Friday, April 30, 2010

Art Therapy

Do you remember when you were little, and you would play the "what do you want to be when you grow up?" game?

What did you want to be?

I wanted to be a comedian at one point. And a truck driver. A war correspondent. A writer. To me these were all things to strive for.

Now, I just want to be normal.

I want to be that mom who gets to complain that she has been up all night because of the baby, and not because she can't forget the way the baby died. I want to live in a world where spending the day with my child means laughter and playtime, not tears and a worn patch of grass. I just want to be what I always took for granted that I would be, a normal, happy, mom.

I was thinking about this the other day when I happened across this blog. Ironically, it was on the same day that I wrote my angry little post about facebook rubbing in just how far outside of normal that I am.

The blog is written by a BLM named Rachel, whose daughter Lyra was lost at 30 weeks to placental abruption this past December. As a means of processing her grief, Rachel has made a commitment to expressing herself creatively every day.

I am no artist. For me, having to draw a stick figure is a bit of a stretch, so to stumble across a blog like Rachel's, and see what I am feeling expressed so beautifully through art in a manner that I, myself, could never dream of expressing it, really spoke to me.

There were two pieces in particular that struck a chord with me. The first was this one titled "Left Behind."

For me, this piece really highlights the way that we babylost parents are made to feel like outsiders. When your child first dies, you are surrounded by crowds of family and friends who want to do everything they can to help. Masses of people call and send flowers. Folks come to be with you at the funeral, and hold your hand as your child is lowered into the ground. Then, just as quickly as the crowds appeared, they begin to drift away and resume life as usual, and you are stuck on pause, alone, staring at a mound of dirt and a plaque that used to be your child.

Grief (and infertility for that matter) makes it feel like the sun shines with ease on everyone but you. The world goes on but you can't. When you have been left behind in the world of babyloss, a black cloud seems to follow you wherever you go with reminders of what you no longer, and will never, have. Then, more than ever, you just wish that you could be normal.

For those who are normal, a visit to your side of the universe is a temporary, heartbreaking event. For those who are normal, it's possible to walk away from having witnessed something as tragic as a baby funeral, and to not look back. Their compassion is genuine, but the loss is not their's. They have the choice to go on holding their children. They can distance themselves from babyloss. They can do all of the things that those of us who have been left behind, cannot.

The second piece that really resonated with me was this one, called "The Weight Of It All."

I can relate to this figure, slumped over, trudging through that black cloud, wearing her grief like a heavy cloak that has been sewn into her being. It has changed her. Morphed her. Grown into her. This figure can never remove the weight that her grief has placed over her, and as hard as I try, neither can I.

What struck me first was how central the themes of loneliness and failure were to the piece, and how large a portion of Lyra's mommy's grief revolved around these feelings.

Justified or not, the sense of failure is something that weighs many of us in the loss/infertility world down, and with those feelings comes a greater sense of loneliness.

Whether due to self isolation, or feeling left behind by others, loneliness and failure can be two of the heaviest burdens of grief. When I lost Peyton the sense of failure overwhelmed me. I had failed to bring a healthy child into this world. I had failed to save her life. Once infertility was added to the mix, my sense of failure mushroomed. Not only had I lost my first child, I had failed to create a second.

Seeing this piece offered me some validation for how I was feeling, that even though what I am going through might not be normal by society's standards, for those of us living through these very abnormal circumstances, they are.

Thank you Rachel, for allowing me to discuss what I drew from these pieces, and for expressing yourself in such a profound and relatable way.

***Side Note***
The pieces above are copyrighted material. I was granted permission by the artist to re-post them here. If you would like to re-post or copy them, please contact the artist first for permission. Thanks :)

Thursday, April 29, 2010

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.

Monday, April 26, 2010

Surviving The Thaw


Many of you have written asking about our next steps, and I wish I had more to report, but unfortunately, right now we are in a bit of a holding pattern.

I guess I should be used to this right?

Our next IVF attempt will be at transferring two of the four embryos frozen from last month's cycle. The doctor tells me that approximately 80 percent of frozen embryos thaw successfully, so hopefully this means that at least three (if not all four) of them will survive. 

Our greatest hope, of course, is that this next cycle works and we get pregnant, and then in a few years we go back and transfer the remaining embryos to complete our family. That being said, we are being a little more emotionally cautious this time around, or trying to be at least, because we know all too well the price of getting our hopes up.

The good news is that we have the embryos and can try again. The bad news is that doing a frozen cycle delays us even further. The drugs for this cycle are intended to do the opposite (suppress my cycle) of last month's drugs, and because of that, are on a completely different timeline. I will start taking Lupron on the 21st day of this cycle, and then continue it for 18 days. This unfortunately means that our next shot at a transfer won't be until mid June.


More waiting.

This is the point where I am going to whine for a minute.

Let me just say, for the record, that it really sucks to go from:
"well, no babies for us in 2009, but at least there is 2010." 
"we are infertile so a baby in 2010 is unlikely but possible." 
"our only chance at a baby in 2010 is end of December if this cycle works."
to where we are now:
"if this works, maybe a baby mid 2011." 

It's like the carrot of parenthood that has been dangling in front of our faces the last few years seems to be getting further and further out of view with each step we take towards it, and watching the months and years tick away just adds to the frustration.

I think about how this journey started in 2007, and while I know that trying to control the uncontrollable doesn't do me any good, I am human, and overwhelmed, and it just happens. 

A few people wrote last week (here and in emails to me) that maybe I should get that a baby is not in God's plan for me, or that they believe I can't get pregnant because my grief and inability to get over it has hardened me too much. I like to give people the benefit of the doubt and believe that their words are coming from what they feel to be a good and helpful place, but sometimes those comments just feel really unfair and full of blame. 

I wish life was that cut and dry for me, but the reality of my situation is that even if I skipped down the street, handing out balloons and whistling dixie all day, my tubes would still be scarred from bottom to top, and getting pregnant without a great deal of difficulty and medical intervention is just-not-possible.

I understand and respect that everyone is entitled to their own opinion, but also think that to say those things when fertility has not been an issue for you, and you have your own children at home to love and mother, just feels awfully judgmental to me. The truth of the matter is that the only thing that separates my situation from that of the person saying these things is a little bit of bad luck. 

As far as wanting to go ahead with trying to get pregnant and have more children, I cannot (and will not) apologize. Why shouldn't I want them? Am I, for some reason, no longer entitled to be a mother because my husband and I were dealt the shitty hands of child loss and infertility? Have these last few painful years, for some reason, negated our right to want what seems to come so easily to others? To want what we envisioned in our life together- a family of our own? Is that the message we should be sending, if you are dealt a tough hand, give up?

Would I be more entitled to have another child if I had moved right on from Peyton? Would that honestly have made me a better mother - forgetting all that she went through, or acting as if she was never born?

Last week, a man learning through a friend of my loss implied that I should count myself lucky that losing Peyton wasn't a true tragedy  like losing a child that I had known for ten or fifteen years would have been.

Excuse me?

Is that when we are expected to start loving our children, only after they have been here ten or fifteen years? Why hold them as infants? Why even bother with their young childhood?

I think this is a sad stigma, and one that is sort of unique to the babylost community, that there is this segment of society who believe that just because our children were here for such a short time we should get over them more easily, or feel that their lives were somehow less significant just because they were cut so short. 

I know that this is only my opinion, but it is my belief that whether an embryo, a fetus, an infant, a child, a teenager, an adult, or a senior citizen, these are all stages of human life, and no stage is any more or any less important or deserving of respect than the next. I didn't love Peyton less at 28 days, than I would have at 29 days, and I don't count myself lucky that at least I lost her so young as others have implied that I should, nor will I ever get over her just because she was little, and weak, and dealt a lousy hand at only having a month here on earth with us.

Peyton was my child, and is my child, and loving, mothering, and missing her immensely, is not something I will ever apologize for, not in real life, and certainly not here, and if that makes someone uncomfortable - tough.

There is no way for me to know what the future holds in terms of our family building. I don't know if this next round of IVF will be a success, or the round after that. I don't know if we will adopt, or have children, or both. Very few answers have been easy to come by these last few years, but what I do know is that my daughter is gone and I miss her like hell and grieve her everyday and none of that makes me any less deserving of being a mother again, even though my grief takes me there sometimes.

Since September 3rd, 2008, Hubs and I have been sort of frozen in time, stuck on pause just crying out to press play and move forward. We want to do what we set out to do when we left for the hospital that day. We want to do what we expected we would do - to come home with a baby, to start our family life, and watch our children grow.

Peyton's passing, and our subsequent battle with infertility, have spun us around. We have been cooled to the core and left to sit and wait on the rack, and while there are days when seeing other couples moving on and creating families with ease may make it seem that this frozen place is forever, we have to remind ourselves that anything is possible. We have to believe that we, like our little embryos, will survive the thaw, and once we have, something beautiful will be born.

Thursday, April 22, 2010

No More Miss Mopey Schmopey... well not today...

Okay, so like I said in yesterday's post, each day I write my truth, and today my truth is that I don't feel like being a Miss Mopey Schmopey because I took a look outside and saw so many beautiful changes happening, changes that I sometimes lose sight of when I am being Miss Mopey Schmopey, and  those changes are what I want to focus on today. Will Miss Mopey Schmopey return tomorrow? I'm not sure. But as for right now, she's taken the day off.

Spring has sprung into full swing here. The trees off my deck are starting to bloom...

And even Charlotte is really enjoying the sunlight... although her idea of enjoying the sunlight is to lay in the brightest spot of the deck, overheat, come in, drink some water, pant against the cool floor, then go back out and repeat. I don't know that it would be my idea of fun, but hey... who am I to judge?

Something that really struck me was the transformation of the area around our mailbox. Last year I had written about it being just overrun with weeds and neglected, like a beacon to all our neighbors that we had stopped living. I wrote about it in a past post called, "Another Manifestation of My Grief, AKA How I Let My Gardens Go To Pot."

Last year it had looked like this...

And after much hard work had come to look like this...

**Disregard the date...I don't know how to fix that on my camera

I didn't think about the garden much after that. The fall came, then the winter with its cold days and nights, but today I noticed, like really noticed, that the sporadic plantings of last fall have grown into something beautiful.

This is how that area looks today....

I guess it just goes to show that even when we feel like nothing is changing, even when we feel like each day is exactly the same as the last and that there hasn't been any forward momentum or growth, there has been. And that is something to be celebrated.

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.

Monday, April 19, 2010

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.

Sunday, April 18, 2010

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. 

Tuesday, April 13, 2010

Greetings From Inside My Cocoon

Last Thursday, I attended my second monthly grieving mother's group, and just as I had at the close of the first meeting, I felt grateful for having found it. As many of you know, this group isn't the first that I have tried to attend - I went to one early on that was an epic fail of tears and anger - but this group gives me a sense of hope, and so I continue going back. It is also a faith based group, and my faith is totally rocked right now, so I think that it is good for me to be around other women who have had their faith shaken to the core and gotten through it.

Sometimes it feels like the universe takes me by the hand, and leads me to certain people from whom I can learn. As I was preparing to leave the house Thursday, I suddenly felt compelled to wear the sea glass necklace that Hubs had bought me last year. I thought this odd, since I hadn't worn it in months, and when I got there, was floored by the irony of this action - the theme of the group was reinvention after loss, and to illustrate these changes, the group leaders held up marbles and sea glass.

Their interpretation of sea glass was different than mine, but I couldn't help but think about how fitting it was that the universe had brought me to sit among this group of women, talking about how I had left my life of medical sales after Peyton's death, and reinvented myself as a writer - and even more oddly, how one of the first pieces that I had written about grief, was a piece comparing my journey to that of sea glass.

As the night progressed, I thought a lot about reinvention, and grief, and this journey, and my mind kept returning to the old Chinese proverb: "Just when the caterpillar thought the world was over, it became a butterfly."

I started wondering where I was in that chain, was I a caterpillar, or a butterfly, and decided that I am neither, but instead somewhere in the middle. One of the women came over to share with me the story of her loss - a son who had passed some 8 or 10 years ago, and asked how I was doing. I told her that I have my good days, but for the most part am still quite angry and bitter, and she said, "like the butterfly in the cocoon, your stage of thrashing about can't be rushed."

Have you ever been to a butterfly museum and seen big glorious butterflies sitting on the floor lame, unable to fly? Those beautiful creatures are destined to failure, because they have been let out of their cocoon too early. To become strong enough to fly, butterflies must be left alone to beat their wings against the inside of their cocoon to draw the strength they need for survival, and just like these butterflies, so do I.

I need to throw myself against the inside of my cocoon for as long as it takes. I need to beat my hands at its walls, and scream and be angry. I was wronged! My child was born with cancer - I was wronged! I watched her suffer - I was wronged! She died in my arms - I was wronged! I will never see her grow - I was wronged! I mother a grave -I was wronged!

I was wronged!
I was wronged!
I was wronged!

But I embrace it.

People have asked me time and time again, if I am "feeling better yet," or "have gotten over it." and the answer is "no", and that is okay. Someday I will get to that place, where I shed my cocoon and fly free of the pain of all that happened to her. Someday I will flutter through the air, and others in passing will only see my beautiful colors, and comment on my grace, without knowing of the struggle it took to get me there. Someday I will be that butterfly, who as a caterpillar thought her world was over without believing that a beautiful life still lay ahead of her.

Someday I will be all those things, but first the hard work must be done. First I need to be left to thrash about. First I need to build strength in my wings against the walls grief has built around me. First I must work through the pain of child loss and infertility. First I must do all these things. These are the steps that will help me survive this journey.

I don't mind being stuck in my cocoon. I am used to it now, and know that coming out too quickly would put to waste all of the growing I have done this last year and a half. Coming out too quickly, for the benefit of others, would destine me to a life of looking pretty on the outside, but feeling too weak inside to ever truly lift myself off the floor.

I don't mind my time in the cocoon. It is what is owed to me.

**An IVF update.**
No news is good news right? I have been going back and forth with my symptoms, some days worse than others with OHSS. I find that if I can lay on the couch like a lump and guzzle Gatorade, they get better. When I venture out, they get worse. Sometimes I hate when they get better, because OHSS is so closely tied with HCG. The doctor has lifted some of my restrictions. I am now allowed a "short stroll" each day, and I am grateful for it because the weather is beautiful, and I was getting so bored.

I have been having a lot of pregnancy symptoms - extremely heightened sense of smell, exhaustion, tender gums, mild cramps, did I mention EXHAUSTION?- but I don't know which of these symptoms are due to the progesterone, and which are real. Two more days, and all this wondering will be put to rest, I just pray that the wondering becomes celebrating and planning... until then... I wait.

Thursday, April 8, 2010

Slowly but Surely

Have you heard about the hottest fashion trend this Spring?
Permanent red Gatorade mustaches. 
Not convinced? 

In the last two days alone, I have pounded down about 4 gallons of Gatorade and Smart Water, eaten the saltiest of salty things, and sat around, for the most part, like a lump, and you know what? I think it is working!

The painful pressure feels a little lighter on my chest and back today, and I know I am jumping the gun in thinking this means I have begun taking a turn for the better, because I always feel best in the morning, but at this point, I will celebrate any relief that comes my way.

I spoke with my RE yesterday, who said that with the exception of my white blood cell count being a little high, my blood work looks good. Of course, a high WBC count is a total trigger for me, having lost Peyton to Leukemia, so news that should have been no big deal for me, sent me through a tail spin of fear and what ifs. I told the doctor about my fears, and he assured me that just two weeks ago my numbers were totally normal, and that he is sure this is from the stress that having grossly oversized ovaries is putting on my body. 

I hate triggers, and after a traumatic loss, so many things, even unexpected things, can be triggers. I talked about this with my therapist yesterday, about how much I hate that the simplest things can cause utter panic in my heart. It's like any sense of security flew out that window with Peyton's soul. I'd like to go back to that place, that happy naive, innocent place, but then I realize that after all that we have been through, I don't think we would be welcome back there anyway.

My RE instructed me to continue resting, and said that I still can't exercise :( but that I can take a "little stroll here or there." Last night I "strolled" with hubs into Walmart for more Gatorade, my first time out of the house since Sunday, except for my doctors appointment, and this morning, I took Charlotte for a little pee walk, although honestly now I am totally wiped out so that might be all my "strolling" today.

On the brighter side of things, I am having a few "symptoms." I don't know if they are brought on just by the progesterone or what, but I had taken progesterone to bring this cycle on, and never experienced them then. My chest has a kind of tugging ache when I move too fast, and EVERYTHING, good or bad, smells really strongly to me. I know it is still too early to tell, but I guess feeling something is better than feeling nothing.

Either way, one week from today, we will know for sure.

**Side note... I have heard from a few women who want to spend International Babyloss Mother's Day Together on 5/2, here in the Connecticut Area. If there is anyone else who would like to join us, please email me at doinggoodinhername(at)gmail(dot)com.

Tuesday, April 6, 2010


Take a deep breath, and repeat after me:  

This too shall pass. 
This too shall pass. 
This too shall pass.

Do we believe it yet?

So it's confirmed. I have OHSS - Ovarian Hyper Stimulation Syndrome, a side effect of IVF that causes your overstimulated ovaries to become so engorged with fluid, that the fluid then gets poured out into your abdomen. Apparently refusing to look up OHSS on Google, and being in denial, does not actually protect you from developing it... who knew!

I am on day three of bed rest, and from what my doctor told me today, I have many, many more in my future. She wants me on the couch all day, with the exception of the occassional walk to the bathroom to keep me from getting a blood clot sitting around. She told me today that she believes that the pain I experienced after my transfer was probably one of my giganto ovaries twisting. "Lucky for me," she said, "it twisted back." If it hadn't, she explained, I would have needed surgery.

I am starting to feel like Murphy's law. Let's do the rundown, shall we?

Pregnancy #1 - Elation, followed by miscarriage.
Pregnancy #2 - Elation, followed by childbirth, followed by extreme traumatic loss of child to disease with 1 in 50 Million odds.
Infection leading to Infertility
Infertility requiring IVF
IVF leading to OHSS

Do you see where I am going with this?

I have some of the major risk factors of OHSS. I am young, and produced a huge number of follicles (over 60 per ovary.) The good news is that my little embryos, Emma and Emelio, will not be affected by this. The bad news is that my ovaries are now so large they can be felt ABOVE my belly button, and I am stretched in my stomach like I am 5 months along.

Wait, scratch that. I just checked out a picture of me at 5 months with Peyton, for comparison. Yes. I know. There is no makeup on, and my hair is undone in this pic, but I am posting it anyway.

(Hey, do you all like that hideous wallpaper in the background? Have no fears, that came down during my nesting period.)

So here I sit, typing this two days post transfer, and already I am much bigger than I was in this picture, and not in the cute little basketball way above, but more in an all over bloatey, gross and utterly uncomfortable way. No, don't worry. I won't be attaching any pictures of that.

Apparently there is no "cure" for OHSS, just various attempts at treatment. Well, that's a lie. There is one cure - Aunt Flow. If she comes, OHSS resolves on its own, but she *fingers crossed* is not coming to town, so onto plan number 2.

The doctors have put me on an extremely high salt, high protein diet, and have ordered me to drink Gatorade all day long. Sounds bizarre, I know. Apparently the salt and electrolytes from the food and Gatorade are meant to suck the extra fluid from my abdomen, and into my veins, so that it can be processed out of my body. I even get the joy of peeing into this little top hat looking thing that is now accessorizing my formerly boring bowl, and reporting my progress to some nurse each morning. Sorry... TMI?

If I am pregnant *sticky vibes*, the problem will actually get worse before it is better, and if both Emma and Emelio decide to stick around, the hormones of having a multiple pregnancy will have me floating down the street like a Macy's Parade Balloon. OHSS can, as my RE told me, last through the first trimester, correcting itself only once the HCG levels level off.

So now I wait, and hope for the best. If the fluid gets too high, my doc will have me admitted to the hospital for observation and my stomach drained. During today's exam, they saw blood and fluid in my abdomen (the blood most likely from the Egg Retrieval Surgery) but not enough fluid to warrant draining.

Let's all collectively pray that this gets better, or that I can at least control it with the bed rest and diet. They took a bunch of blood from me today, to get a firmer understanding of all that is going on, but told me my vitals look good, and that that is a good sign. Tomorrow I will get the blood results, and hopefully they will look fine too.

Until then, its soup and gatorade and salt licks for me, as I sit on my couch repeating this mantra over and over...

This too shall pass.

Monday, April 5, 2010

A bumpy ride but...They're In!

Sorry for the bit of a delay, this last few days has not gone quite as smoothly as I was hoping, and I haven't had the energy to write.

We got the fertilization report on Friday afternoon. 15 eggs were retrieved, 10 fertilized and of that 10, 6 were considered good quality (3/4 on the grading scale) by Sunday's transfer. 2 were set aside for implantation, 4 frozen, and 3 more are going to be allowed to go to day 5 to see if they reach a freeze-able state. Of the 10 fertilized, only 1 didn't make it.

I have been suffering from a great deal of cramping since Thursday's retrieval. My ovaries have grown very, very large (because of the hyperstimulation) to the point where I can feel them if I put my hand on my stomach. The discomfort before the transfer was sort of like a strong tugging type cramping, what came after was so much more than that.

I went in yesterday for the transfer with a full bladder as instructed. I was given the option of taking a Valium, and decided against it (though I later regretted it) and was changed into a gown and seated in a waiting area where we got to see a cute little picture of the two nine-cell embryos to be transferred. Hubs and I have dubbed them Emma and Emelio the Embryos. We said our goodbyes at the door, and I was taken into the operating/procedure room for the transfer.

They put me on an inclined table (butt above head) and inserted a catheter through which the little embryos were delivered to my uterus. This part wasn't really bad at all, except for the very full bladder which the nurse described as "huge" as she pushed on it with the ultrasound wand.

After the transfer, I had to remain on the inclined table for a half hour. About 5 minutes into it, what I thought was just my really full bladder started bothering me. I tried to meditate, and do breathing exercises, but it wasn't working. By 15 minutes I was in agony, and at 25 minutes they took me off the table. I asked if it was going to be a problem, letting me off 5 minutes early, and the nurse assured me that it wouldn't. I sort of hobbled over to the bathroom, hoping that by emptying my bladder I would feel relief, but even after going, I was in agony. It was like stabbing pains from my hips to my neck, and it seemed to be getting worse and worse by the moment.

The nurses assured me that this level of cramping was normal for someone with such hyperstimulated ovaries, and released me. They advised me to take Extra Strength Tylenol for the pain. Hubs got me in the car, drove to the nearest gas station, and bought me some rapid release Extra Strength Tylenol, which I couldn't get into my body fast enough, but relief just wasn't there.

Honestly, what I felt in that next hour was worse than the height of my labor pains with Peyton, and those were pretty awful (I had been induced with Pitocin and labored for 11 hours) but they at least came and went with contractions. This pain was non stop. Every bump in the road was like a knife going into me. One second into my abdomen, the next into my ovaries, the next into my chest. It was unbearable. I considered having Hubs turn the car around to take me back to the hospital, but the prospect of spending anymore time on the bumpy roads than I already had, was more than I could handle.

It felt as if all the laying inclined back the way I had after the transfer had pushed all the fluid of my whole body into my stomach and chest, and my ovaries were just throbbing. I really cannot emphasize how much pain I was feeling. Breathing made my shoulders hurt. I just had pain everywhere.

I usually have a fairly high tolerance for pain. Even after having just had a c-section with Peyton, I was able to work through the pain the next day to stand at her bedside for hours. Yesterday's pain was too much. It was unbearable and left me too exhausted to even cry. It was like I wanted to cry, I could feel that heat in my eyes, but all of my energy was being used to just keep breathing.

When he got me home, and on the couch, Hubs called the hospital from where we had just come, and spoke with the doctor on call. He explained that I was in a great deal of pain, and asked what I could do for it. She told him more Tylenol. He asked if a heating pad would be okay, and she said she didn't think it would help, but might "comfort" me, so it was okay to do. I hugged the pad, and for the most part placed it up high on my stomach near my ribs, because that was where I had the most pain, just praying that it would help the pain to subside a bit.

20 minutes of heat, and four extra strength Tylenol later, I could breathe again. Of course then I made the mistake of reading about heat and pregnancy (all bad of course) and I spent the next hour worrying that maybe I had screwed something up for the baby(ies) by using the heating pad. Sometimes I feel like no matter what I do I am doomed to somehow screw up any baby I carry... is that a loss thing?

The rest of the night went okay, except for my Progesterone shot, which really hurt like hell. I don't know if it was because of all that happened to my body that day, but it was the most painful of the Progesterone shots so far (this is day 3).

For the remainder of the night I took the Tylenol religiously, and even slept through the night (though I did have this really trippy dream about being a doctor and telling a patient that their child was going to turn into a carrot... don't ask. Must be the hormones.) Today I woke up feeling crampy again, but not as bad as yesterday. The doctor told me that the worst of my Ovarian Hyper Stimulation Syndrome symptoms should subside over the next week.

So hopefully little Emma and Emelio the Embryos will find my body a comfy place to be, and set up residence. It was really cool watching them go in. They were like two tiny white dots. I asked the RE why I could see them, when they are only the size of the head of a pin right now, and he told me that what I was seeing was the fluid they are in. I watched them sit against the side of my uterus, and said a little prayer to Peyton to please watch over these babies, and keep them healthy.

Before the transfer, all felt right in the world. It was as if the signs were coming in all around me. Yesterday at mass, the priest gave a homily about Easter being a time of "renewal and new life" and I thought, how fitting, that on a day that signifies new life, these two precious little embryos would be placed inside me. Then, before heading out for the transfer, I read an email from a beautiful friend who wrote:

We just watched "It's the Easter Beagle, Charlie Brown" to get us in the Easter spirit -- goofy, I know-- and there was a line, "spring is a time of renewal" that made me think of you. :) I think it's really awesome how the IVF lines up with Easter, being a time of rebirth and all.... hope this is the beginning of an incredibly bright future! 

So here is to Easter, and Spring, and renewal and rebirth. Here is to Emma and Emelio, who I pray 11 days from now, will be two beautiful little lines on a pregnancy test. If at the end of this all, I have my healthy rainbow baby(ies) to take home, there is no amount of cramping and pain that wouldn't be worth it.

Friday, April 2, 2010

Retrieval Update, Peyton, and IBMD Announcement

Today marks exactly 1 year and 6 months since we said goodbye to our little Peyton. 1 year and 6 months and nothing has ever felt "right" again. They say time heals, but what healing can come to the heart of a mother when her child's death has torn it in a way that is so profound and everlasting?

I find myself wondering... What would she be doing as a nineteen month old? What color would her hair be? Would her personality be outgoing, or shy, or both? Would she look like me at all?

1 year and 6 months have passed without her, and I could write a million sonnets and poems and posts here about how that feels, how deeply the loss of this child has rocked me to the core, or how broken my heart is without her. I could write and write and write, but no words could ever do these feelings justice. Just know little girl that we miss you. A year and a half ago. Today. Always.

Thank you all for your prayers, support, and words of encouragement. Yesterday went pretty well. The procedure was expected to take fifteen to twenty minutes, but they actually had me in a little over an hour. As explained earlier, I had A LOT of follicles, so they had to take their time going through them all and retrieving what they considered to be the best ones.

I learned something new about myself yesterday. As one nurse put it, I am "a hoot" under anesthesia. I have no recollection, but apparently I came out talking about chicken parmigiana, and calling the anesthesiologist and other staff by some pet names. Thank god I am not privy to any classified information, they probably could have gotten anything out of me in that state!

From the time that I came out of the procedure, until now, I have physically felt pretty okay. I am crampy, and a little sore, but all in all, not as bad as I expected. Emotionally is another story. I don't know if it was the HCG shot or what, but I have been feeling really down, which doesn't make sense because we came out of it with some pretty great news - they were able to retrieve fifteen eggs (our understanding is that more than 10 eggs is considered a good cycle.)

We decided to expose them all for fertilization because we were told that on average, half the eggs retrieved will fertilize, and half those fertilized will do so "well." Today, between 1 and 3, we will get the call to let us know how many eggs have become embryos, and how they are doing.

Tonight we start the progesterone shots in my back. I have been a pretty good sport up until now about the injections, but this one has me really scared... any hints out there?

*A LITTLE SIDE NOTE* International Babylost Mothers Day is just around the corner (May 2nd.) Are there any other mommas in the CT/Northeast USA area who are interested in meeting up to spend the day together? If you would like to join us, please shoot me an email at doinggoodinhername(at)gmail(dot)com