit better idea.

I was telling the story of 'towel baby' over our IBMD lunch, when one of the mothers I was lunching with told me about a woman who lived on her street when she was a kid. She said the woman had lost her child, and would spend her days walking up and down the block, pushing a stroller with a doll in it. She believed the doll was her child. Neighborhood kids would taunt the woman, even going so far as to throw the doll into the river. "She believed it was her baby," this mother told me. "Can you imagine how traumatic that was for her to see what she thought was her baby being thrown into the river?"

The story was heartbreaking.

Images of bereaved mothers are often portrayed in movies and on television as women who have simply snapped. On the show One Tree Hill, a nanny went crazy and tried to replace her dead child, with the boy who was under her care. The villain in the movie The Hand That Rocks The Cradle went insane after, among other things, miscarrying a child.

Do you see a theme here?

Urban legends, literature, movies, the media, each offer depiction after depiction of women who have not only lost their children, but their minds, and honestly, having lived this nightmare of loss, the assumption that losing a child can send a woman over the edge doesn't feel all that far fetched.

There are no words to describe what it is to go on living after your child has died. No words to describe what that does to a person, or how it feels. For me, compound that loss with infertility, and the list of descriptors grows longer by the day.

Gut wrenching.
Suffocating.
Unyielding.
Desperate.

These are a few I would use, but even they don't do it justice.

My grandmother lost two babies back before women could talk about losing a baby. I thank God that she went on to have more children (one of which was my mother who went on to have me) but I don't really know how she did it. Especially not back then. Back then, some women would put on brave faces. Others became shut ins. Many, unfortunately, were unable to fall in line with society's expectations and grew too hopeless to go on living. Whenever I hear comments made to other BLM's about moving on, I think of these women, and I cringe. Is that what pushed them over the edge? One too many people passing judgement on their grief?

What society doesn't understand is that grief is not a phase, or a choice. Anyone who believes that the grieving have any choice in the matter are either incredibly lucky for having never faced anything so painful in their own life, or incredibly foolish. As a bereaved parent, you can choose to put your best face on, you can choose to put your best foot forward, and still end up drowning in your own tears because of the many varied day to day reminders of what you had with your child, what was lost with your child, and what never will be for your child. It is a long and nasty process, and if there were any choice in the matter, the bereaved would take it. We want to be free of our heartache but it just isn't that simple.

My child died.
It was horrific to watch.
There is no cure for that.

I started this blog nearly a year ago (5/17/09) with a poem I had written about Mother's Day. It was my first Mother's Day, a day I had envisioned during my pregnancy, and one that I was being forced to spend without her. That first Mother's Day was full of grief. My second was grief and anger at my lack of fertility. Sometimes I can't help but wonder how life can be so cruel.

This past year I have chronicled the occasional ups and many downs of surviving child loss while facing infertility. This blog has been my place, my catharsis. This has been my space to vent and be heard and understood and thank God for it, because it is only through being honest here, that I have maintained my sanity.

Some think that grieving openly is unhealthy but I beg to differ. It is suppressing our grief that is unhealthy.

Our grief is a wound, deep and in pain, and it has to be examined and cleaned and dressed for it to heal. Sometimes the same areas have to be cleaned two, and ten, and a hundred times, and if that is what it takes to heal, so be it. Not dealing with our grief would be like expecting a band-aid to heal a wound.

Placing a band-aid over a wound for the sake of not troubling others with the ugliness of what has happened is an invitation for infection. Sure it might look better on the outside, but beneath that clean, shiny bandage it would be festering (sorry, gross analogy) and could cause irreparable damage.

Damage that might make a woman believe a doll, or a towel, is her child.

I have been thinking alot about the 'towel baby', and the doll in the stroller. I have been wondering what makes them different than me, than you, than any of us in this God awful baby loss world.

Just like us, these women were at one point considered normal. They had their whole lives ahead of them. Just like us, these women rubbed their bellies, and anticipated their child's birth. Just like us, in some way or another, they witnessed the end of their child's life.

I think that is where the similarity ends.

Unlike these women, we have sought out the help and validation of others who are walking this path with us or have walked it before us. Unlike these women, we know how healing self expression can be. Unlike these women, we understand that what we are going through and feeling may not be the societal norm, but is perfectly normal under these circumstances. Unlike these women, we are lucky.

Yes, you read that right. Lucky.

Lucky because we are still here.
Living.
Breathing.

We know that we could try masking our grief, or ignoring it, but that doing so wouldn't make it go away, it would only cause it to manifest in other ways.

We are lucky because we are tending to our grief, and as impossible as it may feel at times, we will be better for it.

It is only through tending to the wounds of our grief that they can heal, and we can survive - sanity and all.

Oh God...

Since last Thursday's test, I have been on this recurring loop of angry, bitter, accepting, hopeless, hopeful, and back to start at angry again. What can I say? I am all of these things. I feel gypped, cheated, and screwed. I want to wave my fists at the air, and shout how unfair this all feels. Was it so out of the realm of possibility to believe that God might, just this once, cut us a break?

This post is not meant to bash anyone's religious beliefs. My feelings are actually just the opposite. I am jealous - genuinely jealous, of people who can claim that "in faith He afflicted me," and find comfort, rather than fear, in that relationship with God. That being said, I welcome any comments, religious or otherwise, to what I have written here.

People love to tell me that if God intends for me to have a baby, then I will. What am I supposed to do with that? I am infertile because a doctor didn't take the time to prescribe me some antibiotics when she checked me out of the hospital right after a c-section. Did God intend that she would be neglectful? Does God intend for child abusers and drug addicts to have babies? Did God intend for the woman on last night's news to go drunk driving with her child in the backseat, or that so many children in this world should be born into situations that offer them no real chance at life - war, poverty, disease? 

When I was 17, I walked away from the church. I was a teenager and felt disconnected and just didn't see the point. At 22, and completely out of nowhere, I felt called back. This is a piece of the puzzle that makes no sense to me. How, after finding my way back, could God choose to test me in such a way?  I don't know why I am pouring this all out here today. Maybe because I just don't get it. I don't get why a God who I so loved, a God that I put my faith in, would test me over and over these past few years. The exercise was meaningless, and I know that I have failed. 

I am not a better person, Christian, friend, wife, daughter, or sister because of this. What was left of me after Peyton died, is being beaten and battered by the intense sense of failure, injustice, and anger that comes with this infertility. Am I really to believe that it was God's intention that I not only lose my child, but my fertility to a doctor's oversight as well?

To say my relationship with my faith is strained right now, is an incredible understatement. For the last two weeks I haven't even attended services, something that I have felt drawn to do weekly over the last 8 years. I can't go there right now. I don't know why or what this means, just that right now, I can't.

I guess maybe I am tired of feeling so abandoned by Him. Words in the poem "Footprints" that used to mean so much to me: "During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you." now feel vacant and untrue. 

Not once in the last 19 months have I felt His comfort or compassion carrying me through this loss. My feet don't feel capable of crossing the sand, but instead stand still, stuck, sinking lower and lower with every attempt at righting the wrongs of these last few years. Try to have another baby - sink deeper. Learn of infertility - sink deeper. Attempt IVF and fail - sink deeper. It is like I am trying to claw my way out of this hole, and with every handful of sand that I throw from the hole, a shovel full comes raining down over me, holding me in place.

For those who talk to me about God's intentions, is this, too, God's will? Am I to believe that the God who I loved so deeply would be standing above, loading his shovel against me? 

There was a beautiful sense of security that used to come from my close relationship with God, but it is gone now. That was before. Before I watched the unthinkable happen. Before I witnessed the most innocent being that I had ever encountered, endure pain on top of pain on top of pain with no respite. I begged God to heal Peyton, and He did not. I begged Him to take her peacefully, and relieve her of her pain, and He did not. I begged, and I pleaded, and I cried, and my prayers fell on deaf ears, and the sense of betrayal that I feel from that is overwhelming. 

For months after Peyton's death, I felt alone, and scared, and sad, and distraught, and filed weekly to my seat in the pew, to see if I could feel Him there with me. Week after week I prayed that God could come into my heart to make some sense of all that happened, and week after week, no answers came. I guess I just don't know how can I make peace with that? 

When people tell me that if God intends me to have a baby it will happen, don't they understand that miscarriage, child loss, infertility, and now a failed IVF have clouded that statement to such a degree that it feels simply untrue for me? Can't they understand how hopeless that makes me feel? They might as well be telling me that it just won't happen.

Thank You Facebook...

Thank you for your many stories, statuses, and updates about people's pregnancies, children, and the joys (and complaints) of parenthood, that time and time again remind me just how left out to feel in this world. Thank you Facebook, because honestly my dead child and lack of a successful subsequent pregnancy really wasn't enough to drive that message home. 

The Ups and Downs of "All Systems Go"

Tomorrow morning, at a little after 8 AM, hubs and I will be heading to the RE for our egg retrieval. I would by lying if I didn't say this has me all jumbled up. There are SO MANY hopes hanging on this very important procedure. That being said, between the hormones and the self injecting, the fear of the super long progesterone shots that will be going into my back starting in the next few days, and that debacle with my shot last night, I guess being jumbled up is to be expected.

If all goes well tomorrow, our child(ren) will be conceived via petri dish on April Fools (also my mother's birthday) transferred on Easter, a pregnancy test would come tax day, and their birth due right about Christmas Eve. In my family, my mother, father, sister, and myself, all have birthdays falling on a calendar holiday, so I have decided to take the timing of this cycle, and these funny dates, as a good sign.

As excited as I am for this *hopefully* new journey towards parenthood, none of that excitement quells how deeply I am missing Peyton. I find myself wondering what she would be doing, or about how different secondary infertility might feel, if I had my beautiful girl home to mother.

I am scared (out of my mind actually) about all the answers we don't have regarding how it was that our little girl was born with Leukemia, and am praying that I am doing, and have done, all that is necessary to keep these new little eggies from a similar fate. A beautiful fellow babyloss and IVF momma sent me some CD's of IVF meditations, and I have been using them to find some peace from the worry and anxiety, in the moments that my heart allows.

I don't know how many eggs will be retrieved tomorrow. I have been bordering on OHSS, an overstimulation condition that I REFUSE to Google because I already have enough on my mind. What I do know is that at yesterday's ultrasound they counted 60 follicles on my left, and about the same number on my right. Yes, you read that right, SIXTY follicles, a number that has me praying for God to *please give us enough healthy embryos from these follicles to make a family, but not so many that we can't use them.* Despite the science involved in IVF, I consider each and every child created by my husband and I as just that, a child, and the possibility of facing a lot of unusable embryos is something that tests me a great deal.

The woman doing the ultrasound also told me that my ovaries have grown so large that they are now touching. I know I am no doctor, but on all the diagrams that I saw during my years in public school sex-ed class, I never remember seeing an image of two ovaries hanging out together. It was always my understanding that they were sort of loners, taking turns each month at doing their own thing. The image of them bouncing into each other in there sort of gives me the heebie jeebies.

Because of the risk of OHSS, I have been put on a high salt intake, and Gatorade diet, and advised to do little to no exercise so as not to risk twisting an ovary. This is hard for me, because exercise is a big outlet for my anxiety, and water is my drink of choice, but doctors orders are doctors orders, so here I sit, on the couch, 2 liters of gatorade on my left, a salty black bean concoction for lunch on my right, and the cautiously optimistic hopes, that we may finally be moving towards the promise of parenthood, swirling around in my mind.

My nightmare...

Last night I went to sleep feeling very optimistic. Our appointment yesterday with the RE went very well, and he told us that my estrogen levels are rising, but remaining under control, and that my follicles are maturing nicely, many of them in the 11, 12, and 13 range (whatever that means.) He anticipates retrieval for the end of this week. After our appointment, I spent a peaceful day with hubs, and we even took in a movie (Bounty Hunter- don't bother). All of these things should have contributed to a restful sleep for me last night, but rest was not in the cards.

I found myself caught in a dream. A very vivid and cruel dream that, though I tried to break free of it, held its grip on me, making waking very difficult. You ever have those dreams, where you know you are sleeping, you know it is a dream, but still you stay stuck?

In my dream I was a nurse. After Peyton died I had felt this deep desire to go to nursing school and help other sick little babies. This lasted about five minutes until I realized that the prospect of seeing another child turn blue and die before me was one I couldn't live with.

I dreamt that it was my first day out of nursing school and I had been assigned to work on the floor of the hospital where Peyton spent her life. I walked from room to room, recognizing the familiar faces of the staff, and as I observed them caring for other patients, I grew more and more anxious. Things, blatant things that I had learned in nursing school about caring for patients, were being completely overlooked.

I became like a crazy person, flailing my arms wildly, and pointing out these missing and crucial steps in care to the doctors and nurses. I was saying things like, "You did this with Peyton too, I know you did. How could you have overlooked this with my child? She was just a little baby! Couldn't you see that? She wasn't a normal kid battling Leukemia. She needed special care!"

The staff just stared back at me blankly, or rolled their eyes, or waved me off with their hands in disgust. They told me I didn't know what I was talking about, and called my accusations "ludicrous." The more they dismissed me, the louder I got, desperate to be heard, and the louder I screamed, the less attention they paid to me.

When my energy was spent, and I could scream no more, I fell over against the wall and onto the floor exhausted. "Can't you see?" I was begging, grabbing at the staff's legs as they passed. "Can't you see that your neglect killed her?"

The staff ignored me, shuffling by as if I wasn't even there. It was clear that my words had fallen on deaf ears as they continued going about business as usual, ignoring me as I laid, manic, in a sobbing heap at their feet.

"You needed to do more..." I kept repeating, "I should have known that... I should have made you do a better job. She came here to get well. I should have made you do more."

Today marks 543 days since Peyton left this world. 543 days, and this dream has me wondering, if not at 543 days, then when?


When will the second guessing end?