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Monday, August 24, 2009


I'm in the middle of a contraction now, can you tell? This too shall pass so bare with me, k?

I’ve struggled for a long time to describe what it felt like to have this happen to me, to John, to my children. This feeling, this thing...hurts. My co-worker told me yesterday morning that she had a dream about me the night before. In her dream, she and all of my co-workers were hugging me. I kept telling everyone that I was "okay".

And, that's how I roll folks.

I tell everyone that I'm okay when I'm really fucking not. I know this is all very graphic and raw, but it’s true. Niki's birth did not cure my grief! I could have a thousand children after Ethan, and I would still be fucking hurt over losing him. No child can replace another. I'm simply not the same person anymore and I know it. I could laugh an eternity of laughter, but that happiness will never be the same as it was before I lost my baby. As far as I’m concerned, I will live the rest of my live viewing the world as if it were missing a single color.

He's gone.

Perhaps every child who predeceased their parents has their own color. In my world, he was the color"bliss". My bliss. I'm happy, but I'll never be truly blissful. Each moment that goes on without him are moments that I wish I could share with him. When the boys fight, I wish he could be fighting with them. When Niki has a birthday, I wish he could celebrate his four days later. No more Ethan, no more bliss.

I'll always see a shade of gray in the spectrum found in colorful, vibrant happiness.

The most frustrating part for me?

I can't do a thing about it.

Saturday, August 22, 2009

Messed Up...

I want you to try something. If you’re a parent, this should be easy. If you’re not a parent, you can still do what I’m about to tell you to do. Simply think about a special baby in your life instead. Parent or not, if you’ve been reading my blog for a while, I want you to seriously try this. If you don’t have the time right now, come back to this post later.


Take a moment to remember the first few seconds and minutes of your baby’s life. Visualize and feel the sights, sounds, emotions, and aromas of that moment in time. It was beautiful, wasn’t it? Love at first sight. Sheer joy. You cooed over your baby. You marveled at how perfect he/she was. You covered that precious face with countless kisses. Every squeak, cry, and movement he/she made was heaven on earth. You would adoringly watch this child sleep in your arms for hours on end. Remember your baby’s soft, gentle breathing. Remember the warmth of that tiny baby snuggled in your arms.

The world was simply perfect, wasn’t it?

Now, think about the following hours and days of your baby’s life. Your initial infatuation swiftly underwent a metamorphosis and turned into a profound love. Reality sets in. You start to tend to your baby’s needs. Your baby had a rhythm. Likes and dislikes. A name. This baby truly felt like he/she was yours once you were home from the hospital. No more nurses or doctors to poke and prod your little one. You just started to fantasize about the weeks, months, and years you would spend together in your home. Remember the sound of your baby’s precious cry beckoning you to come and comfort him/her. Remember those sweet, inquisitive eyes looking up at you in the wee hours of the morning.

This is an exquisiteness that cannot be described.

Now, imagine that this baby that you love so much, suddenly and unexpectedly got sick. Imagine that this baby, the same baby that you are so completely and utterly enamored with...


You will never see those beautiful eyes looking up at you again. They are closed for all eternity. You will never hear his/her cry again. Those sweet lips can cry no more. You will NEVER fucking feel your baby in your arms again. All you have left is a heavy feeling of emptiness around you. The loveliness that you just experienced, is gone.

The pain is heart wrenching, isn’t it?

Perhaps this excersize has given you some perspective. I’m sorry if I just made you feel emotions that you’ve never felt before. Even I am having trouble maintaining my composure as I write this. I’m sorry, but I just had to get this off of my chest. Imagine how you would feel if you were never meant to see your son/daughter grow up.

Imagine your life without the baby you knew once upon a time.

In the first few days and months after Ethan passed, a few people told me that I should be grateful that Ethan was “just a baby” when he died. “Could you imagine what it would feel like if you lost him at (blank) age?” I was told that the pain would be far greater if I “really” got to know him. I beg to differ. It hurts all around. In all honesty, the first moments you spend with your baby are the hardest to forget. Women in their 80’s can still distinctly remember the day they gave birth to their children. Your child will always be your baby. You see, a huge wave of emotion hits you in the minutes, hours, and days after your baby is born. It’s easy to remember “birth day” and the days after, because you there so many feelings associated with it. Emotional highs are at its peak.

You’ve never felt euphoria like this before.

I don’t care if you lost your child through miscarriage or stillbirth. It hurts. I don’t care if all you had was a few minutes, hours, days, weeks, months, or years with your child. Outliving your children is not natural. It is the most painful feeling a person could ever experience.

Frankly, I wouldn’t wish it upon my worst enemy.

When I think about Ethan and how much I miss him, I just want to breakdown and cry. When I remember how horrible it feels to not have him in my life, I want to fucking die. Obviously, I won’t do anything to myself. I love God and my family too much to waste my life. I have plenty to live for, but I wish there was some way for me to kill the “pained” part of me. I just want to turn off the “hurt”, you know? Only a parent who has lost a child can understand how hard it is to go on day after day after day. Each day is simply another day without your baby. Just another day spent missing what was never meant to be.

I will never be over losing my baby.

Would you if you were me?

Wednesday, August 19, 2009

The Great Helmet Debate...

I was advised by Dr. Awesome on Monday that we should probably start looking into purchasing a helmet for Niki.

(Insert Stress Here), folks!

John and I have been going back and forth about this issue for a long time now. "The Great Helmet Debate" is something that we've been toiling over since Niki was born. There are different philosophies about helmets in the "hemophilia community". Some HTCs are adamantly against them, others allow the parents to make the decision, while some strongly recommend helmet usage. Even when we attended HFNC's Family Information Day, we noticed that some kids wore helmets, while others didn't. Different strokes for different folks, I suppose.

Personally, I'm torn.

To be honest, John & I would prefer that she didn't wear one. The woman that we met with FVII didn't agree with the idea of a helmet either. Why does this have to be so hard people?! I didn't have to think twice about the simpler safety measures. Knee pads for crawling, thick padding for seating and bedding, a safety net (I decorated it with butterflies) over the playpen, but a helmet? A helmet is totally different.

Niki at 3 months old. Comfortably breaking all the Boppy rules.

John and I both agree that we want Niki to have a "normal childhood". And if something can't be normal, we try our best to make it as close to "normal" as possible. (See butterflies above.) Helmet hair 24/7 isn't exactly what I envisioned for my queen. I'm sorry, I'm just being honest. Aside from the that, seeing an infant wearing a helmet isn't exactly normal to the rest of the world.

People will stare.

I'm not going to sugar coat it--the helmets I've seen so far haven't been pretty. Even if I were to jazz it up with my glue gun and some bling, it still wouldn't be cute. And, from what I learned today, a soft-shell helmet wouldn't be covered by my insurance because it's not *technically* medically necessary. I work in health care so my coverage is fantastic! Money is not the issue. I'm even willing to pay out of pocket. Frankly, it's the social stuff that bothers us. At the same time, I'd never be able to forgive myself if she had a serious head bleed that could have been prevented. Mobility is swiftly approaching so we need to make a decision soon.

But damn it....I just don't know what to do!

If I were a stay-at-home mom there would be no debate. Niki would NOT wear a helmet because I would be able to watch her like a hawk. Alas, this is not the case. John and I work full time so the helmet gives her added...coverage. Even though she is in good hands with her current childcare arrangement (home-based daycare with my MIL), she is not 100% immune to the possibility of getting hurt. My MIL takes care of other children too. She cannot constantly hover over Niki as she learns to crawl, walk, and run! My baby is going to get hurt whether I want her to or not. Don't get me wrong though, this was a fear I had with the boys too, I absolutely hated the idea of bumps and bruises. Every parent worries about their baby getting hurt as they learn to be more mobile.

My fear is simply heightened by Niki's condition. (And of course, losing Ethan.)

So, what to do...what to do? Do we strive for a normal childhood and risk it? Or do accept that the helmet may be normal for her and go with it?

Guess we'll have to wait and see...

Tuesday, August 18, 2009

More on Niki...

I am happy to report that Niki was baptized this weekend. :)

It was so beautiful, too. Unfortunately, I started to have flashbacks about Ethan during the ceremony and almost lost my composure. You see, Fr. Francis also baptized Ethan. Witnessing Niki's joyful baptism was a such stark contrast from the solemn one I saw last year.

Nevertheless, everything went smoothly and I know He was with us that day.

Niki was so beautiful. (I'm her mother so I'm obviously biased, but still...she really was.) My baby girl truly enjoyed having the warm holy water poured onto her hair. Her facial expression reminded me of the relaxed look women get when they have their hair shampooed at the salon. She was in total peace. Ah, I feel so much better now that she's a "child of God". :)

Sometimes I wish my eyes could take pictures. It would be nice to share how lovely she looked at that moment. I'll remember that visual for the rest of my life.

In other news, it's a lab week and the results came in....

Everything is fine. Almost too fine. Scary fine. Quiet before the storm fine! But...hey, that's just my paranoia setting in. She really is fine, but I'm a worrywart. Cut me some slack, okay?! Her appointment with Dr. Awesome was completely uneventful - just the way I like it. :)

The only change we discussed, which could be approximately 6 short months away, is the possibility of switching from the Broviac to a portacath. This, my friends, is a HUGE deal. When John and I learned of Niki's diagnosis, we scoured the internet and stumbled upon this lovely video on the internet. We were terrified with the idea of infusing her at home until we saw it. I've dreamed of the having a port-a-cath since the moment I laid eyes on how user-friendly it is. (A billion thank-yous to his parents for posting this video. It was our first glimpse of how manageable and "un-scary" her condition was/is.) From what I've read (and saw) port-a-caths are utterly awesome. No need to worry about tubes getting caught anywhere.

Niki has a Broviac. (Click here if you want to learn more about Broviacs and Port-A-Caths.)

JD and Niki at 3 weeks old. Home infusion at its finest. ;-)

I always thought that Niki would treat her Broviac as a part of her normal anatomy. She had it since was only a few days old so I figured she wouldn't be interested in it. On the contrary, she's just as enthralled with her "extra appendage" as the boys were with their naturally occurring one. I suppose the color doesn't help either...

She started to show interest in her Broviac at around 2 or 3 months old. The color would catch her attention back then. Now, she's constantly clawing at it. It makes it very difficult to maintain sterile technique when she's swatting, grabbing, and pulling her Broviac. I'm still worried about it getting pulled out/moving...even with the Dacron cuff, stress loop, tape, biopatch, and tegaderm to protect it! We're performing dressing changes more frequently now because of her antics. Aside from that, the Broviac is just so restrictive. You can't submerge the wound so bathing is difficult. Dressing changes suck. Tegaderm and paper tape aren't exactly made of steel so if she wants to yank at it (which she does though her clothing sometimes), she is perfectly capable of doing so. Even though surgery is scary, the benefits outweigh the hassle.

Only 6 months-ish to left to protect her Broviac. I can't wait to be rid of the tube.

While we're on the subject I need to get something off my chest. So please bare with me as I go off on a different tangent for a moment, okay? I have a pet peeve that I am compelled to share lest those who know me IRL make the same error. All of you know that I'm totally open about Niki's condition/treatment. As a matter of fact, I am willing and eager to answer questions because it shows me that you genuinely care about Niki. Nothing to be ashamed of, right? ;)

However, I cannot stand being asked about Niki's Broviac only to hear it then be referred to as a PICC line.

They are two totally different things, my friends. A guy from my class did that today (it's happened about a billion times with other strangers/family/friends) and it ticked me off just a little. It always pisses me off when people ask me a question they think they know the answer to. Why bother to ask if you think you know what you're talking about? When I say she has a central line, and the line is obviously inserted centrally, AND I refer to it as a BROVIAC, do not, I repeat do NOT call it a PICC line. I will correct you and then think you're a jerk for not listening carefully. I'm sure this person (and the dozens of others before him) didn't mean any harm, but I'm human and stuff just rubs me the wrong way sometimes. There, I feel better.

That's all, folks.

Thursday, August 13, 2009

My Happy Place

I grew up in Colma, California. (If you don't know about Colma, you should go here and here.)

Needless to say, the concept of death was not something I had to learn the hard way. Death wasn't really a big deal when I was a kid. I know I may sound very insensitive, but give me break, my high school was next to cemetery for crying out loud. Living in an area where funeral processions are a daily occurrence kind of desensitizes you to death. In fact, when I was growing up, the neighborhood kids (myself included) would use the multitudes of local cemeteries as a playground.(But...oh, how we avoided them like the plague when nightfall approached!) Despite being surrounded by constant reminders of death, I've always had mixed reviews about the cemetery.

Personally, I was terrified of what could happen there at night.

My negative perception didn't happen gradually. I was traumatized. On many errand-running occasions, my older brother would drive with me to the cemetery and park in between mausoleums. It would be pitch black (nothing but the headlights to illuminate our surroundings) and he would hop out of the car to hide from me. I would sit utterly horrified in the car until he scared the crap out of me by yelling "boo" or something to that effect. I was about eight or nine at the time so the emotional damage stayed with me for years. Now that I look back on it he was just being a "mean big brother", but the cemetery stopped being a "fun" place once I associated death with the spooky afterlife. I hated the cemetery and everything that came along with it....up until last year.

Now, not a day goes by where I don't think about the cemetery.

The cemetery has turned into "my happy place". As morbid as it may sound, I look forward to visiting my baby at the very place that I spent so many years avoiding. My fears have been lifted and even nightfall doesn't bother me. Security has gently reminded me that it was closing time on countless occasions. It is the one place in the entire world where my little family can physically be together...all of my cubs in one place.

My Birthday Picnic with ALL of the Cubs

Monday, August 3, 2009

Successful Mother...

(Reposted from my November 2007 blog entry. I've been so stressed with school lately, that I needed a quick trip down memory lane. I desperately needed to remind myself that I am a mother first and foremost, before anything else. After I read this entry, I also realized that my writing style and subject matter changed drastically after losing Ethan. Ignorance was truly bliss. I miss the days when my ONLY stressful goal was this...)

As if being a Mother isn't challenging enough, we live in an era where Mommies must be capable of doing it all. In order to be a successful Mother in this day and age, we have to be what I like to call a "hybrid person". We are supposed to be Donald Trump, June Cleaver, Emeril Lagasse, Albert Einstein, Martha Stewart, AND Jenna Jameson all rolled into one flawless package. It's true I tell you! The modern day woman is expected to be a powerhouse in the work force, the "perfect homemaker", a master chef, smart enough to know the answer to homework's hardest questions, a crafty domestic genius, and a sex goddess!

Let's explore this shall we…

Donald Trump

He's" tough, he's smart, and he's successful at what he does. Donald Trump's "business-mindedness" is a perfect example of what expectations mothers in the workforce must live up to. Mothers have to be as no-nonsense and committed to their job as Donald Trump is. We live in a society where it is mandatory to have a dual income household. Working & motherhood must coincide without the two worlds colliding. Moms must succeed in the workplace and cannot let their family issues jeopardize their productivity. Sure there are laws that prevent discrimination and allow time for family leave, but most employers have difficulty compromising company time for ballet recitals and basketball games. Your co-workers might be bitter if they have to pick up your slack. Mother or not, you are expected to conduct business in the same retrospect that your single and child-free co-workers do. Being a breeder doesn't mean you don't have to be as productive as the next person. A successful Mom MUST balance the demands of both work & family.

June Cleaver

"Leave It to Beaver" gave birth to the quintessential image of the "Perfect Mom". June Cleaver's character loved nothing more than to stay home and care for her family. Her appearance was manicured at all times. She could be on her hands and knees turning up soil in the garden and June would still have her hair lookin' right! Being the "Perfect Mom" that she was, June always had a batch of fresh baked cookies on hand in case her son Beaver needed some comfort. No matter what bewildering situation Beaver got himself into, June's mothering tactics were flawless. That bitch…she was never stressed. Okay, okay - so maybe June Cleaver is fiction, but nevertheless, modern day Mommies strive to be her. We want to bake cookies and look cute while we're raking shit in the garden. We want to have healthy home cooked meals ready by 6pm sharp. We feel like failures when dinner is take-out from Fung Wong and it's that damn woman's fault! Moms must try to be modern June Cleavers. Successful Moms are there at all times for their children and try their best to have healthy meals made every night. No stress, just perfection.

Emeril Lagasse

Picture this: It's 7pm, you just got home, and dinner still isn't made. All you have in your pantry is Kraft Macaroni & Cheese and some Hamburger Helper. The kids are hungry but you can't feed them mac & cheese for dinner and there's no ground beef for a quick, but hearty boxed-dinner a la Betty Crocker. What are you gonna do?! What are you gonna do?!! Rather than succumb to Fung Wong's 2-hour wait-for-chow mein-delivery standards (it's a true story I tell you!), you have to get creative with whatever you have in the kitchen. Lord knows you ain't about to go full out grocery shopping with your kids in tow!!! So you start up the computer and hope to God that can give you a recipe to throw together. Your items are random, but you hope for the best. In the search field you enter "lemon and chicken". Lo and behold, you have all the ingredients in your very kitchen own to make Emeril's Honey-Lemon Chicken! It's fast, it's easy, and once you're done whipping it up...BAM!!! the kids and your Baby Daddy are happy & well-fed. God, I love the internet! Perhaps googling recipes may be cheating a little, but that's the beauty of cooking. You can build on basic recipes and make them your own. Emeril is the bomb because he's never let me down. No matter how random my food items might be, Emeril has always had a recipe for me. Mothers need to be creative geniuses in the kitchen. We are not supposed to cook the same tired old pasta dish or ethnic cuisine from the motherland! Successful Moms do know how to cook and cook well.

Albert Einstein

Children expect their mothers to know the answers to everything. They are inquisitive little suckers from the moment they can speak. Generating answers for the incessant "W questions" is easy. Moms can wing it for a while and hope that their kids forget the silly answers our quick thinking concocted. Where do babies come from? When can I drive? Why do you have a tattoo? Who is Mike Jones? Whatever the question may be – Moms have the option of answering honestly or light-heartedly. Things get tricky when your little angel starts school though. That's when your answer really matters. Hence all of the sudden you have to be Albert Einstein. Sure it's easy when they're first starting out - 1+1=2, the big hand tells the hour and the little hand tells the minutes, a penny is 1 cent and a dime is 10 cents. Then it slowly gets harder. Memorizing the multiplication table, the very core of the 2nd grade, creeps up on you! Then comes long division and a whole bunch of basic shit you haven't done in years thanks to the almighty calculator. How do you divide a fraction using long division again? Sure you memorized all 50 states and their capitals in 5th grade, but that was EONS ago! Algebra is a distant memory, but your sweet little angel and their teacher expect you to know how to navigate through a problem like it was the back of your hand! Being a successful Mom means you won't be a dumb ass when your kid needs help with Geometry homework or memorizing the Preamble. After all, how could you expect your kid to learn if you don't invest the time in knowing the material yourself? Successful Mothers cannot rely on Ask Jeeves to tutor their kids. Lazy brains will breed lazy brained children.

Martha Stewart

Sure she went to jail for securities fraud and she's a raging control freak, but Martha Stewart can put together a mean Halloween costume with some foil, duct tape, and toilet paper. Now that's talent! Mothers are expected to be domestic miracle makers just like Martha. We should be able to change a light bulb and know nifty stuff like a potato will unscrew a broken bulb from a lamp. If your baby daddy/hubby/significant other lost a button on his work shirt, your ass better know how to slap another bad boy on there! As old fashioned as it sounds, a modern day mother should be no stranger to needle and thread. You can't always rely on the dry cleaner to mend your clothing ya know? If you need to bake 30 cupcakes at the last minute for a PTA meeting, you better already have a muffin tin handy. You can't run to Bed, Bath, and Beyond @ 2am the morning you remember about it. In other words, Moms should already be prepared for life's domestic blunders with tons clever solutions on hand. You can't always pay your way out of trouble. If the kid needs to make a replica of the solar system or needs to create a volcano for a science experiment, you can't exactly go to the store and buy it now can you? Successful Mothers are miracle workers when it comes to last minute projects, household remedies, and keeping life organized in general.

Jenna Jameson

After attempting to be all of these unattractive people, Mothers still have to be sexy. Yep, the MILF factor is very important not only for appearances, but for your own sanity too. Mother's shouldn't let the stress of parenthood make them look like something the cat dragged in. How many times do you remember being totally embarrassed by your mother's less than polished looks? How sexy will you be to your hubby/baby daddy (or potential male suitors if you're single) if you let your self go and de-sexualize yourself? Having a spicy sex life will rejuvenate anyone so keep thangs hot! Obviously, mothers aren't expected to be freaking porn star nymphomaniacs, but we still need to be sexy. Moms aren't out there trying to be Jenna Jameson, but we want our significant others (or male callers) to look at us as the same sexy little tramps they fell in love with. LOL! Stretch marks or not, Moms should still feel attractive and make the effort to meet their own expectations of that quota. If your pregnancy left you with droopy nipples, but the extra baby weight you're carrying around makes your ass looks like Kim Kardashian's – accentuate your ASS-ets! Besides, what woman doesn't want to be a "hot soccer mom" someday? Successful Mothers maintain their sex appeal no matter how tired they are. Buy some clear heels if ya have to.

Well there you have it - just my two cents on what it takes to be "Successful Mother" (aka: hybrid person). To give the guys some credit, I'm sure they have to be their own "hybrid person" too. Being a successful parent in general is tough work. However since I'm not a dude, you're just going to have to settle for a female point of view for now. Guys, remember this blog when you think of your mothers and future baby mamas. Tell your Mom/Baby Mama she looks pretty if she got a haircut for crissakes! Ladies, whether you're already a Mom or plan on being one in the future, rest assured the ride is a bumpy one, but it's well worth it.

Sunday, August 2, 2009

Little Lion...

Ethan had the wrong name during his entire NICU stay. The hospital uses the last name/maiden name of the mother for all admitted newborns. John and I aren't married so Ethan was referred to as "Ethan Intal" during the final days of his life. (I'm still trying to correct his death certificate.)

I suppose this bothered Ethan when he was still present.

The night before Ethan had his MRI, one of the night shift nurses made a name tag for his isolette. The name tag had a lion on it. The following morning (just hours before we received his poor prognosis) I asked the nursing staff if they knew that his real last name was “de Leon”, but they said no.

An interesting coincidence, don't you think?

His last name means "lion". If there is one thing that all of the men his family has in common, it is deep pride in their last name. I guess Ethan had this pride too. Even though he was still medically alive, his soul was already floating elsewhere doing things to let us know he was still around. Showing pride in his name was one of them. And so he became "Our Little Lion".

He was the E.N.D. of the boy cubs A.N.D. the reason behind the safe arrival our little girl. :)