Tucked Away In Some Corner

I feel sick.
Like vomit sick.

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

Today I tackled this --

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

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

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

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

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

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

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

What's The Point?

What's the point?

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

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

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

Something harmful.

A few weeks ago it was the gasoline fumes.

Then the mercury.

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

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

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

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

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

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

So what's the point to any of it?

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

I just feel so exhausted. 

Plain and simple. 

So
Exhausted.

Defeated.

Disheartened. 

I hate grief.

I hate grief.

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

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

Maybe they did.

Maybe they didn't.

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

The feeling of being used.

I hate grief.

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

My daughter was born very, very sick.

My daughter suffered a tremendous amount in her short life.

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

How the hell do you sugar coat that?

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

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

Yes my life is full of many joys.

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

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

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

I hate grief.

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

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

Why do I do that?

A stranger is not worthy of my tears.

I have earned my tears.

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

In every terrible decision that had to be made.

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

I have earned my right to my tears.

A stranger has not.

I hate grief.

I hate the judgement that sometimes comes in that moment.

I hate when they say, "I am sorry," 

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

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

I hate grief. 

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

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

I froze.

I hate grief.

All of it.

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

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

That's what grief is.

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

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

Depression.

Weakness.

The inability to move on.

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

 or,

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

I hate grief.

I hate the stigma that surrounds grieving a baby.

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

Pretending she never existed?

Would that be a more "normal" response?

Or just more convenient?

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

I hate grief.

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

Grief is messy. 

It is tiring. 

It is forever.

Not the darkest days of course. 

Nothing compares to those early darkest days.

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

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

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

I hate grief.

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

My child died.

I didn't seek that out.

It happened to me.

Nothing about this is a choice.

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

I was 42 weeks pregnant.

I was excited for her arrival.

I had no idea what was to come.

My life was so good.

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

I hate grief.

Most of all, for making me defend it.

Guilt.

Guilt -
Will this feeling ever go away?

Free Pass?

A few months ago, I heard about a woman who had lost two of her three children to infant leukemia. She is the only known case of this happening with non identical twins. Her story sent a ripple of shock and horror through the infant leukemia community because we had all been promised by our own doctors and experts that such a thing could never happen.

Last night my cousin asked me to pray for a 3 year old little girl who was in the battle of her life. Today I learned that her parents, a couple who recently lost their five month old to a congenital issue, have now been dealt the incredibly unfair blow of having to say good bye to her too. Her tiny body couldn't fight off a freak case of bacterial meningitis, something her pediatrician originally wrote off as nothing more than bronchitis.

A woman in my grieving mom's group, a very kind and special and encouraging woman, I learned yesterday, is losing her battle with cancer. Her husband who unfairly had to bury his son, now must prepare to bury her too.

Seems so unfair, doesn't it?

There are a lot of really shitty people in this world. People who hurt and take and think of no one but themselves, and yet, you don't hear about these things happening to them. Why?

You would think that after all a bereaved parent goes through in loving and losing and grieving their beloved children, there would be some sort of free pass. A Get Out Of Heartache Free card. Something along the lines of:

"Your survival through the hell of losing a child entitles you to a life void of any further tragedy."

- God.

I guess this just goes to show that what my doctor told me when she diagnosed my infertility is true: "There is no justice in this world."

These stories are tragic. And heartbreaking. They bring tears to our eyes, and prayers for these families' healing to our hearts. We cry out in anger at God and the Universe for allowing such pain to exist. Hearing them sends us down a road of "Oh, what's the point in even trying," but there is another message here too. An eye opening one. One that must not be ignored.

You are still here. 
You are still alive.
Don't waste it.

It is so important that we not allow our grief to make us complacent in our living. We must not turn our backs on the day to day joys, no matter how minuscule they seem in comparison to the dark cloud that sorrow has cast over our lives. As tough a task as our circumstances make it, and as small as they feel in contrast to our pain, we must remind ourselves of what blessings we do have, and be grateful, because as these stories so cruelly illustrate, there are no guarantees in this life.

I have gotten into the habit of reminding myself before bed of what I do have. Among other things, this practice helps to calm the anxieties that cause my insomnia, and allows me a more peaceful transition to sleep.

I remind myself that I have my health.
My husband.
My family.
My friends.
A house to keep me warm.
Food to fill my belly.
A dog who has brought great joy into my life.
A love for writing.
A bed to sleep in.

You get the picture.

I know this may seem a bit odd, especially coming from someone who wrote in her last post that her life is ruined, and believe me when I say that that feeling is genuine, but even I, the girl with the dead kid and blocked tubes, have to remind myself that while my life may feel ruined, while it may feel at my core as if it has been broken beyond repair, I don't know that yet.

My story has not yet been told in its entirety, and I have to believe, even if believing means pushing through indescribable pain and heartache, that there is a possibility things will get better. The opportunity to live each day with the above blessings is proof of that.

Most of you who read here have lost a child, or loved one, or your fertility. You fight your own daily battles, and struggle through your own dark places.

Life, as we have learned, is not fair. Or easy. Or just.
It is just life.

We have each lost so much, far more than any person should have to endure losing, but I guess my point is that we haven't lost everything.

Each time we wake to see another day, draw another breath into our lungs, or allow a sense of love into our hearts; each time we find enough strength within ourselves to laugh through our tears, or feel that we are in the presence of a message or sign from our children; each time we recognize something beautiful in our surroundings, or feel some measure of peace in our souls, no matter how short lived those peaceful moments may be, we have to remind ourselves that in this broken world of no guarantees, each of these moments is a gift not be overlooked or taken for granted, but instead to be celebrated.

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.

On Karma...

"Lots of people want to ride the limo with you, but a true friend will take the bus with you when the limo breaks down."-Oprah

"My Karma ran over your Dogma."-Unknown

***

*A little disclaimer

This post talks about Karma and self blame. Please don't think, in reading this, that I think any of you are to blame for your losses, or that Karma played a role, I am just trying to be truthful here about what has been going through my own mind.

***

Up until September 4, 2008, my life had been a fairly typical one, a mix of good times, and not so good times, that always seemed to find a way to continue on in an upward trend.

Here is my life... in a nutshell.

I was a very happy little kid, and a pretty happy teenager. I was captain of cheerleading, nine times out of ten my grades landed me on the honor roll, and teachers usually commented that I was "very bright, but far too social" in my classes. When I went to college, I went through a really bad breakup with a person who was NOT good for me, and while at the time I thought it was the end of the world, later I realized that freedom from that type of a relationship would be one of the greatest gifts I have ever been given. My freshman year of college I got really sick with a throat infection that landed me in the hospital, and had me sidelined for the better part of my first semester, and when I came through that I went through this completely obnoxious phase of feeling invincible, and responded with a little period of rebellion that to this day makes me do a mental head slap, but for the most part wasn't outside the norm of what most kids do at one point or another. A year later I found a sense of direction, and went on to meet my husband, enjoy the start of a very successful career, and make plans to start a family... you know the rest.

I always felt peace with every part of my life (even my mistakes because I had learned from them) and if I had to do all over again, I always said I wouldn't change a thing, because it had been this succession of actions (both the right ones and the wrong ones) which led me to the exact moment of meeting my husband nearly nine years ago, and in the end, finding this amazing person to spend my life with was all that mattered. 

There is a saying about looking at life through rose colored glasses, and I think that is what I used to do, but my ability for that seems to be another victim of this loss, and when I look back now, everything seems tainted by self blame. 

Lately I can't focus on anything that represents my having any good qualities, like moments where I made someone feel loved, or proved myself to be a good friend. When I flip through scenes in my life, all I can see are moments that I might feel regret or shame over, moments where my morals and priorities were misguided, or I had been difficult or a disappointment to those who loved me, and I play through these moments wondering which one of them exactly it was that landed Karma's foot up my ass. There are idiotic moments that I used to joke about looking back on later in life, moments of being carefree and stupid that I thought would bring laughter when my life got too over-scheduled and boring. Now when I think about them I just feel dread and worry that maybe it was one of these moments that has come back to haunt me.

I am a woman.

I should have made a healthy baby.

I should be able to get pregnant.

I have failed in all these things.

Clearly I am to blame. 

When in this rut, nothing is off the table for scrutiny. Not even my accomplishments. 

I was always successful at work... is this a penance for being too cocky? 

I wanted a nice house in a nice neighborhood, one that I could be proud of... am I paying for misguided priorities?

I like to think I have always treated people with respect... is there someone from my past who feels wronged by me? 

I think you can see where this is going...

I can be very hard on myself. Brutally so. Since losing Peyton, I see myself only in the harshest light. It is a trait that my husband blames on my "Catholic guilt." I feel like maybe I have no right to happiness. Maybe Karma has deemed me not good enough. 

Yesterday I got to going down the self blame road, when something suddenly called me in a different direction. It was a conversation with a friend, an amazing loving friend, where we didn't talk about anything in particular, and yet I couldn't help feeling an appreciation for all I do have.

I have kind hearted, loving, and supportive people in my life. Some of them I have known since I was a little kid, others I met when I was in college, or during work, or fall into this newer category of people that I have connected or reconnected with because of this loss. Their commitment to me has been unyielding, and it got me to thinking... would these people who I love and admire really put in the effort to stick around me if I were really such a terrible person? 

Probably not.

The idea of Karma can be a really slippery slope. It can lead us to the darkest recesses of our minds, and make a journey that is already painfully self doubting, even worse. If Karma really existed, there wouldn't be a saying like "nice guys finish last." The truth of the matter is that some of the meanest and most judgmental people out there are also those who have never had to be tested, and some of the least deserving people, find success with the most ease. Clearly, there is no Karma in that.

Don't get me wrong, I totally believe in the golden rule of doing unto others as you would have them do unto you, but I also think that maybe I need to work on accepting the possibility that this hasn't been "done unto me" as a result of anything I have done. Maybe it has just been a run of really shitty luck that happened to someone who, like everyone else, has made some mistakes or had moments that she isn't particularly proud of, but in general, tries to be a good person.

Maybe it's time I give this person-myself, a break.

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.

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. 

What can I say???

BFN.

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?

He's Baaaaaack!

I don't even know what to say except that I am furious.

The asshat that I talked about here, and here, is back.

Yesterday I went up to see Peyton with my cousin and discovered little souvenirs that his dog had left around her grave. I didn't have anything on me to clean it up with, so I headed back up there early this morning with bags in tow. What I found broke my heart. There was enough dog waste around Peyton's little grave to fill three plastic doggie pickup bags.

I looked around at the other graves and found nothing. It's like he walked it over to her spot and placed it himself.

What kind of a person can do something like that to a little baby's grave? As you all know, I have already gone to the police. I don't know where else to turn because they can't have someone stationed there 24/7.

I really don't need this...

The Waiting Game.

Last night I had a dream that I had another c-section. I don't know what the outcome was, but I imagine not so good because I woke up panicked, grabbing at my stomach. It was devastating.  I imagine the events and conversations from last week didn't help matters.

By Wednesday when I still hadn't heard from my Doc, who we will call Dr. X. I called and spoke to a receptionist. I told her I needed to speak with Dr. X about my test results and where to go from here. She gave me some line about the test not having been sent over yet from the Hospital. This struck me as odd since the test was done in the hospital where Dr. X works. I said, "They already told me the results, they told me that an infection destroyed my tubes." Her reaction, "Oh, they did?" Me, "Yes, they did. I need to know what my next steps are." She told me she would call me back, and when she did it was to tell me to try to reach Dr. X or her secretary the next day. I don't know the last time I felt so much like I was getting the run around.

On Thursday I called again, asked for Dr. X, and was put through to her direct secretary. "Dr. X says not to worry too much. That it might have been just a muscle spasm." I explained to her that during the test, the two Doctors performing the test had completely ruled out the possibility of muscle spasm. "Oh... they told you that?" Was all she could say. "Yes, they told me that."

I was so upset. Don't these people know what holding out hope for something like a muscle spasm could do to a person?

I saw the look in the Doctor's eyes when she gave me the news after performing the HSG. She saw me collapse and cry, she saw how desperate and upset I was. No doctor would let a person leave the hospital in that condition over a f*cking muscle spasm!

The secretary went on to say, "Dr. X wants your husband to complete the sperm test and we will go from there, maybe referring you on to a specialist."  I asked her what the point would be in having my husband spend $300 to shoot in a cup, when we know the issue is with me. Not for nothing but my husband has gotten me pregnant twice (the miscarriage, and Peyton) both on the first try. If all my tests had come back normal I might have more seriously questioned his little swimmers, but seeing as how we got the results that we got, it seemed an awful waste of $300, not to mention delaying us moving forward towards finding a solution for my scarred/blocked tube situation.

"As for her referral," I said, "I already made an appointment for next week with the Fertility Specialist." "Oh, okay, good." She said. "Well than I don't think you will have to see Dr. X at all. Call me tomorrow with the Fertility Specialist's fax number, and I will send your records right over."

That night I was very hesitant to share with hubs my phone conversation. "There is something I have to tell you," I said, "Dr. X said maybe I was in spasm and that's why the results showed the way they did. I didn't want to tell you this because I don't want your hopes up for nothing. I was in that room. I heard the two Doctors talking about muscle spasms, and then finally ruling it out. I don't know why she would even say this." He said he wouldn't get his hopes up, but I could see in his eyes that he did.

Friday I called with the fax number for the Fertility Specialist and spoke with Dr. X's direct secretary again. "I'm sorry," she said, "I spoke with Dr. X and she said you were right. It definitely was not a muscle spasm. She doesn't want you to think she's slacking its just she hadn't had a chance to really discuss the results with the Doctors who performed the test yet."


Hadn't had the chance? It had been nearly two weeks!

I was so angry. Where was the sense of urgency?


Dr. X once told me that I was the only patient she had ever had carry a baby to term and then lose in infancy. It really hurt me that after all the pain that she has seen losing Peyton cause for myself and my husband, after having witnessed the aftermath of something like that, that she couldn't pick up the phone and be straight with me about what was going on. On the day of the HSG I was told that Dr. X would call me the next day to discuss. To this day, I still haven't heard from her.

Hubs and I go to meet with the Fertility Specialist this Friday, to see what, if anything, can be done. It sounds like the first step is to perform a surgery through my belly button to assess the scarring. Some people with slight scarring have minimal and/or short term success with a roto-rooter, for lack of a better word, type surgery. There are increased risks of ectopic pregnancy, and a slew of other issues involved, but that may be one possibility.

From what I have read, and based on what had been told to me during the HSG, it sounds like IVF would likely be proposed as the only option. I think the roto-rooter thing also checks to make sure my eggs haven't been affected by the infection too. Lets keep our fingers crossed on that one big time.

All of this is speculation of course, since I haven't been afforded the luxury of speaking with any Doctors since my HSG.

Two nights ago, I was standing at the counter sort of spacing out, totally lost in thought. Hubs asked what I was thinking about, "Oh, nothing" I said. But that wasn't true, I just couldn't bare to tell him.

It was like I was frozen, overwhelmed by images and memories of all that has happened in these first few years of our marriage. I could see myself, how it used to feel to be hopeful. How happy I once was. Not in the "put a smile on for the benefit of others" way that I have become so accustomed to, but really, truly happy. We had had all these plans. We were gonna have a big family. What happened to us?

Sometimes I feel so weighed down by all of the grief, sadness, and disappointment of these last 16 months. I used to really be on track. The future used to feel so bright. Now I feel like a walking tragedy, a one trick pony, a broken record. I just don't know how I can heal, or move forward with my life, if I remain stuck in a place full of sorrow and loss.

Please, please keep us in your prayers for there to be some hope, some door or window for us to find that has been left open. Please pray that we can do what we set out to do some two and a half years, and two pregnancies ago. Please pray that we can have a healthy family.

*** A few side notes.***

1) Thank you to all who prayed for my cousin's baby Faith Margaret through her last open heart surgery and hospitalization. I saw Faith last week, and she is doing amazingly well. I know all those positive vibes you sent her way did the trick.

2) Thank you to all who sent their email information for the writer doing the story on this blog. I forwarded all of your info directly to him. I am not sure how many people he is going to be speaking with directly, but know a few of you have already heard from him. The outpouring was amazing, and he has informed me that he has enough people now for his story, so thank you very much.

Kicked While I Am Down

"Do you feel emotionally ready for this?"

My doctor posed this question this morning, and all I could do was look at her, mouth agape, unable to answer.

There is no denying it. I am an emotional mess. I have been since Peyton died. I am grieving and suffering from PTSD. I anger easily, feel overwhelmed at the drop of a hat, and carry massive amounts of guilt at not only being unable to save my child, but having had to witness all that was done to her for nothing. The pain of watching your child die does not end with their last breath, it begins.

Each day the waves of this new reality hit harder and harder and I feel the possibility of having a family of our own slipping further and further away. In the two years since we started TTC, we have hit two major hurdles: The loss of our first pregnancy for reasons unknown to miscarriage, and the loss of our child, our daughter Peyton, to infant leukemia. This morning I was dealt another blow, one which was anticipated, and yet still hurt like hell to hear... we are definitely dealing with an infertility issue now.

My doctor has explained that this new road, the one she wonders if I am emotionally prepared to handle, is one full of testing, stress, disappointment, hormonal changes, injections, procedures, emotional highs and lows etc. etc., all of which compound the emotions that I have been dealing with since losing Peyton. I have cried so many tears today, my heart is aching, and my fingers feel exhausted even now as I type this. It's not that I didn't think I was infertile... I have blogged about my concerns about this here and here. I think it was just hearing my doctor explain that after five months of TTC, she feels we are no longer in a place where doing this on our own is a likely possibility. Am I emotionally ready for this? Probably not. Am I emotionally ready to never again have another child? Definitely not. Therein lies the conundrum.

Today I threw a question up to God that I have so many times before... "how the hell did this happen to my life?" I actually threw it up to Him through tears after coming out of the supermarket where I saw a magazine cover with a headline that Brangelina are expecting two more. Two MORE... really... are you F*ing kidding me? I don't know why seeing that magazine brought so many tears, maybe it was just another reminder that what comes so easily to others, may never come for us. I wish I could say that I could make peace with this new reality... I cannot.

Next month we begin new tests based on these, my doctor's theories, as to why I cannot manage a BFP.

A) By rushing out of bed 30 hours after a c-section to be at Peyton's side, and allowing no time to heal, my uterus and/or tubes may have suffered scarring or damage and that is why my cycle has disappeared. A dye test will be done to determine the extent of the damage, if any, that is keeping me from becoming pregnant. I am especially angered at this theory... at the bitter irony that in trying to be a good mother and pushing myself to be with my fatally ill child, I may have cost myself future pregnancies. There are no words for the emotions that I feel when considering this possibility.

B) I am no longer ovulating or getting AF on my own because of the stress/grief/just because/etc etc any of the million and one reasons that can lead to SIF. Should the aforementioned dye test come back negative (prayers on this please) we will begin clomid and provera next month. This too brings a lot of emotions, primarily disappointment with myself when thinking about the theory that the stress and grieving has been causing my problem. The implication I draw being that I am in some way contributing to my own infertility. I know of a lot of women in this community hurting just as badly as I am, grieving just as hard and missing their babies just as much, and they have gone on to get pregnant or have other babies. What is wrong with me? The sense of failure that this theory brings is overwhelming.

C)Hubs counts have changed... I am not really giving any thought to this option because I don't feel that its the case. I don't know why I feel so sure about this, I just do. Nothing has changed for him physically and he has been coping much better since losing Peyton than I have, so I don't believe it is a problem on his end. Some tests will be run just to rule this out.


My doctor set an appointment for next month (a few days after we meet with a genetic counselor to see if there was any possible genetic cause for Peyton's cancer) to speak with me and hubs. She explained that IF can really tax a marriage, and that she is concerned about what it could mean for a couple already having been dealt such a blow. I am so tired of this, of these boulders in the pathway of our happiness. They say "God doesn't give you more than you can handle," and you know what, that's bullshit. Child loss and SIF. That is more than anyone can handle.

Time to Vent

I have decided to try something new...

I don't really know who is reading this blog, but I figure that those who do come here are probably on their own journey through loss (child loss, infant loss, miscarriage, infertility, loss of loved one etc etc). In an effort to find comfort in knowing that I/you/we are not alone in our feelings when the wrong words are said, I have decided to start a comments post on this topic. We will see how it goes, and maybe do this on other topics in the future.

I have written a few times about platitudes (everything happens for a reason etc) and other hurtful comments and just simply stupid things that people have said to me since Peyton died. Sometimes people say things and you smile politely knowing that they couldn't possibly have meant to hurt you with their words, other times they send you through the roof with their callous stupidity. This post is intended to offer you the opportunity to respond the way you wish you had at the time.

Here is how this will work.

Click the Comments below this post.

Choose to Comment Anonymously if you like.

Vent

Here I will go first:

To the person that wrote to me asking what I had done to give my daughter cancer so that they could make sure not to do the same in their own pregnancy... how dare you! Are you really that stupid? I will tell you what I did. I ate organic foods. I exercised five days a week until my ninth month. I was a fanatic about prenatal care. Can you, with your pointed finger and stupid questions say that you did the same? And yet, you were blessed with healthy children. Are you really so self centered that you didn't know that this question would linger in my mind? Do you not think that I have spent every second of every day scrutinizing why and how this could happen to Peyton, to us? You, with little effort, have beautiful healthy children. Maybe you should be spending less time slinging blame and accusations at me, and more time thanking whatever God you pray to for your good fortune.

9 Months In Womb, 9 Months In Tomb

How ironic that I should no sooner post my writing on feeling numb, on having lost my tears, on my disconnect from emotion this morning, to only be sent back to that bitter sobbing abyss this afternoon. I don't know what brought it on, perhaps the fact that today marks nine months. Nine months, a time frame that should signify life, a beginning, not death. Nine months in womb, nine months in tomb. I went for my daily visit with Peyton today, told her about the grayness of the skies and the beauty of a hawk flying overhead, when the emotions that have been threatening through exhaustion these past weeks to show themselves came overflowing. The tears, the heaving, the "why God, why me, why her!" came fast and hard along with these words...

Below this ground, six feet away,

there is a white box, now her tomb.

Below this ground, she surrounded lays,

with love letters & charms & toys.

Below this ground, atop her head,

the hat Nana Nina made with the green pom.

Below this ground, she is swaddled tight,

by a checkered blanket & christening gown.

Below this ground, her right hand is at her mouth,

the way she held it to bring comfort in life.

Below this ground, she lies so near,

and yet too far from her mother's touch.

Below this ground, you'll find her there,

beneath the dark, the dirt, the rock.

Below this ground, a life unlived,

my only child Peyton,

my heart.

~Kristin Binder

"Moving On"

Over the last several months, many well intentioned people in my life have told me that it is time to move on. I always wonder when people say this to me what reaction they’re anticipating, usually imagining that they expect it to be something along the lines of:

“Hmmmm… you’re right, move on huh?

I never even thought of that.

 Gee thanks! I’ll give that a try!”

Okay, so that was sarcastic and uncalled for, I know. The fact of the matter is that those who are grieving don’t choose how quickly they heal. Actually, there is no part of grief that is by choice. 


I didn’t choose to have a child born terminally ill. 
I didn’t choose to fall in love with her, to let her huge spirit envelop me and to believe in her ability to beat this. 
I didn’t choose to be put into the impossible role of decision maker when it came to treatment plans. 
I didn’t choose to feel a part of me die right along with her. 
I didn’t choose any of these things anymore than I can choose how long it takes my heart, mind and soul to mend. 


I, like any other sane human being, would like nothing more than to be surrounded by joy. To see my dreams realized and feel the warmth of happiness. To have children and watch them grow. Believe me when I say that I wanted those things yesterday, and the week before that, and the months before that - it is getting my soul to sync up with my desires that is proving to be such difficult and taxing work.

One of the things that most people don’t realize about grief is how incredibly exhausting of a process it is. I have been in this fight, for lack of a better word, for over seven months, on the heels of forty two weeks of pregnancy, an emergency c-section with no time allowed for healing, and twenty eight days of round the clock panic and life and death decision making. It takes time to recover from this. How long? That is for God to decide, even I don’t know. What I do know is that each morning I wake up and offer whatever my best is for that day. Some days I even surprise myself. On others I come up short. 


Each day I try to honor my child, my husband, my family and myself while looking towards the future, but sometimes, in trying to accomplish even a fraction of what I set out to do, my energy is sucked dry. Missing someone is tiresome. There is no rhyme or reason to the ebb and flow of emotions that the bereaved feel: sadness, anger, hopefulness followed closely thereafter by hopelessness, guilt, dismay; but one constant in the process is just how endless the cycle can seem.

For months I have been hearing about this magic pill, this “cure” called moving on. I have been trying to figure out exactly what moving on means, how to utilize moving on, and where I should be moving on to? To me, moving on implies leaving something behind, and leaving any of Peyton behind, even the painful parts, is not an option. I am sure it seems simple enough to those who say it - those who don’t know the feeling of tumbling unexpectedly from the top of the world - don’t know what it is to look in the mirror and no longer recognize yourself - don’t know what it is to try to rub away the lasting empty pain that only a bereaved parent can feel in their arms, but for me, there is no moving on. 

There will never be a day when this loss is not ingrained in me, never be a time when Peyton is not my first born child, or when her absence from our everyday lives isn't felt. I cannot move on, as so many have suggested, I can only move with. And for now, that is what I am exhaustingly working towards - trying to find a way to live this life, to find joy in it once again and to see our dreams fulfilled with Peyton. 
With the memory of her.
With that little spirit.
With her unguarded love.
And even with the unrelenting pain of her loss.