Tuesday, December 27, 2011

Birthday

*Warning - this post contains quite a few expletives. Proceed with caution.

So today is my birthday. We kept it pretty mellow - went to the gym, worked for a bit, took Ty to lunch, relaxed and basically just took it easy. Dan got me a beautiful hummingbir​d tile to build unto our back splash in the kitchen. He is so incredible thoughtful. Love that guy. He also gave me a baseball bat and an old printer and let me go to town. All three of us enjoyed that gift.

We went to dinner with my dad and all was good until a group came in with what looked like a five month old baby girl and sat right next to us. Needless to say, dinner was over.

That is the shit I just can't handle and it really sucks.

Some days I just feel like screaming at the top of my lungs that I can't fucking handle this anymore. I don't want her to be dead. I want her to be here. Why did my baby have to die and everyone else's is fine? Why the fuck did this have to happen to me? I just miss her so fucking much. I feel so broken. I don't know when or how of if this will ever get better? I can't help but think what the fuck did I do to deserve this? I can't handle it. I may act so strong but how long can I keep it up? After all, this is only an act and inside, I am flailing. I hate what my life has become. I hate not being able to be around babies or even meet my niece because it feels like I'm getting stabbed in my heart when I even think about her, let alone see a picture. I hate that I can't make it through a simple dinner without crying. I hate all of this and I desperately miss my old life. I miss my innocence and naivete. I miss life. I miss her.

Monday, December 26, 2011

We did it

I knew Christmas was going to be hard. Many, many people warned me how hard it was going to be and I listened and took advice to heart but nothing I did could have prepared myself for how hard it actually was. And not just the day of - the whole month leading up to it just plain sucked. I was NOT prepared for that part.

I have always loved Christmas. I loved finding the perfect things to give people (from my point of view at least) and watching them open it. Doesn't hurt that I have always loved shopping. Saying things have changed is an understatement. Ever since Naya died, going into a store has been pretty torturous. I know it seems strange but it's really an emotional battle. There are so many innocuous things that manage to stab me in the heart whether it's the diaper aisle at the grocery store or a mother pushing a baby in her cart. Shopping during Christmas time combines these things with the pain of seeing so many happy people shopping for their loved ones and buying presents for their kids. Shit that I would be doing if things hadn't gone so terribly wrong. I broke down numerous times in various stores throughout this past month. Everything just reminded me that my daughter is dead and I will never get to spend a Christmas with her. Enough so, that I did most of my Christmas shopping this year from the relative safety of my computer. Thank you for existing Etsy and Amazon. 

So with all the build up, I knew that the past two days were going to be hell. And they didn't disappoint. On Christmas Eve, I tried to have everything remain as normal as possible for Ty's sake and ignoring the fact that Naya would have been five months old on Christmas Eve. I sucked it up, we baked cookies, wrapped presents, had a nice dinner and I regulated all of my crying to the privacy of my shower. We woke up on Christmas morning, drank our tea and unwrapped presents, all while trying to ignore the gaping hole that is now a significant part of our lives. Ty had a wonderful Christmas, despite the fact that he decided to stop believing in Santa this year. He was very happy to get his Nintendo 3DS back after a month long sabbatical. 


After opening our gifts at home, we took showers and ventured to my dad's for brunch. Again, emotionally brutal. Don't get me wrong, it was lovely over there and no one did anything to make us feel bad. It was just so hard that she wasn't there with us except for the tiny bit of her ashes that were in the necklace I wore. Plus, Christmas was the time we announced to everyone that we were pregnant last year. Those happy memories only compounded our pain. We took a few breaks and went to the park by my dad's house to cry a few times. On the way back to our house, we stopped at the cemetery and wished her a Merry Christmas. We dropped Ty off at his dad's house and went home, packed our bags and drove down to the Indian Casino. Spent the rest of the day trying to forget that it was Christmas. I can't wait until the rest of this week is over - only a few more days (including my birthday tomorrow) and this shitty year will be over.


Ring Dan gave me for Christmas

Wednesday, December 21, 2011

Waiting

I feel like my life is a big waiting game now. Actually, this whole god damn year has been a waiting game. First we patiently awaited the birth of our daughter. We waited for her to try to get better in the hospital. We waited for the damn autopsy report after she died (more on this in a second). Now we are just waiting for the stupid holidays to be over because maybe that will help lift some of the fog that we are in.

We did finally get the autopsy report about a week and a half ago. I can't really go into much detail but it wasn't very surprising. She didn't have any genetic disorders and her lungs were the biggest problem. I guess it was good to find out that there was nothing genetic to prevent us from trying again. And now, that leads to another waiting game. Actively trying to have another baby.

I said in an earlier blog entry that I had a pre-conception visit with my OB a while back and she gave us the go ahead to try again. We waited (look - there's that theme again) for a month because we didn't want to be on the same "timeline" as we were last year with Naya. That would have been entirely too painful.

And now game on. We are actively trying to conceive. I never realized it before but trying to conceive is a huge waiting game. Especially when your body's natural cycle is all thrown off due to the fact that I gave birth five months ago and grief does a real number on one's hormones. So now we are waiting again. Waiting to ovulate. Waiting to be able to test. Just a whole bunch of stupid waiting. Being an incredibly impatient person in general makes this waiting fucking torture. We were able to conceive with Naya the first month around but I have a feeling this is not going to be so easy. The ironic thing is that after we do conceive, you know what's going to happen? That's right! More waiting! And a terrified panicky waiting at that.

Wish us luck - we are going to need it.

Monday, December 19, 2011

Is my brain broken?

One thing I've noticed about this whole grief thing is that my brain doesn't work the same as it did before. I am constantly forgetting things and my ability to focus has greatly diminished. Before, I was your typical overachiever. I loved being busy. My life was scheduled out and I was constantly going and handling the stress that comes with a busy life quite remarkably. I could work 40+ hours a week, get my son to his various activities, cook, clean, and basically "do it all" while brushing off the stress pretty easily. Yeah. Not so much anymore.

Now, going to work and handling that stress is about as much as I can handle. I come home and I don't want to do anything. I don't want to clean. I don't want to cook. I don't want to do anything but lie on my bed because I am exhausted. And it's depressing me because I feel like I am neglecting my family because I am just too tired to deal with it.

Luckily, Dan has been amazing at handling some of the stress - the helping Ty with homework kind being one of them. I am getting a little better but it's amazing how much energy and patience it takes to help with 5th grade homework. I don't know what I would do without him.

My ability to focus has also taken a huge hit. Before, I could do a multitude of things at the same time easily. Now, I find that I can't do simple things at the same time. I need to concentrate on focusing on one thing at a time or it all goes to hell. If someone is talking to me, I have to intensely listen to everything that they are saying or it goes right over my head. My grief has made me have the listening skills of a man. (No offense to anyone out there but you know it's true. That used to be one of my favorite things to do to Dan - talk to him while he was playing video games and watch him be completely oblivious to what I was saying. Now the tables have turned and that's me!)

I'm hoping that this is not a permanent effect. I can't handle that.

Thursday, December 15, 2011

Swinging

I sit swinging...
wrestling in my thoughts

staring
blinds closed and glaring
fixating on the gaps

listening
emptiness ever deafening
coldness screaming, seemingly never ceasing
despite the void, your chimes continue ringing

and through my swinging
my staring
my listening
I'm always thanking you for your sweet song

And wishing
always wishing



---

This is my poem
This is how I continue to feel every night
Because I miss you and grasp to continue hearing you

Always in my heart,
Your Dad

Wednesday, December 14, 2011

3 months

It has been an emotional week. I am not quite ready to put everything out there yet but I will, eventually. I think the Holidays are affecting me more than I thought they would.

Today was bad. Naya has been gone for 3 months. I can't believe it has already been 3 months. In some ways, it feels like it was yesterday and in others it feels like longer. My head hurts thinking about it.

Thank you to everyone who lit candles for my girl on Sunday. It was an incredibly touching experience and I can't think about it without crying. We spent an hour as a family, talking about Naya and crying. I wanted to share some of the pics that were posted on my Facebook wall on Sunday. You guys are amazing and I thank you for thinking of us during this time. It is so much appreciated.

Love to you all and more later (I promise)












This last one is our living room with candles lit for all of the children lost. I have decided that next year, I am going to sponsor and organize an event in our community to honor all these children with speakers, songs, prayers and candles. It was a special moment that I believe needs to be shared.

This last picture is of a drawing that Ty did while we were watching the candles glow on Sunday night. I think his words are pretty insightful. Love to both of my babies. I'm proud to be the mother of you both.

Sunday, December 11, 2011

For all those asking how I am doing

These aren't my own words but they hold true to how I am doing:

My mom is a survivor, or so I've heard it said.
But I can hear her crying at night, when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach, that never wash away. 
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others, a smile of disguise! 
But through it all, I see the tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.
But anyone that knows her knows, it is her way to survive.
As I watch over my surviving mom through Heaven's open door.
I try to tell her that Angels protect me forever more.
I know that doesn't help her, or ease the burden that she bears.
So if you get a chance, go visit her and show her that you care.
For no matter what she says, no matter what she feels.
My surviving mom has a broken heart, that time won't ever heal.

Every year, many families face the holidays after the unthinkable has happened – the death of a child. In response to the need for grieving families to have one special day during the difficult holidays to remember and honor these children who have died, at any age and from any cause, the Compassionate Friends, a national support organization, created the Worldwide Candle Lighting. It takes place this year at 7pm local time, for an hour, on Sunday, December 11.

Please join me in lighting a candle not only in Naya's memory but in memory of all the children that have passed away.


I will be lighting my candle for you tonight Naya.
I love you and I miss you every hour of every day.

Thursday, December 8, 2011

Awkward

I live in small town in a small county in the Middle of Nowhere, California. Don't get me wrong, I truly live in paradise (well, according to Oprah, I do) but there are definitely positives and negatives about living in this area. One great thing is that our community is very tight knit and helps each other out - as shown by the incredible support Dan and I received while Naya was fighting down at Children's. We couldn't have gotten through it without the support and are still super grateful. (Damn, I really need to start writing those Thank You cards but I still can't bring myself to start them.) 

Another thing about living in this area is that everyone knows each other. This is in itself a positive and negative. Because of this, one can't do something as simple as getting gas or grabbing lunch somewhere without running into someone you know. And this is where the awkwardness begins.

Basically, I am faced with one of three scenarios when I run into someone while going about my day. Either they know what happened or they don't. Quite honestly, they are all brutal. If they know what happened (and I haven't seen them yet) I get the standard "I am so sorry about what happened," "How are you doing?" "I prayed for you," "I don't know what to say," etc. There is nothing wrong with this, believe me. I am glad that they do acknowledge what happened because how can you ignore it? This past 5 months has changed and shaped me much more than the last 30 years combined.

Another scenario is just what I mentioned above - people know what happened but they ignore it because it's way too uncomfortable to talk about. Believe me, I get this too. This situation sucks and makes me feel just as uncomfortable as the person who has to run into me. I know that there a lot of the people who fit in this category want to say something to me but just don't know how to bring it up. And how do you? It's not like we are talking about the freaking weather or something. The small talk you have to have with me is about death and it's incredibly awkward and it's something that we, as a culture, are terrible talking about. I get it and I wouldn't be surprised if people avoid me just so they don't have to say something. I wouldn't blame them at all.

The third, and let me say, my absolute favorite scenario is when people have no idea what happened and ask "How's the baby?!" This too, I understand. After all, I was pregnant. They knew I was pregnant. The obvious conclusion would be that after a pregnancy, there is a baby. The awkwardness immediately starts for me as soon as these words leave their mouth. I mean what do I say? My options really suck. I can either: a) Lie and say she's fine which would make me feel like shit or b) tell the truth and say that she died which makes them feel like shit. Not pretty either way but so far, I have always chosen option b. I don't like making people feel uncomfortable but I can't see any other way to go.

I suppose I just have to get used to the fact that my life is going to be a giant pile of awkward for the foreseeable future. Awesome.

Monday, December 5, 2011

Sisyphus

I am bored. I never thought that 4 1/2 months after having a baby I would be complaining about boredom. I thought that I would be running around, changing diapers, getting up for feedings and trying to find enough hours in the day to cook and clean the house. But here I am, bored and babyless.

I've been doing a lot of reading lately. I've always been a big reader (I was an English major in college) but after I graduated, I gave up on literature for awhile and read mainly non-fiction and chick lit. (I can't believe I just admitted that last bit in a public forum.) I've found myself with a lot of time on my hands and I've already gone through the aimless laying on my bed part of my mourning process (which was spent watching both The Office and How I Met Your Mother) and now I need something else to do. So I am reading fiction again and not of the Shopoholic variety.

Right now, I am reading a book called The Hour I First Believed by Wally Lamb. I've read some of his books before and I've liked his style although I forgot how depressing his writing can be. This book is about a man whose wife was in the library of Columbine during the shootings and the aftermath this left on their lives. Yes, entirely depressing but it fits my mood.

When I read, I tend to focus on parts of the story that hold poignant to me and my own life. Obviously, my perspective has changed a lot in the past 6 months. During what part of the story, the main character is teaching a class called The Quest in Literature and he asks his students to write an essay in which they compare themselves to a mythological character. He does the assignment himself and compares his struggle to Sisyphus, the king who is forced to push a boulder up a hill only to have it roll back down on him for all of eternity. This really stood out to me. I think the struggle of Sisyphus is a perfect metaphor for the grief one experiences when you have lost a child. Every day is spent struggling to push the thoughts of your child out of your head in order to get through the day and make it up that hill. Some days, you barely go a few feet before everything comes crashing down again. Some days, you make it a good halfway up and feel like you are really progressing and you just might make it a little bit further tomorrow. And some days, you get that boulder pretty damn close to the summit but something gets in the way that causes that damn rock to come rolling back down again. Unfortunately, I think that parents who have lost a child suffer a similar fate as Sisyphus because we are never going to be able to get rid of that boulder.

Anyway, I am almost done with the book and looking for other good reads. Any suggestions?

Wednesday, November 30, 2011

Shame

Shame is yet another topic that I have been stewing over in my mind for quite awhile and that I'm going to try to put into words. Bear with me.

Through research I've done on infant loss, I've come across the statistic that 1 in 4 pregnancies end with a loss, either through miscarriage, stillbirth, or infant death. 1 in 4. That is a staggering number and, quite frankly, shocked the hell out of me. 1 in 4. Think about that - 25% of the time a woman is pregnant it ends in a loss. Why have I never heard this statistic before? It's mind blowing to me that a huge portion of women out there have experienced this, yet we never hear anything about it. My guess is that shame has a lot to do with it.

As women, we spend our whole lives knowing that our bodies can produce babies. Many of us want to. We hear our biological clocks ticking and start feeling those motherly urges to bring a baby into this world. When we lose this baby that we worked so hard to create, we feel that our bodies have failed us. We feel that their is something wrong with us because we were not able to produce something that we are supposed to. And because of this failure, we feel dirty, we feel broken, we feel like less of a woman. We feel shameful so we don't talk about it.

The strange thing is, when you lose a baby, people start coming out of the woodwork and telling you about their own tales of loss. I can't even tell you how many stories I've heard in the last few months. I think this happens because when a woman experiences a loss, they feel more comfortable telling their story to someone who has gone through something similar because they know they won't judge them. They lose that sense of shame because they know the other person will understand. I know I feel like that. I hate running into people that don't know what happened but knew I was pregnant and they ask about the baby. I can't help but think that underneath their genuine sorrow for me, there is a smidge of judgement. That just for a moment, they are thinking that somehow I did something that caused this to happen, because whose baby dies? And even if they aren't thinking that, I'm still worrying about them thinking it. Hell, I still think it about that myself. I know that everything happened was out of my hands but I still feel that I failed at my responsibility as a woman and a mother.

And that leads me to my goal. I want to help get rid of the shame that surrounds pregnancy and infant loss. It's unnecessary and completely unhealthy, especially since 25% of women go through it. If all of us women who have lost a baby could speak out and not be ashamed of something we ultimately couldn't control, maybe some of the stigma could go away and make the loss a tiny bit easier for all of us. Because, unfortunately it happens. I am not the first to experience this and I am definitely not going to be the last.

So how do we go about this? I think the obvious answer is by talking about it. Perhaps loss statistics should be discussed in birthing classes, because it happens. Maybe OB's should have conversations about it with their patients, because it happens. Maybe everything shouldn't be so sugar coated when you're pregnant because bad shit does happen to good people. It might scare the shit out of some people and open their eyes a little to the fact that pregnancy does not always end positively but is that a bad thing? Our society is so focused on being happy all of the time and ignoring the bad stuff that can and does happen that it does a great disservice to us as a whole. Especially because 25% is a big number.

Saturday, November 26, 2011

Got through that one

We knew the holidays were going to be tough. As much as I prepared myself for Thanksgiving, it still struck me in the back of the knees with a baseball bat. I honestly think it was three fold. 1.) It's the first "holiday" since Naya passed away and therefore the first one that she should of been spending with us, her family. 2.) Thanksgiving happened to fall on the 24th this year, so Naya would have been exactly 4 months old. 3.)We had such a good week prior, that things were bound to fall downhill from there.

But we got through it. Somehow. By means of alcohol and food coma. I don't mean to joke about that but it's true. I have basically spent this whole long weekend stuffing myself with food and alcohol to try and forget. I know I should be sitting here writing about what I'm truly thankful for but it feels too fake. I do have a great husband, a great son, a great family, a great job, great coworkers, etc. but I don't have Naya. I would trade everything I have (except Ty) just to have her here. But I can't. I'm stuck in this shitty position where I do have everything to be thankful for except the one thing that I want the most. And don't get me started on Facebook and having to read all of the bullshit that people are thankful for this year. Yeah, yeah, I'm glad you are thankful for your family and friends and la-di-da but somehow, I get the feeling that you are just saying that. I'm sorry but you have no idea. I don't think that anyone has a real idea until they have they experiences something as profound as a loss so great, that it puts anything else in perspective. I know I am being bitchy right now but whatever. I really don't believe that anyone can understand until they have experienced it. Believe me I didn't before - everything I said before was well-meaning words without a real sense of purpose. I'm sorry, but that is the truth.

Thank you guys for listening to this rant. I apologize if it seems like drunken ramblings but that's what I have to give right now. Just had to get it out. Hopefully, I can find some more positive ways of thought in the future. I can't wait until this holiday season is OVER.

Tuesday, November 22, 2011

Light

Staying busy has been good for us and we had a very busy last couple of days. Dan and I both worked late on Friday night (Dan very, very late) and worked Saturday morning and afternoon. Doesn't sound fun but it definitely helps keep your mind off things. I was quite proud of myself that I was able to make it through a whole show at work and deal with actually people. (I work in a performing arts center and a lot of my job has to do with interacting with the public, something that has been hard for me to do thus far.)

And then the fun began. Yeah, I actually said that. We had fun this weekend. On Saturday, two of our nurses came up from LA and we had a blast. We went to dinner on Saturday night and then wine tasting on Sunday. (We live in wine country.) We started off at Tobin James (which is a lot of fun) and then continued onto Clautiere aka the wig place. This winery is absolutely adorable and the best part, is they have bins of wigs for people to wear while tasting. We decided to switch wigs with every different wine and had a blast. Hopefully no one gets upset at me for posting this pic but I think we look adorable.

After Clautiere, we went to an adorable winery called Penman Springs that has two adorable women working there. I have to say, this might be my new favorite winery in Paso. They were so welcoming and hospitable. We had a blast despite the rain. Hell, we even saw a double rainbow. That's got to mean something good, right? What else does a double rainbow mean (and yes, I am parodying that youtube clip). We ended the evening with an awesome dinner and great company at Brooke's parents house. I think this was the first time that I could say we had lots of fun and felt like ourselves again. Thank you ladies. We love you. We are so lucky to have you in our lives. I'm glad that something good came out of this situation.

Anyway, yesterday I went to my OB to talk about the future which was probably not the best idea after a day of wine tasting and a 30 year-old body (draw your own conclusions here) but I'm glad I went. We discussed the idea of future pregnancies and laid out a game plan for when/if it happens. My doctor is so amazing and understanding. She said that we will do anything to make me comfortable and to releive as much stress as possible. I walked out of that office actually feeling excited about the future. Feels weird just typing that but it's true. I'm hoping for more bright days in the future. After living in such a fog for the majority of the time, it's nice to know that some days bring light.   

Friday, November 18, 2011

Body Image

I've been stewing over this topic for awhile but it was really brought to light to me yesterday. As all mothers know, your body takes a beating during pregnancy/birth. While you are pregnant (and believe me, I was guilty of this too), you worry about what your body will be like after having the baby. In most "normal" pregnancies, this is probably one of the #1 thing women worry about besides the actual delivery process. At least I did. I worried about stretch marks, fitting into my favorite pair of jeans again, if Dan would still find me attractive post birth, etc. I never once worried about losing my baby. I had fleeting, nervous thoughts every once and awhile but it never consumed me. I thought, like most "normal" people, that other people lost babies. My pregnancy was 100% normal, no complications, perfect ultrasounds, etc. so I was in the clear. Losing my baby was not something that could ever happen to me. To say I was naive is an understatement.

When Naya got sick and was rushed to a hospital across the state, I was 5 days post-partum and still recovering from her delivery. I literally had the clothes on my back and my purse and didn't come home for 2 months. I had nothing and was still healing and dealing with my new and very sore body. Granted, we had people from home come visit us and bring us clothes, books and other little things but I didn't have the luxury of easing back into the world in the comfort of my own home. None of my clothes fit me and my maternity clothes were just too depressing. I lived in sweatpants for a month (how I must have looked!) until I finally dragged myself to Old Navy to buy a pair of jeans that were two sizes bigger than I wore before getting pregnant. I looked and felt fat, tired and miserable which only added on to the emotional hell I was in.

Most women take awhile to return to their pre-pregnancy size, if they ever actually do. What makes it okay is that most women have a baby to show for their pregnancy. They can look at that tiny, perfect little human  that they created and forget about their stretch marks and the fact that their ass is two sizes bigger than they ever thought humanly possibly. Not so for someone who has lost their baby. Our fat asses have nothing to show for our pregnancy except huge medical bills, a cemetery plot and a broken heart that will never fully heal. Granted, my body is getting back to normal a lot faster than I expected it too but that's what happens when you lose a baby - you have a lot of time on your hands and exercise is a fantastic way to work through your anger.

So to all the women out there stressing about your post-pregnancy body image issues:
STOP. Take a look at the wonderful gift your body gave you and view those stetch marks with a sense of pride. If those physical scars are the only thing you have to worry about, please realize how lucky you are and how much worse you could have it. What happened to me could happen to anyone.

PS - I can't wait for the day that I can proudly display my fat post-pregnancy ass with a new baby in my arms. I am going to wear those rolls with pride.

Monday, November 14, 2011

Two Months

I miss you baby. More and more everyday. I can't believe you have been gone for two months. It's still too surreal.

Sunday, November 13, 2011

Ignorance is Bliss

I'm just going to start this off by saying that it has been a tough weekend. After weeks of calling the pathologists office daily, I was actually able to get through and talk to the pathologist that performed Naya's autopsy directly on Friday. He told me that he is hoping to finish the report in the next week or two. He also gave light to the fact that a preliminary report was and has been available since the day after Naya's death. This was news to me and I contacted both our social worker and Naya's attending doctor at CHLA who provided us a copy of the report on Friday night.

My emotions are spinning. I'm not sure how I feel about having this information. I don't really want to go into speculation as to what the report showed, especially because absolutely nothing is finalized but aspects of the report completely broke my heart. Despite earlier reports from the geneticist at CHLA, there still is the chance that Naya may have a genetic disorder. The point is, we don't know yet and probably won't until after the report is completed, if ever. Although I said that I don't want to speculate, this has caused my mind to start spinning. I know it's not healthy and I shouldn't worry about the future but I can't help it. Dan and want to have children. We would give anything to have a happy and, above all, healthy family and we might not be able to. This is devastating to me. The pure irony is that when Dan and I got married, I wasn't sure if I wanted any more children. We agreed on having one and Naya was our blessing. And then she died. And now, all I want, more than anything in the world, is to have a child with my husband. I'm desperate for it and terrified that we might not be able to. Tomorrow, I start looking for a genetic counselor. It just keeps getting better and better.

Thursday, November 10, 2011

Hope

I found this the other day and thought of a friend that also lost a child. The words are still making me cry but in a good way. I long for my butterfly, new and old.

"The butterfly has long been a powerful symbol across many cultures. It is a symbol of transformation, of the spirit and the soul, and of the unending cycle of life and death.

To the Greeks the butterfly was the symbol of the soul, and it was believed that each butterfly was a human soul searching for a new incarnation. The Celts also believed that butterflies were new souls seeking life. They believed that a woman became pregnant by swallowing these tiny butterfly souls.

The metamorphosis of the butterfly is a powerful symbol in so many ways for us when we are grieving. They are the beautiful tiny spark of life that came to us, lighted in our lives for a too brief moment before fluttering away. They are the hope that the transformation that loss brings into our life, can result in something different, something beautiful. We may not be the same at the end of our journey, but we have grown, we are able to see things that we could not before. They are the hope that we may swallow that butterfly soul searching for us, and hold a baby in our bodies and in our arms once more."

Tuesday, November 8, 2011

Irrationality at its best

Anger is a part of the grief process. Unfortunately, irrational anger is a huge portion of this. After you go through a loss of a child, the little "annoyances" of life seem so petty and trivial that they make you angry. I know I am experiencing this now. My irrational anger is definitely having an affect on the way I live my day-to-day life. People's ignorance, naivety and plain old stupidity annoy me to no end and I find it hard to deal with.

An example of this irrationality is that I find myself strangely annoyed at both pregnant women and new mothers. It makes me angry to see them out, holding their babies, posting pictures/info on Facebook, planning their baby showers. I am rational enough to know that I should have no anger towards them, that they are just celebrating the loves of their lives but it's still there. I know this is based on jealously and the fact that most women are blissfully unaware of the dark world that I am now part of. It makes me especially angry because I used to be that woman. I excitedly posted pictures of my pregnant self on Facebook, had two beautiful baby showers and busily prepared myself and my life for the baby that I so much wanted. And then, out of nowhere, it was all taken away from me. I could have been that woman but now I am just the mother of a child that died. I am empty and desperately wish that I could still be so naive to believe that nothing like this could possibly happen to me. But it did and now I have to deal with it.

For now, I have blocked myself from seeing the feeds of friends on Facebook that are pregnant or who have recently had a baby. I am still very happy for them but seeing their happiness hurts too much as it is a reminder of what I should have. I avoid the baby aisles of supermarkets, throw any baby specific mailings directly in the garbage can and go out of my away to avoid babies in public. I long for the day when I can be around babies again but I am nowhere close. Someday, I will get there.

Thursday, November 3, 2011

A Fake Normal

As I suspected, Halloween was hard. Very hard. In fact, it set me back quite a bit. I thought I could handle it. We carved pumpkins and even set up some of our Halloween decorations.  I had a big basket of candy ready for the trick-or-treaters and was mentally preparing myself all day.

Ty dressed up as Dr. Cube (don't ask, I have no idea but at least we had the costume from our 2 months at a hospital) and I picked him up from school and took him over to a friends house for his first year of trick-or-treating without me. Then I came home and Dan and I waited. After the first kid came, we looked at each other and just said "nope." We put the basket of candy outside and went to Chilis for some margaritas. And that was Halloween.

And then it was over. I made it through the day. One day down, the rest of my life to go. That's the part I hate so much about this. I'm not living my life anymore. I'm just trying to make it through the day. The thought just makes me even more depressed. I don't want to live like this. I don't want to be miserable and cry at everything. I feel like I am just going through the motions of life and not really living it anymore. I get up, I go to work (either at home or in the office), I do my work and I come home. And I cry. A lot. You'd think by now my body would be incapable of making anymore tears but they are still constantly there.

I honestly feel worse now then I did right after she died. In a way, I think it's because of the fact that I have to move on and I feel guilty. Like I'm dishonoring her by resuming my life like she was never a part of it. I know that's not the case but I do. And I don't want to move on. I would give anything to still be by her bedside in the hospital and be able to kiss her head again and hold her hand. I don't have any regrets about any decisions we made. I just wish we hadn't had to have made them. It's cliche but I miss her so much that it physically hurts. I just want to be holding my baby right now rather than sitting by her grave and grasping for signs that she is still with me.

Another thing that is eating me up inside is this damn autopsy report. Seven weeks and it is still not ready. I call the pathologists office every single day. They do not like me very much down there but tough. I am going to keep calling. I've also decided that if we don't have a report by next week, I'm going to move up the food chain and start talking to hospital administration. I've never been one to just settle for answers that I don't like - I take action. I've also decided that if I don't have a report in two weeks, I'm driving down to CHLA to demand it. I don't have a baby anymore so I've got some time on my hands. I know I probably sound pretty bitchy right now but I can't even begin to describe how not having this report is affecting my life. How am I expected to "move on" when I don't even have a grasp on why this happened in the first place? (Well, I have some ideas and it definitely involved some lazy ass people not doing their jobs but that's neither here nor there.) I know having this report is not going to be the end all of my suffering but it can at least help close a chapter. And I need at least one chapter closed.

Sunday, October 30, 2011

The First of Many

Before this year, I loved Halloween. The dressing up, the carving pumpkins, the celebrations of Fall. Everything. Now, I am just going through the motions to create a tad bit normalcy for my son. Yesterday, we went to the grocery store to get pumpkins (no pumpkin farm for us this year) and we carved them last night. I didn't cook the pumpkin seeds or anything, just let him carve his pumpkins and left it at that. When I was pregnant with Naya, I was really looking forward to shopping for a costume and dressing up my baby in for the first time. Instead, I bought a small pumpkin and we put it on her grave. I supposed that's what we will be doing for every Holiday from now on.

Perhaps that's why yesterday was so hard for all of us. Everybody else is going on with their normal lives of costumes and parties and celebration while we are sitting here in pain and heartbreak. I suppose this is just a preview of how the rest of the Holiday season is going to be for us. (Yea!) I have absolutely no urge to participate in the Holidays at this point. My goal is to just get through the next 2 months without a complete mental breakdown like I've had over the past couple of days. They have not been fun.

I did okay this week, I went in to work for a few days (four total!) and although I didn't spend the entire day there, I did it. I faced some of my fears. I also went to get my haircut on Friday - usually, not a seemingly big task but for me, it was like facing a firing squad. It went all right at first. My wonderful hairdresser also cuts my stepmother's hair, so she is aware of what happened and did her best to make it seem "normal." Until about midway through the cut when the girl who cuts hair next to her started talking to her client. The girl is about 4 months pregnant (which I could handle because she's not crazy big yet) but the client started talking to her about her profession. She is a nurse in the family birthing center at the Hospital where I delivered. Yep, figures huh? She started telling the girl that she should definitely choose her hospital over the other hospital in town because (and I quote) "it is much better and safer and we never lose babies." My hairdresser just looked at me in the mirror and saw the pain and anxiety in my face and said "I'm going to start talking about something else and I'm going to do it loudly." We spent the rest of the haircut talking loudly about which restaurants have the best Bloody Marys while trying to drown out the lady talking about how "wonderful" her hospital is. After my hair was done, I gave her a big hug and said "can you please tell her what happened when her client leaves and beg her not to go there?" She said she was already going to and that maybe me being in there at that particular moment wasn't just a result of my shitty timing but a blessing because I could provide a warning to someone else and hopefully prevent it from happening again. That's the only way I can choose to think of it without going completely crazy.

Ughh. Life. Please start getting easier. I don't know how much more I can handle.

Tuesday, October 25, 2011

After the Storm

Thinking up a title for these things is always a problem for me. I guess I have always had this problem - thinking up a poignant title for whatever I'm writing. This particular title is from a Mumford and Sons song of the same title. Pretty much written for me. I've had a hard day. I'm crying right now writing this.

Nothing hugely significant happened today. Just a normal day - normal for what is qualified as life now. Yesterday, Naya would have turned 3 months old. A huge milestone in the life of a newborn. I dropped Ty off at school yesterday, went to the gym for an hour (great for the aggressions) and then went to Trader Joe's and bought Naya a bouquet of flowers to put on her grave. (Sidenote - took out some of my "anger" on some dumb lady at TJ's. She unloaded her groceries into her Range Rover that was parked next to me and proceeded to leave her cart right next to my car. I was standing right there, so I walked up to her and put my hand on her arm and said "Don't worry. Since you are obviously too lazy to put your cart away yourself, I'll do it for you." Yeah, I never said I wasn't a bitch. My biggest pet peeve is when people don't put their damn carts away.) Anyway, I brought the flowers to the cemetery and sat there and talked to her for awhile and drove home and worked for awhile.

Today, I went into work after dropping Ty off. I actually stayed in the office until around 2pm. Great accomplishment for me. What really set me back was a conversation I had with our social worker from CHLA. When Naya died, we decided to have them perform an autopsy on her to rule out genetic issues in case we want to have another baby. I called the social worker today because they told us the results would take 4-6 weeks and it will be six weeks tomorrow. She told me that she had spoke to the pathologist today and that the results could possibly take another 6-9 months.

This fucking crushed me. 6-9 months! Are you fucking kidding me?! For me, these autopsy results represent an end to this. I mean, I know that this is going to emotionally stab me in the fucking chest everyday for the rest of my life but I was hoping for some sooner "closure" to at least some answered questions in a timely manner. But FUCK!!!!!!!!!!!! 6-9 months! More! Of this! Of not knowing shit and just torturing myself with questions! Of wondering if it is ever going to be safe to try again?! Of being stuck in the same god damn stalemate of not knowing anything! Of not sleeping and torturing myself with all of the what ifs! I seriously can't fucking take this. The past three months of my life have been absolute torture and now it can prolong this for an additional 6-9 months?! No. The Pathologist is getting a call directly from me tomorrow. I can be a persistent and annoying person when I want to be. Be prepared Pathologist. Be prepared.

Saturday, October 22, 2011

Checking In

Another week down. And what a week it's been. My sister was in town from Africa (she lives there - long story) and she kept me sufficiently occupied. We started off the week quietly. Dan went back to work and I worked from home. I actually ventured to the office for a few hours Tuesday morning. It was hard and I couldn't stay that long but I did it. It just felt eerie - almost like I was soundly back to my "old life" but with half my heart missing. I spent the drive home crying. That's pretty much how it is - act normal in front of other people and completely lose it in the car. Par for the course for us mom's with angel babies.

What else? I joined a gym. Been there a few times this week. It's nice to slip on some headphones and run on a treadmill. Release some of my aggressions. My fuse is so short these days and it's probably much healthier to expend my energy at the gym rather than blow up in people's faces. I can't handle people's ridiculousness right now. Problems just seem petty and pointless and my filter is almost non-existent. Something I need to work on and hopefully the gym (and my counselor) can help.

That was another thing I did this week - saw a new counselor. I really liked the other one I was going to but she was pretty expensive so I looked into some free counseling provided by our local hospice program. I definitely liked the new counselor but I could tell she was a little overwhelmed when I told her my story for the first time. It's really weird telling my story - it does seem almost unbelievable. Like a movie. When I'm retelling it, I feel like its impossible that I have lived through what I have. But I did and I am here, trying to move on and live.

Most of the time I feel like I'm just going through the motions of the day. Smiling when I'm supposed to smile, laughing when I'm supposed to laugh but not really feeling anything. Numb. I hope that this will start receding but the pain is still too fresh. The normal parts of my life that I enjoyed so much four months ago are so meaningless now. Hopefully, this too shall pass.

Now for the excitement of the week. Ready for this - it's a doozy. I was sitting in my office getting some work done on Thursday when I started hearing this weird noise by my desk. Went on for awhile and I every time I turned down my music to listen for it, it would stop. Finally, I figured out it was coming from my file cabinet (the one holding all of our "important docs" - you know, birth certificates, mortgage papers, tax returns, etc.) I opened the drawer and the files looked chewed up. Toni and I started lifting the files up and we saw it. A long skinny tale running toward the back of the file cabinet. Yep my friends, we had a mouse. Toni ran to the store and brought back some traps. We were going to put them in the file cabinet when we saw it again. A very LARGE mouse. A field mouse whose body was a good 8 inches (not including the tail). We screamed, shut the door to the sun room/office and called my dad in hysterics. He came over and tried to move the file cabinet, the mouse ran out and went under the couch. When we moved the couch outside, we notice tons of mouse droppings and that it had burrowed a hole in the couch and was probably living in it. We still aren't sure where the fucking thing went but at least I know it's not in my house.

Long story short, Dan and I spent hours cleaning and disinfecting the room. We scrubbed the floors, threw out the couch, wiped down each and every book in our bookcases, etc. I'm still not sure what to do about the files though. The mouse ate quite a few of them and peed and pooped all over the rest. I don't think I can throw these documents away (kind of need our Birth Certificates, etc.) so I'm still trying to figure out what to do. Oh, the joys of my life. Two steps forward and three steps back. Luckily, all these weird, crappy things that have been happening to us have just now become amusing. As I said before, after what we have been through, you can't sweat the small stuff.

Monday, October 17, 2011

And We are Back

Well, we are back from our trip to Puerto Vallarta. I had reservations about going at first but I am glad we went. Despite the Hurricane that hit early in the week (yes, this seriously happened. Remember, I have the worst luck in the world.) we managed to have a good, relaxing time. It was nice to get away to a place that: a) no one knows us and therefore doesn't know what happened and
b) small talk is almost impossible since my espagnol is terrible.
We spent most of our time in Mexico swimming. Even through the Hurricane. I would say I spent at least 5 hours a day in the pool. My hands are still wrinkled. It was a relaxing and reflective time for me. It's funny, when I was pregnant in Naya, I had the biggest urges to be in a pool even though I'm not a big fan of swimming. I think she may have been a swimmer if she had been able to grow up. In a way, floating on my back in the pool and looking up at the palm trees swaying while the rain fell made me feel physically connected to her again. Not to get all Freudian but maybe it was the womblike atmosphere of the warm pool that provided the connection that I am desperately needing. My body aches for her in a way I can't even attempt to describe.

And now, we are home. Ughhh. Home. Back to reality. Back to work (me from home and Dan from the office). Back to the fact that we are parents of a child that has passed away. As I said before, that was a definite positive of Mexico although in a strange way, it was also a discomfort. Unfortunately, that fact that we have lost a child is now and always will be a defining factor of our lives and personalities. And people can't tell that just by looking at us. I almost want to wear a sign that says "we just lost our baby - please be nice to us and ignore that fact that I might start crying over nothing in a moment." Because that's how it is. I can go through a good portion of the day without crying but it creeps up at weird moments. And it's weird for anyone who may be around me at that particular point especially if they have no idea what happened. I am just the strange lady crying in the grocery store line or eating dinner with her husband.

It happened quite a bit in Mexico too. I talked Dan into ziplining on Friday. He hates heights but trusted me enough to go and we had fun. I cried though. I was getting ready to go down the longest line in the park and the guide asked me if we were enjoying our Honeymoon. I told him that we weren't on our honeymoon and had been married for a year. He said "Oh, just on vacation then." I just smiled and let the language barrier act as my scapegoat. I really didn't want to get into a conversation about why were there in my broken spanish.  He strapped me to the pulley on the cable and gave me a push to send me accross. I cried the whole way.

Friday, October 14, 2011

One Month

It's been one month. The longest and worst month of my life. I wasn't planning on writing at all this week as Dan and I are gratiously taking advantage of the use of a family friends' condo south of the border but it's been running through our minds all day. Even though we did our best to distract ourselves (zip lining and corona) it's still there and I am sitting here writing on my cell phone instead of watching the sunset over the Pacific. Thank you for everyone who contacted us today and remembered one of many milestones that we have to get through. (i can't even begin to explain how much it sucks when the life that you used to love has become a life of just getting through the day. This is definitely not getting easier.) Your love gets us through this. Today, when we were on the zip line and waiting on a platform for our turn, we saw a hummingbird for the first time while we have been here. I know it was her. I love you baby and I miss you so much.

Friday, October 7, 2011

Misery Needs Company

I don't think anyone could ever possibly understand the excruciating pain of losing a child unless you have gone through it. It's completely indescribable but when you meet someone who has gone through it, they know EXACTLY what you are feeling. That pain is completely universal in this new world that I am grudgingly a part of. Right now, I am sitting here in the lovely home office that Dan put together for me during my eighth month of pregnancy and trying to get some work done. I'm listening to Pandora (which I do constantly) and the song Tears in Heaven by Eric Clapton just came on. I have long known that the song is about his son's tragic death but today, I felt it. I heard his lyrics for the first time. I felt his emotions and could completely, 100% relate. And it's exactly what I am going through. My baby's gone and I am, at least physically, still here trying to figure out what the hell to do with myself.

Please don't take it as I am suicidal or anything. I'm not. I'm sad but I wouldn't even say I'm clinically depressed. I am just trying to survive with a huge part of me missing. And it hurts. It hurts to see life going on around me, just as it was before. It hurts to see other's people babies or pregnant women and thinking why isn't that me? What did I do to deserve this? Why does everyone else have their babies and I lost mine. Am I being punished for my behavior? Am I being punished for not having faith? If I decide to have another baby, is this all going to happen again because it's what I deserve? It sucks really badly because I have a 4 week old niece that I can't bear to meet yet. It hurts way too bad and I feel so guilty about it. But I can't control it right now. It's funny. Sometimes, I tell myself that I'm not really going through this. This was all something that happened to someone else and I'm going to get my normal life back tomorrow. But then I wake up and everything is still the same. It sucks.

Today, I met with another woman in my area that is a friend of a friend who also recently lost her baby. It was both and wonderful and terrible to talk to her. Wonderful because she was great. We talked, we laughed, we cried. We got each other. Terrible because I had to meet an amazing person such as herself because we have both lost babies. That's how this whole thing has been. I've met an incredible amount of amazing people and made some amazing friends but all because I lost my daughter. It's so fucked up.

I also got the comment today that I have been dreading the most and that has caused me to become a bit agoraphobic. The coffee shop that we met at today was one that I would go to quite frequently while I was pregnant. I didn't even consider that and walked in and ordered my drink. (I would like to say that it was tea or even coffee but I ordered a beer.) The girl said, "Oh my gosh, the last time I saw you, you were so pregnant. How's the baby?" I just paused, dumbfounded. I mean, what do I say? She wasn't trying to be mean. She honestly had no idea and I had no idea how to answer without a) bursting into tears or b) sounding like a bitch.  I just said I had a little girl and we spent 7 weeks with her in the NICU but she ended up passing away 3 weeks ago. And then I apologized to her because the look on her face was so sad and surprised. And then I burst into tears and walked away. I am just terrified at how many times I am going to have to repeat this scenario.

Thursday, October 6, 2011

Mood Swings

I thought I was bad when I was pregnant with Naya. During that first trimester, Dan was so afraid to talk to me as he never knew if he would be dealing with a crying mess or exuberant mother-to-be. Although, I didn't really recall it at the time, my hormones were so out of wack, that I never know who I would turn into from one moment to the next. Dr. Jeckyl and Mr. Hyde was inhabiting my body. Luckily, it cleared up when I moved into the second trimester.

The feelings that I have now are actually quite similar. I am mostly a crying mess. Sometimes, I am an angry mess. Sometimes a lethargic mess. Sometimes a drunk mess. Sometimes a catatonic mess. I have, however, lost the exuberant part of me. She is long gone and it scares me that that part of me will never come back. I feel like I am just watching the game of life going on around me and I wonder if I will ever feel like playing in it again. My pain is so raw that even doing simple things like leaving my house and going to the grocery store involve way too much energy. Especially because I have to mask my feelings so I don't look like a crazy person. It is unacceptable to start breaking down in line at the grocery store (which I did) and start a conflict over the price of ground turkey (which I did too.) Sidenote: the people at Vons in Nipomo are not very nice.

I have spending most of my day, sitting at my computer in our home office. I do work most of the day and spend the rest of my time researching Sepsis and what happened to Naya. There is not a lot of information out there, especially because I'm looking for families that have gone through a similar situation. I have found some and most of their children pulled through because they were diagnosed very early on before even leaving the hospital. It makes me sad and mad but thankful that at least their children made it and they can offer me a little bit of information. Once the autopsy comes back, I can at least start trying to fit all of these puzzle pieces together rather the just connecting the edges.

I have also joined a number of online groups that deal with infant loss, since we have no physical groups in the area that are specific to infant loss. While these groups are helpful, some of them make me a little angry. Most sites lump miscarriages in with infant loss and I hate that. I don't, in anyway, want to discredit any pain that anyone might be going through but holding/touching/bringing home a seemingly healthy baby girl is so much different then losing a child in a first-trimester miscarriage. I saw her, I held her, I kissed her, I smelled the sweet scent of her skin and heard her cry. I have concrete memories of her laying in her crib, on my bed and in my arms. I physically saw the person she could have become. I have connected more with the SIDS parents even though they are going through a different struggle, as for the most part, their babies passed at home in their sleep and I had to sit through the hell ride of the NICU and watch my baby get sicker and sicker everyday. I realize that the end result is the same though - we have all lost a child that we desperately wanted and loved. We all feel empty and that part of us is gone and will never return. We are all part of this shitty club of child loss and it's one that we all would do anything to get out of. But we never can. We will always be parents who have lost a child. It happened and nothing can change that. We just need to somehow figure out how to possibly go on.

Monday, October 3, 2011

Over but Just Beginning

I know it's been a few days since I have written a post but we had a very busy weekend. On Friday, we buried Naya. We chose to have her cremated and we bought a beautiful pink marble urn for her remains. We had a short and private ceremony for our family and a few friends. I can't even describe how surreal and difficult that day was. Burying your child is not something I would want anyone to experience. I have been to the cemetery to visit her everyday since. I don't really say anything, just sit there and cry in disbelief that my child is really gone and in this grave. I know people have been telling me that she is not in pain anymore, which is true but I still think that this is a nightmare that I can't wake up from. Denial, yes I realize that, but reality is just too hard to deal with at this point.

I know others will tell me that she is in a better place and I really wish I could believe that. I don't really want to get into a whole religious discussion because, again, that is not the point of this blog, but I am not nor have never been very religious. I am not going to go into detail with my beliefs on here but lets just say that they haven't changed. Life is still a mystery that I don't believe we can ever figure out. No matter how hard we try to understand why things happen, we can never know for sure.

Anyway, enough on that. On Saturday, we held a beautiful memorial service on the cliffs overlooking the ocean. It was an absolutely gorgeous day and entirely fitting of my baby girl. We had so many wonderful people come out to support us and remember Naya's short little life. If you were there (even in spirit) thank you. We could literally feel your love and we appreciate it. We want to give a big thanks to my friend Ryan for doing a wonderful job officiating the service. I don't know how you did it man but we were blown away by the beauty of your words. You have a gift my friend. I also want to thank Melinda for the wonderful flowers and Lori and Connie for helping set everything up. You guys are amazing. Also big thanks for my wonderful family - my mom, Nancy, Bill & Bobbie for flying out here from Chicago to support us through this. You provided us with a much needed distraction and for that, we are incredibly thankful. Also to Brooke and Lisa, our wonderful nurses from CHLA, thank you for going above and beyond by being there. You both are remarkable people and as I said before, you are now stuck with us in your lives. Love you guys so much and hope I didn't just get anyone in trouble for calling you out. You have no idea how much you have helped us during this time. I will never, ever forget it.

The day was just perfect despite the little hiccup at the end. I probably shouldn't write this on here because it ruins the ambiance of the day but it is a perfect example of the luck Dan and I have. Immediately following the service, police began showing up and scoping the cliff out right behind us. Turns out that they had just found the body of a man that had been missing for a few days. Yes, I am serious. This really did happen. Un-freaking-believable but par for the course in my life at this point. I didn't let it bother me too much but I felt very sorry for the wedding that was setting up to take place after our event. You can't make this shit up folks.

I spend most of my days thinking (believe me, I wish I could turn my brain off but that is not going to happen for awhile - despite the prescription for Ambien that I have and am too afraid to take.) It's so strange how you never really know how wonderful people are until something tragic happens. The outreach that we have had is absolutely amazing and our family, friends and community have gone above and beyond to support us. It is truly mind blowing and we are incredibly blessed to have you all in our lives. Nothing can make this better but little things do help. I know that I have already grown from this. I am definitely not sweating the small stuff (like the wonderful "discovery" at the memorial). It just doesn't matter. After what I have been and still am going through, all the old grudges and heartaches and little bullshit just seem so inconsequential. So pointless when we all have such a short time here and we never know when it's going to end. I hate that I have had to go through this in order to see this but I am going to be grateful for any positives that come out of it. I can't comprehend how to handle this any other way. But, as I said in another post, grief has many stages and changes rapidly. Perhaps this is just how I am feeling today. Everyday is a new struggle with a different emotion. Can't wait to see where I'm at tomorrow (yes, that is sarcasm).

I miss you baby. You are never out of my thoughts.

PS - Sorry for the stream of consciousness form this post took. Hope I didn't lose anyone in my rambling.

Wednesday, September 28, 2011

Murphy's Effing Law

Grief is such a screwed up process. That's the really crazy thing - we thought we were riding a roller coaster in the NICU. That was a kiddie ride compared to this. One minute I can be laughing at something lets say my dog is doing and the next I'm sobbing my heart out.

That's pretty much what happened this morning. I was sitting in bed, watching the Office for the millionth time since that seems to be all I want to do lately, when Dan came in. He had just gotten off the phone with the mortuary and there was a little problem. Last week we had planned to gather all of the stuff we wanted with her when she was cremated and picked out a little outfit for her to wear along with stuffed animals and letters we wanted with her. We were planning on dropping all of this stuff off today along with the urn and memorial necklace we had ordered. Story of my life, the plans did not fall into place and the mortuary had "accidentally" already performed the cremation. I lost it. It was just too much. After everything we have been through and all the loss of control we have felt over the last two months, this was just the last fucking straw. We can't even control how we would like her buried. And now it's too late. It's already done. Can't go back in time on this one. It's final. It tears me up inside. So long story short, Dan and I have decided to bring everything to the burial and drop it in the grave. It's not ideal but we don't have any other choice.

The obituary ran in the paper today too. That's another surreal experience. Writing an obituary for your child is one thing but seeing it in print is another. Here is a link, if anyone is interested in reading it. http://www.legacy.com/obituaries/sanluisobispo/obituary.aspx?n=naya-jane-manalo&pid=153863242

I just want to take this opportunity to, again, thank everyone for their following and support during this awful journey. It is all appreciated. Our baby was a beautiful miracle and it is truly amazing how much love she has given us in her short little life.

Love to you all
Jamie

Saturday, September 24, 2011

Haunted

Today has been rougher to me than the past few. After I wrote last night, Dan and I went outside to watch the lightening storm - a rare occurrence in our neck of the woods.We both sat there and cried as we watched the sky light up every 15 seconds or so while the wind chime played its delicate music. We went to bed soon after and I had a dream about her. I should probably explain the significance of this, to me. Every time someone close to me has passed away, I usually have a dream about them within a month or so of their passing. They know they have died in the dream and we talk about it, cry, hug and say goodbye. This one was a little different. I dreamt that the hospital called us and said that they made a mistake. That she hadn't really died and that we should come right away to get her. We came and I held her while Dan removed some of the lines that she had in her leg and chest. She opened her eyes and looked at me, smiled and said "hi mommy." It was strange because in the dream, it didn't seem like she knew she was dead. She acted like it was all a mistake and she was alive and better, older even. I woke up in tears and have not really recovered all day.

I think what haunts me the most is the image of her on the day she died. I don't even really want to describe how her body looked, with the grotesque swelling and all of the tubes and wires poking out of her poor, tiny frame. I want to block out the image of us being handed her to hold while she passed. How she gave a little quiver and her eyelids flickered as she took her last breath. How I was screaming and crying from the emotional pain of that moment. It scares me that I am never, ever going to emotionally recover from this. I know that I have to go through this now but I will ever be able to go a whole day without being unbearably sad? Will I ever be able to experience happiness again? Will I ever feel like rejoining the world again? What our lives have become is simply terrifying to me. I loved my life and I know I will never have it back but will my new normal ever be enough?

Friday, September 23, 2011

Surreal

The title pretty much sums up this experience. Surreal. I still feel like I am in a daze and that this can't possibly be happening to me. Maybe it's the whole denial part of the grieving process but I just can't comprehend it. Sometimes, I feel like she's still inside of me, moving around, kicking me in the ribs and just there. It's possibly because she did so much damage in there before she was born (my ribs are still sore and actual kicked out my xiphoid process in utereo) but I feel like it's more psychological. Or maybe I just want to feel a connection to her. Who knows.

Today, Dan and I spent a lot of time outside. He worked in our yard, planting trumpet vines and removing this ugly tree while I watched. We noticed that a hummingbird has been hanging around the trumpet vines lately even though we have never seen one in our yard before. We both thought the same thing - maybe it's her. We went over to my dad's house for dinner and my stepmom told me that earlier in the week, a hummingbird got into their house. On two separate days. Maybe it sounds corny or again, maybe I am just looking for anything, but I want to believe it's her. I could see her being a hummingbird. Small, beautiful and graceful just like she would have been as a girl. I will take it.

We also put the finishing touches on her burial and memorial service today and wrote her obituary. We are having a private burial  on Friday, September 30th and a public memorial on October 1st. The memorial service will be held at the Dinosaur Caves Park Amphitheatre in Shell Beach, CA at 11am and everyone is welcome. It's going to be a very simple service but hopefully, quite beautiful. Here is a link to the park's website for anyone who is interested. http://www.pismobeach.org/index.aspx?nid=288 The picture that is shown on this page is the park itself and the amphitheatre is the concrete circular thing on the left hand side. It overlooks the cliffs of Shell Beach and is quite beautiful. Naya loved the ocean. She spent her first days after being conceived swimming with me in the waters of the Caribbean outside of Panama so I know she will approve.

Thanks again everyone for your support and thoughts. We love you all.

Wednesday, September 21, 2011

Anger

Warning: This blog may contain adult language and material. Please be advised.

Welcome to the five stages of grief. At least that's what the counselor told me that I visited today. (She actually didn't put it like that. She was very nice, understanding and helpful.) Today, I am going to discuss anger and it is a directed rant towards the hospital we delivered in and our pediatrician. Over these past two months, we have obviously been in contact with a lot of different people, many of them being medical professionals. They have all stated the same thing - this shouldn't have happened. Naya should have never been released from the hospital in the first place without pooping. The pediatrician should have never given them the green light to release her. She displayed all the signs of sepsis the first day she was born. They should have caught it. This should have been prevented.

I know being angry at the situation does not bring Naya back. I know that the what ifs are normal and a terrible part of the grieving process. But that doesn't mean that I can prevent them from happening. Someone should have done their damn job instead of dismissing her (and me) for being lazy. Someone should have listened to us. Should have cared. That was why I was so angry when I got the bill from the stupid peds office. BTW, they called me yesterday. I didn't answer - didn't recognize the number. I looked it up afterwards. They didn't even leave a message. Probably realized who it was and didn't know what to say. What do you say? "Sorry I fucked up and killed your kid? You still need to pay your bill." Assholes.

That's another "fun" part of this. The bills (and late notices, for that matter) are starting to roll in. We haven't gotten the big one from CHLA yet but I am sure that's going to be a doozy. $225,000 just for the hospital portion when she spent those 11 days in Santa Barbara alone. That doesn't include the doctors fees, pharmacy bills, x-rays, etc. We've been told not to think about that yet but how can we not? She spent 5 weeks at CHLA. I see a price tag in the millions in our future. So now, not only did we lose our daughter, but now we are going to lose everything. How the hell is anyone expected to pay for a bill that size? I'm sorry but I wasn't born with a trust fund. I don't play a professional sport and I sure as hell didn't win the lotto lately. So how does that work? I don't want to get political on here because that is not what this blog is about but this is what is fucked up about our health care system. The number one reason people declare bankruptcy in the United States is due to unforeseen medical bills. Guess who is probably going to be joining that statistic?! But I won't worry about that right now. Just let those bills and late notices pile up on our kitchen counter while I pick out cremation containers and burial plots. Awesome.

I apologize for the rant and hope I didn't offend anyone. Just needed an outlet for my anger. Thanks for letting me rant.

Monday, September 19, 2011

I meant to write last night but was in absolutely no condition to put together a coherent thought. Yesterday, we attended a fundraiser for Naya that was put together by some wonderful friends and family. We weren't sure if we were going to attend until the last minute or so but figured that it was the best way to get over seeing people we know. That's one really crappy part of this - rejoining society when we know that everyone is looking at us and feeling sorry for us. Not that I can blame them, I feel sorry for us. It's just hard because I know no one knows what to say to us. There really is nothing to say. We lost our child. It's the worst thing that can ever possibly happen to someone. I know that. They know that. It sucks.

But we went to get it over with. And it was a beautiful event that people worked really hard to put together for us. The outpouring of support was incredible. And surreal. I'm sure we looked like zombies but we really tried hard to pull it together and even had a bit of fun. We have such a wonderful group of family, friends and community and we are so lucky in that aspect. It doesn't take the pain away but it did help.

Afterward, Lindsay and Phil came over and made us mommy soup and hung out. I drank entirely too much. I know that is not the way to deal with our problems but last night I didn't care. Lindsay and I passed out on my bed just holding each other. It helped Linds - it really did but I was paying for it this morning. Worse than the ever famous bacardi night, that's for sure. I spent the entirety of the day in my bed again. I'm really going to have to work on that. I made an appointment today to see a counselor on Wednesday. I just wish I could speed up the healing process. I hate being like this. I hate being so sad and depressed. I hate feeling like the little things are overwhelming. Like doing laundry or cleaning my kitchen is akin to climbing Everest or something. But it is. That's not going to change yet.

Both Dan and I are taking some time off work for the time being. I don't know how we are going to afford it but I can't go there yet. We have started making some arrangements as well. The funeral home is going down to pick up her body tomorrow and we are going to meet with the cemetery to discuss the burial. We have decided to do a private burial and then hold a memorial service the next day in Shell Beach. I like the idea of not having something in a funeral home. Too sad and I don't want it to be all about death. I want it to be about remembering - not only her but also about remembering to cherish all the people we love. After this is all over, we have been talking about getting away somewhere for a couple of days. Our lives have been so stressful for the past two months that we are both going crazy. I've heard that being in a NICU is as stressful as being in a war. Lots of people develop disorders. I hope it's not going to come to that with us but who knows. I swear I can still hear the monitors beeping, even now at home. The images are awful to deal with too. I'm trying not to think about them but you can't help it. My mind just won't turn off.

Saturday, September 17, 2011

It's strange being home. The moment we walked in the door on Thursday was terrible. It almost made me wish that I had never been able to bring her home. All of those memories are here and came flooding back to me. We had to take her to the emergency room so fast that day and had expected to come home right away so everything was still laying out how we left it. Luckily, family and friends had cleaned up around our house and put all of Naya's things into her room and shut the door. I haven't brought myself to go in there yet. I walk by her room and can't help but cry. It's too painful. Ty asked me last night if it was okay if he went in there and read her stories from her bookshelf. I told him that if that makes him feel better, he's more than welcome to but I can't go in there. I will go in there someday. I want to sit in her chair and rock and cry. Not yet but I will get there.

I've spent most of my days so far lying on my bed. That is also painful, as Naya spent most of her short time with us in our room, on our bed or in her bassinet. Sometimes I feel her there. It makes me cry, picturing her, lying on my chest sleeping. I know now that the ecoli was probably cursing through her bloodstream during this time. I just hope she wasn't in too much pain. I keep going over everything in my mind and wishing I had handled things differently. I wish I had acted on my gut instinct that something was wrong. I wish I had insisted to her stupid pediatrician that no, she wasn't just being "lazy" because I had gotten an epidural and forced them to run further tests. Don't judge me for this but we got a bill from the pediatrician's office today. I opened it, ripped off the bill form and wrote "please stuff this up your ass. Thanks! :)" and put it in the mail. I know it was childish but, sadly, it helped. Maybe it will make them think about it the next time. It was a good direction of my anger and grief for the time being. So are bloody marys.

Our dog also seems to be helpful to us. I think he can sense our sadness and grief. That was one beautiful part of walking into our house. My dog had already been picked up and was sitting in his spot by the front window. He saw me, did a double take, and jumped up with an excited look on his face. When I walked in, he ran to me and started giving me kisses with his little curly tail wagging away. He's always been clingy (he's a pug - we have always called him "the velcro dog") but he's even more so now. It's amazing how animals can make you feel better. Their complete, unconditional love is remarkable.

I've been sitting outside a lot for the past two days. Dan set up our outside area awhile ago with my hammock from Nicaragua and plants and wind chimes and I find it very peaceful. There is a wind chime that we got as a wedding present hanging next to the window of Naya's room. As I was sitting there, the wind was softly blowing and making the most beautiful melodic song. It may be corny but I believe it was her - playing me music while I cried. I miss you so much Naya. I wish you were here with me. I love you.

Thursday, September 15, 2011

Thank You

Today has been a whirlwind for me. My emotions are all over the place and I really don't know how to deal with all of it. So I am going to write. Maybe not every night, or maybe multiple times. I don't know. Writing has always been very cathartic for me so I am going to continue doing this, despite the fact that she's gone. My fingers just hurt typing that. It's still so surreal. I can't go 2 minutes without thinking about her. Or crying. Or clutching my head in pain and confusion and disbelief. Some people may criticize me for displaying my pain in a public arena but I don't care. Like I said, it's cathartic.

But that's not what this post is about today. This post is to thank everyone for your thoughts and prayers and condolences. It may not seem like a lot but Dan and I have read every single message sent to us. We may not respond, but believe me, we have noticed. You can look at your stats on page views on blogger and it had 13,000 hits last night. Crazy. Thank you for all of your comments on here, on Facebook, via text, on the radio (thanks Dave, we were listening and it was beautiful) and even on babycenter.com (Here's a link - http://community.babycenter.com/post/a29408939/in_loving_memory_of_naya-?cpg=15&pd=-1) Like I said, it may not seem like a lot but we are reading it. And appreciate it. It warms my heart to know that Naya has touched so many people in her short little life. She had caused people to rethink their lives and hold their families and friends closer. She has caused people to come together in love rather than hate. That's more than most people accomplish in a lifetime. If her story helps even one person prevent this from happening to their baby, then it was worth sharing it. It may not cure my heartache but it helps. Naya has taught me patience and that I have a choice in life. I can choose to be sad and depressed (which I am, don't get me wrong. This is going to be a loongggg healing process) but I can also choose to go on and never take life for granted. To kiss my husband and son as much as I can and tell them how much I love them. To be thankful for the wonderful people there are in this world despite all of the hardships we face. It may not seem like it but we are going to get through this. For Naya.

Thank you. We love you all.

Wednesday, September 14, 2011

i carry your heart

i carry your heart with me

by ee cummings 
 
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
                                                      i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)
 
In loving memory of Naya Jane Manalo. July 24, 2011 - September 14, 2011

Tuesday, September 13, 2011

Elephants

This is a hard one to write. Naya has had a pretty terrible day. Her lungs are just so bad. That's really it. They are bad. Horrible. Probably unfixable. It pains me to even type that. I know that we have really tried to stay positive during this whole thing and are still trying but it's hard to do so when that giant elephant in the room keeps punching you in the face. Her lungs are just not healing themselves. She developed another pneumothoryx today. She already has two chest tubes and we are not going to stick another one in her. Therefore, we need to hope and pray that one of these two chest tubes can find the air that is stuck in her chest and get it out. Kolette and Tara (and earlier today, Brooke and Lisa) have all tried to position her to do so. It's sort of working right now but for how long? How much more of this can her poor little body take? How can it possibly break out of this nasty, vicious cycle? I want to believe that she can. That her will to survive will be able to persevere. But it's hard in light of all the concrete evidence. That nasty elephant in the room keeps sticking it's fat ass in our faces. I have to force my fingers to type this but I honestly don't know if she is going to make it through the night. I want her to. I would give anything to switch places with her right now. Let her live a life that doesn't involve tubes and ventilators and drugs, even for a second. But I can't - that's the reality. I can't do anything. I can sit her and watch her sats go up or down and try to will them to move in the direction I want but that's it. I can watch while our wonderful nurses try to position my baby in a position that might save her life but I can't even help them. I can't hold her. I can't even cry because I'm so exhausted and emotionally drained. I can't do anything but pray that I'm not sitting here, watching her die.