A Rainbow

Okay. It's time. (I say this with tremendous trepidation because I don't know if I am ready for this but I quite honestly don't know if I will ever be ready for this.) Here goes.

I've been holding something back for awhile from everyone. I have had my reasons (which I will probably go into in subsequent posts) but I want to keep this one upbeat and happy. I am 17weeks pregnant right now with our rainbow.

I know I have a lot of baby loss mommas that follow me but for those of you that aren't familiar, here is my favorite definition of a rainbow baby:

Babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. A "Rainbow Baby" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.

I think this definition perfectly defines what we are feeling right now. At this point, we are very, very cautiously excited. So far, everything looks great. I've already had 3 or 4 ultrasounds, mucho lab work done and I see my OB about once every two weeks and so far, so good, with the baby. We are very excited to have the thorough anatomy scan by our perinatologist at the end of April.

My health is good (so far) - only a slightly elevated blood pressure and I think that is due to being nervous when I go to the doctor's office. I am taking it easier, resting a lot (when I can - I'm still an insomniac) and pretty much avoiding anything that can be construed as even questionably dangerous to a growing fetus. Even though I know that nothing I did caused what happened with Naya, I am still not willing to take ANY chances. No diet sodas, no sneaking lunch meat, no medication, nothing. I am drinking tons of water (and seriously peeing like I'm 8 months pregnant instead of 4), eating well and exercising (I still go to the gym everyday - only very moderate exercise while there).

How I am doing emotionally is a different story but I won't go into that today. I'll only say that this has been a lot more of a roller coaster than I thought it would be. It's very difficult to be incredibly sad and incredibly happy at the same time. The emotions do not cancel each other out but exist simultaneously. I do have to say, that this baby will NEVER replace my daughter. I will always ache for her and what could have been. Our family may be growing but it will always have a big part of it that is missing. But this baby has been able to help me heal in a way that nothing else could. Like a physical rainbow, it has given me a small ray of light and a glimpse of hope among the darkness.

Grateful

This week marks the two year anniversary of the Affordable Care Act. I am not turning political on here and don't really care for a political discussion about this issue (that's what Facebook is for). I do want to talk about some of the provisions of the bill that a lot of people don't realize and one that directly relates to our family.

Most people aren't aware that the healthcare bill did many things other than the hot-button insurance requirement. It also made it illegal for insurance companies to deny coverage to people with pre-existing conditions, allowed parents to keep their children under their insurance plans until the age of 26 and a myriad of other changes to Medicare, etc. It also, most significantly to me and my family, got rid of lifetime and annual insurance caps.

If you have never gone through a  family member having a critical illness, you may not understand the significance of this. But I can tell you, for my family this has meant the difference between bankruptcy and a semblance of normalcy. If this part of the law had not gone into effect in Sept 2010, we would not only have lost Naya, we would have also lost everything.

Prior to Sept 2010, most insurance plans (even the good ones) had annual insurance caps and lifetime provisions. Most annual caps ranged from @$25k- $500k. Lifetime caps were @ $1-2 million. As of Sept 2010, lifetime caps were prohibited and annual caps were set to a minimum of $750k and needed to be completely phased out by 2014, although a lot of the major insurance companies decided to do away with any sort of cap at that time. Our insurance company was luckily one of them.

I'm not sure if the general public is aware but a longterm hospital stay, especially in the ICU is incredibly, unbelievably, ridiculously expensive. Naya was in a neonatal intensive care unit for approximately 7 weeks. For those 7 weeks, she underwent surgery, received 1-1 nursing, multiple daily X-rays, multiple echocardiographs, ultrasounds, genetic testing, blood/plasma transfusions, was on a ventilator, received a plethora of drugs and saw just about ever specialist known to man (and probably a host of other treatments/tests that I am forgetting). The final bill was close to $3 million dollars. For 7 weeks. Imagine what that would be for 7 months and realize that a lot of typical NICU stays are truly that long.

Now imagine that Naya was born a year earlier and our insurance policy had contained those typical caps. I'll give the best case scenario and say that our annual cap was the same as the lifetime cap of $1 million. That would mean that not only would we have lost our daughter, but we would be stuck with at least $1 million in medical bills out of pocket. And we couldn't have paid that (really, who could?!) so we would have had to claim bankruptcy. Icing on the cake to not only lose your child but also the rest of your life possessions. Instead, we only had to pay our maximum yearly out-of-pocket expenses (still a nice chunk of change but much more manageable than $1 million) and we were able to keep our home and much of the rest of our life in tact. Say what you will about the politics, but we are living proof of how The Affordable Healthcare Act was meant to help families, especially those in crisis. And for that, I am grateful.

A Bereaved Parents Wish List

I was planning on writing tonight but I decided to relax with Dan and watch Frozen Planet instead. I did want to post this in the meantime.

I found this list on a bereaved parents website and loved it. At this point, I would ask people to pay particular attention to #7-11. These feelings really do apply and we do need people to understand and respect them.

1. I wish my child hadn't died. I wish I had her back

2. I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that she was important to you as well.

3. If I cry and get emotional when you talk about my child, I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.

4. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you more than ever.

5. I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.

6. I know that you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know things through a phone call, a card or a note, or a real big hug.

7. I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

8. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that she is dead.

9. I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time, so don't frustrate yourself.

10. I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal.

11. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.

12. When I say, "I'm doing okay," I wish you could understand that I don't feel okay and that I struggle daily.

13. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.

14. Your advice to "take one day at a time" is excellent. However a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

15. I wish you understood that grief changes people. When my child died, a big part of me died with her. I am not the same person I was before my child died, and I will never be that person again.

16. I wish very much that you could understand - understand my loss and my grief, my silence and my tears, my void and my pain. But I pray daily that you will never understand.

Three Studios. One Family.

Spoiler alert - Dan is blogging so the expletives may not run rampant on this post :)

My daughter, Naya Jane Manalo, passed away on September 14, 2011... 6 months ago today. And during these last 6 months (including the 7 weeks in hospitals), my work (LEVEL Studios) has been incredibly supportive.

Three Studios. One Family. This is a phrase that I've heard at LEVEL for the 3 years that I've been here (actually 3 years yesterday). It now has new meaning to me based on the events that have transpired over the last year. Here’s why…

My daughter, Naya, was born on July 24^th. She was full term and everything seemed fine after the delivery. But we soon noticed that she was sleepier than normal for a newborn, was not feeding well and was not pooping. After daily trips to the pediatrician to have her checked out, we ultimately got so concerned with her inability to feed and poop that we took her to the ER.

After a couple x-rays, the ER thought she had a bowel obstruction and so they scheduled for an ambulance to take us down to Cottage Hospital in Santa Barbara for surgery. That ride down was one of the scariest hours of my life as I held my daughter on the gurney in the back of the ambulance.

When we arrived in SB, doctors and nurses began swarming in an attempt to triage her various ailments. She was given antibiotics and was rushed into surgery, which then turned into the next scariest hours of my life as my wife and I waited. It turned out that there wasn’t a bowel obstruction, but that she had e.coli sepsis and that her lungs were very sick.

We spent 10 days in Santa Barbara while we watched and waited for our daughter to recover. Fortunately, one of my close friends from work was able to help us out by letting us stay at one of his family member’s house which was within a mile of the hospital. The support from both him and my work had only just begun.

On hospital day 11, she was getting closer to kidney failure and it was decided that she would need to be transferred to a level 4 NICU at Children’s Hospital of Los Angeles. It was determined that she would be helicoptered down, and so my wife and I proceeded to make the next leg of this traumatic journey by driving down. During the drive out of SB, we watched in the distance as her helicopter rushed down to LA.

LEVEL Studios continued to support us by helping to secure hotel lodging in LA while we waited for a room at the local Ronald McDonald house. Luckily, a room soon opened and we were within walking distance to the hospital. During this stint, I was grateful to see my coworkers continue to support me by not only covering my projects, but by sending thoughtful emails, texts and organizing a local fundraiser. At one point, 2 of my clients even drove down from a Las Vegas convention to spend an afternoon with me and my wife.

We were in LA for 5 and ½ weeks which turned into the longest rollercoaster of our lives… a rollercoaster laden with daily life and death decisions that ended in my wife and I holding our daughter in our arms as she peacefully passed.

Even now, I continue to receive support from my LEVEL family. My wife and I decided that we want to give back to the community through education and fundraising, and so we signed up for the March of Dimes: March for Babies yearly walk event. The LEVEL team has taken time out of their days to listen to Naya’s story and help increase overall awareness. Their donations/participation in the walk support March of Dimes research and programs which help moms have full-term pregnancies and most importantly, help babies begin healthy lives. These generous gifts will also be used to bring comfort and information to families with a baby in the newborn intensive care units.

If anyone would like to participate in this year's March of Dimes: March for Babies event with us, here are the walk details.

 
April 28, 2012
Bishop Ranch 2 & Iron Horse Trail
2686 Bishop Drive
On the corner of Bishop Drive and Camino Ramon
San Ramon, CA 94583

For more information on the March of Dimes: March for Babies, please go to: www.marchforbabies.org/

If you would like to make a donation, you can visit either my wife's personal page at  www.marchforbabies.org/TyAndNaya or mine at www.marchforbabies.org/dmanalo

If you would like to join the team to walk and raise money, you can visit the team page at www.marchforbabies.org/team/nayaspapayas 

As Seen on TV

I used to be a fan of mindless TV. I loved spending a rainy Saturday at home, watching a Teen Mom or America's Next Top Model marathon. Because of my busy schedule, this occurrence was a rarity but it made me enjoy it that much more. 

My tastes have changed since Naya died. I still regard my bed and TV as my comfort zone but instead of bad, pointless reality shows, I prefer watch mindless comedies such as The Office or How I Met Your Mother reruns on Netflix. (That way, I can avoid commercials. Nothing can ruin my day like a pampers commercial or that stupid Anthem Nurse line lady urging people to call anytime because "newborns don't keep business hours." Where were you when I needed you 8 months ago?!  Bitch. Oh - have I mentioned that I'm still in my depressive funk and am having anger issues again. At least they are being directed towards the television.  

Anyway, you won't catch me watching E! or MTV anymore. I absolutely can not stand E! (Um, why don't they just rename it The Kardashian Network already, since that is the only thing they freaking play! Instead of E! It can be K!) And MTV? They should rename that network "Bitches whose ass I want to Kick." I mean, Jersey Shore. Really? Is five seasons of watching the same people get drunk and do stupid shit over and over again entertainment? Blah!

I used to really enjoy Teen Mom or 16 and Pregnant. Now I go out of my to avoid it. It literally eats me up inside that all these little girls are accidentally getting pregnant an having all these perfect, healthy beautiful babies and then royally fucking up their kid's lives with ridiculous drama. Now, I know that some of those girls have their shit together but most of them are fighting with their families, struggling with money, getting arrested, doing drugs or making extremely poor and selfish descions. It's just so depressing that people like that little bitch Janelle on Teen Mom have beautiful, healthy children (that they don't even take care of!) and my baby is dead. 

This brings me to the other thing that absolutely disgusts me right now. Snooki is pregnant. Are you shitting me? The universe has allowed Snooki to spawn and my baby is dead. I was flipping through the channels over the weekend and I actually stopped on E! because Fashion Police was on. (I love Joan Rivers snarkiness.) They brought up the fact that Snooki is knocked up and Juliana Rancic kind of reiterated my above reaction (she is experiencing infertility). Her reaction was so honest and so painful, that I just wanted to jump in the TV and give her a hug. When you experience a pregnancy loss or confront infertility, seeing people accidentally getting pregnant just breaks your heart and proves how unfair life really is.

Tsunami

I have had a bit of a setback this week. It all began on Monday. The day started off well but midway through, something just clicked for me. She's really gone. Nothing can bring her back. That 7 weeks I had with her was it. Those are all the memories I will ever have of her for my entire life. I have like 10 pictures if her and one video, in which she's being kept alive by machines. That was her life. How fucking depressing is that?

I basically spent the rest of the day sobbing in bed. It was not pretty. I should have taken a picture of my swollen red face. I think that was the hardest cry I've ever had in my entire life. I even went as far as spending an hour  sitting in her room, wrapped in her blanket and hugging her princess bear while sitting on her rocker - all while sobbing. This was the first time I've spent any sort of significant time in her room. I know eventually, I am going to have to do something with it but I really don't want to. Sometimes I feel that room is the only tangible thing I have left. Other times, I wish we could just move so I don't have to look at that depressing door that remains closed any more. It should be a room full of joy, with toys and a laughing, crawling (possibly toddling if she was anything like her big brother who was walking at 10 months) baby girl. Instead, it's filled with brand new baby gear that remains unused, bags of hospital remnants, welcome home gifts that still remain unopened in their boxes and a huge stack of sympathy cards. 

Speaking of sympathy cards, I was buying one yesterday for a family member who passed away and I noticed that they have sympathy cards for losing husbands, wives, parents, even pets but did I find I single one for a parent who has lost a child? Nope. Of course not because that is not supposed to happen. It's unnatural so why bother making a greeting card recognizing this loss? Even hallmark makes me feel like a fucking pariah these days.

And that's enough of a rant for today. I already feel much better than I did on Monday. I also recognize that this is just how grief works. It comes and it goes. In my bereaved parents group, our group leader described it as a wave. It comes in , it takes over and it recedes. I think when you have lost a child, it's more of a tsunami but the metaphor still works. It also hopefully means that next week will be a better week.

When You Lose A Child

When you lose a child it is hard for so many reasons other than the fact that you lost a child. People have a terrible time put themselves in your shoes and comprehending your grief. You realize the reason for this is because your loss is entirely too hard for a “normal” person to understand. It’s much easier to comprehend losing a grandparent, a parent, a friend or even a spouse. Those losses fit into the natural order of life. They make sense. Losing a child is different. It’s truly the only form of loss that you don't ever imagine for yourself because it doesn’t make sense. It scares people to have to deal with it so they don’t.

When you lose a child, you also tend to lose people close to you. They truly can’t comprehend nor want to deal with your grief because it’s terrifying. The fact that you lost your child makes them realize that it could happen to them and this thought is just too devastating to deal with. They might not want your reality interfering with theirs because, quite frankly, it puts a damper on their lives. You lose connections because people take your grief personally; they can’t comprehend that what you are feeling or going through has nothing to do with them and everything to do with the fact that your child is dead and never, ever, ever will not be.

When you lose a child, you see the world with very different eyes then before. You are more sensitive to tragedies but everyday struggles seem meaningless and ridiculous. Non life-or-death situations or decisions seem trivial.

When you lose a child, you have to learn to fit in with the world again. You have to re-socialize yourself and learn how to have normal conversations again. You have to try to gain control over your emotions so you don’t start crying out of nowhere. You wonder if you will ever be the person you were before. You realize you never will.

When you lose a child, you are forced to confront death every single day. Like any other parent, you think about your child every single day. Only, instead of worrying about getting dinner on the table for them or how they are doing in school, you think about the fact that it’s been two weeks since you visited their grave. You can close our eyes and see their dead bodies. It's a terrible thing to picture but that's the last way you saw your child, ever. You no longer have the luxury of being able to ignore death because it’s constantly thrust in your face. Your child being dead is your constant reality.

When you lose a child, you may look normal on the outside but on the inside you are changed forever.