Showing posts with label babies die. Show all posts
Showing posts with label babies die. Show all posts

Wednesday, September 4, 2013

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.

Tuesday, January 22, 2013

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.


Tuesday, October 2, 2012

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.

Thursday, March 29, 2012

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.

Monday, November 14, 2011

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

Monday, October 3, 2011

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

Sunday, January 30, 2011

I was going to...

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

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

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

How I must be healing.

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

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

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

And I started to panic.

To panic about things that no one else panics about.

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

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

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

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

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

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

Exposure.

Exposure.

Do you see a theme here?

Exposure.

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

I see dangers in everything and feel so much pressure.

Pressure to protect them.

Pressure to keep them safe.

I am responsible.

I am their mother.

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

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

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

I lost my child to cancer.

EVERYTHING has been linked to cancer.

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

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

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

Thursday, December 23, 2010

Loss of Faith - Please send your prayers.

I am absolutely heartbroken to report here that Baby Faith Margaret Venezia, the adorable little girl whose button has been on the right side of my blog these last few years, and the daughter of my amazing cousin Erica who I have written about here, lost her battle last night to HLHS, a congenital heart defect, at just two years old.


Erica and I both welcomed our daughters into this world in September of 2008 and I have often wondered how two healthy cousins, from a healthy family, could bring such sick babies into this world. Erica's friendship through my grief of Peyton has been a godsend, and I have always looked at little Faithy as the one who would survive. Peyton's battle was too big to overcome, I told myself, but Faith, Faith was going to make it.

Through many ups and downs, Faith, like her mother, always faced adversity with an upbeat attitude and a huge smile. There are no words for how saddened I am to know that my cousin - my strong, amazing cousin - has now entered this world of loss. The anger I feel at this broken world for making children face battles too great to defeat is immense.

I know that many of you have followed Faith's blog in the past, and I ask you, please go here, to Erica's guestbook to send some love and prayers of strength and understanding to both she and her husband Billy.

Tuesday, December 14, 2010

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.

Wednesday, December 8, 2010

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?

Tuesday, November 2, 2010

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.

Thursday, August 12, 2010

I hate stupid people...

I hate stupid people.

I will re-phrase that.
I hate stupid pregnant people.

I was browsing BabyCenter yesterday and came upon a post titled "Air Your Pregnancy Sins." The woman heading up the post had a profile picture of her healthy, living, firstborn child in her arms.

Must be nice.

I opened the post, and what followed left me simultaneously shocked and disgusted. Some of the over 100 posts were mundane (I eat pizza, I like junk food, I don't work out, etc. etc.) but several of them were by women patting themselves on the backs for doing things in their pregnancies like eating raw sushi, drinking beer, smoking cigarettes, smoking pot, taking prescription painkillers against OB advice, drinking bourbon, sitting in hot tubs, and disregarding any an all warnings about soft cheeses, cold cuts and the like.

These "mothers" were actually BRAGGING to one another about their behaviors, saying things like, "I smoked cigarettes, or pot, or drank through my last pregnancy and all was fine" and it just made my blood boil that while I spent my pregnancy with Peyton eating all organic and working out, it was not these women who were forced to put their child in the ground, it was me.

Where, I ask you, is the justice in that?

I literally wanted to reach through the computer and shake these women and tell them that they are awful, selfish mothers. I wanted to tell them how unfair it is that they got to be so goddamned nonchalant and cavalier about the lives of THEIR CHILDREN, and that putting their babies at risk is nothing to be proud of. I wanted to smack some sense into their heads and say "Hey you, idiot, you are RESPONSIBLE for the health of your baby. Your condition is not an inconvenience. It is not an accessory. It is a privilege! Do you know how many women would kill to be in your position? Do you know how many women struggle for years to achieve pregnancy? Do you have any idea what you are risking? That is your baby!"

I wanted to scream.
And scream.
And scream.

But I realized there was no point.

My cries and pleas would just fall on deaf ears because for reasons far beyond my realm of human understanding, reasons that I won't have answers for in this life and will most likely never make peace with,  the hard lessons of loss are reserved for mothers like me, mothers who planned for and wanted and loved their children. Mothers who did everything in their power to keep their children healthy, and would have done anything to keep them alive.

It is mothers like me for whom the great heartache and loss are reserved, while women like THAT seem to get a free pass in this life.

Thursday, June 10, 2010

how? how? how?

How could this have happened?

Sometimes I can't help but get caught up in these words.

They came to my lips yesterday during an unexpected trip into Peyton's nursery. You could ask me why I entered, and I would have no answer for you. (I haven't been into her room since writing this post in early February.) I can only say that as the knob was turned and I stepped in; as I looked around at the unused baby items, the clothing, the crib, and remembered for too brief a moment what life was like at the time when that room was set up, those words came to my lips... 

How could this have happened?

Tonight a friend stopped over, and out of nowhere, in a way that I haven't in months, I just broke down to her mid-sentence and cried.

I cried that I used to be so in control of things; that I had plans, on top of plans, on top of plans; and now feel that everything is so completely out of my control, that all I can do is collapse into how overwhelming a feeling that is. I feel like a pawn, anxiously awaiting whatever move the universe doles out for me next, and it's terrifying.

I want to be in control of my life.
I want to feel alive.

Even the choice of adding to our family has gone awry. I take shots and patches and pills in an attempt to make happen what had come easily for me in the past, and it doesn't seem to matter.

I see baby items in our house and can't believe that we will ever use them. Not truly believe it. Not in a way that brings any security and comfort to my heart. After all, these things, these precious items that were hung with care, have now been left stagnant, untouched, for a year and a half.

Seeing them makes me feel like they belong to someone else. I feel isolated, left out of a world where babies  happen with ease (or so it seems) to everyone but us. 

Don't get me wrong, I don't want to feel this way.

I have tried positive thinking, The Secret, the law of attraction. I have tried prayer, meditation. I have tried to envision everything working out, but try as I might, right now, I just can't see it, and that hurts.

As someone who so prided herself on five year plans for everything from home ownership to career moves, it breaks my heart that I can't plan five days, five weeks, or five months down the line, because nothing feels within my control. This, too, brings to mind the words...

How could this have happened?

After a blood draw at my RE's office earlier this week, I, like a moth to a flame, walked to the bathroom in the waiting area to wash my hands. I did this, not because they were dirty, but instead for the smell of the soap. Pink and watery, this soap, I had discovered in a flashback of awareness, is the same institution grade soap that we used when scrubbing into Peyton's hospital room.

To anyone else it would smell like soap, but to me it smells like my child. My perfect, beautiful, brave little child who was here long enough to haunt my memory, but too short a time to remain in the memories of others.


Lately Peyton has felt "surreal" to me in a way that hurts like losing her all over again.

I washed, and washed, and rewashed my hands, working the soap deep into my pores, wanting to soak it in, and then as I drove home, I held my fingers just below my nose, breathing in the memory of her, and reminding myself that she was here. She was here. I know she was.

She was real.
I was her mother.
I had a daughter once.

It all felt so cruel to be driving away from the place that signifies my stolen fertility, breathing in the scent of my stolen child, and asking myself over and over...

How could this have happened?

Tuesday, June 1, 2010

Memorial Day

The town over from us has a Memorial Day Parade.

It's a small town.

Quaint.

It's home to a candy shop, restaurants, riverfront trails, and a green field on a hill made fertile by my child, and my tears.

We sit on a stoop with Charlotte the wonder dog, who barks at everything, and nothing, just because she can.

A young couple with a dog, we blend into the background here.

The high school band sends a rush of excitement through the waiting crowd with their beating drums.

People rise to their feet.

It is at this very moment that I see her.

Young, and waddling, and so much the way I imagine my own child would be.
The way she should be.

She struggles to navigate a stoop.
Waves a small flag.
Smiles and claps awkwardly.

"Do you see her?" I ask. "That's what Peyton would be doing. That's how old she would be now."

Silence.

Why is there always silence?

She is our daughter, I shouldn't have to whisper her name into the wind.

Flags round the corner and the little girl laughs at a pug, then cheers for the veterans - the Lion's club - the firemen, all the while clinging to her mother's leg.

Would Peyton do that?

Would she reach for the security of her mommy at this age?

"Mommy." I whisper.
I never even got to hear her say it.

I repeat the word to myself.
About myself.
It feels foreign and untrue.

I watch in envy, desperately wanting to return to the normalcy that surrounds this family.

I am hurt.
I feel robbed.
What happened to my life?

We wanted her.
We were ready.
We should be here, watching our daughter wave a flag.

A familiar heat rushes to my eyes.

I feel the tears coming.
And the lonliness.
And the anger.

My child is gone.
I am infertile.
My life is ruined.

Hundreds of faces are smiling around me, and I am fighting the urge to cry.

How can they smile when a dead baby, my dead baby, lies buried not even a half a mile from here?

Do they even know this type of heartache exists in their quaint town?

The band passes, their tap, tap, tap falling off as they march into the distance.

The crowds disperse and I am left in silence, reality laying a heavy boot across my throat.

My child doesn't dance in the street.

She doesn't wave a flag.
Or pet a pug.
Or smile.

My child has died.
And with her, so has my chance at normalcy.

Tuesday, May 11, 2010

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.

Monday, May 3, 2010

International Babylost Mother's Day 2010

How did you spend Sunday May 2nd?

This year, women who have lost their children came together in their own special ways to celebrate International Babylost Mother's Day, a day created by Carly Dudley to honor the never-ending bond between a babylost mother and her child.

IBMD was an incredible experience for me, and I was fortunate to spend it with two amazing fellow babylost blog mommas.





With me were Malory, mother to Janessa Marie, who writes the blogs  Every Life Has A Story and Mommy of An Angel




And Stephanie, mother to Amelia Rose, who writes the blogs Carried Through Grief  and Beyond Words Designs.
(Stephanie, Me, Malory)          

Our day started over brunch, where we met and exchanged Mother's Day gifts. The irony was that this wasn't discussed ahead of time, and yet we each felt compelled to bring something to the celebration that would honor our roles as babylost mommas, as well as to brighten each other's day.

Stephanie brought gift cards with personalized tags, and a beautiful mix CD of songs that were helping her through her grief. Malory honored each little girl with an angel bearing their birthstone. She also created the "beautiful mother" cards that you see on the table. I brought a candle with each girls' initials on them, to illuminate their pictures as we talked.


These beautiful little girls are Janessa to the left, Peyton in the center, and Amelia to the right. They remained the central focus of our table,  and our day, and  it was truly beautiful to see them there together.

After lunch, we headed to a secluded reservoir for our balloon release. We brought 5 balloons and 1 butterfly balloon for the release. The 5 balloons were sent to heaven, 1 for each of our daughters, 1 for all the other babies lost who had touched our hearts, and 1 sent to heaven in prayer to watch over all the other babylost mommas. Here are some pictures from our balloon release.


(Malory and Stephanie pick out their balloons.)

(Me working on the Momma's Balloon)


 
(Malory writing a balloon message to all of the babies that have touched our hearts.)

We walked down to the edge of the water and said a few words to honor the significance of the day.


The skies were clear and blue, and the sun was shining as we prepared to let the balloons go.

 

And when the moment felt right, we watched them float above us.

 

The balloons lingered for a while, dancing above us in a pack, before beginning their graceful journey into the heavens and out of sight. 



After our balloon release, we stayed together the remainder of the day, walking along the nearby river. We talked about our lives, our children, and our grief. We may have just met that day, but our connection was like that of three girls who had known each other their whole lives. We had so much fun in fact, that it wasn't until after 8PM that we finally said our goodbyes!


Child loss can feel so isolating at times, but yesterday there was none of that. There was no feeling left out or alone. Yesterday we were three mommas, in love with our daughters, celebrating International Babylost Mother's Day together. It was a day filled with laughter and tears and understanding.

Yesterday was beautiful.

Wednesday, April 21, 2010

On Full Disclosure

I wish that I could write here and say that journeying through grief is an ever upward march toward healing, or that each day brings you closer to happy, or that it is possible to put things you have felt, seen and experienced behind you, but I can't - it would be a lie. Along the way there are many unexpected dips, turns, and blockades that rob you of your breath, instill anger, or throw you back a few steps in your healing. This is what happened to me last week. 

I know that the tone of my last post may have upset some of you, and I really wanted to address all those who took the time to offer me advice, share stories, and post comments from various belief systems, as a means of reaching out to me regarding my current struggle. The vast majority of messages left here or emailed to me were supportive, insightful, and understanding, and for that I am grateful. 

My story is not a clean one. Hearing about infertility on top of loss makes some people uncomfortable, tired, or frustrated. On a few sad occasions, it even compels them to send a note passing judgement on how long I should be grieving, or how wrongly they think I am handling my infertility. Sometimes I wonder if in telling me that I have done something to contribute to or perpetuate my loss, it makes them feel that they can put distance between their situation, and mine. If they can feel a sense of security, looking down at me from their high perch, and actually convince themselves that they are untouchable. I assume pointing a finger is easier for some, than having to accept the ugly reality that you can do everything right, and still have things go so incredibly wrong.


Most of the people who read this blog can, for the most part, understand. Most of the readers of this blog are dealing with their own losses, or struggling with their own fertility, and it is because of these shared experiences that they have found this page. It is because of these readers that I cannot apologize to the few who have reached out to tell me that I should be somewhere else in my grief. It would be a disservice to myself, to this process, and to those who come here for a sense of validation and understanding. 


I have always prided myself on being truthful here, even when my truth isn't what people necessarily want to hear from me. This blog is not a "life after loss and infertility is all rainbows and sunshine" type blog, simply because that is not where my life is right now. I of course see nothing wrong with those blogs (I hope to get there myself one day) but right now, in the thick of it, saying anything along those lines would just be lying.


There are days on this blog where I share what I feel to be some semblence of beauty revealed to me by this journey. There are days where I can feel myself doing some healing, or looking to the future feeling hopeful and optimistic. On those days, that is my truth, and therefore I write about it. On days like this past Monday, where I felt kicked down once again, where I wondered how much a person was expected to take and felt at my wits end, that is when you get posts like "Oh God."


It may surprise some of you to know that messages on both sides of the faith fence brought healing to my heart these last few days. Messages from those who have no faith, those who are strong in their faith, and those who have been tested in their faith, have felt this level of anger at God, and have come through. 

Messages like Kelly's: "The bottom line is...I'd rather walk through it with Him than without Him." 
Or Deb's: "Don't listen to me or the next person or God. Listen to you. And don't feel guilty or less of a person ever." 
Quotations like Elizabeth's:"For now, let your rage flow. And above all, as the poet said, rage, rage, against the dying of the light ( I take this to mean hope.)"
Or insights like Fran's: "People don't know what God's intentions are no more than you or i do. You have every right to feel betrayed by a God who should have been there." 

Each of these was sent by women standing at completely different corners of the faith spectrum, and each was sent with one goal in mind - to let me know I am not alone.

In the words of these women, and so many others, I felt validated in my feeling things that, if not shared, would have just left me to feel isolated. For the most part, even those who couldn't agree with what I had said, still expressed an understanding of where I was coming from. I received notes on FB, comments here, and via email, and with the exception of a few that stung to read, felt incredibly blessed for the uplifting openness of this community.

If there is one truth in all of this, it is that once you have lost a child (or your dreams of a child) regardless of how long you had them with you, a part of you dies. That doesn't mean you stop living or that you don't appreciate what you have. It doesn't mean you never see the beauty in life around you, or that you refuse to go on to spite the world. It means just what it means, that a part of you dies, and as that part dies off, other parts of you are born, and somewhere along the way you try to mesh the two and find your new place in a world that you never wanted to know existed, and that is not something that you can do according to anyone else's timetable. That is what I try to do here... to give a truthful account of my journey, even on the days when my account is not pretty or clean.

I am open here even when I know that what I say may make one reader roll her eyes, or another tell me to get over it. I am open, even when I know that in doing so, someone may use my words against me, or imply that any of this is a choice. I have to be truthful here, if not for me, than for the next person stumbling across this page, walking in the same lousy pair of shoes, looking for comfort and validation that while their feelings may not be something that their friends, family, or co-workers understand, under these incredibly abnormal circumstances, are understandable.


That is why I think we need to have full disclosure here. We need to be truthful, even when it can result in someone sending you a comment or an email that hurts to read. When we have been dealt the blows that we have, when we face questions and conflicts that the average person is lucky enough not to need to understand, that is when we must be the most open. How sad it would be, if in looking for validation and understanding, someone reading these blogs only found more of the same... a message that they need to brush these feelings aside, or heal according to the standards or time frame that someone else has deemed convenient.