Wednesday, March 31, 2010

The Ups and Downs of "All Systems Go"

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

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

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

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

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

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

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

Tuesday, March 30, 2010

!@#$%^&U IVF QUESTION... Help!

I am so upset. Tonight at 10:15 I had to do my trigger shot for IVF (retrieval is scheduled for Thursday AM) and the powder that it gets mixed with just wouldn't dissolve. It took me until 10:22 to finally get it mixed and injected. Everything I have been told and read says that this has to be done at the EXACT time assigned. I am totally freaking out now that I could have cost myself this whole cycle over seven stupid minutes. I just want to cry.

Thanks all for your kind messages of support. I met with the RE office this morning, and they explained that, though not ideal, they don't believe it will have a negative impact on tomorrow's retrieval. Thank you all so much for helping to put my mind at ease.

Monday, March 29, 2010

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?

Thursday, March 25, 2010

Focusing on the task at hand...

Thank you all for your kind messages of support these last few days. Being a loss blogger, I have come across several posts from other BLM's about mean "anonymous" comments that people have sent them, and grieving in such an open forum I half expected at some point to receive words like this from a stranger, but never, ever, from family. Both hubs and I appreciated your messages and the validation they gave to how we were feeling about this particular couple's actions.

More than forty five of you commented on my last post, and one theme seemed to be unanimous in all that you wrote - further contact with this couple will only cause more stress/pain.

Are we hurt like hell that something (someone) that was so important in our life meant nothing in theirs? Of course. That being said, hubs and I have decided that any relative who chose not to be there with us in sorrow, is not someone we want to have beside us in joy anyway (even though we are fairly certain that their response to our joy would have been equally selfish.)

I know that Jesus said to "turn the other cheek," but after the insults to my child, my husband, and myself, I am out of cheeks left to slap, so its time to turn away from these people and their hurtful words and actions altogether, and focus our full energies instead on the task at hand... making our rainbow baby(ies).

So now... onto more fun stuff.

We started Follistim injections Tuesday evening. These injections, for those of you who don't know, are subcutaneous and can be inserted into an area of the thigh, or the abdomen. We chose to do them via the abdomen because, for some reason, the idea of shooting myself in the thigh gives me the willies.

Hubs played doctor the first night, performing the injection as I laid out on the couch (like a total weenie) shielding my eyes with my hands. His reaction was something along the lines of, "wow that was harder to insert than I thought," to which I responded, "that was it?" Really, for anyone out there facing this particular injection (I can't speak for the others yet) the pain falls under the NBD class, for No Big Deal.

A few minutes after the injection, the area below my skin started to sort of burn and ache. This lasted maybe five to ten minutes, then subsided. I think that sensation must have been from the drug spreading out but am not sure.

I must have handled the whole thing pretty well, because last night hubs got invited to a Rangers hockey game, and tried to coax me to join him and do my injection in the middle of Madison Square Garden. I told him that wasn't really an idea that appealed to me, so the topic turned to whether or not I felt up to the challenge of self injection. Until I actually did it, I wasn't sure how I would handle it, but that too fell under NBD status. There was a little prick with very little pain or blood, followed a few minutes later by a burning ache.

Tuesday I had an ultrasound, and was given some good news, and some "I don't know what to do with that" news. The good news is that I have 20 follicles in one ovary, and 15 in the other, so, as the nurse explained, I am "very fertile for being so infertile." Comments like this make me mentally wave my fist at the air and yell "damn you c-section!"

The "I don't know what to do with that" news, was that my uterus, which has always been a little tipped, is now tipped and twisted. I don't really know what that means. Have any of you dealt with a twisted uterus, and if so, did it pose any issues?

Between the progesterone to start my cycle, and these injections, I have had a few side effects, mostly leg cramps and bloating, but today when I woke up, I was extremely nauseous, dizzy, and just feeling blah. The IVF nurse assured me that this is probably a bug from the constant change in weather we have been experiencing, and not something having to do with the meds. If she is right, I am hoping to feel better in the next few days.

So there you have it. More forward momentum. Sometime next week I will go in for the retrieval, and then 3 or 5 days later, return for implantation. As most of you know, getting royally kicked in the gut by the universe a few times in a row, the way we have, will leave a person lacking optimism. That being said, for some unknown reason, I feel really confident about this cycle. I am just sort of expecting that it will work. Someone told me not to get my hopes up too high, but honestly, my hopes have nowhere to go but up.

**I wanted to mention, too, how incredibly behind I am on my reading. I had some Google reader issues that seem to have remedied themselves, but now there are hundreds of posts in there. I have been going through them, just reading some, reading and commenting on others, and want you all to know that just because you may not have heard from me in a few days, does not mean you are not in my thoughts.

Tuesday, March 23, 2010

Powder Keg...

Have any of you dealt with someone who really should have been there for you during the loss of your child, yet chose to be completely absent? We all know that child loss is taboo, and sort of expect certain friends and acquaintances to focus their energies elsewhere, but there are some people, who above all others, should stick around.

I write on here often about our incredible family and friends, and it is true, we have been blessed... for the most part.

But then there is that one couple, a couple, who for reasons of anonymity on this blog I won't give specific title to but we will just say that they are of very close blood relation (aunt/uncle, brother/sister, grandma/grandpa, type close). This couple has chosen complete absence from our lives. There was no call. No card. No attendance at the funeral, or bouquet of flowers. Nothing except a few text messages sent in the early days that even acknowledged that Peyton had died. A few typed keys, and pressing send. That is what our child's life meant to them, and it sucks.

We have seen this couple only once since Peyton's passing, at a family gathering. This was yet another opportunity for them to offer their condolences, and they chose instead to poke fun at hubs for having put on a little bit of weight since they had seen him last, weight that had come about as a result of his grief, rather than ask how we were doing, or tell us they were sorry for our loss. I could tell you that this left us angry, but mostly we were hurt. 

Yesterday I posted a status on FB about some of the goings on in the world, and received an argumentative response from one member of this couple. Okay, I am as open to debate as the next person. Friends and family rarely agree with my political views on anything, so I am used to opposition and that is fine, but this really bothered me. Like really, DEEPLY, bothered me, that the first contact from this couple would not be to see how me and hubs are doing, or ask about Doing Good In Her Name, or IVF, but instead to argue with my opinion on an issue.

I have to say that honestly the politics involved really didn't matter all that much, what threw me over the edge was a final line, one snarky remark insulting me for not having properly spelled this person's wife's name. Excuse me? Really? Our child died and you said nothing, and THAT, a freaking typo, upset you?

This comment was like a spark that blew the top off of 18 months of resentment, and I responded with something to the affect that I was disappointed that of all the things going on in our lives these last 18 months, my opinion on a current event was the only one worth reaching out to me over.

I left the comment up just long enough that I knew they saw it (a few minutes or so) and then deleted it, deciding that my feelings towards them didn't need to be put out on display in front of FB people I don't know. They were my intended audience of the message. The message was received. Delete. Could I have taken the high road here? Of course. Should I have? I am still unsure. 

In an email chain that started last night, the wife told me that she was "disguisted" with me, saying, "Good luck to you because if you're willing to go there that quickly over something so petty - you are going to need all the luck you can get." She had completely missed the point of my message, and went on to provide me with a list of reasons, most all my fault in her mind, as to why they couldn't reach out to us after Peyton's death. Here are some of the highlights.

*They don't have my phone number
*They can't respect the way I have handled my grief
*My lack of compassion and consideration for others
*I am selfish 
And my personal favorite:
*We only gave them a few days notice for Peyton's funeral. 


In one message, the person insisted they had reached out repeatedly (I didn't realize texting now constituted reaching out to a blood relative over the death of their child), and then in the next wrote, "Have I reached out to you directly? Nope and it's because I'm not going to support you in this." The "in this" being my inability, as stated in one of her other messages, to get over Peyton's death. She told me, "Another reason I personally have not reached out directly to you is because I don't coddle. I don't. I'm that person you rant about on your blog who believes there comes a time to stop being selfish and step back out in the world." I guess I didn't realize that sharing my feelings in this space, and being open and honest about this journey made me selfish.

So all of this back and forth leaves me wondering, do I care? Really? Do I care about the opinion of a person who, though a close relative, found my daughter unworthy of mention past a few text messages? A person who, when called out on this, chose not to apologize but rather to throw my grief in my face, using terms like, "martyr" or "brass, self centered and arrogant"? 

Honestly, I'm not sure anymore that I do.

Monday, March 22, 2010

She's here...

AF came to visit this morning, and I have to say, this may be the first time I have actually been excited about that. It's early morning here. I am counting down the minutes until my RE's office opens, so I can call and make my baseline bloodwork and ultrasound appointments, and get started on my injections.

I feel like we have waited so long for this moment, and Lord knows it is not how we anticipated making a family, but it is our chance to start trying again and I am so grateful for that. Please join us in praying that it works for us so we can put the added pain of this infertility behind us.

It's funny, I know the next month will be loaded with doctor's appointments, injections, and uncomfortable procedures, but all I can hear this morning are the following lyrics...

Birds flying high
You know how I feel
Sun in the sky
You know how I feel
Reeds driftin' on by
You know how I feel
It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good

Friday, March 19, 2010

There is something to be said...

for sitting down with someone else who "gets it."

Last night, Hubs and I got together with another couple who lost their little girl to Leukemia. It was a really nice time, but the kind of time that only two couples who have walked the road of loss could share, laughing and making jokes one moment, and tearing up talking about the last moments we each spent with our child the next.

2008 was a terrible year for both of our families. Their daughter lost her battle in May, ours in October. A year ago we would have just sat there, fuming and bitter at how incredibly unfair losing Peyton was, and how angry at the world we are, but somehow we have come to a different place. A place where we could truly enjoy ourselves, even beneath the cloud of grief and loss. A place where you say, "Man, I really like this couple, they are awesome, but I so wish the circumstances for having met had been different."

I go to a therapist. I meet with a mom's group. I write and talk and make connections here. Last night was really the first time that Hubs, in an informal setting, could look across the table at another guy sitting in the same position. He's not one to open up about how he is feeling, but I could tell over the course of our time together, that making a connection like that was important for him.

This couple has come further in their journey than we have, I say this only because they have gone on to have two more beautiful children. I guess there was healing in that too. In seeing that it CAN happen. You CAN move forward towards a family, without Leukemia looming foreboding over your entire future. Does this couple ever stop worrying? Probably not. But they move forward, and this was something I needed to see right now.

Their story offered us some much needed reassurance, especially as we start our IVF cycle next week, that there can be a happy ending. Well, maybe happy ending is a bad choice of words. Can any of us truly be happy in the end without the child we are missing? No, I don't think we can, so I will word it like this: meeting this couple showed us that losing your first child to Leukemia doesn't have to be the end, and for that we are grateful.

On an unrelated note, can you please send my friend Bobbie some love today. Her beautiful girl, Evelyn, lost her life to the same exact Leukemia that Peyton battled. Today, she is spending her first birthday in Heaven. Many of us have crossed this painful bridge, others are facing it down. For me it was the hardest day after Peyton died, one that should have been full of so much promise, instead brimming with so many tears. Please send her your love here.

Wednesday, March 17, 2010

Classes and Needles and Cycles OH MY!

A Split Post about Grief, Life & Infertility

The first half of this post deals with my IVF journey, the second with grief/life. Read one, or both, your choice.

My last post was a little mopey. I guess just realizing how involved this journey toward babyhood is going to be, has me feeling a little less than female. I won't go into that again, I did that here, and so what's the point?

Last Thursday night, hubs and I went to the injections class required by our clinic. I'm not really sure how we got bumped up on the list, but am greatly appreciative for it, as we were told the wait to get into the class could put off our starting a cycle for a while.

The class, led by an extremely personable and informative nurse, walked step by step through each drug, what it did, and how it was administered. I'd be lying if I didn't say that hubs REALLY seemed to enjoy poking the orange. I mean REALLY enjoyed it. I am crossing my fingers that he goes easier on me. Should all go well, these injections will begin sometime next week.

Right now I am taking some Prometrium tablets to start my cycle. There is really no way to sugar coat it, they leave me feeling awful. I didn't react well to them last month when I took them for the trial run, and seem to be even more irritated by them this time around. I feel extremely exhausted and nauseous, and have had a pounding headache the last four or so days. Another disconcerting little fact is that a side effect listed right on the bottle is breast cancer. Not "prolonged use of this drug can lead to..." Nope. Just listed between nausea and diarrhea. After seeing that, I think I'm gonna skip reading the other medication information packets.

Once my cycle starts, injections will begin on day two. I KNOW! I can't believe how quickly we have gone from no forward momentum to this point either. Please keep us in your prayers that this works the first time. Our insurance has a $15,000 lifetime cap, which will be more than spent on this first cycle, so things would get a whole lot more complicated if it didn't.

The drugs were ordered last week, but our insurance company requires them to come via mail. We ordered them to arrive Monday. It is Wednesday. Still not here. A call from the insurance company yesterday assured me that today is the day. Thank God I didn't start my cycle already, or this delay could have really posed a problem. The drugs, for the most part, require refrigeration, and have a shelf life of 28 days, so if the insurance were to not get them to me in time, and we had to put the cycle off another month, they would be no good.

The plan is to implant two embryos on transfer day. If not for the cap on our insurance, we would be doing one at a time, but we want the best possible chance for this to work. The doctor has told me that we have about a 50% chance of conceiving, and if we do conceive, a 50% chance of having twins. A smaller percent chance of higher order multiples. PLEASE PRAY that we do not conceive more than two babies. The whole issue of selective reduction comes into play at that point, and it is more than I can handle quite honestly.

So thus continues the emotional roller coaster that is infertility after loss. One minute I am happy that we are here, and things are moving forward, the next I am scared to death, wondering, If God is making it this difficult for me to have another child, should I be listening? Then a minute later, Why shouldn't I be a mother? It is a real volley of emotions.

A wonderful bloggy friend, Brandy Jean, sent me a package with meditation CD's specifically designed for the IVF process. There are meditations for retrieval, and others for transfer. I can't tell you how much it meant to me that someone who doesn't know me beyond my words on this page, took the time to do something to help ease me through this process. Brandy, herself, is awaiting news as to whether her transfer worked. Please head over and send her some love.

Has anyone out there tried accupuncture? I am in the process now of trying to find a licensed practitioner who deals specifically with fertility and IVF. I figure that in the next month, I am gonna become a human pin cushion anyway, so what's a few more needles, right?

I am going to preface the rest of this post by saying that I know that being open about my grief journey, in a public forum like this, means that some readers are bound to pass judgement on me, and that is fine. They aren't me, they didn't lose my child in the same way I did.

I also know that the vast majority of people who come here are the opposite. They are facing their own infertility, grief, or life struggle, and that is what brings them to this page. Because of this, whenever I come across something helpful to me in my journey, I like to share it here. 

Below are some guideposts that I use when those moments/ flashbacks/ memories/ images that come seemingly out of nowhere to take my breath away, come calling. 

These four guideposts were provided to me some months ago. Of course it goes without saying that I am by no means a therapist, but when I find something useful, I like to share it. I don't know the origins, or creator of these guideposts, and for that I apologize. Mine were jotted down on some note paper, and when I tried to do a google search on them, I came up empty.

The four guideposts are Focus, Grounding, Energy Conservation, and Direction, and they are useful to meditate on when you are really struggling.

Focus: One thing at a time. What is the most important thing for you to focus your attention on right now?
Grounding: Find a way to center or stabilize yourself, so that the waves of emotions can't drag you away into their undercurrent. (For me, this is writing or meditation.)
Energy Conservation: When you are really struggling, your energy reserves are limited. Ask yourself, "Is this the best use of my energy right now?"
Direction: Are your actions taking you in the direction you truly want to go? If not, remember that you can make different choices to change your direction at any time.

These guideposts bring me back to my favorite quote, one that I have turned to for comfort time and time again over the past 17 months. It is by English Novelist George Eliot (who, just as a fun little factoid, was actually a woman named Mary Anne Evans. She wrote under a man's name so as to be taken seriously.)
Eliot said:
"It's never too late to be what you might have been."

On the days (like yesterday) where everything feels so impossible, I bring myself back to this quote, nod my head, and say "maybe so."

Monday, March 15, 2010

Just two words...

Why Me?

Okay, I know that no good comes out of asking these question, but you know what? Sometimes, I can't help it. It is there, behind my forced smile screaming to be heard: "Why me? Why her? Why us?"

Last night, while flipping through the stations, I came upon an episode of the show 16 & Pregnant, and I couldn't help but wonder... WTF?!?! In the episode, an overly tanned and under-matured girl was more concerned (during the 2 minute snippit of the show that I actually watched) with drama concerning her boyfriend, than the arrival of her child, and there I sat, mouth agape, wondering... how is it that I can be such an utter failure at something that comes so easily to this immature little tart?

Yes. You heard me right. A failure.

I have failed at baby making.

I COULD NOT make a healthy baby. I CAN NOT get pregnant. There is no part of childbearing in my future that won't require surgical assistance to either implant a child into my body, or deliver one from me.

I can't help it. This feeling, This sense that I have failed miserably comes out of nowhere to overwhelm me. I used to be that person who set her mind to something and got it done. What happened to her? I can't solve this. It is bigger than me.

It breaks my heart that the act of conceiving and then pushing a child out, something that so many women jokingly complain about, is a dream out of my reach. This reality crashes down over me time and time again and I can't do anything to shield myself from the pain that comes with it. I am unable to do what my body was made to do. I am unable to perform the most basic female function.

I have been left, broken, holding the bag on this one and it feels so unfair. What makes me so goddamn undeserving...

Why Me?

Thursday, March 11, 2010

A nice change of pace.

Thank you so much to everyone who participated in this little question and answer exercise. I didn't know if anyone would send questions over, and then checked my inbox and saw all these great ones. I hope you enjoy reading the answers as much as I enjoyed reading the questions. 

- in what ways are you proud of Peyton? 
I am proud of Peyton's fighter spirit, and the way she never complained. Here this kid was going through the most awful types of treatments and medications imaginable, and she greeted every day with bright eyes, just ready to take the world around her in and be held. She rarely cried, except for during diaper changes of all things (she hated those), but there were some awful moments towards the end where any adult would have crumbled, and she just soldiered through them. I think there is a lot to be learned (and I am still working on this) from someone facing each day with such a great attitude despite the battles before her.
-What things are most precious to you about her?
Most precious to me about Peyton was her unguarded love. There were moments where she should have been exhausted, but for our sake she would stay up for hours staring into our eyes, or cuddle up, even when doing so meant more bruising (because of the Leukemia.)
- other than the obvious (Peyton not being here) is there anything you regret doing/not doing?
My greatest regret is that Peyton was never surrounded by pure joy. There was always an intense undercurrent of sadness. All children deserve to be surrounded by joy. In this way, I really feel I let Peyton down. We just didn't know. We didn't know our time would be so limited. Every day was a sort of panic mode, trying to get from one step in her treatment to the next. There were so many obstacles to overcome. I wish I could have not focused on Peyton's future, and just enjoyed her in her "present." That's not to say we didn't have beautiful moments, and we always smiled at her not wanting to let on how scared we were, but it wasn't pure joy and she deserved that from us.
 -Is there anything you are especially pleased you did do?
Breastfed her and did skin to skin time with her. It was the only "normal" mother child thing we could do in the hospital, and I relished every moment of it. I know she did too. She would pick up her head, look around (a skill I was really proud of her for doing since she was such a little newborn) and sigh before laying her head back on my chest. On my really dark days, it is those moments I cling hard to. They remind me that she was here. She was my child. We had that bond.
- if you had to chose one word to summarise grief what would it be?
- if you could change one thing about how the world around you responds to your grief what would that be?

How unfairly judgmental people can be. People tend to see Peyton as less than a person because she was such a little baby, and me as less than a mother because she never came home. They say things like, "at least it didn't go on longer" or "at least she didn't come home with you because THAT would be really hard." My daughter is dead. A day old, a month old or 100 years old, that doesn't matter. She was still my child. I also really hate the way certain people use the "Everything happens for a reason" mentality to justify her loss. I have had two seperate people tell me that "maybe it is God's way of saying you aren't meant to be a mother." 
Was Peyton a happy baby or did her illness overshadow that?
It took ALOT for Peyton to complain. She did alot of smiling and looking around, she loved being held. I think she was a very happy baby. Happier than most adults would be in that situation. I think the situation overshadowed our joy, not hers. Alot of people, I think, assume because of her age that she was this sick little thing in an incubator. She wasn't. She always looked older than her age, she had a sort of wisdom in her expressions, and was very interactive with us. That is what made it so hard for us to accept how incredibly sick she was. We would get horrible news, come back to the room devastated, and she would look at us like, "Hey, what's the big deal. Look at me, I'm fine." She was our greatest cheerleader.
What is your favorite color? 

I never really had a favorite color, I have always been more of a wear black and white kinda girl. Now I would say yellow because since her passing, yellow butterflies tend to visit us alot. 
What kind of books do you like to read?
Since her death, sleep is an issue with me, so I make a point to try to only read "happy" books before bed. I love Janet Evanovich, Sophie Kinsella, Nicholas Sparks. That being said "The Kite Runner" and "Bobbed Hair and Bathtub Gin: Writers Running Wild In The Twenties" are two of my alltime favorites, and I am addicted to reading anything that has to do with writing.
When people ask you if you have any children how do you respond? 
I have alot of trouble with this. Usually I blurt out that I did and she is dead and everyone stares at me blankly sort of shocked by it all. I have not mastered a way to answer this without making a spectacle of myself. On the days I am thinking the most clearly it comes out like, "Our daughter died of Leukemia." But usually, like I said, it is more jumbled with emotion. That being said, I never say "none." I do have a daughter, dead or alive, she is still mine.
How is your coping with grief different than your husband's?
I wear my emotions like a Scarlet Letter. My husband keeps his all in. There couldn't be two people who grieve more differently than we do. We heard early on how so many couples divorce after losing a child, especially a first child, and committed to respecting each other's grief, even when we don't understand it. For me that means not saying anything when he can't answer the above question, and him not judging my need to write so much or go to therapy. Neither of us grieves better, just totally different.
When did you get Peyton's cancer diagnosis, in utero or after birth?
When Peyton was born via c-section the doctor told me "you have a beautiful, perfect little girl." By the time I was wheeled back to my room, she rushed to my bedside to say, "Something is very, very wrong with your baby." They had given Peyton some routine shots in the nursery, and couldn't get her to stop bleeding. It was very traumatic and completely unexpected. Within moments of Peyton's birth we were signing papers to authorize blood transfusions and to have her transferred to another hospital. It would be three days before I could even hold her. I hate to say this, but it is true. Peyton's birth was the second worst day of my life. Her death the first. 
Do you think grief has effected your marriage?
Yes. There were days, especially in the beginning, when I felt toxic and jinxed. I love my hubs so much and would beg him to just leave and start over somewhere else with someone else who could give him healthy kids. I never wanted him to leave because I had stopped loving him or anything like that. I wanted him to because I loved him so much that I hated the feeling that I was holding him back from having a family. Luckily, he didn't listen to me. My husband and I have come through this committed to making it. We face high divorce odds because of the loss of Peyton, odds that are compounded when you add in our infertility issues, and that we don't share the same religious beliefs. There are things that on paper would spell out trouble, but we cross each pebble, rut, and mountain together, because we love each other. We have been dealt a tough hand of cards, but they are our cards, not mine, not his, ours. The sooner a couple in this situation realizes that, the better. 
Do you feel like you really got to know Peyton well in the NICU, or do you wish you got to take her home?
I wish I could have taken her home, but by the time that was an option, it was as a Hospice situation. Peyton was suffering so terribly at the end, that I worried taking her home might bring more pain than comfort. That being said, I got to know Peyton. I got to know that she hated the cold hitting her bottom. I got to know that she loved skin to skin time, being held, and kissed and rocked. I got to know that she would fight off the pain of cancer, and chemo, and a mass in her brain, and spinal taps, and debrieding surgeries, and a horrific fungal infection, to stare into our eyes. The night before Peyton died, she stayed up for hours looking at us. It was the greatest gift she could have given us. I think of how hard that must have been. How much she must have wanted to give in and rest, but she fought through it never letting on to how sick she really was. I definitely got to know her, and I am so proud of the little girl I got to know.
Where do you live? 

We live in a sleepy little town in Connecticut surrounded by rivers to tube, mountains to hike, and paths and trails to explore. I love the outdoors and nature. To me, this place is a little slice of Heaven on Earth.
What do you do for a living?
I had a great job and growing career in medical sales when I had Peyton. After she died, I wasn't able to go back. Confidence is what made me really good at that job, and my confidence was completely shattered. It was recommended early on that I do some journaling to get through my grief, and now I write. And write. And write. I have written a memoir about Peyton, some short stories, these blog posts. I don't write for a living, but writing keeps me alive.
What do you think is the biggest lesson grief/Peyton has taught you?

I would love to say something inspiring here, but it would be a lie. The biggest lesson this grief has taught me is how quickly all the plans you had for your life can fall apart. The biggest lesson Peyton has taught me is how deeply you can love someone.
My question is simply this: what piece of advice or wisdom you would share with someone who has just lost their baby? 
Keep breathing. Even when you feel like you can't, when your chest is so heavy and you don't know what the point is in going on, keep doing it. Just take one breath, and then another. Be kind to yourself, and don't worry about what others think you should be doing or feeling. They aren't you. Even if they too lost a child, they didn't lose YOUR child in YOUR particular circumstance. Do what feels right in your grief, when it feels right, and when you feel up to it, find an outlet. Jogging, writing, boxing, art. Find an outlet to bear some of the burden of what you are carrying with you.
What is your most precious memory with Peyton?
Doing skin to skin time at the hospital. She would let out these adorable little sighs as she lifted and readjusted her head, and the minty sweet milky smell of her breath would waft up to my nose with each little exhalation. I had never felt so needed in all my life. 
What has been the most helpful form of support for you following the loss of Peyton?
It has been a mix of things. I have wonderful family and friends, and an incredibly capable therapist who have allowed me to feel what I need to feel when I need to feel it through this loss. I have a husband who loves me even when he doesn't understand me, and have found a community online that knows, truly, what it is I am going through. I think it has also been so important to be allowed to grieve on my own time in my own way. This isn't something that can be rushed according to someone else's timetable, and anyone who thinks it can be, has never lived it.
When Peyton has a sibling, what things will you do to help them "know" her?
Peyton's name is spoken in this house every day. She was made of our love and her death doesn't change that. If we are blessed (knock on wood) to have other children, her name will continue to be spoken every day, so our kids will definitely know that they have a big sister looking over them. She is as much a part of this family as any of us. I have heard some cute ideas too, for when they are older, of hanging a stocking for her at Christmas for everyone to write notes to her in. I like that. We will also do Doing Good In Her Name as a family, and decorate the Peyton Tree together over the holidays. The only thing we might not do as a family is watch the videos of her, because towards the end, they are hard and might be difficult for little ones to see. 

Did Peyton ever get to go outside? I know that you probably had to be very cautious about exposing her to germs...just curious.
This is one of my greatest regrets. Peyton never went outside, except the ride from one hospital to the next in an ambulance. If we had known her time was so short, I think I would have pushed for it. I honestly didn't even know that taking her outside was within my rights to do. The fact that she never felt the sun on her face is something that keeps me up at night. 
When you think of Peyton, do you think of her as an 18 month old toddler or as a 4 week old baby?
I think of Peyton's spirit more than her age. I talk to her all the time, but not in a cooing little baby way, more just in conversations. I often ask out loud if she is tired of me burdening her little baby ears with all my complaining. I think because she had such an "old soul" look to her eyes, I always took her for being wise. That's the way I see her. I had a couple really vivid "dreams" about Peyton. In one she was young, maybe 5 or 7, in the other I saw her go through her whole life, so I guess I sort of picture her all different ways. The other day a woman said that she had a seventeen month old at home, and I tried saying that out loud to myself, "I have a toddler, I have an eighteen month old." I couldn't even imagine it. It felt foreign to put an age on her.
Do you have names picked out for Peyton's siblings?

No, haha. To be honest I didn't have Peyton's name picked out either. She was going to be Scarlett or Finn. Then, in a drug induced haze during the C-section I popped out with Peyton. Not wanting to argue with me while my uterus was sitting on my chest, hubs just sort of went with it. When I got wheeled back to the room I asked where Scarlett was and hubs said, "Scarlett? You said Peyton. I told everyone Peyton." Those were some serious drugs. 
Does your husband read your blog? 
No. I mean he has here and there, but he doesn't because it brings back memories that make him sad.
What is something silly about you; weird habits?
*If I really like something that I am eating, I will sort of dance around in my chair. I don't even realize I am doing it till hubs points it out.

*I took five years of Spanish and can hardly speak a word, unless I am drunk and wandering the streets of Mexico where I become inexplicably fluent.  
*I am TONE DEAF but love to sing. In church, hubs will ask me to stop because I am ruining the moment for him. Being that he is agnostic, that is saying alot.
*As far as weird habit, I have tons of them. I can't sleep if the closet doors are open. 
As a child, what were your dreams?
I wanted to be garbage truck driver/stand up comedian until I was like 7. I don't know why. Just did. 
Since then, my dream has been to write.
What is your favorite memory of Peyton?
I already answered this, so I will add another. One day she was being changed and she started to cry and hit this really high note which seemed to shock her. It was like she had found something new, so she shot me this look like, "Hey mom did you hear that?" and went back to it again. She was only a few weeks old at the time. Suddenly she wasn't crying anymore, just hitting the high note because she could. She seemed very proud of herself.
If you could send her a message and know that she would receive it, what would you say to her?
You were loved. You were wanted. You still are. I'm sorry I couldn't do more.

Tuesday, March 9, 2010

Your Questions My Answers

A few months ago, I read a post where the blogger invited readers to ask questions in the comments section. She then answered them in her following post. As a reader of her blog, I got to know a little more about who it was that I was reading, and saw a sort of virtual conversation play out at she answered the questions.

Over the past 10 months I have really come to love this community. There are many bloggers who I have met here who I now consider friends, and others who I would like to get to know better. I think that is what I liked about the question and answer post, the way it created a sense of dialogue and allowed readers to get a little more insight into the bloggers whole self, not just what they had chosen to blog about on a given day.

The idea of doing this was filed away into the back of my mind that day, and sort of forgotten about, but with the sun shining, and Spring attempting to spring, I thought this might be a fun little change of pace.

So there you have it. If there is anything you would like to know, about me, Peyton, or something you have read here... just ask away! 

Friday, March 5, 2010

Stop this ride, I wanna get off!

So last week I blogged just about every day. This week...not so much. This is due, in large part, to the incredible roller coaster that this week has been, full of extreme highs and lows.

Here is a recap of some of its ups and downs.

On Monday we got a call that an opening for NEXT WEEK came up in the injections class. The woman told me if we couldn't make that one, we would have quite a wait ahead of us. I guess someone either dropped out, or got pregnant on their own. Needless to say, we jumped right on it. We go on Thursday, and if all goes well and my meds arrive on time (our insurance requires that we use a mail order service) than we might cycle as early as next month.-That was an UP!

As some of you know, there is a journalist, Joel Meares, who has been interviewing me on and off for the last six or so months for a story he is writing for Columbia University about online grieving. That story hasn't actually come out yet, but he wrote an opinion piece for the Australian website "The Punch" this week, in which he defended online memorial sites (there has been some controversy over them in Australia, and rightfully so) and mentioned my blog. Being the nothing special girl that I am, I found it to be pretty darn exciting, even though it didn't seem to sway many minds on the topic. You can read that here if you'd like. -Another UP!

This week, like every week, I am missing Peyton. Waves of grief, like those from her early days Why me? Why her? Why us? Why is cancer our cross to bear? Why can't I be normal and make healthy babies? etc. etc. come crashing down sporadically and with little warning. I usually visit Peyton's grave for comfort when those questions come calling, and this week, doing so did not bring healing. It brought the discovery that someone had allowed their dogs, again, to desecrate her grave. This was pretty hard to take. - This was a Down!

That being said, I met with Officer B yesterday and she promised to take more runs through that area in the hopes of catching whoever is doing this, whether it be the same man, or someone else. Officer B also lost her only daughter, so she understands how hard seeing Peyton's grave disrespected is for me. She understands that it is just another example of my inability to protect my child.

During our meeting over coffee yesterday morning, Officer B also mentioned a grieving mothers group that she was going to, and invited me to come. I did, and in the process met some wonderful women. Our situations were different, it was not a baby loss group, but I made some great connections nonetheless. -Up!

Just when I finally felt the earth moving again, and started feeling hopeful about trying for a rainbow baby, I was met with some devastating news that left me rocked to the core. This news left me questioning everything.

I came across the story of a woman who lost not one, but two of her precious babies to the same type of extremely rare Leukemia that Peyton had. She is the only known case of having more than one child be diagnosed, without the siblings being identical twins, and I know that I should find some comfort in that, but she doesn't know how or why her two babies developed this Leukemia, so there is no reassurance in having heard her story.

Seeing how she, like me, lost her first child to this devastating disease, was hard enough. Hearing her tell how she spent a year of healing before building up the the nerve to try again, only to have Leukemia steal another child from her, well, it was too much to take. The tears and deep sense of fear were unstoppable.

Here hubs and I were celebrating our good fortune in having the chance to try IVF, and then, out of left field, this story came along leaving us to question everything.

Should we try? 
Do we have the right to try? 
Is it selfish to try when this risk may still be out there?

This story spit in the face of my sense of hope. I felt myself spinning, lost, unable to navigate back to a place where my confidence in my right to, belief in, or ability that I can have healthy children would return. The burden of having lost my child inexplicably to cancer buys me membership to a club that I want no part of, a club that forces me to worry that other kids could be affected too.  This was a Down! Down! Down!

I know life is unfair, but why? Why does it have to be? Why can't I scream "Hey universe, I have already had my share of shitty days, its my turn to shine. Back off!"

These questions were weighing really heavily on my mind, and then I heard this. It is something from my meeting last night that I'd like to share with you all.

A woman, ten years out from the death of her son, said she hated when people told her "Time heals." She said, "Time doesn't heal, it reveals."

I meditated on this quite a bit, and it brought me back to a post that I read some months ago by Carly.  In it, Carly shared a present day picture of herself with her children. In the post, Carly said that she wished the old her, the grief stricken mother dealing with the death of her child, could have seen the picture of her future, back then. She said that if she had, if she had known that such blessings still awaited her, she would have felt more hope through her suffering.

That, I guess, is what the woman at the meeting meant by "Time Reveals." 

I hope to one day be so fortunate as to have healing reveal itself to me with time. I pray for the day when I hold my rainbow baby(s) in a picture representing my new norm. A norm full of promise. I pray that I can discover who I am in this baby lost world. Who the "new me," is. The one who can never go back to who she was before, but can still feel that her life has been truly blessed despite all of the pain of losing Peyton.

Until then, until I see that snapshot of a better life, a life that came through this storm changed but okay, I will just have to wait. Wait and pray that time for me, too, will reveal healing.

Wednesday, March 3, 2010

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...