The Art of Lion Taming

San Francisco Cupcake Challenge

2012-01-13T21:05:00.000-08:00

Damn my pre-diabetes to hell, but I'm infamous for having a gigantic sweet tooth! With that being said, I also happen to be a shameless baked goods snob. I have a sensitive palette so I only patronize the best of the best whenever I'm in need of a baker.

Enter Marie Fontela of Tiny Treats.

Marie and I met in 2009 while I was planning Niki's 1st birthday party. I was searching for the perfect treat to accompany Niki's chocolate fountain and there she was right under my nose. Marie was referred to me by a friend of a friend and I immediately fell in love with everything I saw on here website. She responded to my email inquiry quickly, and within the week, we met and she gave me some samples of her tiny treats.

I was hooked from moment on.

There has a been an internet explosion of "how-tos" on cakepops and let me tell you, not all cakepop-ers are created equal. Tiny Treats is a professional catering service that holds itself to the highest standards when it comes to quality and taste. Marie's cakepops are from scratch -- none of that greasy boxed stuff -- and she only uses the best ingredients. Her red velvet cakepop is pure art. It's moist, delectable, and the candy-to-cake ratio was perfect.

From Niki's Royal Tea Party

Oh, and don't even get me started on her mini cheesecakes. Not only is the price budget-friendly ($40 for 100 mini cheesecakes? Whhhhat!) but they're also to die for. My mouth salivates at the mere thought of them...

But her cupcakes? Her cupcakes are my favorite! I ordered mini cupcakes for Niki's soda shoppe-themed party and again, I fell in love. Actually, I was sad that the kids weren't old enough to truly appreciate the artistry that they were experiencing in their happy little tummies.

A Tiny Treats cupcake feels like a perfectly orchestrated symphony of flavor happening in your mouth. Yes, it's THAT serious. ;)

Over the years I've come to find out that Marie and I have quite a few things in common -- too many to list! I'm convinced we're kindred spirits. But to my dismay, as many times as we've talked about hanging out, it has never happened. She's the mother of three beautiful daughters and I've got my fourlittlelions so things can get pretty hectic for both of our schedules. BUT...I'm happy to report that she's recently signed me on to make a Wonka-style invitation for an event she has coming up. We're finally going to have a pow-wow soon!

When I found out that Tiny Treats was requested to participate in the San Francisco's Cupcake Challenge I knew that I had to support her. Tiny Treats has participated in the SF Peninsula Kids Party Expo along side my all-time fave photographer (and winner of Bay Area Parent's Favorite Photographer Award 3 years in a row!) Kim of Super Kimagery and my familia at SugaMeSweets (the most talented cake artisans I know!) And when the Giants won the World Series, this bad-ass baker made 500 cupcakes (yes 500!) and shared them with the public...for free!

So does Tiny Treats deserve your support? Hell to the yes.

Marie is battling it out with several San Francisco bakeries this SUNDAY, JANUARY 15th and the winning business will be dubbed with having the best cupcake in San Francisco. And my friends, Tiny Treats deserves the win! Much to my growling tummy's dismay, I won't be able to attend because of John's Rite of Acceptance mass at our church. But...that shouldn't stop you! Follow the link below so you can be part of this awesome event where YOU can be the judge!

http://www.drinkeatplay.com/sfcupcakechallenge/

Good luck, Marie! You know I'm rooting for you. :)

About "Different Dream Parenting" - A Guest Post from Author Jolene Philo

2011-12-14T23:06:00.007-08:00

On October 26th, I got a lovely surprise in the mail -- my copy of Jolene Philo's book, "Different Dream Parenting" finally came in!

I had the privilege of speaking with Jolene in August 2010. She was in the early stages of writing and I was one of the many parents that she interviewed to be included in the book. Jolene already wrote a wonderful book titled "A Different Dream for My Child." The book I was being interviewed for was going to compliment that book. It was an honor to get to know such a phenomenal woman and to share our family's story. There was something therapeutic about talking to Jolene. Since then I've been thrilled to see Jolene posting some of the information I've shared with her on her blog. It feels good knowing that my input somehow helped others. And Jolene, thank you for dubbing me your "Queen of Apps" in your latest post. I think I'll have to put that on my resume. ;) You can click the links below if you want to see those blog entries on differentdream.com.

Seriously? There's an App for That? - Posted September 20, 2010
What the Personal Caregiver iPhone App can Do For You - Posted October 27, 2010
Breast Feeding: There's An App for That, Too. - Posted May 27, 2011

Below you'll find a guest post from Jolene as well as an except from the book. You can purchase the book from her website or you can click here to purchase it at 10% off the retail price. I also have one copy that I want to give away to one of my readers FOR FREE! If you know of family who could benefit from this book, or if YOU can, please feel free to privately message me or comment below. :)

Words from Jolene...

When our beautiful newborn boy was transferred to a regional hospital, my husband and I felt lost at sea. A few hours later, we learned that our baby required immediate surgery at a university hospital 750 miles away. Without it, he would die. That news threw us overboard. We longed for someone who could come alongside and pull us out of the water. A book to chart a map through unfamiliar waters and assure us of God’s presence.

But our son was born in 1982 when pediatric medicine was a relatively new field. Families like ours were hard to find. Parenting books hadn’t been written. The internet didn’t exist. Over the next twenty years, even after the surgeries and medical procedures that corrected our son’s condition were over, my search for parenting resources yielded scant results. Eventually, I sensed God nudging me to come alongside young parents lost at sea like we had been, to create a map they could follow.

Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is that map. It’s a map for parents of kids living with medical special needs as well as conditions like Down Syndrome, juvenile diabetes, developmental delays, and autism, and those facing a terminal diagnosis. It guides parents by providing tools and resources they need to become effective advocates for their kids.

The book features interviews, advice, and resources from more than fifty families, including Tiffany, and two dozen professionals. With their help, the book addresses the situations parents face every day. Things I wish someone had told me, like:

• Asking questions after diagnosis.
• Dealing with insurance companies.
• Preparing a child for a hospital stay.
• Accessing financial resources and government monies.
• Accessing special education services.
• Determining optimum level of care.
• Mobilizing volunteers at home.
• Supporting the sibs.
• Preparing a child for death.
• Planning a funeral.
• Participating in community and church events.
• Creating a special needs trust for adult children with special needs.

In addition to practical advice, Different Dream Parenting tackles spiritual questions families are often afraid to ask. Questions about:

• God’s sovereignty
• Parental guilt
• Setting and maintaining spiritual priorities
• Grieving for children living with special needs
• Grieving the death of a child
• Passing faith on to children with special needs

Thirty day prayer guides in the appendices are for parents too exhausted to form their own prayers.

I remember what it’s like to be lost at sea, thrown overboard by an unexpected diagnosis, and drowning under a flood of caregiving demands. My goal is to put Different Dream Parenting into the hands of floundering parents so they have a map and know they’re not alone. To order the book, visit www.DifferentDream.com and click on the “buy the book” tab.

Thanks, Tiffany, for this opportunity to guest blog at The Art of Lion Taming and tell people about Different Dream Parenting.

An Excerpt from the book...

I Didn’t Sign Up for This, God!

Have you ever had one of those dreams where you can’t move? The car is racing toward the edge of a cliff and you can’t lift your foot to press the brake pedal. An attacker is breaking down the door to your house and you can’t raise your arm to dial 911. Your child is about to run in front of a truck and you can’t open your mouth to scream.

My bad dream became a reality in 1982. My husband and I stood beside our son’s isolette in the neonatal intensive care unit. An IV needle pierced Allen’s tiny arm, and angry red scars crisscrossed his chest. One end of his feeding tube hung on a pole beside his IV bag. The other end rose from the soft skin of his tummy. Pain etched his wide forehead and tugged at the corners of his perfect rosebud mouth.

More than anything, I wanted to reach out and take his hurt away. But I was trapped in a bad dream. Immobilized. Inadequate. Helpless. Though God had assigned me to love and care for this beautiful child, I could do nothing to minimize his pain. My thoughts were an inward scream. This isn’t what I signed up to do, God! I don’t want to be a helpless onlooker. I want to parent my child. How can I care for him? What can I do?

As the parent of a child with special needs, you’ve probably experienced the same sense of helplessness. Whether your child is critically or chronically ill, mentally or physically impaired, develop- mentally or behaviorally challenged, you want to do something. You want to ease your child’s pain, but you don’t know how. You want to help your child realize his or her full potential, but you don’t know where to begin. You want to ask God about your child’s suffering, but you don’t want to be condemned for questioning His wisdom. You want to believe God is with you, but you don’t know how to find Him.

You’re stuck in a bad dream. You can’t move. You can’t speak. You want someone to shake you awake and tell you everything will be okay. Instead, you wake up and must become the parent you never expected to be. You doubt that you’re up to the task. You’re worried about your child’s future. And you’re wondering, Does anyone understand what I’m experiencing?

The answer is yes, many parents understand your situation. In the United States,
• 10–15 percent of newborns, or 431,000 annually, spend time in neonatal intensive care according to the March of Dimes.
• 12 percent of children between ages 1 and 17 had medical conditions serious enough to require hospitalization between 2004 and 2006, the most recent years for which statistics are available at the Centers for Disease Control and Prevention.
• 13.6 percent of students between ages 6 and 21 were enrolled in some kind of special needs program according to the National Center for Educational Statistics. That’s 706,000 of our country’s school-aged children.

Lots of kids mean lots of parents, dads and moms who are valuable sources of information and advice. In this book, dozens of them share with you the wisdom they gained while parenting kids with special needs.

Support can also come from the surprising number of professionals who work with families of kids with special needs. These professionals—and the resources they’ve created—are available at hospitals, medical facilities, government agencies, private organizations, businesses, schools, churches, and more.

This book brings you advice from professionals around the country and provides information about national organizations and resources. It also gives tips about where to start searching for state and local resources. More often than not, your problem won’t be a lack of resources, but a lack of awareness of them or inability to access them.

Different Dream Parenting contains six sections: Diagnosis, Hospital Life, Juggling Two Worlds, Long-Term Care Conditions, Losing a Child, and Raising a Survivor. Each section is divided into four chapters. Three chapters address practical issues. The last chapter in each section addresses spiritual concerns.

Parents of kids with special needs often wrestle with prickly spiritual questions. I sure did. Sometimes I still do. So do all the parents interviewed in this book, and most of the professionals, too. Every day, we continue to ask questions about our kids’ lives and futures. Gradually, we learn more about how to trust God’s timing and wait for His answers.

As you read this book, please ask your faith questions. Read about how parents and professionals learned to ask questions, wait, and listen. Consider the answers they have discerned and their suggestions about how to find comfort and courage in God’s Word. When you are ready, try out their ideas about how to pray and use Scripture to hear God’s answers to your hard questions. The thirty-day prayer guides in appendix A are designed to help you engage in conversation with Him.

But even with prayer guides and Scripture to guide you, I know how hard it can be to trust the God who is allowing your child to suffer. So I won’t condemn you for asking prickly questions. Instead, I’ll encourage you, cry with you, and support you when your faith grows weak. When you can’t hang on a minute longer, I’ll hold you close until your strength and your faith return.

I hope this book helps you break out of your bad dream, wake up, and move forward with joy and confidence. I pray that the stories of parents and professionals in this book will give you hope and strength.

Most of all, I hope you discover the truth God has revealed to me and many other parents. Raising a child with special needs isn’t a bad dream. It’s just a different dream. And surprisingly, a different dream can be the best dream of all.

Taken from Different Dream Parenting, 2011 by Jolene Philo. Used by permission of Discovery House Publishers, Box 3566, Grand Rapids, MI 49501. All rights reserved

Girls just wanna have fun!

2011-12-12T13:24:00.000-08:00


A Tweet my boys sent me from my SIL's account

John and the boys went camping the weekend of my sister's bridal shower (8/12-8/14.) Lucky for me, my niece Demi agreed to sleep over to keep the girls and I company because I'm the biggest chicken-shit ever. It had been almost two years since we had one of our infamous sleepovers, and it made me realize how much I've missed her.

We had a blast-- whether we were watching Never Say Never or Odd Future music videos, laying in bed watching old movies, window shopping at super rad antique/vintage oddity stores, or exploring (and getting lost with very little gas in my tank!) in the Haight-Ashbury. It was good times through and through! She was a tremendous help that weekend.

Here are a few pics from my sister's bridal shower at Crown & Crumpet. There was a mix-up with our reservations -- we were supposed to get the private couch area by the fireplace -- but all in all we had a great time. :)

The banner was supposed to go above the fireplace so we had to improvise. LOL!

Favors and menu made by yours truly.

Noie's 1st tea party (Niki was with my MIL that day.)

The Bridal Party (and me unsuccessfully trying to hide Noie in her SleepyWrap.)

Snowflake Tutorial

2011-12-11T21:31:00.008-08:00

When I found out I was pregnant, I instantly knew that the baby's 1st birthday was going to be a "winter wonderland." My winter wedding plans were derailed by the little miracle growing in my belly so I vowed to have my wonderland come to life one way or another! Now here I am, exactly one year from the day I was originally supposed to get married, writing about my little snow baby's 1st birthday plans. :)

For the past few weeks, I've been obsessed with snowflake-making. If you follow me on Instagram or Twitter, you may have seen me churning out quite a few of these bad boys. I originally learned how to make them from a holiday craft handout that the boys brought home from school. Over time, I refined my technique and after numerous requests, agreed to post a tutorial on how to make them. This is my version of the many, many 3D snowflake tutorials out there. I promise it's a lot easier than it looks once you get the hang of it. :)

Materials:
6-8 sheets of paper*
1 pair of scissors
Tape
Stapler

*The size of the paper you use depends on the size you want your snowflake to be. Keep in mind that smaller snowflakes are much harder. With that being said, I suggest you use a standard 8.5x11 paper for your first snowflake. For the example below, I quartered one 8.5x11 sheet of paper. It's easier to photograph a smaller snowflake for tutorial purposes. (I used vellum paper, but you can use any paper you want.)


Materials

Step 1: Take the paper and fold it at a diagonal as pictured below.

Step 2: Trim off the excess paper to make a triangle. You can skip this step if you're using 12x12 scrapbook paper for your snowflake.

Step 3: Fold the triangle in half to make a smaller triangle.

Step 4: Take your scissors and snip the folded side leaving approx 1/8" at the end of your cut. (I put 5 straight slits.) You can eyeball the spacing -- it doesn't have to be perfect.

This is what it looks like when it's opened up.

Step 5: Now comes the fun part. Take a pencil (or your finger) and tape the two points of the inner slits together.

Step 6: Flip the paper over and connect the next row of slits on the opposite side. Flip over again and connect the next row and so forth. Repeat until all ends are taped together.

Flip & Tape.

Flip and Tape

A side view of the flipped & taped sheet.

The final product: One "arm" of your snowflake.

Repeat Steps 1-6 six to eight times depending on how many arms you want your snowflake to have. Note: Things go a lot faster if you mass produce your triangles before hand.

Step 7: Once you've created all of your snowflake pieces, it's time to connect them together. Take the center "x" on the side of the individual arms and tape or staple them together to create a chain.

Before being connected

Hope this picture clarifies where to connect them

The "chain"

Step 8: Take a small piece of tape and connect two arms together. Repeat this step until all of your arms are taped together in pairs.

For the sake of the tutorial, I took a picture of how to connect the ends BEFORE I made the chain.

Step 9: Close the chain once all of your centers are connected and stapled in the middle.

And there you have it, the finished product. :) Happy snowflake-making ya'll! :)

It's ALWAYS Sunny in Philadelphia?

2011-12-11T18:58:00.004-08:00

This past October, Niki's drug company invited me to share our family's story at a conference they were having in Philadelphia. With John's blessing, I accepted their offer traveled completely alone for the very first time in my entire life. I was nervous, but this was a once-in-a-lifetime opportunity so I couldn't pass it up. (I mean really, when was I ever going to go to Philadelphia again?) My trip was from 10/2-10/4.

Without further ado, here's the story of my trip in photo-essay format. :)

After we attended Church, John and I had a lovely brunch at JoAnn's in South San Francisco before I left Sunday night. My very good friend Kim took me there shortly after Noie was born and it was delicious.

Here's a pic of my breakfast from that day (The Gaucho.) I realize that my addiction to Instagram-ing EVERYTHING is borderline pathetic, but it's my blog and I'll document what I want, mmkay? ;-P

I took the red-eye to Philly and I tried my best to sleep for as long as possible. My flight arrived at around 6am EST. Novo Nordisk arranged for a driver to pick me up from the airport. The driver met me at baggage claim and he had my last name on a sign! Call me sheltered, but riding in my very own town car has to be one of the coolest things that happened to me this year. The guy had a hat and called me "Miss Intal" and everything! Made me feel like a real grown-up and shit.


Goodbye SF.

Hello Philly!


He was a history buff and had the most badass accent I've ever heard. :)

In case you haven't already noticed, I took pictures of pretty much everything so John could feel like he was there with me. The poor guy tried to get off from work so he could join me, but alas, I had to go alone. Here's some pictures of the hotel and of course, another food shot. That was the best oatmeal I've ever had -- I ordered it twice while I was there!

After I scarfed down breakfast, I took a nice long nap. I'm not a morning person (and I was still functioning on West Coast time), but somehow I managed to wake up at with enough energy/time to do some sight-seeing. First up, the was LOVE park. I've seen the "LOVE" statue around before, but I never knew its origin until my sister's friend Kid told me about it. It was close to my hotel so walked over to check it out. {Note: From this point forward, you'll see Ethan Lion-Lion make cameos in the pictures I took. The boys were sad that I was leaving so I told them that Ethan Lion was going to be their "stunt double" while I was in Philly. If Ethan Lion was in a picture, then that meant the boys were "there"too. Kev and Boo really got a kick out of seeing the Ethan Lion pics.}

See Ethan Lion?

After Love Park, I took a nice, leisurely walk to the world-famous Mutter Museum. It started to sprinkle as I was walking and I was ill-prepared. I quickly learned that contrary to the popular show's title, it is NOT "always sunny in Philadelphia." ;) Thankfully, I was able to duck under building overhangs to avoid getting wet.

The Mutter Museum let me use my CCSF ID (yes, I'm back in school) so I scored the student discount on admission. As I was adjusting my camera settings, the cashier advised me that pictures weren't allowed inside the museum. (Sorry guys. You can watch a YouTube video here if you want to see what the museum is all about.) There was a lot fascinating stuff in there, but there was some really disturbing stuff, too. There was an exhibit on President Lincoln's autopsy, the preserved liver of world famous Siamese twins, and the most disturbing part, preserved babies in various stages of development. There were also many "deformed" babies in jars as well.

Call me crazy, but I was compelled to pray for those poor babies knowing that their bodies would never be laid to rest. And I did just that...I prayed. Afterwards, I called John crying because I just needed someone to talk to. I wasn't expecting it, but it was the most disturbing thing I've seen in a long time.

The entrance

The ticket

A window display. Unclear if these things are actually real.

I wanted to go back to the hotel room, but John encouraged me to make the most of my trip. I felt better after I spoke with him so I rode the bus (last time I rode a bus was in high school!) to see all the historical stuff featured in National Treasure. I must say Nicholas Cage made the Liberty Bell and Independence Hall look 20 times cooler than it is in person. (Maybe it's the suspenseful Hollywood background music? Who knows?)

I wasn't very fond of US History in high school so I guess you can say I'm way too ignorant to truly appreciate the symbolism of our nation's history. Nonetheless, seeing all of these historical artifacts up close and personal was on my bucket list anyway so mission accomplished, I suppose. The 45 minute tour of Independence Hall was 40 minutes too many for my taste. I managed to glaze over all the history-speak just like I did in high school. I snapped my pictures, stepped back, and found myself being more fascinated by the the furniture and architecture than anything else. {I realize I sound like an unappreciative imbecile right now, but you have to at least give me credit for being honest.}

Cast from the Liberty Bell

Let Freedom Ring

The Path to Independence Hall

George Washington's Chair

The original railing that was here during Ben Franklin's time

Ethan Lion Lion propped on said railing

I still had a few hours before sundown so decided to check out the the Franklin Institute. I took the PHLASH to get there and discovered that I wouldn't have enough time to see the entire museum before it closed. (Side note about PHLASH, I highly recommend this mode of transportation if you want to sight-see in Philly, but don't have a car -- $2 will take you anywhere.) There was a really cool mummy exhibit there so I was bummed that I didn't make it in time to check it out.

For whatever reason I decided it would be a good idea to walk to the Art History Museum from the Franklin Institute. Bad idea! Not only was I wearing the wrong shoes for that type of walk (boots) but the area had too many trees for my taste so it reminded me of the type of places where joggers are found raped and murdered. There weren't any rapists or serial killers in sight, but I'm paranoid so I scurried as quickly as possible to the museum. (I should have took the PHLASH.)

I made it to the museum in one piece, but it was closed. (Boo!) No matter, I took my pictures and hopped back on the PHLASH to go back to the hotel. There were two very cute little boys who were racing up the stairs while their mom was taking pictures, and it made me miss my cubbies. It would have been so cool to take pictures of them at the top of the steps from Rocky.


Had a huge FML moment here. I didn't know the PHLASH went to the museum until I walked up and saw it parked in the front! LOL!

The view from the top of the steps.

I really missed the cubbies here.

Afterwards I took the PHLASH back to my hotel. As soon as I got to the hotel it dawned on me that I skipped lunch. I only had about an hour before dark so rather than go back to south Philly to try Gino's or Pat's, I asked to concierge to point me to the closest place with the best cheesesteak. I can't remember the name of the place, but it did NOT disappoint. As delicious as the cheesesteak was, I could barely finish half of that monstrosity. On my way back to the hotel I stopped by Starbucks to unwind from the day's events.

For his own peace of mind I promised John that I wouldn't go out after dark. So, I spent the rest of the evening chatting on the phone with him, doing my Physics homework, and panicking about my speech the following day. Oh, what a glamorous life I lead!

I woke up the following morning with knots in my stomach. I never spoke in front of a large group before! To say I was terrified is a gross understatement. To make matters worse, I felt myself getting weepy whenever I started to talk about Ethan while I was practicing the night before. I knew I would be mortified if I lost my cool in front of a bunch of strangers.

A picture I took while they were testing everything out on the projector. It was so weird seeing my stuff up there!

Time was on crack that morning because 1 o'clock was there before I knew it. I was on the brink of hyperventilating when I saw how large the ballroom was. The good news is the coordinators set me at ease right before my speech. It helped that I broke my speech up with a video of Niki's infusion and sharing some family photos. While I was presenting, I looked up at the crowd and I saw a quite few people dabbing tears from their eyes. I *almost* started to cry too, but by some miracle that I maintained my composure despite having to talk about some seriously depressing stuff. It was humbling to know that these complete strangers were touched by our story. I even managed to survive the question and answer portion. At the end of my presentation, I got to meet quite of the few faces behind the drug responsible for saving Niki's life. It was an awesome experience!

I had an hour to spare before I was supposed to fly out, but I called the driver to come pick me up a bit early. I had a great time traveling by myself, but I couldn't wait to go back home to my den. There's no place like home.

My First STD...

2011-12-06T02:48:00.001-08:00

If you thought this was going to be a post about my first sexually transmitted disease, you were wrong my friend. I've never had a STD, but I'd like to take a moment to state how much I enjoy that particular wedding acronym. You wouldn't believe how much fun I've had using that term in the presence of non-crafty folk. I miss the amusement dearly and hope to publicly use the phrase "making STDs this weekend" in the near future.

No my friends, today I'm sharing a picture of the very first Save-The-Date I've ever made. I crafted 250 of these bad boys for my sister Stef and her then-fiance Josh's vintage-style wedding. They know what they like so it was really easy to come up with font combinations that worked for them. I just adore how the STDs turned out even though, frankly, I'm certain I've got carpal tunnel after tying 250 teeny, tiny twine knots. ;)

This STD was the first of many, many craft projects stemming from what I will now refer to as the "Wedding-mageddeon" part of my life. Three weddings in two weeks = end-of-the-world for my poor back and fingers. But as much as I bitch and whine, I wouln't change that time in my life for the world. ;)

My First STD

Pink, Teal, and Gray Save-the-Date

While we're on the subject of "saving the date," I thought I'd also sneak in their super cute engagement photos. You guys know I'm a sugar-fiend so these candy shop shots had my sweet tooth aching for a fix. Also? The pictures were so awesome that they were featured in a wedding blog called Sparkle & Hay. You can see that post by clicking here. Their very talented photographer did an awesome job. If you want to see the post at Aubrey Joy Photography, you can click here.

Too Adorable!

My Best Friend's Wedding

2011-11-17T00:10:00.001-08:00

Please excuse the delay, but I just wanted to take a moment to share a few pictures of my best friend K's beautiful 9.10.11 wedding. Watching K&J interact with one another that day made me totally fall in love with their love. I kept smacking John in the arm because K&J were so gosh darn cute together. We had a blast that night.

My favorite parts of the reception?
The bride & groom's first dance and when the groom asked the DJ to dedicate Color Me Badd's "I Wanna Sex You Up" to the bride.

Low point of the night?
I bombed my MOH speech. I got so nervous that I forgot to read what I wrote down! Pretty darn sure I made an ass of myself, but I'm hoping I didn't disappoint too much. (Sorry K.)

Personal highlight of the night?
I "caught" the bouquet. And when I say caught, I mean that it fell on the floor next to me. This is the 2nd time I've caught a bouquet -- the first time was at L&D's wedding a few years ago. Alas, it feels like I'm destined to be eternally a bridesmaid, and never a bride!

Here are a few faves from the night. Enjoy. :)

Since '88

Naughty Flowergirl

Noie w/ John. (The boys were at my sister's wedding in Napa. Pictures to come!)

The escort tags

The tables were named after locations in the Bay Area and Alaska.

Fourlittlelions Designs :)

The Wedding Party

Super Delish!

K&J

After I caught to bouquet. Friggin. Love. This. Girl.

Thank you, and good night!

I was going on very little sleep the week of 9.10.11. It was challenging to be a one-woman show because I had tons of wedding crafting that needed to be done. I learned a lot so I'm grateful for this experience. I'd like to note that I couldn't have done it without John's help. Even though he grumbled about it, he did a LOT of cub-sitting and sometimes even helped me with crafty stuff if I was desperate. But don't worry, I paid him in sexual favors so we're solid. (LOL! I kid! I kid!) I was utterly sleep deprived the night before the wedding, but it was worth it so long as the people I love were happy. I'll post pictures of my little sister's vintage wedding as soon as I get them. :) In the meantime, more posts are coming your way...for real.

Magazine Articles...

2011-09-30T02:54:00.004-07:00

I've neglected to share the links to these articles. I've been very behind with my "what-been-going-on-in-our-den updates", but I'm cracked-out on coffee right now so I'd thought I'd share....

This is the cover story for HemAware's latest issue. There's a small blurb about my blog at the bottom.
http://www.hemaware.org/story/digital-connections

This article has a portion that talks about Niki's MedicAlert...
http://www.hemaware.org/story/medical-ids-could-save-your-life

This article was in Bay Area Parent's December 2010 issue. It received top billing for the article. We've been hand-crafting ornaments every year since I became pregnant with Kevie. Hoping that my cubbies carry on this family tradition once they start having cubbies of their own. :)

http://www.flashedition.com/publication/?i=53366&page=1

A piece about our ornament-making tradition

This one was for Bay Area Parent's January 2011 issue. It's an article called "The Going Rate." My friend J was also in this article. :)
http://www.flashedition.com/publication/?i=56736&page=1

A few screen shots...

A VERY cool thing that happened after this article was posted! Not only did it help me raise awareness for factor VII deficiency, but a woman recently diagnosed with FVII-deficiency came across the article, and contacted the author. We linked up and spoke with each other shortly thereafter. It felt good to help a fellow bleeder network with others in the community.

More posts coming in the very near future. Thanks for your patience!

Thought I'd Give This a Shot...

2011-09-24T20:45:00.000-07:00

Never entered contest before, but this one seemed pretty easy so I thought I'd give it a shot. You can vote once a day. Share the link as you see fit. :)

I screwed up and accidentally submitted a duplicate post, so please submit your vote on the link below. Doubt I'll win, but it shares Ethan's story and carries on his memory so I'm happy.

http://apps.facebook.com/yourlifecontest/content/thanksgiving-0

Oh How I Covet Thee, Dear Sleep.

2011-09-04T19:24:00.000-07:00

My Labor Day Weekend has been crazy.

For starters, I haven't slept since Friday night. Yes, you heard me right...

Friday. Night.

Yeeeeep, I think it's safe to say that I'm on the brink of delirium.

The good news is, I've officially finished formatting, printing, cutting, hole-punching, folding, knot-tying and totally assembling 200 ceremony programs (with 4 tabs each!) for my little sister's vintage-themed wedding. I also (by some miracle) managed to finalize design, print, and cut 100 reception programs last night as well. Her candy bar banners are done too! All I've got to work on are table numbers and 244(?) escort tags and I'll be officially done allllll the paper-crafting for my little sister's wedding.

Pictures of invites, save-the-dates, programs coming soon!

Oh but that's not all! I have also simultaneously worked on finalizing designs for my BFF's ceremony programs, escort tags, and table numbers. AND...I even managed to squeeze in some time to design my friend L's baby shower invites & sweet little BKs favor tags. And did I mention I had TWO back-to-back bridal showers and my big sister's wedding in the last three weeks alone?!

Swamped is an understatement.

But...this weekend hasn't been ALL about work though. I made sure I had some playtime, too. I took a mini-break from paper crafting yesterday, and gave my first shot at distressing some old apothecary drawers I had laying around. I used to hide the old, beat up thing in my craft closet, but be still my heart -- I've fallen in LOVE! It's amazing what a fresh coat of bold paint and sandpaper can do. Today, I also attended an antiques fair and scored a wonderful piece that I'm going to re-purpose. John thinks I should debut/sell it on my soon-to-be running Etsy store, but I might just keep it for myself. My nails look like crap (I neglected to use gloves), but I've discovered that aside from beating the shit out of eggs, NOTHING helps relieve stress like sanding the hell out of wood.

That book is TOTALLY me. ;-)

I've got a lot going on, but it feels good. Despite the exhaustion, I'm feeling much better these days. I know I've neglected my writing, but I'll be better about that once all this madness is over. In the meantime, thanks for your patience. :)

My Big Sister's Wedding...

2011-09-01T23:24:00.001-07:00

Here are a few pics from my big sister's wedding. My sister was a total DIY bride. She created everything herself -- including the all floral arrangements right down to her bouquet! She had a total of 300 guests flying from all over the state -- even as far as Canada! Each and every person got their own Teacake lovingly packaged by myself and my niece D. My sister did a damn fine job coordinating this wedding considering that she works fulltime, has a 1.5 hour commute, and has my rough-and-tough godson to take care of when she gets home. Yep, the SuperMomminess runs in the family, ya'll! I can't wait to see how the professional pictures turn out. :)

My Cubbies & My Godson

My Church

My Sis, BIL, Older Bro, & DJ Apollo

My Babies

Best Man & Maid of Honor

Last minute speech prep

3/5 Little Lions

Me & D

My Godson

DIY Awesomeness w/ TeaCakes :)

Set this up the night before the wedding :)

This tree has seen many parties ;-)

My MIL & Cubbies

Me & Mrs. Mariano

Me and my Grandma

Mi Familia

Intal Men - Pops, Bros, and Grandpa

My Grandparents :)

Pre-Engagement Video

2011-08-30T07:18:00.003-07:00

Here is my sister's pre-engagement video. This super awesome shoot was done my very talented friends Dex Beats & Co. I highly recommend Calixte Works for your next event. If you want to see professionalism and creativity at its finest, go to them! You can also see their work at Benefit Cosmetics -- they shoot their tutorials too. Yes my friends, they are THAT talented.

Anyway, enjoy! (Don't forget to turn off the music at the bottom of this page.) One wedding down, two more to go!

Description from Calixte:

"This is the pre-engagement video that we showed at the reception of the newly weds wedding. The story behind the "24/7" idea came about when the couple mentioned that Eric proposed to Denise during an actual argument. That, and they are huge fans of the HBO series.

Wedding trailer coming soon. Enjoy!"

Eric & Denise Mariano "24/7" from Calixte Works on Vimeo.

Wedding Overload

2011-08-17T01:20:00.001-07:00

Helloooo bloggy friends!

I'm taking a quick break from wedding crafting so I can blow some steam. Three very important ladies in my life are getting married in less than three weeks and I'm officially experiencing wedding overload. It's exciting and terrifying and I'm not even the bride! LOL! I'm starting to understand why some brides (well, the ones who can actually afford to) quit their jobs to devote their time to wedding planning.

This.Is.Crazy!

I'm not complaining -- there is nothing more rewarding than seeing the fruits of my labor being appreciated by people I love -- but I must admit I'm a bit overwhelmed! I'm not stressed about the work load, but I'm anxious because I don't want to disappoint anyone. I take pride in my work and I don't cut corners. I've been doing this party planning thing for 8 years now (since Kevie was born), but I've never done a wedding! So, my inner "craft crackhead" has come out and reared its ugly head these past few weeks. I've been very snippy lately, but it's mainly because I've set deadlines for myself and ohmygosh I keep getting disturbed! It is virutally impossible to get anything done during the day/evening so I tend to be most productive when the house is quiet as a mouse. I'm sacrificing sleep, but I say it's worth it! :)

It has been invigorating and therapeutic to work with my hands and use the creative side of my brain. I've been going through so much emotionally these past few months that I really think I needed this. As stressful as it has been, I need to keep my mind, fingers, and body preoccupied with something other than my altered emotional state, ya know? As exhausting as it has been, in the end, I know all of my hard work will pay off. :)

It's 1am and I'm rambling, but I feel better now that I've gotten these thoughts out of my head. As always, thanks for "listening."

I'm In Love...

2011-04-26T01:36:00.005-07:00

Noie just turned three-months-old on Easter Sunday. Three months may not seem like a very long time, but I honestly can't remember what it felt like without her in my life. Our little family just feels all the more complete with sweet little Anjali in it.

I barely remember what it felt like to be like this...

Taken 1/23/11 @ 11:17pm -- just before we left for the hospital

It's hard to imagine there's a tiny person in there, isn't it? That the curve of my belly actually follows the sweet curve a teeny, tiny back. Motherhood is surreal in that sense, I suppose. Two separate human beings are one for an extraordinary moment in time. Sometimes I forget that the tiny fingers I kiss with my lips are the same fingers that once tickled my insides not too long ago. I guess I never really appreciated that concept until Anjali was born.

Taken just seconds after she was born.

Noie is quite possibly the first newborn that I've ever truly had the opportunity to appreciate. Now, before you think I'm a bad mother for admitting this, let me explain. I turned 21-years-old the day Kevin was born which means I was very young and naive. I was so overwhelmed with adapting to motherhood that I never really got to fully absorb the beauty of those first few days with my first son. When Anthony was born just 25 months later, I was distracted by trying to learn how to care for two cubbies instead of one. My Ethan was only home for a few short days and then he was gone. And lastly, Niki was in the NICU for several weeks after she was born so I didn't have much time alone with her.

I really didn't have the time to absorb it all.

Maybe it's because I'm little older and more mature now. Or maybe it's just a culmination of everything that has happened in the past three years. Or perhaps it's even because she looks so much like Ethan. Whatever it is, Noie's birth has made me appreciate motherhood on a whole different level. It has finally dawned on me that motherhood isn't only about doing, but it's about feeling, too. I'm more conscious of sensations and marveling at things like never before.

This must be what it's like to see the world with new eyes. To feel the world with new skin. To smell the world with new senses. To trust the world with a new heart.

This is what complete trust looks like...

This is what our family has become...

This precious girl is ours...

It feels like nothing else exists when she's sleeping on my chest. I'm at total peace when her downy hair caresses my cheek while I breathe in the delicate, rythmic puffs of her breath. It makes my heart melt.

Words can't describe how beautiful motherhood is, but this slide show comes pretty close to how wonderful it feels to have Noie in my life. The photos were taken by Kim of Super Kimagery. She's a such a talented photographer, and I highly recommend her newborn session if you live here in the Bay Area. (Thank you Kim for capturing such a special moment and for sharing a song that I now consider part of the "soundtrack of my life.")

I wish I could embed this slide show, but please do click the link below. I hope that every mother has the chance to fall in love with their baby as much as I have with mine.

www.superkimagery.com/noie

God is good.

I've Missed You, Blogger.

2011-04-20T23:53:00.004-07:00

Okay, so I lied.

This post is not about my oh-so-yummy NoieGirl & why I think she's the best thing since sliced bread. And no, this is not a post about Noie's birth-day & John's "birth partner fails." And no, this is not a post about everything that hasbeen going on with our den since friggin' NOVEMBER!!

No, this post is about how much I miss writing.

As God as my Witness, I swear I'll get to all of those posts eventually. But right now? No. Right now I need to vent. I recently discovered Blogger's MMS blogging feature so I thought I'd give it a whirl. I spend most of my time fiddling with my iPhone while I nurse anyway, so why not, right?

It's been months since I've had the time to actually sit down and write a post though. Even my HemAware blog has suffered, and that my friends, SUCKS! I miss writing!!! I miss feeling the soothing warmth of my laptop on my legs. I miss pounding out my frustrations on the keyboard. I miss being up-to-date with this blog. I hate that I have such a huge backlog of stories to document.

I foolishly thought maternity leave would allow me more time to play catch-up, but I was utterly and completely WRONG! On the contrary, I have zero time for myself these days. I don't even know who I am anymore. And usually I'm so...together.

Quite frankly I've had a hell of a time adjusting physically, hormonally, and emotionally to this new lifestyle of ours. I've developed a superwoman complex so it's hard for me to even admit that I'm crumbling from the pressure. I've spread myself too thin, burned the candle at both ends, and bit of more than I could chew many times before and I've NEVER faltered.

I'm what I call a "functional wreck."

These days it's a challenge to be the old me -- to meet the demands that I used to so effortlessly. I'm still doing okay -- I meet a majority of my daily goals -- but I've noticed myself slipping in other areas. I just want to be superwoman again, you know? I'm working on it, and I'll write about that journey sometime soon, too.

But for now, I just needed to write.

My Little Bunny...

2011-04-19T23:54:00.002-07:00

She's quite possibly the first cubbie I've ever truly enjoyed. I'll explain why in my next post...

Support Please!

2011-04-15T14:51:00.003-07:00

We are celebrating World Hemophilia Day one day early. Tomorrow morning my team, Lucky Factor Seven, is walking in memory of Ethan & in support of Niki. Please consider donating today. We're fundraising to raise awareness for the bleeding disorders community.

Believe it or not, $7 to raise awareness for Factor VII Deficiency will go a long way!

Here's the link to my
team page:
http://my.e2rm.com/TeamPage.aspx?langPref=?EventID=62450&LangPref=en-CA&TeamID=203917

Thank you for your support!

The Littlest Lion Arrives

2011-03-24T23:02:00.004-07:00

Here's my HemAware post for 3/23. (I've been on a blog hiatus with them too.) I'm slowly readjusting to our new lifestyle so "follow" or keep checking back. More posts to come! In my next post, I'll dish all the dirty details about Noie's birth day. It goes beyond golf, ya'll. ;)

The Teaser Tweet.

http://www.hemaware.org/blogs/diary-hemomom/littlest-lion-arrives

In case you missed it, I was miserable during the final weeks of my pregnancy. So, imagine my relief (and pain!) when I realized my baby girl was finally on her way. I wasn’t 100% sure I was in labor at first. My contractions were painful, but inconsistent. This should explain why I let John drive 45 minutes away so he could play a round of golf with his buddy. He was hesitant to go at first, but I was confident that I was just having Braxton Hicks contractions as usual.

I’ll spare you the gory details, but wouldn’t you know it—it became evident my contractions were the real thing just as John started to play his third hole of golf. I’m a pro at this birthing thing, but I was less than enthused when John implied he might as well finish all 18 holes. (Yes, really.)

Before I could react, John quickly retracted his suggestion and sped back home. I’ve given him the benefit of the doubt, and I’d like to think he was just pulling my leg. Sure, we still had a few hours before the baby would arrive, but there was no way I was going to experience early labor by myself. I had all three kids home with me, and I cry like a big old baby when I’m in a lot of pain. Besides, we had lots of preparing to do before we left for the hospital.

My Birth Plan

When we discovered Noie was a carrier of factor VII deficiency, I wasn’t entirely clear what our birth plan would be. Noie had my copy of the mutation, so we assumed she wouldn’t be a symptomatic carrier, because I wasn’t one. Call me paranoid, but I was a little uneasy with the idea of not following the hemophilia protocol for labor and delivery. What if some freak error caused my amniocentesis results to be inaccurate? So, after speaking with my obstetrician and Niki’s hematologist, we agreed it would be best to follow the protocol anyway—just in case.

I don’t care how many times I’ve done it—five times, to be exact—but giving birth hurts! I unintentionally gave birth to Niki without any drugs, and there was no way I planned on doing that again. My hat’s off to women who can give birth au naturel, but I’m not one of them. After 13 hours of labor and lots of pain relief, Noie was out in three pushes: seven pounds, three ounces of pure joy! Our youngest daughter, Anjali Noelle (Noie), was born on January 24.

There was a bit of debate on whether Noie needed to have her coagulation labs and factor VII level drawn immediately after she was born. John and I assured the attending pediatrician that our hematologist wanted these tests to be done, but no one seemed to understand why, since she was only a carrier.Niki had a cord blood study done immediately after birth (to prevent being poked) but despite our insistence, they skipped the opportunity with Noie. Later that morning, the pediatrician got in touch with hematology, and of course they wanted the labs to be drawn just as we insisted. (Drawing labs was listed as part of the protocol.) It was too late to test her cord blood, so Noie was sent to the NICU twice to get poked: once to check her factor VII level, and another time to draw her coagulation labs.

Results of the Lab Tests

Everyone assumed Noie would have normal lab results, but to our surprise, her factor level was slightly low at 33%, and her coagulation baseline was ever-so-slightly abnormal. I don’t think anyone was expecting that. John and I were glad we persisted. Had we dismissed the need for labs, we would have never known. Noie had a joint follow-up visit with Niki’s hematologist, and the plan is to check her labs again when she turns 6 months old. We’re hoping her factor VII level will normalize by then.

I know my birth story sounds like a total nightmare, but I was very happy with the doctor and nurse that helped my deliver my baby. They followed the delivery protocol perfectly and were totally supportive and encouraging during my birthing process. And even though there was some confusion on the need for lab tests, I don’t blame the pediatrician, either. We’re dealing with a rare disorder that doesn’t have much clinical data documented, so there’s always room for debate. All in all, John and I were very pleased with the outcome of Noie’s birth day. We were discharged to go home the following day.

Noie is almost 2 months old now, and I honestly forgot how tiring—and expensive—it is to have two little ones in diapers. Kevin just barely turned 2 when Anthony was born. And even though Ethan was only home for three days, Boo was still in diapers when he was born, too!

Nevertheless, John and I are enjoying our newborn daughter and all the pandemonium that comes with having four kids in the house. I’m absolutely in love with my newborn daughter and that “new baby” smell.

Holidays in the Hospital

2011-03-20T02:47:00.000-07:00

Annnnd here's another HemAware post for your viewing pleasure. This one was published on 2/2/11. ;)

http://www.hemaware.org/blogs/diary-hemomom/holidays-hospital

Update: Our HemoMom blogger gave birth to a girl on January 24 at 3:44 am. Mom and baby are doing well. Anjali Noelle or "Noie" was 7 lbs, 8 oz, and 20.5 inches long at birth.

Keeping up with the demands of the holiday season was a tad more arduous than usual this year, since I was due to give birth very, very soon. Not only did my computer crash, but I was left with very little time to write in between juggling holiday engagements, demands at work (yes, I was still working full-time pre-baby), and, of course, tending to the kids.

For almost the entire month of December, all three kids took turns being sick. In addition to a minor inhibitor scare just before Christmas, Niki also ended 2010 with a bang. She developed a high fever—104 degrees, to be exact—and we had to rush her to the emergency room to make sure her port wasn’t infected.

Come to think of it, the past two holiday seasons have been plagued by trips to the emergency room to rule out an infection in her central venous access device (CVAD). A CVAD is a tube that is inserted into a central vein with an external access device that we inject her factor into. Niki had a Broviac® catheter installed when she was 5 days old so we could perform her infusions and lab draws at home. If the CVAD isn’t kept completely sterile, bacteria from the device can get into the bloodstream, causing a central line infection, but the benefits of prophylaxis outweighed the risks of having a CVAD.

Central Line Infections

In case you didn’t know, central line infections are no good. They can be life-threatening if they aren’t caught in time. A fever could be the first sign that something is amiss for patients with CVADs. This means patients with CVADs, such as ports or catheters, can’t take fever reducers for typical cold or flu symptoms. It could dangerously mask a high fever. For Niki, a temperature of 101.5 degrees or above warrants a trip to the emergency room to rule out a line infection.

All was fine and dandy with Niki’s Broviac catheter until she was 8 months old in October 2009. It seemed she caught every cold and flu bug imaginable because she developed a fever all the time. There was a time that John and I would rush Niki to the emergency room at least once a month! We would take her in for blood cultures, and then she would receive a two-day course of intravenous antibiotics.

At first, I was terrified that Niki would have a central line infection with each and every trip to the emergency room. As time progressed and the frequency of our visits increased, the emergency room became part of our monthly “thing.” Order infusion supplies? Check. Call the pharmacy for more factor? Check. Go to the emergency room because Niki has a fever again? Check. John and I often had Niki’s baby bag packed and ready to go with clothing, diapers, her protocol card and our “mobile hemophilia treatment center.”

I got used to Niki’s high fevers being a false alarm, but John and I had a serious reality check this past June when Niki’s Broviac catheter actually did become infected. She was hospitalized for a week, and her hematologist decided to switch to a port immediately thereafter. Ports provide the same direct access to the vein, but the device is housed completely under the skin. Niki had port surgery in July 2010.

In Love With the Port

The idea of poking Niki took some getting used to, but we eventually fell in love with the port. Despite still being prone to catching common colds, Niki was miraculously able to get sick without crossing her fever threshold. I don’t know if there is any real data to support this, but it seemed she was less prone to getting full-blown sick with her port. Suddenly, we went from monthly emergency room trips to no emergency room visits for six months. Life seemed somewhat normal again.

Thankfully, this last emergency room visit was not a central line infection. She was discharged the afternoon of New Year’s Eve, and we got to ring in the new year at home. Even though she was hospitalized for the last two days of 2010, I’m looking forward to another year of less-frequent emergency room visits in 2011. Switching to a port was the best decision we ever made.

Bring on the Baby!

2011-03-20T02:42:00.001-07:00

Here's a link to my HemAware blog entry. This was originally posted on 1/26/11. I know I'm looooong overdue for posting an entry on this blog. I'm working on it guys. Just bare with me. I've got a LOT of projects going on. Anyway, enjoy!

http://www.hemaware.org/blogs/diary-hemomom/bring-baby

Update: Our HemoMom blogger gave birth to a girl on January 24 at 3:44 am. Mom and baby are doing well. Anjali Noelle or "Noie" was 7 lbs, 8 oz, and 20.5 inches long at birth.

Believe it or not, I had two jobs—worked 60 hours, seven days a week, to be exact—and attended school two or three nights a week during my pregnancies with Ethan and Niki. I didn’t have to be conscious of Family Medical and Leave Act (FMLA) hours back then, but both times I worked up until the day I gave birth. As a matter of fact, I started having my contractions at work, finished my shift and gave birth to Ethan early the next morning. (Yes, really!)

I remember being tired when I was pregnant with my precious little bleeders, but I don’t recall being as exhausted as I’ve been with this pregnancy. I’m no longer working seven days a week, and my education is on hiatus, but nevertheless my body feels like it’s working the crazy schedule I used to have. I’m still working full time, but now it’s because I have to be ever-conscious of the FMLA hours I use. (Niki and I have to share FMLA hours that I have accrued in a rolling 12-month period.)

So, I roll myself out of bed every morning and go straight to work. And lately, each morning, I’ve felt a twinge of disappointment that I haven’t given birth yet. I’m absolutely sick of working, but I’ve got to do what I’ve got to do to protect my job and my benefits.

An Exhausted Pregnant HemoMommy

Please forgive my pregnancy-induced whining, but quite frankly I hope I’ve already given birth by the time this blog entry is posted. If not, well, I’ll probably be seriously considering using a plunger to get this kid out by then. I’m grouchier, sleepier, weepier, hungrier and more worn-out than I’ve been with any other pregnancy. John has noticed it, too.

I’m a petite person—all skin and bones—so carrying around an entire human being always wreaks havoc on my tiny frame. But, there is also something drastically different about how I’m coping with this pregnancy, too. I’m a HemoMommy now, and although the physical demands of HemoParenting are no different than those of “normal parents,” the mental demands are.

I never got any responses to my blog post looking for other pregnant HemoMommies, so I don’t know if I’m alone in feeling this way. However, it seems my stress level is a bit higher with this pregnancy, and I theorize that it’s because I’m a different kind of parent now.

The fact of the matter is—like most HemoMoms—I’m the primary caregiver when it comes to managing Niki’s bleeding disorder. My medical background has been helpful in my successful management of Niki’s care at home, but these days it feels like I’ve got to command my “pregnancy brain” to remember to order factor and infusion supplies, log infusions and, of course, wake up early enough to adhere to Niki’s prophy schedule. Aside from having the kids to tend to, each passing trimester has made me feel like my HemoMom duties aren’t as second-nature as they once were.

Work vs. HemoDad Dilemmas

John is here to help—if I were to die tomorrow, he would be perfectly capable of doing everything I do—but he also has a very demanding job. A job he has to be diligent about sustaining, not because it’s more important to him than his family or because he’s the “good” insurance provider, but because it supports the financial demands of rearing three, soon to be four, children.

Most of the time I try to be understanding about it, but lately I’ve been a nasty, pregnant ogre when John is faced with “work vs. HemoDad” dilemmas. Do I resent it sometimes? Absolutely. But he has his role, and I have mine. My “parenting specialties” aren’t the same as his.

John has had to report to work during Niki’s hospital stays these past two years of her life. In fact, he went back to work when she was still in the NICU, and I totally understood and supported his decision back then. But during her recent hospital stay before the New Year, was I more annoyed now that it was my nine-months-pregnant self tending to Niki? Definitely. It wasn’t fun tending to a cranky, clingy toddler while lugging a soon-to-be newborn in my belly.

Frankly, as much as I love the excitement of awaiting this baby’s arrival and the feeling of my second daughter squirming around in my tummy, “labor day” can’t come soon enough. I can’t wait for the blood flow to my uterus to be redirected back to my brain. Raising four kids is going to be tough, but I say it’s totally worth it. Big families rock!

Day By Day...

2011-02-27T10:50:00.083-08:00

It has been three years since I last held my baby in my arms. Three long years and there are still some days that I can't believe this he's gone. There are days when I'm so overcome with grief and sorrow that it consumes my mind.

He consumes my mind.

Sometimes it doesn't feel like it was real. Like losing him was real. Like it having him was real. Like spending the rest of my life missing him is real. And the most heartbreaking days for me are the days when I've forgotten what it felt like to have him in my life. The times where I've gotten so absorbed in the moment that I've completely forgotten about my son. And then it hits me like a ton of bricks...

My baby is really gone.

And then there's the guilt. The horrible guilt. How dare I live a moment of my life without thinking about my baby. How dare I think about my living children and their needs, and not honor my son by keeping him in my memory constantly. How dare I allow myself to forget about my baby!

But life is for the living, and I know this. I cannot dwell on his death, but I still do.

Three years and I still visit Ethan almost every day. There are days when I have to pick and choose what's more important. Rush home to see my living children or rush to the cemetery before it closes? Relax and eat during my lunch hour or nourish my soul by visiting my baby? The days that I can't visit him, I have to force myself to believe that Ethan understands. I remind myself that he knows my other cubs need me more than he does or that he knows that I had a particularly rough morning and need to relax. But, the guilt lingers...

Life is for the living, and I have to constantly remind myself of that.

Time has a mysterious way of erasing memories. The sound of a cry. The crook of an ear. The feeling of his weight in my arms. His smell. These were things that I desperately fought to commit to memory. I don't care how many babies I've held since I held him, they'll never replace what it felt like to hold Ethan for that last time. On the day of his wake, I stared at his tiny body in his casket for what seemed like hours trying to burn his image into my mind. It dawned on me that I never stared at his profile when he was alive. And I didn't want to forget the sweet curve of his tiny ear.

Most days I've accepted Ethan's destiny. I know he served his purpose here on this earth, and that he is in a better place. I know Niki is alive because of him. He was born to save Niki's life. I know Kevin and Anthony have stronger, more compassionate souls for having encountered such an intimate loss at such a young age. The death of a sibling might crumble some children, but my boys have flourished. I know that my relationship with John has been given the hardest test imaginable, and it passed. We've survived something most couples will never experience. And even though it initially broke my heart to have Noie be Ethan's carbon copy, I know that I was given a special gift from a Higher Power. Now I've witnessed what Ethan would have looked like past one week of age - in a feminine form, of course. And I know she will grow up to be just as strong and compassionate as the rest of my cubs. Our entire family has been blessed with special gifts because of Ethan's death.

To live life is a gift in itself.

I believe it's Dr. Earl Grollman that said, "Grief is love's unwillingness to let go." I will always love my son, and grief is a part of that love. God bless you, Ethan Nikolas de Leon. Mommy loves you so very, very much.

3 Years Ago...

2011-02-20T01:40:00.000-08:00

Three years ago today. I remember it like it was yesterday. Happy Birthday, Son. I LOVE and MISS you with every fiber of my being...

Hello? Are YOU still there?

2011-01-12T05:30:00.000-08:00

I've been horrible about updating this blog. I still haven't written about our trip to New Orleans or all of the other nifty things that have been going on here at our den. My computer is finally fixed so I'll be posting tons of stuff soon! Right now, I'm working on churning out Niki's party/Ethan's blood drive invites, trying to re-write all the HemAware posts that I lost (aside from losing it when my laptop crashed, the USB I used to back up my files became corrupted), and I'm also due to give birth very, very soon.

But -- please bare with me and keep checking back! "Follow" the blog if you want to get notified about new posts instead of checking (and being disappointed) daily.

Til next time...

Let's Talk About The Birds & The Bees

2010-12-17T01:36:00.001-08:00

I finally did it, I submitted the sex & bleeding disorders blog post that I drafted long ago! I had to tone it down quite a bit -- if you know me IRL that you guys know how much more I could have explored this topic in detail -- but I'm very happy with how the post turned out. I edited it quite a bit before I submitted -- and omitted a lot of the "super taboo" content -- but I still felt like my orginal submission sounded a bit...strained. I had to choose my words wisely because I didn't want to make the post too offensive or taboo. Thank goodness for awesome editors. I'm happy to report that I haven't got any negative feedback from this post. ;-)

Anyhoo, here it is. Enjoy!

http://hemaware.org/blogs/diary-hemomom/let%E2%80%99s-talk-about-birds-and-bees

Last spring I received my sex educator certification from San Francisco Sex Information (SFSI), a nonprofit organization that provides free, confidential, nonjudgmental sex information. SFSI is the only organization of its kind and answers questions from all around the world via switchboard and e-mail.

The organization provides invaluable information and appropriate referrals to people who may be too embarrassed to ask healthcare professionals or cannot locate legitimate information on the almighty Internet. SFSI’s training program covers reproduction, birth control, safer sex practices, HIV, STDs, gender identity and sexual identity. I am proud to be a SFSI-trained sex educator.

For a lot of people, the subject of sex is taboo. I understand why, but I believe our society should make a greater effort to provide comprehensive, nonjudgmental sex information to those who want it. Sure, the public schools provide some sex education, but what we learn about sex, intimacy and relationships also comes from home. More often than not, we come from a home environment that inhibits discussing sex and intimacy. (Well, at least I did.)

I’m not saying all parents should feel obligated to educate their children about sex, but at the very least they should have the resources to direct them to good information, should questions come up.

Sex and Bleeding Disorders

When I was in SFSI’s program, the training staff conducted a session on sex and disability. There was no mention of bleeding disorders, but it got me thinking about how I would probably have to modify my “birds and bees” talk with Niki. If and when Niki decides she wants to talk with me about sex, I want to be prepared. John thought I was nuts—he’s still hoping both of our daughters will become nuns—but I started researching information on sex and bleeding disorders while I was a trainee.

Unfortunately, I quickly learned there is very little information available about sex and bleeding disorders. I was surprised that there was hardly any condition-specific information on sexual issues related to women with bleeding disorders. And, I was even more disappointed to find absolutely no information on sexual intimacy for gay, lesbian and transgendered members of our community!

As a sex educator and member of the bleeding disorders community, I was concerned. As a mother, I was concerned! Not about Niki’s sex life—which, let’s face it, is many, many years away—but it made me wonder how members of our community learned about how their bleeding disorder affects their sexual relationships. Relationships, communication and sexual intimacy are already difficult in a “normal” situation. I imagine that throwing a bleeding disorder into the mix only exacerbates potential issues that could come up. Did they have to learn things the hard way?

Sex Info Should Come From Reputable Sources

Knowledge is power, and I didn’t have that when I was growing up. Everything I learned about sex came from school, peers and, unfortunately, teenage naiveté and experimentation. (It’s a darn good thing that John ended up being a good guy!) I don’t want Niki—or any of my children, for that matter—to be like I was. These days, everyone goes to Google for information, but there is so much sex information on the Internet that is inaccurate or serving some sort of agenda!

It is especially important to me that Niki be as informed as possible about how her condition can affect her sexual intimacy. As awesome as her female hematologist is, I don’t know if Niki will feel comfortable asking her about “embarrassing sex stuff” when that time comes. I’m equipped with enough knowledge to talk with Niki about dealing with menorrhagia when she has her period, but there are so many other things I want her to be prepared for. I read about one woman’s account of the excessive bleeding that occurred on her wedding night. And I hadn’t even thought about that type of bleeding being an issue!

I was pleased to learn that this year’s Annual Meeting was having a session on women with bleeding disorders and intimacy. At that session I heard for the first time that bleeding can be an issue even after first intercourse. If I could split myself in two, I would have attended the men’s intimacy session, too. I’m sure there was a lot I could have learned there as well.

The lack of sex information available to both male and female members of our community worries me. The little information that I have seen seems to be geared toward the mainstream idea that everyone is heterosexual or married. I wish I knew why so little information is available on sex and bleeding disorders. Maybe people are too embarrassed to ask for it. Or perhaps they are asking their doctors about it, but no one has made a collaborative effort to put this information out there for mass consumption.

Medical students don’t receive a great deal of formal instruction on human sexuality unless they specialize in it. So, we cannot rely solely on health professionals to educate our community, either.

I hope I’m not the only HemoParent who feels this way. The fact is, it’s up to our community to realize this issue is important enough to discuss.

12.11.10

2010-12-11T17:05:00.005-08:00

In case you didn't already know, John and I were supposed to get married today. Yep, I was supposed to have my big ol' Catholic wedding, but instead, I got pre-martially knocked up again.

All three of my sisters we set to get married in 2011 & 2012 which is why John and I decided to get married at the last minute. (Our culture believes that it's bad for siblings to get married in the same year.) We started planning in late May, but quickly cancelled in early July after we discovered that Noie was on her way. I decided that it would NOT be a good look to waddle down the aisle while 8 months preggers.

But, believe it or not, planning our would-be wedding was sooooo easy. We've been engaged since John proposed when Kevin was 8 months old. Needless to say, I've had tons of time fantasize about our wedding day. We both love the winter so December seemed like a natural choice. Aside from that, it was the 12th month of our 12th year which was perfect. John picked the date and venue, but I did everything else. We planned on using the same photographer, DJ, and videographer from Niki's party. I even found the perfect dress! (Thank goodness I didn't order it or I would have been screwed.)

I'm a little sad today. I wouldn't trade my "Snowy Noie" for THE WORLD, but damn it, I should be in a wedding dress today -- not sweats and a huge-ass sweater!!! Today I was supposed to officially become Mrs. John (okay, Rodolfo) de Leon! 12.11.10 was supposed to be the day that I stopped being a "sinner," and finally have my union with John recognized by God. It's very important to us to have His sacramental blessing. That's why we've held off on having a civil ceremony all these years.

Everything about our wedding had a meaning. Instead, there are a LOT of "Nos" happening today.

1. No vintage winter wonderland wedding at the Galleria. The room was going to be filled with Tiffany blue, crimson red (John's signature color in high school), crystal trees, twinkling lights, bling, and downy feathers.
2. No large wedding party - a groomsman & bridesmaid for each year we've been together.
3. No flocked Christmas tree for our guests to hang handmade ornaments on. (I was going to have an ornament making table so our guests could make an ornament to take home and one for us to keep -- to carry on our den's holiday tradition.)
4. No photobooth & scrapbook table.
5. No Japanese cuisine or sushi bar. (To pay homage to our first date.)
6. No yummy warm winter treats & drink bar.
7. No snowy honeymoon with my honey.
8. And most importantly of all, NO blessing from God, at St. Dominic's, by the Father who gave Ethan his final sacrament.

Today, we're making gingerbread houses, decorating ornaments, and going to the parol parade. It's not my wedding day, but I wouldn't trade today's memories for the world. :)