What Not to Say When a Child Dies

Like the rest of the nation right now, I am filled with anger and sadness in regards to the tragic school shooting in Connecticut. I am absolutely disgusted that anyone would and could be capable of committing such a horrible act and my heart is breaking for the families of all the victims.

Like most people, I am pouring through Facebook right now and I'm seeing post after post about people praying and thinking about the victims of this tragedy. I hope they are receiving support and continue to for the days, weeks, months and years to come. Believe me when I say that the tragedy today has forever changed their lives and they will need as much love and support as they can get.

I do have to say that I have seen some posts that are not entirely helpful and a few that have made me want to bitch slap the poster. I realize it's difficult to put yourself in a grieving parent's shoes. Unless you have experienced the loss of a child, it is really, really hard to know what is the right thing to say and what to avoid. I can tell you from experience and from talking to many, many, many other grieving parents there are a few standouts on what NOT to say:

God has a plan/Everything happens for a reason
I hate this sentiment. Prove it. Show me a copy of this "plan" and then maybe I'll buy it. But unless you can tell me the exact reasons why this had to happen to my child, I don't want to hear it. In fact, I don't ever want to hear it. To parents that are grieving, we can't and don't want to think anyone would allow for a plan that required our child dying. All you are doing is minimizing our pain in order to make yourself feel better by coming up with some greater purpose of our tragedy. Please don't.

They are in a better place/God needed your child in Heaven
Actually no, I needed my child here and the best place she could be is in MY arms. No one needs my child more than me. And I'm sorry, but if you really believed that they are in a better place, would you like to trade situations and have your child be in heaven and mine here? I didn't think so. Again, saying this is probably way more comforting to you than it is to the grieving parent. Please don't.

Time heals all wounds
Wrong again. It doesn't. You will never, ever, ever, ever, ever, ever get over the death of your child. You just learn how to deal with the pain and better hide it but it never goes away. Just don't.

I know how you feel, I lost my mom/dad/grandparent/dog
There is no greater pain than losing a child. I'm sorry but there just isn't. Unless you've been here, you can't even begin to understand. Just please don't go here.

You are young/You can have another child
We actually had someone say this to us withing minutes of Naya's death. Um no. Sorry. Children aren't disposible. You can't just replace them like lightbulbs. You may go on to have other children but you never, ever forget or stop yearning for the one you lost. Please, please don't go there.

You are so strong - I would just die if I lost my child
Really, so are you saying that I didn't love my child as much as you do because I didn't kill myself after they died? I know you are trying to commend me on my strength but you are just unintentionally making me feel more guilty about my child dying and how I am handling it. Believe me, if you were unlucky enough to be in my situation, you would find your way through because you really have no other choice.

So what should you say? First off, just know that absolutely nothing you can say will make them feel better. It's not you, it's just the way it is. For me, the best things said to me were simple. "I am thinking about you and here for you" is probably the best and safest thing to say. "I am so sorry," "I love you," and even "This really fucking sucks" are also completely suitable. The most important thing is just to be there. Let them cry, let them scream, let them laugh, let them vent. Make them meals, help around the house, get them drunk, just be there for what THEY need and not what YOU need. They might not appreciate it right away but they will when looking back on the situation.

My heart goes out to the victims and their families in Newtown, Connecticut.

Let it Out

One thing that I completely hate is that I can not look at pictures of Naya. It hurts too much. Not that I have many pictures of her (I seriously have maybe 20 where she is not sick) but I can not look at them without sobbing. I hate it. I want to be able to look at my baby and feel some joy but everytime I do, it kills me. I think it's because it makes this all seem real. Most of the time I can fight it and pretend that this never happened. That's honestly how I get through the day - I keep myself so busy that I can ignore the fact that my daughter is dead. But when I find myself with extra time and do things like sit down at the computer and look at the pictures of her, it tears up my heart. It makes me realize that she was here, she was alive and these are real pictures of my daughter who is dead. I had her, I was holding her at one time and now she's gone and I will never hold her again. Ugghhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh.

I hate this. I want my daughter here. I want to hold her and give her a kiss. I want her to exist in something other than pictures and my memory. I want this nightmare to be over.

I try to stay postive and most of the time, I may seem fine but somedays I just have to let it out. This life sucks. It hurts and I want my daughter back.

The Moose

Wow. I can't believe it's already November 9. I have been completely lacking in the writing department lately and for that I apologize. I've got a little one that does not enjoy napping or sitting at the computer. Typing with one hand sucks anyway. I am actually writing (most of) this during a 2am feeding with one hand on my phone. I am lucky my writer's block does not occur at night.

Everything with Rhone is going well. The kid is a moose and healthier then can be. We had his two month check up today. The kids is 13lbs 9oz and is in the 85th % for weight and 50% for height. I actually thought it was going to be more (from weighing him at home) but it's not. Good news for me because that means I am two lbs lighter than I thought I was too and I will take that. I'm doing good with my weight loss but I would like it to come off faster (don't) we all. Rhone's also developing pretty quickly - already rolling over and holding his head up in a 90 degree angle for prolonged periods of time. The doctor said he wouldn't be surprised if he starts fully rolling around soon. He also said it looks like we have an early developer and could probably expect him to hit milestones earlier. Overachiever. All-in-all, he's a big, strong, healthy boy which means the world to me. He seems to be taking to his vaccines well (no reactions so far) and the best news is that the doctor believes that if he was going to have any issues with his colon or intestines, they would have already presented themselves. That made me feel 1000 times better.

I can't believe it's already been two months though. Sometimes, it feels like he's been around forever and sometimes it feels like it's only been days. It was kind of a hard time for me when he hit the day that he was officially alive longer than Naya. It made me really sad. Who knew that it would affect me? I think that's one very strange thing about grief - you never know what events are going to set you off. Sometimes it's obvious things like birthdays, anniversaries and Holidays but sometimes it's more subtle - like the day your rainbow outlives the child you lost. It's those days that really knock you off your ass because you can't tell they are coming and prepare for them like you do those bigger, more obvious days.

I've been keeping myself busy, as usual. Right now, my big project is planning a service for the Compassionate Friends annual candlelighting for bereaved parents coming up in December. It will have speakers, musicians and a reading of names of our children. I really hope it will be a beautiful and healing experience for members of our community. The candlelighting is a worldwide event that takes place on the second Sunday of December every year at 7pm in your local timezone. The idea is to create a wave of light around the world for the children who have been lost.

If you would like to attend a candlelighting in your area, please check here for more info. http://www.compassionatefriends.org/WCL_Misc/2012_services.aspx 

If you would like your child's name read at my ceremony, please let me know and I will be honored to include them.

Deja Vous

This past week has been a tough one for me emotionally. I came across a family on Facebook that was going through a very similar situation as to what we went through with Naya. Same infection, same hospital, same lung issues. Hell, it even looked like they were in the same room. Watching their situation unfold really took a toll on me. I could feel their blind hope and terror as they watched their baby struggle for its life and it brought me back. I felt the emotions that I felt 15 months ago, watching my daughter go through the same thing. Riding that NICU roller coaster and how it could go from joy to pure terror instantly. My heart was breaking because I knew how my situation turned out and I was willing the same not to happen to them. It kills me that anyone has to go through this.

Unfortunately, the baby passed away. I watched the announcement on their Facebook page and I was brought back to those early days right after Naya died. How completely lost I was. How I felt like I was in some nightmare of a world and I would surely wake up because it wasn't real. I remember thinking that if I could just figure out the right moves to make, I could change it. I could bring her back and she wouldn't be dead anymore. I just needed to figure out a way to wake up and I could fix everything. I remember feeling so hopeless and crazy. I didn't want to get out of bed. I was an unfunctioning, shell of a person and, honestly, I wanted to die. The only thing that even partly held me together was the fact that I didn't want to put my family through what I was going through. That is pretty much what got me through those first few days/weeks/months.

Thinking back to how low I was during that early time made me realize that, even though it doesn't feel like it, I am recovering. I function. I get out of bed. I don't feel as helpless. I even laugh and experience joy again. I have established something of a new normal. I know I can't change what happened and I've accepted that. I still hate it but I'm not stuck in that place where I believed that I could do something to bring her back. And that is so much of what early grief entails; It's you searching for a way to get out. Someone told me that's what you are doing the first year - searching for your baby, your old self, your old reality. After that year, you sadly realize that you those things are gone and you need to figure out a new way to live. It sucks but quite honestly, it's the only way I've figured out that will let me survive. I am slowly learning to live again all be it with a huge gaping hole in my being. The hole isn't quite gaping anymore but every once and awhile the scab opens, the pain seeps out and I hurt.

Advice for the Rainbow Pregnancy

Rainbow Pregnancies are hard. They take a lot out of you, both physically and mentally. Physically, they are tough because most rainbow pregnancies occur soon after the loss. Whether you experienced a miscarriage or a full-term loss, because of the proximities of the pregnancies, your body is physically going through extra stress. The same goes for the emotional side - you have all of the typical worries of a pregnant woman but they are magnified because you are living proof that bad things can happen. Multiply the physical and emotional stress with your pregnancy hormones and you find yourself in an insanely difficult situation.

Lately, I've been running into a lot of women who are very early on in their rainbow pregnancies and are looking for advice on how to cope. I, obviously, don't have an answer that will work for everyone but I wanted to share what worked for me and helped me get through the longest nine months of my life.

1. Give up control
Throughout my first trimester, I was a nervous wreck. Every time I went to the bathroom, I was sure I was going to find that I was miscarrying. I realized around the beginning of the second trimester that beyond getting proper medical care and keeping myself healthy, I couldn't control what was happening with my baby. This realization made me relax (a bit) and I knew all I could do was take the pregnancy day by day and be thankful for each one I had. Sometimes it's liberating to give up control.

2. Enlist your physician
I've said it before and I will say it again, I could have never gotten through this pregnancy without my doctor. She viewed the pregnancy as a team effort and did everything she could to take some of the stress off me, including extra visits, extra ultrasounds and maximum support at every visit. I just went back to see her for my 6 week check-up and she sat there and cried tears of happiness with me while saying "We did it!" Having a compassionate and understanding doctor who sees that you are not the average pregnant mother and offers you the support that you need is key.

3. Find peer support
I was lucky enough to have a very close friend pregnant with her rainbow the same time I was. We were able to talk about everything from the physical aspects of our pregnancies to the more complex emotional issues of the pregnancy and grief combination. I realize how rare this is and that I was lucky to have it. If you can, reach out to support groups, in real life and/or online, and seek out others who are also going through rainbow pregnancies. Sometimes it's nice to hear that others are having similar feelings and emotions so you realize that you are not going insane.

4. Expect feelings of deja vous.
This is especially important if your pregnancies are close together. I had Naya and Rhone within 14 months of each other and spent the majority of the last two years pregnant. There were many, many times where I thought "didn't I just do this?" and confused the two pregnancies. These moments can be especially hard and emotional when you are going in for ultrasounds, buying baby items or fixing up a nursery. The deja vous  can cause a variety of feelings from bittersweet joy to unbelievable pain. These feelings are normal and don't feel bad about having them.

5. Expect some guilt - I feel as if this is somewhat inevitable when you are having a rainbow. You feel guilty for enjoying anything to do with the new baby because you don't want to feel like you are abandoning the one who died. I even put off buying anything or fixing up the room until the last month of pregnancy because I felt that by doing these things, I was erasing Naya. I felt so guilty because I didn't want to seem like I was letting her go. These feelings are so normal. I just kept (and keep) telling myself that Rhone is Naya's brother - he is the closest thing to her and she would have wanted me to love and care for and enjoy him.

6. Be easy on yourself.
As I've said, rainbow pregnancies are HARD. It's okay to feel overwhelmed and scared. You are doing   something that is hard for normal women all while grieving the baby you lost. You are going to have days that you are excited. You are going to have days that you feel like you can't do it anymore. Again, all of this is normal and you shouldn't feel bad about any of it. Be easy on and even spoil yourself during this time. You are going through something incredibly difficult and you deserve a break, especially from yourself.

7. Do what works best for you.
I think, most importantly, is to do what is best for you to get through the pregnancy. For me, it was kind of ignoring the fact that I was pregnant. I needed to mentally block it out in order to get through the day to day. Sometimes, I felt bad about it - like I wasn't connecting with my baby - but I realized that what my baby needed most was my sanity intact and my body healthy to take care of him. If you need to put up the block, do it. If you need to bond with your baby and celebrate every moment, do it. Do whatever it is that YOU need to do to get through this nine months (within reason - stay away from the obvious like drinking, drugs, etc.) and do NOT feel guilty about it.

Pregnancy and Infant Loss Awareness Day

The Pregnancy and Infant Loss Awareness Movement began in the United States on October 25, 1988 when then-American President Ronald Reagan designated the month of October 1988 as Pregnancy and Infant Loss Awareness Month. Today, October 15, is Pregnancy and Infant Loss Awareness Day. While I am glad that there is a day to recognize our lost babies so I don't feel so alone, it is terrible that there needs to be one. The truth is, not every pregnancy arrives at a happy ending. As I've said before, one in four pregnancies end with a loss - most of these being miscarriages but still a significant chunk who are babies who have been born.

The United States has the highest infant mortality rate of all the other developed nations. We are ranked #40 in the World, behind countries such as Cuba or Lithuania. Our ranking also keeps falling every year (we were ranked # 12 in 1960). One out of every 233 children will die under the age of 1 in the US, a number that is ridiculously high. And its not due to lack of care - our nation spends more on healthcare per capita than any other and also has more neonatologists than all the other countries in the world.    

The number one cause of death of infants in the US is prematurity although SIDS and, sadly, asphyxiation also rank highly. In the United States, SIDS is the leading cause of death for infants from one month to one year of age and kills about 2,500 infants a year. SIDS is defined as the sudden death of an infant under one year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene and review of the clinical history of the family and infant. Most deaths occur between two to four months. SIDS can not be prevented and there is no way to predict when it will happen. (Don't get me started on how misunderstood SIDS is. Drives me nuts how it is tied to accidental suffocation. Not the same thing people. But I digress. That's another topic I can delve into in another entry.)

The United States also has an abnormally high prematurity rate. More than 15 million (or 12 %) of babies are born premature in the US every year. The US ranks 131 in the world for premature birth rate - the same as Somalia, Thailand and Turkey. More than one million of the babies who are born premature will die as a result of complications. That is a staggering number and needs to change (hence my commitment to help the March of Dimes). The walk is coming up soon and I will be asking for your help again. More information will be coming soon!

So today, on Pregnancy Loss and Awareness Day, remember the 1 in 4 who never got to hold their child. Or gave birth to a child that they never got to see take a breath. Or held a child they never got to take home and live their short life on a hospital. Or had a child that passed away suddenly and without warning at home. Put yourself in our shoes and remember that pregnancy and infant loss is real, is occurring more often and can happen to anyone. Even you. Even me.

At 7pm this evening, I invite you to join me in lighting a candle in memory of all of the babies lost. This is a worldwide event and hopefully, you can be part of a wave of light in remembrance.

My love goes out to all of the angels that left us too soon and all the families that are dealing with this loss. Hug your children a little tighter today in honor of us who can't.

I love you Naya. I miss you so much.

One Month

Having a rainbow baby can be described in many terms. It is beautiful, it is heartwarming, it is joyful, it is life-saving but most of all, is bittersweet. Oh, just so bittersweet.

Today, Rhone is one month old. I can't believe it's already been a month since he was born. A month since my world started to light up again. I am completely in love with him. I love watching every moment of his day. I don't want to put him down or take my eyes off him. Despite the fact that I can't wait to see how he grows, I am enjoying living in the now because I know he won't be this young forever. Whether it be him peeing on me while changing his diaper or smiling while tickling his feet, I am cherishing every moment I have with him, especially cause I know it could be gone in the blink of an eye.

That's what makes life bittersweet. As I hold Rhone and watch his first smile, hear him coo at me while I hold him on my chest or even feed successfully in the middle of the night, I can't help but feel a little sadness mixed in with the thrill of seeing my child thrive and grow and hit these developmental markers. It reminds me that I have another child that didn't get to hit any of these milestones or do any of these things. And it hurts.

Those are the moments that I have to force myself to shut off my brain. There are times when I am sitting there, rocking my beautiful baby after he has finished his meal and my mind starts to wander. I think about how much I love him, how much I enjoy holding him and how I never want to let him go. Then I think about how I have had to let one of these beautiful babies go - I had to do the unthinkable. I know it's weird because I have obviously gone through it, but I can't not physically comprehend how I was able to let her go. How I was able to come through her death still breathing with my sanity (mostly) intact? Just thinking about the pain of ever losing Rhone is excruciating. How the hell did I ever survive the loss of my daughter?

And then I have to stop and go back to living in the moment and enjoying my son. My rainbow. One of the people that has saved my life and is helping me go on. Someone that lets me catch a glimpse of what I lost - a gift that is so beautiful yet so painful. So bittersweet.

Happy one month birthday little man.

Anxiety

Having a newborn is exhausting for anyone. Not sleeping combined with the pressure of being responsible for a tiny, helpless humans every need is a huge stressor for anyone, even an experienced parent. When you mix in the fact that you have lost a child and are very much grieving, it's an insane combination.

I know every new parent gets stressed about many things. They may wonder "Is my baby getting enough food?" "Why is my baby so damn fussy?" "Is his breathing sounding normal?" The questions just go on, especially when we are working on minimal hours of sleep and dealing with roller coastering hormones. When you have a rainbow though, these stressors are magnified. Instead of wondering if the baby is getting enough food, you convince yourself that they're not eating enough because they have an infection and are going to get really sick and die. And if they are eating a lot, you start thinking that maybe they ate too much and they are going to spit up while they are sleeping and aspirate it into their lungs which will cause them to get pneumonia and die.

You worry about them not pooping for a day and, even though your doctor tells you that its normal behavior for a  newborn, you convince yourself that they now have a bowel obstruction and it's going to cause an infection and they are going to die. Or you hear them rapidly breathing and, though the books say that is normal, you are convinced that something is wrong with their lungs and they aren't getting enough oxygen so they are going to die. Not to mention the fact that you get up multiple times a night just to make sure they are breathing because you have convinced yourself while you are lying there straining to hear their breath, that they have somehow suffocated themselves with their blanket or have become a victim of SIDS.

Yes, all of these thoughts and more go through my mind on a pretty much hourly basis. Yes, I realize that I am overreacting and that the chances of anything happening are slim. But it's hard to believe that everything is going to be okay when you have been on the shitty side of the odds. I feel like I have limited time with my son and I am just waiting for the proverbial shit to hit the fan. I know it sounds really morbid but I can't help it. I have watched one of my children die. I know the worst can happen to anyone because it happened to me. I know I am not safe from the realities of the world. It makes it hard to believe that everything is going to be okay. 

I know this sounds sick as well, but my fears are part of the reason I am taking as many pictures and video of him as I can. I want something to see, to watch, to listen to, just in case. It's something I didn't do with Naya and as a result, I have absolutely no video of her and a handful of pictures. I regret it so much and don't want to make the same mistake.

I wonder if this fear ever goes away or if I'm going to have to live with it forever.

1 Year

A year. I can't believe it's already been a year. Sometimes, it seems like it happened yesterday and sometimes it feels like it was an eternity ago. The worst part is that sometimes it even feels like it never happened. Like she was a dream that ended in our worst nightmare. No matter what it feels like, the fact is that it's been a year. Naya died one year ago today and our lives changed forever.

I wish the memories of this day would subside. I hope that on the years to come I will forget the feeling of walking into her room and seeing her saturations hovering in the 70s and the look on her nurse's face when she saw us and we knew it was time to let her go. I wish that I could forget the emotions that ensued as we made that agonizing decision. The physical and emotional pain as we waited for family to make the three hour drive to the hospital to say goodbye. It still makes me sick that we were sitting there waiting to let our daughter die.

I wish I couldn't still hear myself wailing as she was handed to us alive for the last time. I wish I could close my eyes and not see her gasp for a last breath as her eyelids fluttered. I wish I couldn't hear the doctor call her time of death as her body stiffened in our arms.

I wish she was still here.

It's been a year since my daughter died and my heart is still in pieces. I still wish that I could wake up and that it never happened but I no longer believe that's possible. It's been a year and I still cry every single day although I can now control when and where I do so. It's been a year and even though I have my rainbow, I still avoid babies and pregnant women because it still hurts. It's been a year.

It's been a year and I thought that it would bring some clarity but I'm still angry. I'm angry at the hospital for not following standards of care and releasing her. I'm angry at the stupid bitch of a pediatrician for completely dismissing our valid concerns, ignoring her symptoms and being very, very complacent with her care. Mostly, I'm still angry at myself for not being more insistent that she receive the best, like I did with her brother. I am angry that I didn't have the foresight to realize that I should have delivered at a hospital with a NICU because they would have recognized what was going on. I am angry because I failed her. I am still so angry and it's been a year.

It's been a year and I still I wish I could hold her again. I wish I could have seem her smile and heard her laugh. Hell, I wish I could hear her cry. I wish I could have enjoyed every milestone of this past year and seen her sit-up and crawl and walk and talk. I wish she could meet her baby brother. I wish we could hold both of them in our arms. It's been a year and I want that year back with her in it.

It's been a year. It's been a fucking year.

Rhone

Wow. I have been absent for awhile! I have a good excuse though. On September 5 at 1:52am, I gave birth to a beautiful 7lb 9oz baby boy. His name is Rhone Nayin Manalo and he is absolutely perfect. Rhone means "that which runs" or river and Nayin is pronounced like Nigh in and means Bright Eyes in Indian. (It's also an obvious homage to Naya.) He's also very healthy. He's eating and pooping and doing everything normal newborns should do. He actually pooped within the first 6 hours or so after birth. A nurse was in the room with us when we opened that first poopy diaper and started crying with us. She told us that she had never seen parents cry over the first poop before and it was touching.

Speaking of the nurses, we had a wonderful and amazing birth experience this time around. My OB (gosh, I love her), had made sure that the labor and delivery staff knew our story and everyone went above and beyond to make sure that Rhone was thoroughly checked and that we were comfortable with everyone and everything. The on call pediatrician even called a Children's hospital to double check if there was anything he should be specifically doing to check Rhone's digestive system and make sure that his bowels were in working order. Every nurse took the time to check him thoroughly while taking vitals and treated us with so much love and compassion. I truly can't say enough good things about how wonderful everyone was. I am so thankful. It was amazing.

The only hard part was that Rhone had jaundice. He had to be brought to the nursery to be placed under the bili lights and could only spend feeding times with us. It was very tough to be separated from him for that 24 hours, especially because he was in a bed similar to what Naya was in while she was in the NICU. It brought back a lot of hard memories for us (PTSD is a bitch) and we had to keep telling ourselves that he was fine, jaundice is super common and he was in a nursery and not a NICU. Luckily, it only meant an extra day in the hospital and we were able to be released at the same time.

Physically, I am doing very well. Healing is going much more smoothly than it did for either Ty or Naya and I am ready to go back to the gym and start reclaiming my body. Mentally, I am doing well with some hiccups. I can truly say that I am feeling real joy again and the smile on my face is genuine rather than forced. My grief feels like it has changed a bit as well - it's still there, still intense but not constant. Perhaps I am just distracted with Rhone and the work and happiness he has brought or perhaps it's because it's almost been a year since Naya died but I do feel a change of some sort. I am feeling somewhat happy and excited about life again. I never thought I would be able to say that.

Not that the happiness doesn't come with a price. This whole experience with Rhone's birth and all the extra precautions taken have also made me cry. I wish I could go back in time and insist that Naya receive the same care. It has made me realize even more what a shitty deal she got and how much she didn't deserve the hand she got dealt. I wish I could have protected her better. I wish I knew then what I knew now. It makes it hard to fully enjoy my son without feeling guilty about the life my daughter was denied. I still miss her. I always will and I wish I could have both of them. Life can be very bittersweet.

Freaking Out

I hate this. I am having a shitty, emotional day (okay like two weeks now) and I am driving myself crazy. As of today, I am 38 weeks and 3 days pregnant. While I am uncomfortable at this point, it is nothing compared to the mental torture I am going through. To put it bluntly, I am freaking out and I really can't think of a way to stop other than delivering this child (which will bring on a whole new set of worries but one step at a time here.)

Before I had Naya, I was prone to anxiety. There were a few times when I had panic attacks and would actually drive myself to the hospital and sit in the ER, just in case. Over time, I learned to manage my anxiety (mainly by cutting out caffeine and getting off the pill) and once I got pregnant with Naya, I hardly ever got anxious. After she died, I expected my anxiety to return full force and was surprised when it didn't. Now is a different story.

I have been pretty good this whole pregnancy. The first trimester was rough. I was sure that I was going to miscarry and I was constantly checking for blood and second guessing every cramp. Once I hit the second trimester, I mellowed and the rest of the pregnancy, I was fairly calm. Until now. Everyday is kind of torturous. When I don't feel the baby move, I freak out. I can't sleep. I am up crying a lot of the night or having panic attacks. I am so scared. I don't think I can deal with another dead baby and I am so scared that it's going to happen again. I just want the baby here so I can double check that it's okay all the time without an expensive hospital bill attached everytime. (Yes, I've been to the ER...I'm that pathetic.)

I realize that what happened with Naya was a fluke incident with the chances of it happening again akin to getting struck by lightning. Twice. That's all well and good but what about all the other more "common" ways babies die? Who says that can't happen to me. Cause guess what? I no longer live in that naive "everything will be fine, these things happen to other people and not to me" world. These things can happen to anyone at anytime. Why couldn't it happen again?

Sometimes I don't think it helps that I have completely engulfed myself completely in this "baby loss" world. Don't get me wrong - this wasn't a mistake. I love all the other loss mommas I have met. They have been my saviors and I really don't think I could have gotten through this far without them. It's just that I now know literally hundreds of women who have lost their babies (not to mention older children). You learn everyone else's story, which is just as tragic and unique as your own. And you can't help but think, "oh fuck, this could happen to me." I know that I am never "safe." My baby can die. Anytime and of a variety of things. And it's fucking stressful. I'm drained.

Another Step in Making Change

I apologize for taking so much time between posts lately. I am absolutely exhausted. 37 weeks 1 day pregnant today and I am feeling it. The way I am carrying this (bigger) baby is really having an affect on my body. I can manage to get myself up to go to work but that is about it at this point. I get home and I am DONE. It's a real struggle to cook dinner for the family and keep the house clean at this point. I tried to sweep the living room today and I had to lay down afterwards because my back hurt. I am looking forward to not being pregnant anymore and soon. My poor body needs a break.

I know a lot of people have wondered what we are doing with the whole legal situation right now. I can't go into that quite yet but I did want to share a meeting Dan and I had last week with the Vice President of Medical Affairs at the Hospital where I gave birth to Naya. It was quite interesting and, honestly, a good experience. I went in there expecting to be placated and brushed off but was pleasantly surprised when the opposite happened. He was very forthcoming, apologetic and honest. He admitted that there were faults in what happened and took responsibility for them. He also apologized, which I know sounds like a small gesture, but it was one in which we were really appreciative of. No one has done this so far, especially not the old pediatrician. It was bittersweet to hear but it helped. Nothing is going to bring her back (believe me, if there was something I would have tried it) but it helped to hear that we did everything we could have and other people screwed up. Multiple times. Ugh.

He also told us that some steps were being taken to prevent this from happening again. There was and is going to be another internal review process, especially concerning the behavior of the pediatrician. We are not legally permitted to know what occurs because of the process but he told us that sometimes physician's privileges are revoked until they go back to school to "relearn" procedure. He also told us that the hospital is planning on creating a new position in their labor and delivery department to help ensure that this does not happen again. They are hiring a neonatal Nurse Practitioner to act as a liaison between their nurses and the doctors. This person would be in charge of looking for inconsistencies and acting on them. (In our case - this person would have seen that the nurses noted that Naya hadn't pooped and wasn't eating and it would have been her job to raise the red flag, despite what the doctor might have ordered.) We were very glad to hear this and are thankful that the hospital is taking this seriously. Our hope is that this will prevent other families from having to go through a similar experience. I wish we didn't have to be poster children for change but since I can't change what happened, I have to do something. It gives her life some purpose and that helps. Somewhat. I still would rather have her back.

Cleaning out the Room

Hard to believe but I didn't even realize what the date was today until about Noon. Then it hit me - Of course that's why I was feeling like crap today. It's the 14th. Duh. It's funny how that kind of automatically puts me in a mood, even when I don't realize what day it is. It's been 11 months since the last time I held my baby girl in my arms and I kissed her goodbye.

We've actually had a lot of things going on in the last week or so that have kept me busy and emotional. On Sunday, Dan and I took a huge step and cleaned out Naya's room. I had been gradually working up to this - I bought bins a month ago and a pretty pink memory box a few weeks ago. I've also been putting things for the new baby into the room. (Not a lot of things but I have bought a few items like a new car seat and stroller as well as some "rainbow" hats and stuffed animals.) But on Sunday, we decided to just do it. We basically sat down and made three piles - Keeping for the new baby, giving away and storing. We decided to keep a lot of items - the crib, the rocker, the dresser, the swing, plus anything that she hadn't directly used (toys, bumbo, Ergo, etc.) We also made the decision to keep all of the bedding and some of the decor, which was something we had gone back and forth with. On the one hand, we wanted this baby to have their own stuff but on the other, we wanted them to share something. We decided that we will repaint the room next weekend and personalize it to the new baby with new wall art, etc. We made the same decision with the clothing and blankets. Anything that was specifically made for her or that she wore, we packed away. Everything else we kept.

In the giveaway pile, we put the stroller, the car seat and a couple other items. Nothing was actually wrong with these things but they just have awful memories associated with them. The car seat was the last place we saw our daughter in a "normal" way - meaning without tubes and vents keeping her alive. I didn't think we could handle using these things for the new baby, so they are going to a woman's shelter.

The last pile was probably the hardest. This pile contained everything we had and wanted to save of our daughter. Her baby book, her footprints, her bag of hair that they cut off in the Hospital to treat her bed sores. The outfit that we originally brought her home in. Balloons that people had sent after she was born saying "It's a Girl!" Presents that were sent to our house after we had left for the hospital that we had never opened. Her princess bear and unicorn that were on her window sill in the hospital. The hair bows we changed every day. The blanket that she had been wrapped in after she died and we held her for hours. The newspaper articles written about her. The guestbook from the funeral. Dan and I sorted all of these things and more and put most of them away into a bin in the garage and the rest in the memory box that is now sitting on a shelf in our living room. I think that was the hardest part for me - my daughter's life fits into a bin and a small box. It hurts.

But we got it done. And next weekend, we will finish the room as best we can for this rainbow that will be here very, very soon. I was planning on writing more tonight but I will have to continue tomorrow. My back is yelling at me to go lie down and I figure I better listen, especially after I had to spend some time yesterday having a non-stress test at the hospital. (Everything was fine - the baby is usually a wiggle monster and was barely moving. I wanted to be safe rather than sorry.)

Another Flashback

I literally think that I'm living in some sort of warped universe where time has slown down just to torture me. It's only been two weeks since Naya's birthday. It feels like an eternity. Everyday is just dragging on and I am tired, not only mentally but physically, since I am nearing the end of this pregnancy during this mentally draining time period. That only adds on to the stress. I am 35 weeks and 3 days right now and carrying a large baby (they are guessing about 2lbs bigger than either of my other children). My body is sore, my mind is polluted and I am just plain tired. I would really, really like this month to end. I am so tired of being patient.

However, yesterday was Ty's 11th birthday and that was a happy distraction. He went to the water park with his summer program during the day and we went for sushi afterwards, followed by a special birthday apple pie. (All his choices - yes, my son has interesting tastes.) We spent a lot of time shopping for special presents that meant a lot to him and he loved every second of his birthday. It was nice to hear that it was the best birthday ever and I don't think it was just the hormones speaking. Last year, his birthday was awful. We were in Santa Barbara and Naya was not doing very well. We were able to sneak out of the hospital for a dinner the day before but we didn't have time to get him gifts or anything. He got a card with cash because my little sister took him to Disneyland on his actual birthday. I didn't even get to see him that day and this year, I felt we had so much to make up for. It hate thinking about how I didn't get to make his debut into the double digits special for him. It hurts. I know he understood that we did our best in the worst of circumstances but it still hurts.

That brings me to today. Along with the emotions that always seem to come after a significant day, today was very hard for another reason. One year ago today was the day that Naya was airlifted to LA from Santa Barbara. I feel like I've relived that day over and over again in my head today. I feel like it was just yesterday - I can't believe it was a freaking year ago. I remember walking into the hospital that morning and the nurse that was on duty freaking out because her blood pressure was super low and she couldn't bring it up. I remember panicking along with her and wondering what the hell was happening - my baby was supposed to be getting better, at least that's what they had told me. I remember the attending coming and talking to us and telling us they were transferring her down to LA because she might need dialysis. (I didn't know it at the time but they were thinking she needed to be on ECMO, something that they didn't end up doing because she was too sick. ECMO is essentially a sort of dialysis system for your heart and lungs. It's crazy and scary and a last resort option. It is so ironic to me that she was to sick to go on ECMO. Here's a link if you are curious as to what it is: http://en.wikipedia.org/wiki/Extracorporeal_membrane_oxygenation. I had no idea this existed until we were in the NICU.)

I remember waiting for them to decide how they were going to make the transfer. It went back and forth from ambulance to helicopter for awhile. They eventually decided to use a helicopter and we waited for the team to arrive from LA. While we were waiting, Dan went to the place we were staying and packed up our stuff, since we weren't allowed in the chopper and were going to drive our car down to LA. The team got there and they loaded up Naya for transport, with my sobbing the whole time. Dan and I walked with them out to the ambulance that was waiting to take them to the airport, where the helicopter would take off. We said goodbye to our baby and watched them drive away. It was one of the most heart wrenching moments of my life. After they left, we got in our car and began the 100 mile drive to LA - at 5:00 on Tuesday. If you know anything about Southern California traffic, you know that means a fun time. The worst part was sitting in bumper-to-bumper traffic on the 101 just outside of Santa Barbara and watching that blue helicopter come from behind us and fly to the South. We watched it in tears until we couldn't see it anymore.

It took us around 3 hours to make that 100 mile drive. Luckily, one of the nurses on the transport team had taken my number and called us both when they landed and also when she was settled in her room to let us know her status. We were able to see her that night and meet a couple of her wonderful primary nurses that would spend the next month caring for her. We also had to scramble to find a place to stay, as there was no room in the Ronald McDonald House for us. Funny story though - the hospital had just moved into their newly built building and offered to let us stay in the old hospital, which was empty, for the night. We politely declined. (We ended up staying with one of my sisters friends who lived in West Hollywood.)

Wow. Writing all that seems like I am describing a scene out of a movie. Sometimes, it's hard for me to believe we experienced what we did. Even now, looking back a year later, it still seems so surreal.

The day it all went to hell

The past two days have been emotional for me. Unfortunately, I think it is going to continue for the next 7 weeks. I knew it was coming and I actually expected it to hit harder so I am thankful that is not the case, at least as of yet. But I know it's coming. And I am scared. I really think at times that I am suffering from a bit of PTSD.

I should probably step back and explain a little. As many of you know, we had Naya at home with us for 5 days before she was admitted to the hospital. Those 5 days were hell because she wasn't feeding or pooping but at least, at that point, we didn't think she was going to die. According to our pediatrician (whom we saw 3 times), she was just being a lazy newborn because I had an epidural. Obviously, she is not our pediatrician anymore. I'll get more into that some other time though. That's not what I intended to talk about about right now.

Anyway, so yesterday marked the one year anniversary of the day we brought Naya into the emergency room - otherwise known as the day it all went to hell. I obviously wasn't writing at that point in time and I don't know if I have ever spoken of it but that day was probably the second hardest and definitely the most confusing day of my life. Everything just went so terribly wrong so quickly that even now, a year later, I have a hard time comprehending it.

After we spent the first five days of her life force feeding her and not getting any answers from her ped, I got fed up and insisted we take her to the ER at about 5am on July 29th. When we got there, the ER staff didn't really know what to do. They hooked her up to an IV because she hadn't been feeding and ordered tests and xrays. They asked us a bunch of questions and discovered (after an abdominal xray), that she had a blockage in her bowels and ordered a transfer down to a hospital that performed neonatal surgery. While we were waiting for the ambulance, Naya's bowels released all over me as I was holding her and a few minutes later, she began projectile vomiting bile onto Dan. We later learned that this was probably the moment of her demise, as this was the point where she aspirated it into her lungs causing the pneumonia. It could have possibly been prevented if the ER had inserted a simple NG tube when we arrived (and told them she had been vomiting) but they didn't. The poor kid had all of the odds stacked against her.

When the staff finally got her stabilized enough for the transfer, both Dan and I were pretty shaken. We had no idea what was happening and were more terrified than we have ever been in our lives. I also don't know if I have ever talked about this but Dan actually held Naya in the ambulance during the 90 minute trip to Santa Barbara. I sat up the front with the driver. When we got to the hospital, I held Naya in the ER while they tried to stabilize her before moving her to the PICU. This was the last time we held her while she was still alive. I didn't know it at the time but her stats were dipping dangerously low and she was dying. It took them awhile to stabilize her and they finally got her over to the PICU. There was a flurry of doctors and nurses rushing around, yelling at each other and ordering various things while Dan and I stood there in shock, not knowing what was happening to our baby. She had been fine two hours ago! The doctor eventually had us leave the room in the company of a Chaplin and a social worker. We didn't realize it at the time but we now know it's because she was dying and they were trying to save her life and didn't want us in the way. While we were gone, they intubated her, started her on some drips and rushed her to surgery. It was at that point that they finally told us how critical the situation was and that she might not make it through the surgery. We sat there in shock, sobbing and hyperventilating while waiting for the doctor to come back and tell us whether she was dead or alive. When they came back and told us that she had made it through the surgery, we were ecstatic. We thought the worst was over and that they could fix her. We didn't realize how wrong we were.

I wish I could forget the feeling of walking in to see her and she was hooked up to a million IV's with a ventilator breathing for her tiny, little body. I don't know how many of you have seen what a critically ill baby on a vent looks like but it is one of the most traumatic things to see in the world. Your immediate reaction is to start crying. There is a reason we have never shared a picture of what she looked like in the hospital on it out there. My heart breaks just thinking about her like that. My beautiful, perfect baby girl wasn't supposed to be hooked up to machines keeping her alive. It was a terrible moment that I will never forget as much as I would like to. I am still reeling from it. I don't know if I will ever understand. I don't know if I want to. Sometimes I just want this nightmare to be over. I don't want to relive what happened a year ago everyday for the next 7 weeks. I want to forget but I can't.

First Birthday

Yesterday was Naya's first birthday. Sometimes, I think the lead-up to a significant day is worse than the actual day. I've spent the last few weeks shuffling between being extremely anxious, irritable and emotional - all because I knew her birthday was coming soon and I was afraid. Afraid of the emotions that were going to come up on that day, afraid that I wasn't going to do enough to honor her, afraid that I wasn't going to be strong enough to make it through the day. I did but it wasn't easy.

The panic started on Monday evening. I went into labor with Naya around 10pm on July 23 and I tried to force myself to go to bed before then so I would be asleep when that time hit. I took two Tylenol PM (don't worry - they are doctor sanctioned), took a bath and went to bed. I didn't fall asleep though. I sat there and pictured myself feeling those contractions that I felt a year ago. I pictured my water breaking like it did as I laid in the same spot and how excited Dan and I were. I remembered how my contractions started picking up soon after and Dan rushing to get our stuff together and dropping Ty and the dog over at a neighbor's house. I could feel those contractions I was having as he raced to the hospital and lied to me about how close together they were coming. And I cried. I cried because at that point a year ago, I was so excited for the change that was about to happen. And I was so incredibly naive.

The Tylenol finally kicked in and I fell asleep. At exactly midnight, our puppy Buena decided to wake us up even though she has been sleeping soundly through the night for weeks now. I didn't know what to think but they do say that dogs are more observant than humans. Maybe she was here and Buena sensed it - I would love to believe that and I am going to choose to at this point.

We got Buena back to sleep and I eventually fell asleep again with every intention of sleeping in and not waking up until late morning. But my inner-alarm clock woke me up at 6:30. I gave birth to Naya at 7:10am. At 6:30, one year ago, I was getting ready to start pushing. Dan woke up to me shaking and sobbing and we held each other and cried. At around 7, we went outside and sat by our hummingbird garden, holding each other and crying as we waited for her birth minute to pass while two hummingbirds started their early morning feeds.

The rest of the morning passed by quickly as we looked at pictures and video of her and cried. We went and picked up a floral arrangement, balloons and cupcakes and brought them to her grave. We sent cupcakes to the NICCU at CHLA. We also decided to make our contribution to the name gallery by visiting four area beaches and taking a picture of a letter at each one. (This not only made for some beautiful photos and family time but also helped kill time.) Here's what we came up with:

Sand - Pismo Beach, CA

Seawood - Avila Beach, CA

Rocks - Montana de Oro - Los Osos, CA

Drift wood - Cayucus, CA

We actually had an enjoyable time - especially visiting some of the beaches we hadn't gone to in awhile. It was a beautiful day outside and we were able to spend it together as a family.

We got home and were pretty exhausted so we rested with the dogs for a bit, ate dinner and took Chinese Wish Lanterns out to Oceano State Beach to launch. Unfortunately, there was a slight wind so we weren't able to get them to fly but a friend of mine (another grieving mother) went out around the same time at a different beach and also launched one for Naya and her son.

All in all, it was a hard day. I cried. A lot. And I missed my baby and ached for her, more so than I have done in awhile. But I feel like we celebrated her and gave her a birthday that she deserved. We had so many people reach out to us yesterday and remember our daughter and told us how she changed their lives. I am so proud to be her mother and so thankful for all of the wonderful people in our lives that helped make her birthday special and helped us get through it. I don't think I can write anymore through my tears right now, so I am going to leave it at that. Thank you, everyone, for your love and support.

Here's a link to the name gallery again - I am in shock and awe at all of the amazing submissions. Incredible.
https://www.facebook.com/media/set/?set=a.10100503210953075.2563996.6408804&type=1&l=b803bf367a

In response to the Colorado Shootings

Like everyone else, when I woke up this morning and the first thing that I heard was news of the horrific shooting in Colorado last night at the Dark Knight Rises premier. And again, like many others, I have scoured the Internet looking for news and information to try to make sense of this disgusting and tragic act of violence.

Obviously, we all have the same initial reaction to this news. We wonder how someone could be so sick to commit a crime as atrocious as this. We think about the victims and our hearts go out to their families who are dealing with losing their spouses, friends or (choke) children. We wish we could find a way to help them in their greatest hour of need and respond through prayer, thoughts and monetary donations.

And then, we turn to other means of comprehending the tragedy - blame. I was originally going to talk about all of the posts I have seen chiding parents for bringing their children to a midnight showing of a PG 13 movie but Heather Spohr beat me to the punch and literally took the words out of my mouth with this wonderful and beautifully written piece http://blogs.babble.com/babble-voices/heather-spohr-more-spohr/2012/07/20/stop-victim-shaming/ so I will turn my focus elsewhere - blaming this tragedy on the religious tendencies of this nation.

It has always disgusted me when I hear of various religious groups blaming events on the actions and faith (or lack of) of the America public. Obviously, Pat Roberson and Jerry Falwell come to mind as the greatest offenders. They have both rather famously blamed a number of events (September 11, Hurricane Katrina, the earthquake in Haiti) on feminism, homosexuality and liberalism by saying that God is punishing the United States for tolerating these "lifestyles" by inflicting these tragedies. I have already seen a few statements mirroring these sentiments in connection with this latest shooting.

Rep. Louie Gohmert of Texas stated that the shootings are the result of "ongoing attacks on Judeo-Christian Beliefs." Brian Fischer, a conservative talk show host on American Family Radio, said "We have forgotten God. That's why all this happened" and blamed the Supreme Court for taking prayers out of school. Sigh.

I don't care what your religious beliefs or political leanings are, statements like this do absolutely nothing to help the victims makes sense of this tragedy. And they don't need to hear it - believe me it does way more harm then good. All they are doing is turning a tragedy into a political situation instead of remembering that people died and their families are suffering. I am sure that many of the families (religious or not) are wondering why their God would allow something like this to happen and they sure as hell don't need people telling them that it's because kids don't pray in school or because America is becoming more tolerant of homosexuals. What they need is love and compassion in their greatest time of need. They need your tears, thoughts, prayers and understanding and not your religious or social agendas.

My heart goes out to the victims of the shootings and I send strength and love to their families. You are all in my thoughts.

Prep Work

While this has been the longest pregnancy known to man (at least that's what it feels like to me!), Dan and I haven't really done much to prepare for this baby. I think a lot of it is because of fear. We did the whole preparing for baby thing a year ago and we ended up with a room full of baby stuff and no baby to use them. The thought of setting something up for a new baby is very daunting and scary. We can't go through this again, I really think it might kill us.

For the past two weeks or so though, I have relaxed a little and let myself consider that we might actually have a baby around in 8 weeks. I've ordered a few things, including the car seat today, and bought a few outfits and hats for pictures. It scares me that I am jinxing myself with every purchase and I am purposely spacing them out but at least I am doing it. I just have a few more things left on my "have to get before the baby comes list" including a new stroller, carrier and bassinet but that's it. We have decided that we are going to reuse (can I even really say that since she never really used anything) all of Naya's things except for the things with negative connotations or that she directly "touched." The things that hold bad memories for us (her swing, stroller, car seat and bassinet) are getting donated to a local women's shelter and her clothes, bedding, decoration and other personal items such as stuffed animals and certain blankets are going into bins. Most of the clothes we bought for Naya were gender neutral and she never wore them, so we are keeping them for nugget. We will decorate the nursery again after nugget is here and healthy. Everything else is staying because she never really used her stuff - most of it is still in their original boxes. Baby steps.

We also toured the hospital that we will be given birth at last week. Although my doctor is the same OB that I had with Naya, she recently moved offices and I will be giving birth at a completely different and brand new (literally - it opened in June!) hospital. We are very glad about this for multiple reasons - mainly that there is obviously no way in hell we will ever go back to the hospital Naya was born in due to their negligence but also because this hospital is new and a state-of-the-art facility with a brand new NICU. It runs laps around the piece of crap, dirty ass hospital we gave birth in last year. The hospital staff was really great to us during the tour and even let us stay afterward to tour the NICU (We took a tour with a bunch of other people). We have been assured that the nurses will be aware of our situation when we arrive for the birth and that they will do their best to make us as comfortable as we possibly can be.

I also found a new pediatrician yesterday and I think he's going to be a very good fit. I started off by explaining what happened and he listened, asked questions and was very understanding. He recognized what our previous pediatrician had done wrong and told me what he would have done differently. He told me that he understands how nerve-wracking this is going to be and encouraged me to call or stop in anytime with problems, questions or concerns. I think what solidified my decision was that he offered up the fact that he has also lost a child (stillbirth) and that my story really hit home for him. He said that he and his wife also chose to have another one right away and how hard it was for others to understand that the new baby was in no way replacing the baby they lost. Although it's been years, hearing about a child loss always hits him right in the heart and makes him feel like it happened yesterday. He asked how I was holding up and gave me a hug with tears in his eyes. It was a good conversation and I am really hopeful. I just wish I had found him before. I wish I wasn't so stupid when picking Naya's pediatrician. (Ty's longtime pediatrician retired about 6 months before I had Naya and I just assumed that her replacement was fine. Hindsight is everything.)

So, that's where we are at. I am getting anxious now. These next 8 weeks are so are going to be torturous (for a variety of a reasons).

Helping Hand

Over the weekend, Dan and I attended a fundraiser for a local non-profit organization called Jack's Helping Hand that assists special needs and medically fragile children. They couple who started the organization did so after their son lost his three year battle with brain cancer. Since then, they have helped many, many children in our area who are very ill with hospital bills, travel and living assistance (we live far away from a major medical center and the sickest of the sick have to travel at least 200 miles to receive care) and more. The cause was very near and dear to our hearts, as the organization helped us while we were in LA by paying for our stay at the Ronald McDonald House and provided us with a gas card as well as a gift card for food expenses. Since we were both not working and living 200 miles from home for almost two months, this was very beneficial to us both financially and mentally. When your child is dying in a hospital, the least of your worries should be how you are going to pay to stay with them until they pass. This organization allowed us to be there for her and we are very grateful for their support. I wish I could have afford to bid on some of the amazing auction items (one of them went for $25,000!) but we are not quite there yet with our finances (and won't probably ever be unless we win the lotto someday). Can you imagine having the means to spend $25k on one item at a fundraiser? There really are some generous people out there and the world is a better place because of them.

Anyway, like most things in our lives right now, the event was bittersweet. We were very happy to be there but it was definitely emotional for the both of us. Before the live auction, they brought out a few of the kids that they have helped in the past - pretty standard practice at most fundraisers. I, along with the rest of the crowd, shed some tears listening to these kids stories. However, I think my reasons for crying were probably a bit different then most of the other attendees. I was crying not only because of the pain and fear that these poor children had to endure but also because I could really put myself in their family's shoes. I know how helpless it feels to have a sick child. I know how it feels to be watching your child suffer in a hospital and not know whether the next minute would be their last. And I cried because of how lucky these families were because they didn't have to know the pain of watching their child die in their arms and coming home without them. I cried because I wanted Naya to be there with them instead of gone. All of these stories of sick children are not just stories to us - we lived them and unfortunately, ours didn't have a happy ending.

That's one thing that has kind of bothered me with organizations that help sick children and their families - they only ever tell the survivor's stories. I get the reasoning - obviously the stories of death are not as pretty as the ones who survived - but I think it sends the wrong message sometimes. Makes you think that the cases where the child dies are very uncommon when actually, it's the other way around. I've never seen the Ronald McDonald house mention any child other than the survivors on their Facebook page or website but I can tell you that, at least when we were there, half of those families were staying there to be with their children when they died. It's sad and horrible and not at all pretty but it's the truth - believe me, I saw the roses that they put out in their lobby anytime a child passed. They added new ones everyday. But it's never talked about because it's not a pretty subject.

That leads me to my next comment about the fundraiser (and life in general after your child passes away). People get really, really uncomfortable when you tell them you have a child who died. I mean incredibly uncomfortable. Being noticeably pregnant, I deal with this a lot. People always ask me when I'm due then the automatic next question is "is this your first?" Usually, I just say no. Some people leave it at that and others ask how many you have. This is hard and shitty question to answer - do I make them uncomfortable or torture myself by lying? I usually just say I have a 10 year old son and a daughter who would be 1 in July but passed away when she was 7 weeks old. Most people immediately change the subject and I just go with it. Some pretend like they didn't hear me at all. And some react and tell me how sorry they are. But they are all uncomfortable and that makes me uncomfortable. It's really a no-win situation.

We encountered this question a few times at the fundraiser - only this time it was from people asking why were there, along with the typical pregnancy questions. I answered truthfully as I wanted to show them the good that the organization was doing in the community. Yes, our story isn't as pretty as some of the others but this organization helped us in our time of need and we are very grateful. I congratulate them on an incredible fundraiser ($150k in the live auction alone!) and am so happy that they are around to help other families.

If you want more information on Jack's Helping Hand, check out their website. This family is truly inspirational for turning a tragic situation into a positive one and I look up to them as role models.
http://www.jackshelpinghand.org/

Splices of happiness

It's amazing to me how bittersweet life becomes after your child dies. The world is such a different place no matter how hard you try to make yourself fit into it again. I think most days I do a pretty good job. I can act normal and wear my mask with the best of them. I am functioning again in my job and am out in the public eye and hardly ever start crying out of nowhere. I know when it's going to start and what my triggers are and then I excuse myself and go in a bathroom stall, cry, compose myself and return to what I was doing. Somedays are better than others and there are even somedays when I can feel happiness at times and "forget." But there isn't a single day that I don't think or cry about Naya and wonder what could have been and I don't think there ever will be. That's just the way it is, unfortunately. You have to find a way to be happy and functioning among the grief because it will never go away. You have to find a way to try and enjoy your life again while realizing that nothing is ever going to go back to "normal."

The last week has been pretty busy for me. My sister came into town (she lives in Kenya) and my best friend got married last weekend. Add in the Fourth of July and work and we were running around. My friend's wedding was amazing. I was one of the bridesmaids so I had a super busy time (that my old and pregnant ass is still recovering from!) but it was fantastic.

She was so absolutely beautiful and it was one of the few times since Naya died that I can say I truly enjoyed myself for an extended period of time. I was just so happy for her and so glad to be there supporting her as she married her best friend. She has been there for me in ways that I can't even begin to describe, especially over the past year (she was in the hospital with us when Naya passed away and I don't know what I would have done without her) and I love her so much. It was wonderful to see her so happy because she deserves it. She's probably going to kill me but I have to post a picture of her and show everyone how beautiful she looked. Love you both Lindsay and Phil.

As I said the wedding was amazing. Lindsay planned out even the smallest of details and they were all beautiful. She even included all of my children in the wedding - Ty carried a sign saying here comes the bride, nugget was inside me and Naya was on a charm on my bouquet.

This made us both cry and I wasn't allowed to look at her after she had her makeup applied but it was absolutely perfect. I forgot to take a picture of the bouquet on the day of the wedding but it still looked great two days later despite the 90 degree heat it endured!

So all-in-all, it was a great day. I had some moments of sadness - it was hard seeing everyone there, happy and celebrating with their children. It just makes you realize what you are missing that much more sometimes. I wanted her there toddling around with the other babies in a little pink dress. Then your thoughts get to you a bit - a wedding makes us think of all the other missed opportunities we will never experience with her. I'll never get able to help her plan a wedding or pick out a wedding dress. Dan will never get to walk her down the aisle or have his father/daughter dance. They are small things but they hurt because when you have children, you look forward to these little things in their future. It's hard to admit to yourself that  those opportunities are really gone.

One thing that I am very thankful for are all of the amazing people who have become a part of my life since Naya died. Many were complete strangers or acquaintances who have since become a surprising and amazing support system. It’s one of the beautiful parts of life when other people’s kindness has the ability to amaze. Thank you to each and every one of you – you are amazing people and I hope you realize that.

Another group that has become an important part of my life are the other bereaved parents that I’ve found via online and personal support groups. It sucks that there are so many of us out there but, at least for me, the kinship and support I feel from you is incredible and has really gotten me through some tough times. I seriously don’t know what I would do without you all. Who else would go sit with me and have coffee and conversation by Naya’s grave and not think anything of it? Amazing women and I love you.

I guess that’s why it was so shocking and felt like such a stab to be attacked by a fellow baby loss mom recently. To be quite honest, I was very hurt by this and it sent me into a bit of a depression. After some contemplation though, I realized that I shouldn't let this person's words get to me - it wasn't worth it. (I am not usually this sensitive but your skin becomes a bit thinner while grieving.) While it is perfectly valid to have differing opinions and even debate them, it is not okay to attack someone for the way they're grieving and their interior thoughts. My blog is just that - my interior thoughts and not an editorial. I talk about how I feel about losing MY daughter. It is how I am dealing with it and that is perfectly okay. I may add some personal aspects of my life but I don’t want to lay every detail out there. Half the reason I write is to get my grief out there so it doesn't affect my day-to-day life. If you don't like it, don't read it. But please don't attack me personally (or anonymously for that matter. If you are going to criticize me, have the courage and decency not to hide behind the veil of the internet and put your name to your words). I would have assumed another bereaved parent would have understood the vulnerability one feels during the grief process and how much attacks can hurt but I’ve also learned not to assume anything these days.

Name Gallery

As some of you may know, Naya's first Birthday is rapidly approaching. Although we are planning a small, quiet, family celebration in order to remember the birth of our precious little girl, I wanted to do something else to help us celebrate our little princess. A few other BLM's have done a name gallery for their babies on their birthdays and I think I would like to do one as well.

A name gallery is essentially word art - creative, fun, or artistic ways of “writing” out Naya's name. For example, spelling NAYA out in M&M’s, Scrabble tiles, or even a photograph collage. Then you take a digital picture of your creation and send it back to us. You can be as crazy or creative as you want - as long as her name is in the photo it works. You can submit one or several photos including Naya's name. Anything goes as long as it says NAYA.

 

As much as it hurts, we do love talking about and remember our daughter and we are finding that as the time goes on, we are able to talk of her less and less. Seeing her name constructed with love by others will be a very special thing that we will cherish forever. We are planning on putting the photos together into a bound book, depending on how many we receive, as well as a public Facebook album. I am not sure how this is going to turn out but I am very excited to try.

Please send your creations (high-resolution photo, or link to photo) in an email to myty87@gmail.com or tag me on Facebook.

If you need examples here is a fellow baby loss mom's name gallery for her son Jason.

http://www.mycanvas.com/Flash/Viewer.aspx?fp=9827727&preview=1

Another baby loss mom's name gallery for her daughter Hadley.
http://bufefamily.blogspot.com/2011/10/name-gallery-6.html

 

Thank you all in advance for helping us celebrate and remember our Naya. We have already gotten some great ones in. Here is a link to the Name Gallery album on Facebook

https://www.facebook.com/media/set/?set=a.10100503210953075.2563996.6408804&type=1&l=b803bf367a

 

 

Deleted

Just to clear things up, I am not going to accept any comments on the deleted posts. This is due to nothing but the fact that I just don't have the strength and am having a bit of a breakdown today. Thank you for all of the support and criticism - I really do welcome it but I am still am not in a strong enough place to deal, especially not right now. I hope you all understand.

Buena

Another thing that is changed since Naya died is my energy to argue and fight. I just can't do it, which is why the last two posts have been deleted. I don't have it in me to submit into any drama right now. I'm sorry but I just have to move on.

I haven't really talked about it yet but Dan and I decided to get a puppy about a week ago.

We've been talking about it doing this for awhile now but, like most of the best things in life, the opportunity kind of fell into our laps. We named her Buena and she is a fawn pug (our other dog, Feo, is a 4 year old black pug). She is just too freaking adorable. Her and her brother seem to be getting along for the most part but we are keeping them separated for the time being while they are home alone.

What is actually hard for me to believe is how much joy she's already bringing into our lives. We are spending more time together in our living room (rather than holed up in our separate areas of the house), playing with her and Feo, laughing and genuinely enjoying life. Granted, I've been cleaning up vast quantities of pee, not only from the little one since the big one has decided to regress a bit in the potty training department. If anyone has any advice on how to handle this, I would love to hear it! Despite the pee, this new little one is bringing us so much joy and I am so utterly thankful for her - I am actually wondering why we didn't do this sooner.

With bringing this new puppy into our home, something else unexpected has happened though. For those of you unaware of the breed, pugs tend to have some respiratory problems. Buena is no exception. She came to us with a cold and when we brought her to the vet, he put her on antibiotics and said that she will most likely need surgery on her nasal passages when she is a bit older (probably at the same time we have her spayed). While it is nothing serious and actually quite a common condition with pugs, this terrified me. I had a very hard time sleeping those next few days because I had myself convinced that she was going to stop breathing in her sleep. I kept getting up to check that she was still alive. I know it sounds crazy but I was just so scared that she was going to die because that's what happens when we bring a new living creature into this house. The fact that she was sick and needs this surgery did not help.

I've calmed down somewhat since those first few nights though. It helps that she is a completely rambunctious puppy with a ton of energy and a healthy appetite. She just breathes hard because she has to do it through her mouth rather than her nose. I feel so bad for her because I hate that feeling of not being able to breathe through your nose (I have allergies and have been mouth-breathing for the past two months - it sucks!).

The thing that scares me though is if I freaked out as much as I did over a puppy, how the hell am I going to react when this baby comes? The reality of that hit me - I am so scared of overreacting over everything but at the same time, I am so scared of missing something and having my baby die. This is going to be hard.