Home of the Four Trans

While I was discussing the Montessori method with the school’s head coordinator that I’m enrolling Nathan in, I found an opportunity to discuss how the Montessori method may help Justin’s cognitive, motor, and other physcial developments. Per my readings of Dr. Montessori’s translated writings, her method was developed to help children gain autonomy, especially those who are “disabled.” Justin is certainly not disabled (not in my book), but he is definitely delayed because of his heart surgeries, stroke, and poor heart function. I wanted to gain information about how the program was designed for the younger 18 month children, and how it may help Justin. In the process of learning about the Montessori method, I also learned something else.

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.

I went to work today. Yes, work. For eight hours, 3pm-11pm.

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.

The weekend was filled with “I hate you, Papa/Mama.” Ahhhh!

Loi’s solution: every time Nathan uses that word, he would get one of his beloved CARS toys taken away.

L: Nathan, it’s time to eat cereal.

N: I don’t want cereal.

L: Nathan, you need to eat breakfast.

N: (whining) I don’t want to eat. I hate you, Papa!

L: What did Papa say about using that word?

N: I hate you, Papa!

L: This is a warning. If you say that word one more time, I’m going to start taking your CARS away. You will not get it back for 1 week.

N: I hate you, Papa!

Loi picks up a car from Nathan’s bedroom floor and stashes it away in a high kitchen cabinet where all his other toys go when their taken away.

N: I hate you, Papa!

Loi stashes away another car.

N: (quietly, in a normal speaking voice) I hate you, Papa.

Loi walks to his room to find another CAR. Nathan follows. Loi stashes the CAR.

N: (quietly, in normal speaking voice) I hate you, Papa.

Loi walks to his room to find another CAR. Nathan follows.

N: You find Boost (one of his CAR’s names)?

Loi stashes the CAR

N: I hate you, Papa.

Fifteen minutes passed before Nathan finally let this hate you business up and agreed to eat a pasta and vegetable noodle soup I made for him. The remainder of the day was peaceful and tolerable.

That night, while my sister was over, she noticed Nathan sliding his CARS underneath his mattress.

“I think Nathan is finding a way to keep Loi from taking away his CARs,” she told me while laughing.

“It’s not funny!,” Nathan yelled from his room.

Oi!

Sunday morning, as Loi was attempting to put Nathan back to sleep after his 5AM restroom break, Nathan got frustrated about the fact that he had to be put back to sleep. Loi told me Nathan started to say, “I h…”, but just groaned instead. Loi thinks the CARs taking away thing is working. We’ll see.

While it’s amusing at times to see Nathan rebel, most times Loi and I are worried that his frustration and anger come from something deeper that he’s not telling us. Like the fact that he does not get as much attention from Mommy as he used to now that Justin is around. Or, the fact that we left him all those times while in the hospital with Justin. Although he gets so much attention from his aunts, uncles, and grandparents whom he sees on a regular basis (some everyday, others every week), it seems the only person he really wants attention from is me, his Mommy. I say this because I’ve noticed some key observations:

• the day begins with little struggle and fighting when it’s just me and him and Justin is sleeping
• he watches me while I play with Justin only. I see this from the corner of my eye. He takes notice of when I pay attention only to Justin and not to him. Then, he’ll approach to take away one of Justin’s toys.

Beginning this past weekend, I have put into effect “Mommy and Nathan Day” again where Mommy and Nathan take an outing together once a week sans Papa and Justin. This will allow us bonding time. And, he’ll have my undivided attention. I hope that this will contribute to a happier, better adjusted Nathan.

I thought I would not have to confront this fear until at least 12 more years. He’s only 2 years and 10 months.

But, today, he said it. Nathan said, “I hate you, Mommy.” Did not know how to respond. Just stood there, looked at him in disbelief, and walked out of his room.

He was probably mad at the fact that I was holding Justin and not putting him to sleep. My brother had stepped in to take care of Nathan today.

I suppose he’s still not feeling well and wanted Mommy to comfort him. Not Uncle Boy.

Sigh.

The excuses are endless, but the anger is real. Nathan is upset at Mommy.

I was not ready for this. Still don’t know how to react, what to say.

This is a dark day in mother hood.

Nathan is sick…again. For the past 2 days, he had some wheezing and breathing issues which we alleviated with his inhalers. Watching his throat and stomach retract as he struggled to breathe freaked me out a bit. But, he is back to his usual self today, playing with CARS and talking too much. Even as he struggled to breathe and was almost breathless yesterday, he still talked. He’s constantly moving also. Where does he get all his energy from?

I think I changed my clothes at least 5 times yesterday, between Justin’s messy, poopy diaper and spit up and Nathan’s throw up. It’s gross, I know, but this is the life of a mother. Oh, and I did not want to carry any of Nathan’s germs on me when I went in to carry Justin, so I changed between holdings, too. Now, we have a whole basket full of laundry ontop of the already existing two just from yesterday.

This was an exhausting way to start the week considering our jam packed weekend with not a moment’s rest. Saturday was my high school friend’s wedding. I attended the ceremony myself as Loi was left with diaper duty with the two boys.  We met at Loi’s parent’s house to drop off Nathan. Then, lugged a sleeping Justin to the hotel where the reception was held at to wait for his ride and sitter for the night (Thanks Auntie Phuong! Since we know you can handle it, we know who to call next time…hehe) to pick him up. We finally had some much needed recreational conversation time that did not include Mommy-whining in the background or discussions about poopy diapers and feeding. We couldn’t escape the Justin and his condition talk, though. How it was brought up, I have no idea. Loi was immersed in that convo more than I. I was busy catching up with my other high school friend’s big news–she’s pregnant!

Sunday was Loi’s grandma’s dedication party. This is one of those rare occasions where Justin is allowed out of “his cage,” as his paternal grandfather puts it, to interact with the rest of the family. Loi’s family is huge. With lots of kids. Hello, germs! Needless to say, I was the primary caretaker, holding him with a bottle of Lysol Foaming Sanitizer right beside me. Nathan was on Germy Hands Watch, also. Whenever anyone approached Justin, including his paternal Grandma, he ran right up between Justin and the person to tell them, “You have to wash your hands first!” This rare Justin sighting prompted many to approach him to admire his chubby cheeks and smiley face.

My boys are party animals (should I start worrying now about their teenage years?). While at the sitter for 3 hours, Justin did not sleep one wink and forced his Auntie Phuong to play with him and look at him and hold him. He was still wide eyed when we came to pick him up at 10:30 at night. As for Nathan–he just doesn’t sleep. Everyday is a party for him and his CARS that come along everywhere he goes.

Hope you all had a nice weekend!

This position I’ve taken as “Mama” means more than any other title I’ve ever possessed–eldest daughter, first American born grand-daughter, oldest sister, niece, student, friend, wife, wedding consultant–because this title creates a true sense of responsibility to another person. This is not to say my other identities did not also encompass a sense of responsibility–it did, immensely. With the other identities, though, I really did have the option of passing on some of the burden, abandoning it even; I just chose not to. In clarity, there could always be someone else to take my place even when I wanted to believe that no such thing could be true.

As “Mama” my children’s life depends on me. Sure, there are grandparents, aunts, and uncles; they can share the burden at times with feeding, entertaining, strengthening my children’s sense of self and independence. But, at the end of the day, it is “Mama” who knows them and molds them and confirms the very value of their existence.

“Mama” chose to give you life because I love you.

“Mama” chose to harbor your life because you are a gift and so gifted, too.

“Mama” does any thing to ensure the best for you, your life, and afterlife.

This is the first identity I’ve possessed that I do not expect for anything in return. My boys, they are the gifts, the reward. To be their Mama, to love them unconditionally is in all clarity my selfish want to give love.

“You need to have a girl, a daugther, ” I’ve been told, to be my caretaker when I reach old age.”

Your sons will leave you, “they said. “You’ll suffer.”

Maybe they’re right. Maybe my sons will forget their old mother on Mother’s Day, with not even a phone call to tell her how much they appreciated her. Maybe they’ll abandon me for their in-laws. Maybe my sons will be too busy to give me a ride to the doctor’s.

Maybe I will be left alone in an empty nest save for a few visits a year. Maybe I will regret not taking heed to their advice.

But, this is life. If there is one thing my boys have taught me, it’s this: in life, there is no certainty. I’d like to think I’ve raised my boys right to think of their Mother from time to time and in her moments of weakness.

Here’s the beautiful thing: I’d take it a compliment that they’d one day spread their wings and conquer the world. I’ve given them life, helped build them a foundation, and it’s up to them to live the life worthy called of living and embracing. My boys, they’ll move mountains!Here’s how our Mother’s Day went down:

Both Nathan and Justin are getting so big!

Nathan talks up a storm and uses words like “amazing.” His favorite thing is still CARS.

Justin is getting stronger and is almost able to sit all by himself! And, that’s just after 6 physical therapy sessions. Yay! I hope that he’ll get the hang of it by his grand first birthday party (more on that, too).

Pictures will be posted when I find the USB cable…

Sunny, warm, breezy California weather beckoned me for a little stroll. Feeling quite ambitious that morning, I loaded my two bundles into our *new* double stroller (I think I have a stroller obsession), and set out to conquer the hilly roads of our track and the busy sidewalk of the Pacific Coast Highway.

My destination: the famous Ruby’s Crystal Cove Shake Shack.

I realized it was only 9:30 in the morning, too early for milkshakes. But, we need a little field trip to escape from all the clutter of toys, clothes, and stacks of mail. So, we walked, passing joggers with their dogs, elderly couples with their hand holding, and photographers with their cameras. To the right of us were the waves of the ocean crashing against the sandy shore resulting in white froth, sailboats drifting in unison with the horizon, and parents chasing their children to the water. To the left of us was the busy Pacific Coast Highway with cars, big and small, rushing by and the multi-million dollar homes perched upon a hill.

Justin was asleep; he’d just finished his morning meal (I had planned it that way so that I could spend time with Nathan). Nathan and I spent our walk there pointing out airplanes, helicopters, birds, lizards, cars (he names each car specifically referring to the vehicles in his favorite show, Bob the Builder and movie, CARS–his association skills amaze me!).

When we arrived fifteen minutes later, we ordered a chocolate milkshake for him and a pineapple milkshake for me. We shared a bench looking out into the horizon and told each other stories of what all the characters on the beach were doing and where the sailboats, airplanes, and birds were going.

According to Nathan, the airplanes were going home and the birds were going to look for friends.

Justin continued to sleep.

As the sun slowly made its way over our heads, I decided to start making our way back (as I realized I’d be pushing a double stroller with about 60 pounds in occupancy…plus the diaper bag…up. hill.).

Nathan started to calm down, an antecedent to him dozing off–he was quiet.

My mind started to wander. There I was, a relatively young person walking among affluence…I mean, the expensive homes, cars…on a weekday. I saw the looks (well, I always get looks since I look like a teenager and have two kids in tow) like, uh, what are you doing here? Shouldn’t you be in school? Are those your kids? (I get asked this often and am told that I am too young to have kids. Uh, I’m 2 years shy of 30–not that young.) They hear me refer to myself as Mommy, forcing themselves to give a second glance…”So, she’s not the nanny?,” I imagine them thinking.

When I crossed through those guarded gates of the community of track homes that morning, I was leaving behind what I felt like I did not deserve. The trail that I walked on, parallel to the ocean, belonged to everyone. As I allowed my mind to wander, I realized that I did not feel ashamed or guilty for embarking on this simple pleasure, on a weekday, nonetheless, because I was investing my time into the well-being and growth of my children…my most treasured assets. I was giving Justin that fresh breath of salty, ocean air, and the feeling of warmth from the sun against his precious face. I was giving Nathan my thoughts, my time and attention (that’s all children really want from their parents), and exposure to the real world.

I had given up so many weekends from the age of 17…I had given up a lot of myself, really, during that time. I was always at a place I did not want to be because there was always a better place I thought I should be at–I could be helping at the church, attending mass, spending time with Loi and my Nathan, my grandma’s house, on the couch reading books or writing, pursuing a Masters or Doctorate. But, I continued on that career path thinking that that was where I was meant to be…but always feeling so empty, like something was missing.

Many may think, “Poor little rich girl.” I had every material possession and my education, and barely a justifiable struggle to speak of. My turmoil and struggles were indeed internal. I was always doing something productive, working long hours, producing monetary gain, playing with Nathan, cleaning up the house, folding laundry. I almost did not allow myself time to just sit and be. At the same time, I never felt like I was doing enough.

As I walked that trail, I realized how far I’ve come since Justin’s come into my life. I no longer fill that emptiness with things and measure my self worth by it either. I’ve found myself again, that little girl who once wrote stories as gifts to her teachers. I’ve found my heart again, in loving my faith. I’ve found my passion in helping the downtrodden.

Sometimes, nurses and staff at the hospital joked that we should use the turmoil he’s caused us in the hospital as leverage when he’ll start acting out as a teenager. Like, he better be thankful that we were there for him and feel bad for all the stress he’s caused us. I know, it was only a joke. But, truth is, I should be thanking him for all that he’s given me, for helping me find myself again, and realizing the true meaning of love and life…for helping me shed of all the superficial fluff surrounding my physical shell and way of thinking.

Along that trail we walked. While I surely did not deserve a multi-million dollar home, I did deserve to be by that beach, on that very day with my children…and they deserved it too with their time with Mommy. We deserved it because we realized a bit of life that is not truly comprehended or appreciated by others…that sometimes, there is no need for separation of who we are and what we do. And, when that is realized, our truest rewards are reached.

Appointment filled week:

Monday: Nathan’s orthopedic appointment for his trigger thumb and middle finger. We are scheduling a (minor) surgery where he will have to undergo general anesteasia to fix it. Hospital stay should be an hour; recovery will take about 3 days.

Tuesday: Justin’s first occupational therapy evaluation at CHOC Rehabilitation Center. He is at the level of a 4-5 month old (although he’s almost 8 months. But, it’s OK! He’s super cute and interactive.) Justin was more interested in getting the attention of the therapist than achieving his tasks. He was constantly smiling and looking at her and batting his hands at her.

It’ll be another 2 weeks before we’ll get an appointment for occupational therapy sessions.

Thursday: Justin’s first physical therapy evaluation with specialist at CHOC Rehabilitation Center.

Monday 3/31/08: Justin’s cardiology appointment with Dr. Rebolledo for an echo and check up. Crossing our fingers and praying that the leaky valve hasn’t gotten any worse and his pumping action is better or stable.