Tuesday, February 28, 2012

Today was a good day...

Today was a long and emotional day. Dan and I drove up to San Francisco last night after work (four hour drive from where we live) because we were invited to participate in the kick off event for the March for Babies in the bay area. The kick off event was a breakfast at the W Hotel in Union square and started at 7:30 am (hence part of my exhaustion). It was a lot of driving to do for two hours but I am so glad we did it. It was a great way to not only become more inspired about our fundraising efforts for this walk but was also a way for us to meet other families who have gone through similar experiences. 

I don't know about other loss mommas out there but these days, I feel most comfortable interacting with other women who have lost a child. It's an immediate connection- we get each other on a level that most women are lucky enough to not ever have to understand. I don't have to put on a mask while talking to these women. I can be who I am now - I can laugh, cry and talk freely without worrying about their reaction because they get it. They aren't uncomfortable with my grief or scared to talk about the babies we have lost. They get it - we actually live in the same world instead of pretending to fit into the one that everyone else lives in. 

But I digress. Back to the kick off event. It was mainly for the big wig sponsors/corporate teams (which I totally get - I work for a non-profit) but they did have a few family teams represented. It was great to hear about fundraising strategies (Dan and I are going to be getting to work on this) but it was also great to hear from some of the real people speak and tell their stories. Most families that end up walking for the March for Babied do so because of a loss. It was sad yet somehow inspiring to hear their stories, especially because they have turned the loss of their child into something positive. 

And that leads me to my ultimate motivation in joining the March for Babies and even attending this event. I need to turn the tragedy that happened with Naya into something positive. I need to help change regulations and state standards to make sure that this doesn't happen to another baby. Naya shouldn't have died. I know that and I want to make sure that no others babies die in a similar fashion. I see the March of Dimes as the best place to have our story be heard and learned from.  I see them as a tool to inspire change. 

Thursday, February 23, 2012

Sums it up perfectly

I think this perfectly describes what my life feels like although it is mainly describing a stillbirth. Maybe this will help some people understand what we go through as loss mommas.
From SmallBirdStudios.com -

You don’t know what to expect.
People surround you. For a couple of weeks. Making sure you are not going to kill yourself, refuse to get out of bed, or start rocking a baby doll like the crazy lady they heard about from a friend.
You get lots of sympathy cards, clearly written and designed to be sent to console a daughter losing her father. Not the other way around.
You get free baby formula in the mail. For months and months and months.
And free baby magazines. And free baby coupons.
You secretly envy every pregnant woman. But not without a tinge of guilt, because you know all too well that she might be one in four- expecting her rainbow child.
It seems like the whole world is expecting a baby.
You have baby stuff around your home. Because you never imagined you wouldn’t need it.
You feel jarred. In the grocery store. At a birthday party. At the dinner table. At Christmas. Driving.
The baby you never knew, but lost changes every part of your life. Every. single. part.
You see baby clothes and it brings tears to your eyes.
You get sick and tired of crying. You never knew it was possible to cry this much.
You find yourself angry at God. Angry at yourself. Just angry.
You swear you can feel them kick but they’re gone. They call them phantom kicks. I call them painful, all kinds of painful. But sweet too.
You know, or you have a strong feeling of knowing what your child would have looked like, and been like. You see a child in the store, or on the street. Their hair color, dimples, smile, their personality and suddenly you are reminded of your child. You miss your child even more, if that’s even possible.
Your Babies R’ Us Registry is still active. There is no delete button on their site. The babies r’ us people don’t make a dime on people like us. Why bother right? You have to call them, plead with them to remove your freaking’ registry, because there will be no baby shower. There is an awkward silence. There is sadness. There will be no baby.
You get hospital bills about 3-4 months after you buried your child. You have to pay for the baby you delivered but didn’t bring home.
You find that moment of happiness in life for the first time, but the guilt swallows it up almost immediately.
You remember the size of the casket. The size of the plot. The face of the funeral director. The expression of those that attended the funeral. The feeling of raw pain, like your chest has literally been ripped open.
Somehow you convince yourself that you deserve happiness. Because you really do. But in the happiest, purest moment, there is still that hole that only they were meant to fill.
People compare your pain to their own pain. The loss of their grandmother, husband, their failed marriage, rebellious teenagers. Somehow this comparing leaves you stranded. If they can compare their pain of a situation to the loss of your BABY, they will likely never get it. Babies are not supposed to die. End of story.
You lost a dream. And it almost feels like you imagined their entire existence up. Their name becomes a distant memory on the lips of others.
There is awkwardness when you talk about your child in a crowd. No one knows whether to cry, walk away or pretend you never brought him or her up.
You lose friends. You find new ones.
You can’t believe that women have actually survived this and you never knew about it. Not really, anyway.
You would do anything for another minute with your child.
You cry when others bring up your child, not so much because it hurts but more so because it such a precious and rare gift.
You long for the rewind button, even after many many instances of acceptance.
You want to know what went wrong, and why…
You find a new appreciation for moments in life that make you laugh… you laugh harder and love stronger.
You know that you can die bitter, or die thankful. There is no in between.
You never ever, EVER get over your child. The one you hoped for, prayed for, carried and loved for the weeks and months they were with you.
You learn to live with the pain.
You are better for having known them at all.
Tomorrow you would have been 7 months old baby. I miss you so much. Everyday.

Friday, February 17, 2012

A see-saw kind of day

Wow. Instead of riding a roller coaster like I did everyday in the NICU, my day took on a see saw sort of feel. I'll take it over the roller coaster, that's for sure.

My day started off borderline. Last night, I had a dream and it confused the hell out of me. I woke up around 3 (which seems to be my hour to wake up every night) and could not go back to sleep. It was very confusing. It started off at CHLA and she was there, alive but still hooked up to the machines and very, very sick. And then, magically, she wasn't. She morphed into what felt like a different baby (a girl with light brown hair, blue eyes and significantly more chunky than Naya). This baby wasn't hooked up to any machines and had her eyes open, staring and winking at me. Although she was probably only a month old, she started moving her mouth and smiling and laughing at me. And Dan and I were smiling and laughing back. We were happy - all of us. And then my dream took a 90 degree turn and a friend of mine who passed away over the summer was there. But it wasn't him - I mean it didn't look like him but it was him. I told him that he looked different and he said that's the way it works. That's when I woke up.

After Dan I woke up, I told him about the dream and just started sobbing. It's such a blessing to dream about her but it makes me miss her that much more when I wake up. Add that to the fact that I was so confused about the meaning of the dream and my morning was pretty much shot.

But I got up. I worked for awhile and then Ty and I took the dog to walk on the Beach. Afterward we stopped and got tea and cookies. That's when I had one of those "if God exists he must enjoy messing with me moments." I go to the same coffee shop 3-4 times a week (I know, it's ridiculous but they have decaf Chai so I must.) One of the girls who has worked there for a long time just had a baby a few weeks ago, so I've been avoiding it a bit. Today, I figured screw it - what are the chances that she will be there with the baby when I get there? Right? Yep, you can guess what happened next. I ordered and while I was sitting there waiting for my drinks, who walks in? Yep. That is how great my timing is.

So Ty and I went home and I figured that my day was just going to continue on the random dark path it seemed to be headed down. Not the case. Today, I got a phone call from the March of Dimes. It turns out that our team is the second highest fundraising Family team in the nation right now. I am just over the moon. Thank you everyone so much for all of your support. I am blown away by your generosity. You all continue to amaze me.

But, of course, I now have a new challenge. I am pretty competitive and I don't like the idea of being second. I want to be first. And I could use your help :) If you can afford to contribute, please consider donating to this wonderful cause. There are millions of babies who will appreciate your help.

Wednesday, February 15, 2012

Loved this

I didn't write this myself but I find it poignant and oh, so true. This was a post written on corasstory.org about how to help after someone you love loses their child. Believe me, I know most people out there are clueless as to how to react to me or treat me. They know I am different and I know I am different. This post delves into this a little bit, so I thought it might be helpful to share. It also helps to know how normal my feelings are and to know that I am not alone in my thoughts.

 The first few months after the baby or child dies:
• Keep those promises! I heard so many “I’ll call” and “We’ll stay in touch now.” Truth is, I rarely get phone calls. Maybe because I rarely answer phone calls. It’s hard for me. But, I might want to talk one day. I might need you. And, I need to know you’re there. Always. Maybe because I rarely go out or make plans, but who knows maybe I’ll want to one day. So just keep calling. Not stalkerish, but once every other week or so maybe.

• Don’t think that it’s time to stop talking about the baby or child. When someone dies people seem to start to fear talking about that person at some point. You can talk to me about my baby. In fact, it’s all I want to talk about. Everyone grieves differently, so if the family doesn’t want to talk about it, use your intuition or simply ask. But, don’t make the situation awkward by refusing to talk about the elephant in the room.

• Take some time for yourself. Step away when you need to. Keep yourself healthy for your friend. I feel bad when people tell me they cry for me every day. If you’re following the family online, take a break once in a while. You’ll be a better help when you come back.

• Again, vague offers of “tell me how I can help” make me a little nervous. I want help. Need help. Am so GRATEFUL for help. But, I don’t know how you can help. It still takes all my energy to get out of bed. Try to find specific ways and just do. Ask permission to use the child’s name if you plan a fundraiser or want to use pictures. But, take on planning yourself.
• Make sure your offers to help don’t create more work for the family. Don’t place deadlines on them or plan anything that requires a commitment. Sometimes I’m social, sometimes like this week, I feel a huge ball of anxiety form at the thought of seeing anyone.
Stay with the family for years to come…
• The loss of a child isn’t a sickness. I don’t plan on ever “getting better.” One day I will have to stop crawling through the day and start walking. I know I’ll need my friends and family. Keep the notes and phone calls coming.
• Don’t rush the family through the grief process. Don’t tell them healing will start. Everyone grieves on their own time and that’s okay.
• Don’t push “closure” on the family. Child loss is not a disease. I’m not looking for closure. It won’t get better. Life has changed forever. The family will love and laugh again, but will be forever changed.
• Talk about the child or baby. I’ll never want to stop talking about her. If the family seems uncomfortable, simply ask if they’d rather not talk about their child. If they start to talk about the baby, don’t change the subject. Ask questions and listen.

Tuesday, February 14, 2012

Happy Valentine's Day?

You never realize how certain days of the month really take on meaning until you are forced to confront them. Today is one of those days. To the rest of the world, today is Valentine's Day - the semi-cheesy corporate Holiday in which people take a timeout and recognize the love in their lives for a day. For me, it is the five month anniversary of my daughter's death. I am not really a Valentine's Day type of person anyway but I believe this holiday has been forever ruined for me because it will always coincide with the 14th of the month. So today, while I am getting flowers from my husband and helping my son pick out a necklace to give to his girlfriend (Yes, that actually happened - I am in TROUBLE with this kid. He's only 10 and already hung up on girls!), I also have to drop off the flowers and teddy bear I bought for my daughter for Valentine's Day at the cemetery. I miss her. I want today to be over.

Thursday, February 9, 2012

Guilt part 2

I've had a tough week. I've been incredibly busy at work and my stress levels have definitely reached a high, which I know have contributed to how terrible and emotional I have been feeling. Mix in the fact that I haven't been sleeping due to insomnia and you have a pretty toxic combination.

Part of what is keeping me up at night is that lately, I have been feeling a lot of guilt. However, it's a different guilt  from what I was experiencing before (although some of the coulda, shoulda, wouldas will always be there for me). Now, my guilt is due to two different factors - my healing and my other regrets.

Everyday, I know I am getting stronger. I feel it. I am able to go to work, hold normal conversations and generally get through the day without having complete and total mental breakdowns. Sure, I have my days but the really bad ones are becoming further apart. This should make me happy, right? I am healing and that's supposed to be a good thing. Only, it's not. It actually does kind of the opposite. It makes me feel like a terrible mother because I am going on in my life and moving on. It makes me feel like I am dishonoring Naya and that makes me so sad. I don't want to move on. It feels like the further I move on, the further she is from me and my life and I hate that. I don't want her removed from my life, I want her in it. And so I feel guilt and trepidation about healing. Isn't that some irony?

Another thing that has really been bothering me lately are some of the decisions I made while Naya was in the hospital. I feel guilty for putting that poor little girl through so much pain and suffering with all of the medical interventions we did to try to keep her alive. I know that I am looking at everything in hindsight and going back, I probably would have made the same decisions but god damn does it hurt thinking about it. I just keep imagining how much pain she was in and I hate myself for allowing and encouraging it. It just kills me that my daughter spent the majority of her life in pain and I prolonged it just so I wouldn't have to deal with her death. It breaks my heart that much more.

Sunday, February 5, 2012

Off Topic (Sorry, I was bored during the Superbowl)

I don't really want to get political on this blog (so not the point) but there are some topics that I can't help but voice my opinion on. Unless you have been living under a rock, (or have been dealing with a child in a NICU - believe me, I know that you really do miss out/not care about anything other than your immediate reality during this time.) you had to have heard about all the whole Susan B Komen Foundation vs. Planned Parenthood battle that was waged this week. Essentially, Komen decided to pull grants from PP and they got pissed and the public got pissed and because of the bad PR, Komen reversed their decision.

Okay, so I know Planned Parenthood is a hot button group because of the fact that they provide abortions in some locations. This post is not about abortion, how I feel about it nor what I think should happen with it policy wise. I am not going to go there, at least in this post. The unarguable fact though is that Planned Parenthood is about so much more than abortion. It is a major healthcare provider for many, many women who couldn't afford it otherwise. If it wasn't for PP, I wouldn't have received any type of healthcare while I was in college. I was a struggling single mother and while I did have very crappy insurance, I couldn't afford the copays that came with it not to mention the insane cost of birth control. Planned Parenthood gave me a chance to take control of my health and I appreciate them for that fact.

But this post isn't about Planned Parenthood either, although they did prompt the conversation. This post is about whether the Susan B. Komen Foundation was putting politics over women's health this week. Unfortunately, I believe the answer to that question is yes.

The Komen Foundation is an internationally recognized non-profit organization that is actually a very well-rated and trusted charity. (Great ratings on charity navigator, they don't pay their Board, they fully disclose their 990s and other financial docs on their website, etc.) While I only briefly glanced at their audited financial statements, nothing looked out of the ordinary. Although a significant amount of their income seemed like it was going to their mission and not administrative costs/overhead, some other things did stand out to me. First of all, their CEO makes over $500k plus bonuses and perks such as first class transportation. This salary puts her in the top 2% of non-profit CEOs. Their net income was also insane (over $193 million). Wow. I would have to do further research to see what they do with this net income but it would be interesting to find out. Another interesting/strange thing was they payed out almost $1 million in severence packages for 4 individuals, including their former CEO, in 2010. Again, very odd.

Another interesting thing I found about Komen is how much they have engaged in the "whole" branding of pink ribbons equaling breast cancer awareness. They have literally patented the idea (and sued other companies who use pink and "for the cure" for copywrite infrigement). It seems a little weird to me that they have gone to such trouble to protect their "brand" because the main goal of a non-profit should be to work to erradicate the problem (getting rid of breast cancer)  and not to ensure their corportate standing and marketability (secure pink ribbons = Koman Foundation). I am not really critical of this because they do seem to spend a lot of money on their mission statement but there is a group of people who view this as evidence that their priority is their corporate sponsors. They call it "pinkwashing." In fact, there is a documentary that is hitting the theatres in the spring entitled Pink Ribbons, Inc. that will be interesint to watch.

But back to the matter at hand. Was pulling funding from Planned Parenthood a political move? From the evidence I've seen, the answer would have to be yes. Komen's founder and current CEO (as of Dec 2009) is a lifelong GOP supporter and former ambassador to Hungary under George W. While that is damning in itself, I don't believe Komen has any political aspirations or such to see bowing down to the religious right as a valuable move. It is a different story, however, to the organization's newly appointed VP Karen Handel.

Handel is a staunchly anti-abortion politician (at least that is what is listed as her occupation on Wiki). She is the former Secretary of State in Georgia and ran for Governer of Georgia in 2010 on an anti-abortion platform. (She lost.) When she became VP of Komen in April 2011, she made many policy changes in the granting process, causing the organization's top public health official to resign because of these changes. According to various articles out there, Handel is the reason for the Planned Parenthood debacle. As of now, she hasn't stepped down from her position.

Seeing all this, in combination with Handel's obvious and recent political aspirations, I believe the defunding of PP was a 100% political decision. Handel was probably looking for something to strengthen her staunch anti-abortion platform for any future runs for office. She would have taken credit for withholding funds to that "evil" organization Planned Parenthood. Again, forget the abortion part of this equation, and remember that with the grants that PP received from Komen in 2011, they were able to provide 170,00 breast exams and 6,400 mammogram referals to low-income women across this nation. Exams and referals that Handel wanted to take away just because of politics. This is just my opinion but the health of low-income women shouldn't ever be a political pawn and I applaud the Komen Foundation for realizing this and rescinding their decision. Mucho kudos to them and let's hope they continue their mission and find the cure.

Wednesday, February 1, 2012

The Seemingly Innocuous

I think one of the most annoying things that has changed in the last 6 months is how sensitive I've become to seemingly innocuous things. I am quick to react - in anger, in sadness, in fear, in disgust - to things I never would have even thought twice about before. Songs make me burst into tears, tales of unwanted pregnancies make me cringe and don't even get me started on stories about missing or exploited children. While I was always sensitive to stories about the death of children before, it is unbearable now. When I hear those kind of stories, I don't even really think about the deceased. My mind automatically goes to the parents because I, unfortunately, can say that I 100% know what they are going through. I feel terrible that they are now part of this horrible club with a lifelong sentence. Because that's what it is, a lifelong jail sentence that we will never, ever get rid of. We might move past this agonizing, intense, surreal grief that one immediately feels after losing a child but we will never, ever fully heal. The loss of Naya is a pain that will always be with me. Period. 

I am digressing though. I began this post talking about the small mundane things in everyday life that I have become sensitive to. Commercials are one major example. There are two in particular that really rub me the wrong way. 

The first one is for ancestry.com. It's a woman talking about how she found out through the website that her grandmother had something like 5 children but only two survived so because of that, we should all realize how lucky we are. At this point, you can usually hear me tell the lady to fuck off. Yes, I talk to the TV. 

The second, is an ad that is currently running for the phone company Vontage. It's a dad holding a baby and the mom talking about how they need to get rid of their "bundle" (with the cable company) before they get too attached and the dad misunderstands and thinks she means they need to get rid of the baby. This commercial just boils my blood. Whomever wrote it is fucking retarded. 

The funny thing is that to a normal person, neither of these commercials would be offensive (hopefully, normal people view the vontage one as "in bad taste" though.). But to me, a loss momma, these commercials are so hurtful, mainly because they both don't even consider the fact that people out there are really experiencing the loss of their babies and joking about it or mentioning that it is something that happened to people's grandmothers (but not to them) is just plain wrong. It's the ignorance of these companies that annoys and offends me. Also, ancestry.com is on my shit list for other reasons. Apparently, they post SSN for the recently deceased and have made it extremely easy for assholes out there to steal deceased babies identities. Guess we will find out if that happened when we do our taxes!