Before starting my day with a tooth brushing, hair combing, and face washing, I stopped by the sectional-turned-bed to check on Justin. He laid there on his back, with his head against a white, fluffy pillow, eyes closed, breathing comfortably, with his arms in a u-shape above his head. I lingered at this sight for a few minutes, taking in the fact that he was here with me, breathing. My stomach fluttered. It was like looking at my newborn child for the first time in complete astonishment that this child was mine. Like, how the heck did this happen? I have a child! But, in this case, it’s more like, he’s mine, and not completely perfect, but so perfect, and he’s here…still here.

And, we were on vacation. 16 months ago, I could not have fathomed taking Justin anywhere beyond the hospital and our home (remember, germs?). This past week, I’ve taken Justin to Disneyland (uh, germs central) to view the Electrical Parade and to absorb in the Disney scene, and on a boat ride around Mission Bay Lake in San Diego. He’s sat in restaurant high chairs (that were sanitized and covered in our own seat covering material, of course), lounged by a very busy public, hotel pool underneath a cabana, and experienced a bonfire while his cousins and brother were roasting marshmallows for their smores.

The chaos generated by his cousins, Nathan, admiring strangers, and activities sometimes distracted me from seeing this all for what it is–that Justin was alive and well enough to appreciate the chaos. He would squeal ahhhhh! in delight, bat his arms up and down, and bounce on his bum whenever anyone spoke to him. Or, he’d look for some attention, just by staring someone down until they’d say something to him. Sometimes, he’d even play hard to get and turn his head into my shoulder as though he was shy.

Although I’ve loosened up a bit, reality is I’m still scared as heck that something, anything could happen to him. I find myself still checking on him (to make sure he’s breathing) every so often while he’s napping or sleeping. I look out for signs of his heart or pacemaker failing–is he puffy? pale? breathing fast? not eating well? tired too often? different?

He’ll be turning one this coming Friday, but, I find myself not really wanting to talk about it. Don’t want to say why…

But, this past week has made me realize how far my Justin has come, and how much my perspective has changed. Very few moments that I spend with him are wasted on thinking about what I’d be doing next or in the future, and where we are headed. Every moment I spend with him is for him for that moment. I focus on appreciating the fact that he is breathing, alive, and happy…so happy.

I must admit that the darkness of the night, in my bed, is where I’ll reserve for my deeper, more anxious thoughts about surgeries, heart transplants, insurance, bills, etc. I’m only human, and fear will sometimes persuade me.

As always, though, seeing his smiley, sunshine face reminds me to appreciate, appreciate, appreciate.

It’s almost 11PM, and I’m sitting here with some party anxiety. My list of things-to-do has been checked and rechecked. My vision of the most imaginative and personal King of the Jungle Safari themed first birthday is materializing. I just hope everyone will enjoy themselves.

Bags of activities, party favors, and scrapbooking supplies are sitting by the door waiting to be loaded into the car to be transported to the banquet center. The items on my list that have been outsourced are at partial completion, and are promised to be done by tomorrow 9AM. Excited for such a, uh, grand event–it’s Justin’s 1st birthday party!!!–but, nervous. I just want everything to be right.

Stay tuned for pictures!

When I mentioned Justin’s heart defects and saw her facial expression unaltered, I knew that she had some insider information.

“Does he have Tetrology of Fallot?,” she asked me.

I then explained to her, shortly, Justin’s heterotaxy and multiple heart defects.

Then, I asked her if she knew someone with ToF. She said, “Yes, my son.”

At that point, we engaged in a conversation about her son and his journey.

Q: When did he have his surgeries and how did he do developmentally afterwards?

A: He’s now 18, had his first surgery at 10 months old, second at 14 years old to replace a valve. He’ll continue to have valves replaced as they wear and tear. Although he was small for most of his life, he caught up after the second surgery as his heart became more efficient in pumping oxygenated blood throughout his body. He was able to army crawl up to 10 months, but after surgery was forced to crawl off the ground to be off his chest. No one could tell that there is anything wrong with him just by looking at him. He just graduated high school. The only developmental set back was him being diagnosed with ADD at 14 before his second heart surgery. She believes that the lack of oxygen throughout his body affected his brain activity and behavior.

Q: How is it dealing with surgery as he gets older?

A: She’s a proud, tough mama. It was never difficult for her to tell her son to get up and go when he’d rather whine in bed of his pain. She knew he was in pain, but she also knew that he could push himself. In preparation of the second surgery, she did not tell him of his surgery date. She planned a Hawaii trip and told him on the plane on the way there. By the time they got back, he had no time for anxiety as the surgery was the following day. He was upset with her, but, it worked out fine. (I think I will have to include Justin in on the plans.)

Q: Where were your surgeries?

A: The first was at Millers Children Hospital in Long Beach by Dr. Bethencourt (I was originally assigned here by my HMO), and the second was at Children’s Hospital of Orange County by Dr. Gates (I considered this surgeon). She was amazed by how much medical technology had improved between the first surgery and the second.

What I learned? I’m not alone and there are many families dealing with children with heart defects. I realize that our sons’ conditions are not the same, and neither are their prognosis (Justin’s is worse). But, with each story is so much hope. Medical technology is amazing. I am in complete awe of how much opportunity Justin has been given at life already. Three or four decades ago, he would have been sent home for “compassionate care” without a chance.

Thanks heart mamas for sharing your stories. I’ll keep praying and hoping for more miracles.

Loi’s younger sister and I threw a “surprise” bash for him this past Friday, that turned out to be not so “Surprise!” after all. One of his friends accidentally slipped when he called our house to talk to me, but got Loi on the phone instead (friend later confessed that he had “failed the mission”). All week, Loi pretended not to know, but I knew he knew because I found the e-vite to his party on my email had been opened (not by me). Regardless, I continued about with the food ordering, and pretended that I didn’t know that he knew. Exhausting, right?

Come the day of, I was totally unprepared. I couldn’t figure a way to leave the house without abandoning him with the 2 boys and their neediness (Nathan wanted to be played with, Justin needed to be fed, bathed, etc…typical day). He also had to work from home. Finally, close to 3PM, as Nathan was going down for his nap, I started acting exhausted, like I needed to get out of the house STAT before I’d go CRAZY, told him I needed to go shopping as a relief. Without any hesitation, he let me go. Donned with disheveled hair and Justin’s leftover pureed sweet potatoes on my dress, I grabbed my purse and made a run for it.

Of course, 3PM on a Friday is rush hour traffic time. Perfect. I had two stops to make and needed to report back to party central by at least 5PM to set up the birthday banner, decorations, tables, and chairs. Not to mention, I had some items on the menu that still needed preparation. I did not get to party central until 5:30PM. By the time I carried the food in from the car (with the help of our wonderful nephew. Hi, Andrew!), it was already 5:45PM. The phone started ringing. Guests were showing up at the gate. Crap. I am the worst party planner ever!, I thought to myself. I can plan parties for hundreds of people, but not for my one husband’s 30th birthday.

The bright side was there were actually going to be people at this party (yes! I got one thing right.). Initially to help with the set-up, but they later were allowed to join in the fun, too! The early birds were assigned tasks such as setting up the tables and fold out chairs, putting up the banner/decor, making an ice run (thanks Rusty, Randy, Tom, Anh, Joe, Bailey, Timmy, Leanne, Phuoc, Johnna…did I miss anyone?). Organized, right? As I realized there were many hands on board to assist, I left to pick up Loi from our house.

Got home and no one was ready…burned another 20 minutes packing the diaper bag and dressing the kids before we were all actually loaded into the car to go.

“Where are you?,” texted his younger sister. “Almost here?”

30 minutes later, which would make a total of 80 minutes since I left party central to pick up Loi, we made it through the gate leading to party central. His friends’ familiar cars gave it away, though, as we drove down the street. He called me out, at which point, I still continued to pretend like I didn’t know what the heck he was talking about.

As we entered through the front doors, there stood his crew of people who hollered, “SURPRISE!” Good times.

Loi was actually surprised. He did not expect the party to be held at party central, but at our house. He also did not expect as many people to show up.

The remainder of the evening was spent with semi cold food (as we were missing parts for the food warmers, so we didn’t keep the food warm. Outside. At night.), drinks (all prepared for that! Makes everything all better), conversation, and some friendly banter.

The most memorable moment of the night for Loi? His 15 year nephew DJ’ing for him. That made him feel old. He told me that he used to do that. Time flies!

Happy birthday, Babe!

It’s been a year since the last time I actually worked, and it felt a little…liberating.

It’s been a year, but I still got it. Aside from some things slipping from my mind, my organizational skills when coming to running a (200 people) wedding reception is awesome. I had forgotten how good I was at timing things and getting things done on par or beyond the bride and groom’s expectations. Of course there was a team of servers, kitchen staff, cooks, etc., etc. But, it still amazes me how I can handle so many people and not feel overwhelmed. And, I handle what others may perceive as stress pretty well. Tooting my own horn, that’s for sure!

I suppose this life at home with my children does make me question how I’d relate to the “real world” if I ever were to re-enter it. I question whether I’d forget my skills and quick mindedness. I wondered if I’d ever forget who is me as the role of Mommy in Little Boys Kingdom has quite defined me.

But, when the bride and groom hugged me at the end of the night, thanking me for “everything,” I knew I had done my job well, and that I am still very capable. Every aspect of the itinerary was followed flawlessly, from lining up the bridal party for the grand entrance to the timing of the bouquet toss. Yes, I am goooood.

When Loi asked me if I “missed it,” though, I had to pause a moment to gather my thoughts. If by ‘it’ he meant working as a wedding coordinator, yes. If by ‘it’ he meant being at work for long hours six days a week and never seeing my children? No way!

At the end of the day, my children come first and my personal fulfillment comes last. I wouldn’t say I’m completely selfless, however, because being with my children actually creates great personal fulfillment.

Nonetheless, I am still me, a girl who loves to sing, write, dance, daydream, read, talk too much, learn, and work. So, yes, I do miss work sometimes as it allows me to fulfill an aspect of me.

Do I want to give up my time with my little Bubba and Googleybear? Uhhhhh…………how about in small doses? Let’s start there.

I am definitely feeling the anxiety(of losing my children or of them getting sick if I’m not there)burn away a little and gaining the confidence to conquer the world, again. Really. Because of them, I feel like I can do anything.

Now, I must tend to my poor feet that withstood 8 hours worth of nonstop walking and standing in 3 inch heels. What was I thinking? Too eager to “dress up” again, I suppose.

Before making a purchase, I question: Do I really need this? Is it worth it? What else could this 20 dollars go towards? Savings? College Fund? Paying Bills? My online writing class? Most of time, I’ll realize the item was not as appealing as when I first picked it up and end up placing it back where I found it.

This process has taken a toll on my wardrobe, though. I seriously have nothing to wear, now. I have clothes…just nothing that will go together, or fit right, or look good.

Flipping through a magazine last week, I came upon an article about women’s wardrobe transformations. I realized that when I related to the women’s BEFORE pictures more than the AFTER that I had an issue on my hands–my clothes are outdated.

It couldn’t be that bad, though, I thought. Decided to get a second opinion by no other than my trusty companion–Loi.

Me: “I have nothing to wear. I need new clothes.”

Loi: “Yeah, you do.”

Gasp!

When your man agrees that you don’t have enough clothes, then there must be something wrong. He’s never agreed with me before!

Being this stay at home mom thing does not require me to dress up. So, I don’t shop as often, and somehow jeans and tank tops/cardigans with sandals is enough to make it decent when stepping into the streets to physical/occupational therapy, doctor’s appointments, or the market. Three inch heels and knee length pencil skirts are entirely inappropriate for such outings.

Still, I miss being pretty. Clothes, though can be superficial, can also really improve my mood and sense of being. My conclusion? To be a good mom, I also have to be good to myself. Among my list of things to do this coming week is to plan a shopping trip–skinny jeans, printed and frilly tops, jersey dresses. You know, girly things.

Loi’s b-day in 1 week.

Justin’s b-day party in 2 weeks.

Nathan’s b-day party in 4 weeks.

Sent out a load of invitations today for Justin’s party, realizing it’s a little late, but I’ve called majority of the people ahead of time so we should be OK….or, so I hope. Party plans are materializing, and can’t wait for the big day!

In the meantime, we’ve been attending other birthday parties. This past weekend was our nieces’ 14th birthday party. 14! She’s starting high school next year! Where has all the time gone? I met her when she was only a wee three year old. This year, Nathan is turning three. See what I mean? Time really does fly. Justin will be there one day, too. I know it!

Here are the party animals:

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Justin had just grabbed a handful of cake frosting while Nathan watches on.

Hand and table wiping with baby wipes followed.

We can never get a decent group picture with all the kids. Impossible. There are 8 total. They don’t take cue to “smile” or “say cheese.” They’d rather play or eat cake. What do we expect, right?

Speaking of lots of kids, there were lots of people at the party, too. But, there will be 10 times as many people at Justin’s birthday party. How to keep him clean? I’m carrying hand wipes and hand sanitizers in my hip pack as I (and only I) carry him around. And kids? No touching. I’ve had some suggestions such as having him wear a shirt labeled, “Too cute to touch,” (thanks, Leanne!) and putting a sign(s) up to warn people that they can’t touch him unless they wash their hands. I’ve had my hesitations when planning this party as to who to invite to limit the germs surrounding Justin. But, our families are too big. And, our support system too great. Justin’s never had a party in his life. What better time than now, his first birthday, to bring us all together to celebrate life.

Besides, I don’t want him to be Bubble Boy. I don’t want him to be perceived as this fragile weakling. He’s strong, been through 2 open heart surgeries (3 if you count that time they had to reopen him after the 1st time to patch up those holes causing him to almost bleed to death). He smiles and “wa, wa, wa’s” (this is new). He deserves to be treated with some dignity.

Can’t wait to see him grab a fistful of his own cake!

“What did you say, Gong Gong?”

“That was hilarious!”

“I want to do it again!”

And its lack thereof.

We were at Babies R’ Us today per Nathan’s request. He was looking for a present for himself. But, along the way, he found something for Justin, too–a multi sport balled musical mobile. Justin’s a little too old for that, so we had to put it back. After 30 minutes of searching and debating between the Chocolate Percy train DVD or the Sounds Trains Make DVD, we ended up with nothing and headed over to Target instead. But, I digress.

Justin’s baby book. While I was there, I also perused through the aisles in search of an animal themed blanket/comforter. None really fit my taste. Or, if it did, I had to buy the whole set, bumper, sheets, everything for 80 bucks. No thanks! I came across many other cute animal themed baby things such as lamps, baskets, picture frames, toys, calendars…baby books.

It suddenly hit me that Justin is one month shy of 1 year old and I have not updated his book since, uh, I don’t know when! A little freaked, I brought this to the attention of Loi.

“You blog for him,” he responded. “That’s just a more tech-y version.”

Hmmm….I thought about it. Nice reasoning, but not really. I haven’t recorded his milestones and the dates he’d achieved them–sitting, rolling, ahhing, reaching, smiling, responding to his name, recognizing familiar voices. Maybe there are more, but I haven’t really thought about it. It’s not that I don’t care–I call to tell the world when he’s done something great such as voluntarily moving his right hand to feel pinto beans for the first time. I just haven’t thought about recording it…until now.

I did it for Nathan, why not Justin? I’ve been too busy recording doctor’s appointments, surgery dates, medical notes, my notes on his medical condition, calls to to the Regional Center of Orange County and California Children’s Services, insurance bills, medical bills, etc., that I haven’t really carved a piece of time or energy to create a nice keepsake for little Justin. As I type this, I wonder if I had made a mistake in not recording this info because his neurologist may be interested in knowing his progress at our next checkup 4 months from now.

Everything I do from day to day with my little Justin is for mere practicality, thinking of how I can better prepare for his physical health today, tomorrow, the future. The baby book is just fluff that will end up in storage…Or, so was that mind-set of the past of mine. Do I really want my child (or myself) to look back at his childhood as all work and no play? Do I want medical records and notes to define the life that I had/have with him?

We share many beautiful moments every day. Today: I loved the way he grabbed my hair and pulled my head to his mouth to eat my face after being handed back to Mama by Physical Therapist. He cracked me up this morning when he demonstrated how he can recognize familiar voices and faces, now. Just when he heard from his bedroom Nathan’s tutor greeting Nathan with, “Hiiiiii, Nathan,” at the front door, he “ahhhhhhh” really loud. When I went in to pick him up, he kicked his legs wildly, batting his arms up and down, with an intent smile on his face. When he saw the tutor, he kicked and bounced in my arm while batting his (good) left arm, and scrunched his little face into a wrinkled, toothless grin. Playing the clapping game is his favorite game–the knows that at the end of the song I would bring his arms up and pat his hands on his head. He excitedly brings his left arm and hand up to his head right before I finish the song.

He has some amazing traits other than his half functioning heart: In physical therapy, he cannot seem to concentrate when there are other patients around him–he loves observing and socializing. He smiles and ahhs at other people when they don’t pay attention to him…but, they eventually do because he is so freakin’ cute. He smiles all the time, at almost everybody. He lights up the room. He loves to grab things, anything, especially Mama’s spoon and food. He rotates his wrist from side to side, back and forth, with an object in his hand to observe it. He knows how to hide toys from his big brother: Nathan coming? Must bring toy to side, underneath high chair tray. Otherwise, risk losing toy.

What else will he or I be missing/forgetting in the future of this beautiful little boy’s life because I forgot to capture it–on note, photo, or film? No use looking back at this point. It’s only been a year, and there will be many more (I hope) to come. The beginning of Justin’s baby book is the beginning of another chapter in our lives, one filled with more joy than angst…

“The same genetic defect that causes a rare respiratory disease may also lead to some types of congenital heart disease, according to a study from the University of North Carolina at Chapel Hill School of Medicine.

The link between the two diseases starts with cilia, the tiny, hair-like extensions that help the lungs clear of mucus and remove contaminants such as dust. The researchers first noticed the connection in children with a respiratory disease that affects cilia, primary ciliary dyskinesia (PCD). A genetic mutation that impairs cilia movement causes the disease. A few children treated for PCD at UNC-Chapel Hill also had heterotaxy – an abnormal position of the heart and lungs associated with congenital heart disease.

The research team wondered if PCD and heterotaxy were related because other types of cilia, called nodal cilia, are known to play a role in directing and organizing organs in developing embryo. Results of the new study indicate they are connected.

The prevalence of heterotaxy and congenital heart defects was 200-fold higher in people with PCD than in the general population (one in 50 versus one in 10,000), the study found. The research appears in the June 5, 2007, issue of the journal Circulation.

“This should spur physicians treating patients with congenital heart disease to be more vigilant about testing for and treating respiratory defects,” said Dr. Michael R. Knowles, professor of pulmonary and critical care medicine and study senior author. “It is critical for families and physicians to recognize when congenital heart disease develops.”

Children with both heterotaxy and congenital heart disease typically undergo surgery to repair heart defects, and if they have respiratory complications after surgery, it’s often assumed that the cause is their heart problems, Knowles said. But the study indicates these children’s respiratory problems may also have an underlying genetic cause.”

Now, here’s a possible clue as to how heterotaxy and congenital heart disease occurs. What’s nice about this piece of information is it also allows me the knowledge to ask my cardiologist or pulmonary specialist or any doctor that can and will listen for testing for Justin. There are many types of genetic testing that may be done. But, if we not know what to ask for, we won’t get it.I would also like to note that I was never offered this information in the past year while dealing with Justin and his heart issues, while my friend over at Chloe’s blog has been offered some about it. So, it may be that this is not a widely recognized explanation to heterotaxy and congenital heart disease. Nonetheless, it is worth finding out if my child has respiratory disease that I should be aware of. Then, when a cold arises, I will be better equipped as to how to approach it.In more recent news, National Heart, Lung, and Blood Institute is sponsoring a study that will “examine genetic material obtained from blood and tissue samples of patients with CHD and heterotaxy to gain a better understanding of these disorders and of a lung disease called PCD. CHD is prevalent in patients with heterotaxy. It is believed that certain forms of CHD or heterotaxy may have the same genetic origin as PCD.” Read here to learn more.On the way to answers? 

“He was probably thinking how much better he felt now that he’s thrown up whatever made him feel icky.”

There’s a thing or two to be learned here: 1) My sister is a genius 2) My Justin is a model of how life should be perceived–with optimism. He’s been through more physical trauma than I could ever imagine (he has the scars to remind us of it), been poked and prodded at by people who approach him with such friendliness (who can he trust?), has rotten egg smelling medicine (Captopril) injected into his mouth 3 times a day, along with other not-so-pleasant tasting medicines….Yet, he always has the endurance and spirit to smile.

There’s this picture I have of him a few days post-Glenn: his scar is deeply bruised, purple, he had just been extubated, there’s a (unexplainable) bruised eye, suffered a stroke. He turns to Loi’s I-phone, as if there were not a care in the world, and smiled, this lopsided smile with one eye squinting (because half of his face was affected by the stroke). It’s heartbreaking, but so beautiful. His smile is always a reminder to appreciate the what is, the light of every moment of every day.