Home of the Four Trans

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!

Loi and the babes supporting THE TEAM!

At 4:30 in the morning, we were rudely awakened by the fire alarm screeching through the house (more on this later). While both of us jumped out of bed (actually Loi did while I directed him to call the on-site property manager as we had suspected a false alarm), Nathan and Justin continued to sleep soundly in their positions on our bed. Nathan gave a faint groan, mumbling, “Mommy, turn that off,” then went back to sleep. Loi went outside to survey the rest of the complex and concluded that it was the doing of some prankster. It was a good 10-15 minutes before I heard the fire truck’s low rumble at the gate. I stepped outside to wave them down, and to let them know that we’re ok. After about a minute, they turned off the alarm and investigated the property. As we had suspected, false alarm.

This was how Loi’s third Father’s Day ever began. Sorry, Pops!

But, the Lakers (Loi’s favorite basketball team) won the fourth game of the finals, after losing two in a row, placing them as potential contenders of the championship. Day made all better! That and being able to watch it with Nathan and Justin.

This year’s gift included Nathan’s homemade card made of construction paper, fuzzy balls, and die-cut foam shapes.

I still cannot believe Loi is a DAD, PAPA, POPS. When I first met him, he was only 16 years old. At the time, I did not think, “Yeah, he has qualities I value in fathering my children. I think I’ll marry him.” We were just kids…who grew up…got married…and, now, have children of our own! It’s a little surreal sometimes when I listen to him discipline Nathan, or snuggling with Justin, or reading to them. I knew him when he was only a teenager, and now he’s a responsible man taking care of his family. Where has the time gone?

Now, he’s probably just landed in Washington DC where he’ll be attending some business thing. He’ll be gone for 4 days…boo hoo. If you’re reading, we all miss you! We’ll see you soon…and don’t forget to wear sunblock!

Thanks Papa for loving us and taking care of us!

We attended a wedding...

Loi and I dressed in our best attire. Notice the detail of the sweetheart table in the back, with the fresh orchid blooms and roses hanging from the branches, lit candles, crystals dangling…

Group pictures: (T-B: With Auntie Mai and 3/6 cousins, with Y Phuong, with Great Grandma)

Don’t we all look so beautiful?

Justin even danced!

Nathan visited the Bob the Builder exhibit at the Discover Center .

Life’s been pretty fun-filled in the Cao-Tran household.

Justin’s medical history–dates for surgeries, doctor’s appointments, important events, changes in medications, notes–is all completed and up to date by my recollection. The doctor’s notes and discharge papers are somewhat of a mess in a separate binder in plastic coverings. This, I will work on next. Then, I have to order his records from Children’s Hospital LA and OC.

Though this is such a daunting task, keeping up with all these dates and events and paperwork,I know I have to do it. I realize this when every time I see a different specialist, even while in the hospital, they ask me for Justin’s (very long) medical history. I can proudly recite it from memory. Everything that ever happened from the day I received news of his diagnosis inutero just rushes out like water from my mouth. “Slow down, there,” a GI Doc once said to me. Everything is important. Everything that has ever happened defines the Justin today. And, I think it’s important for them to know the little pieces to see the big picture.

But, there will be a time when my memory of such horrific, sad, unpleasant events will fade. Then, there may be a time when Justin must know his own history to repeat to his healthcare providers while I may not be there to do it for him.

It is hard for me to believe that he’s only 2 months shy of 1 year old. Judging by the thickness of his 3 ring binder and his extensive medical history, you’d think he’s an old man. We’ve been through so much with him in the past 10 months, I feel like it’s been years….not months.

Sure, I don’t know what the future holds. But, it doesn’t hurt to prepare for it, right?

“Just a little better? Or, better?,” Loi asked when I called to tell him the good news about Justin’s leaky valve.

Even if it’s a little better, it’s better. That’s all I need to know.

“Why is it better?,” asked my younger sister when I told her.

The little voice in my head (yes, I have one. Scary, huh?) kept pressuring me to ask the cardiologist the same question: “Why do you think the leakage has improved? How would you label the severity of the leak?” I looked at him, attempting to concentrate on him saying, “This is very good news. I’m very glad,” while fighting the voice in my head.

I’m sure we all want to know how and why this leak that I was told could never be fixed (but, could be improved after the Glenn) and could only be maintained with medication got “better.”

But, is why the correct question to ask? At this point in my journey, and with all our past experiences with Justin, I’ve come to realize that there is no true explanation for the way things happen the way the do for Justin. Asking why will not help me learn any more information that would allow me to fix his leak. And, if the doctor really knew why, he’d share some of it with me.

The leaky valve has gotten better. That’s all I need to know. That, and my belief in the Lord and his plan. I’ve prayed for that leak, I’ve asked, pleaded even, with the Lord for my child. I truly believe that it is a miraculous, divine intervention that has allowed this to happen. I have to believe that even if the material world may not always work in my favor, according to the way I’d like for it to happen, I must let it be, listen to my inner voice, the Lord, to guide me toward my given path. I must also allow Justin’s path to unfold as it should. Though the reward may not be immediate or even of this world, there is a greater picture, a grander scheme that shall be achieved.

For this moment, the Lord has allowed things in this material world to work in our favor. For that, I am thankful.

We just came back from the pharmacy. Which is only 6 minutes away walking time, may I add. I love our new place!

The pharmacist behind the counter commented on how little Justin is, not even a year old, and constantly on Amoxicillin.

“Why?,” she asked.

“He’s aspleenic,” I nonchalantly replied.

“Aww, poor thing.”

“Yeah, and he has some heart issues, too.”

“So, how is he doing?”

“He’s fine now, but his condition is not ‘fixable’.”

“How are you and your husband doing?”

“We’re fine, now. I think it’s most stressful when we’re in the hospital. But, now, everything is pretty normal.”

Now. Normal.

On our walk back, I contemplated about our meaning of normal, surprised at myself for realizing that we have gone back to a normal that does not involve constant, obsessive compulsive stress every single day.

Normal is:

1) Driving Justin to PT 2 times a week and setting aside 2 hours each day to drive to the sessions and to participate.

2) Giving medicines to a crying Justin every day, 3 times a day.

3) Taking him to see specialists: cardiologist, hematologist, neurologist, electrophysiologist. And, awaiting anxiously for “news”. Seems like every other week, but more like once every month.

4) Calling in for a pacemaker check once a month and listening to the click, click, click over the dial tone to make sure his pacemaker is working.

5) Monitoring how blue his lips get when he cries or while he is asleep or awake.

6) Wondering why he sleeps so much when he does…is it his heart? Or, did he just have a really productive day.

7) Keeping up with insurance and medical bills.

But, normal is also:

1) Seeing him smile, that wide mouthed smile

2) Listening to him ah, ah, ahhh and eh, eh, ehhh.

3) Kissing his chubby, chubby, cheeks.

4) Being amazed every day by his progress: jumping more and more in his jumperoo, lifting up his right hand, making new sounds, reaching for toys, fighting with his brother for a toy.

5) Waking up to see him smiling and ah, ah, ahhing.

6) Going to sleep to see his peaceful face.

7) Hearing his chuckling cry when he sees a bottle of milk.

Picking him up and holding his warm body against mine.

9) Our daily walks outside with brother.

10) Having him in our lives, everyday for the past 10 months.

Then, I catch myself, thinking don’t get too comfortable–things can change on a dime.

All my heart mama friends, you were right. There is a normal that we do return to after giving birth to a child with heart defects. There is a normal after enduring those sleepless, nightmarish nights at the hospital. The normal, of course, is never quite ever really normal. But, hey, what’s normal anyway? Boring, I think.

I find myself thinking about all our family and friends, too. Thanks for all your support. Without it, we would not have gotten through all the emotional turmoil.

Two weeks of no internet connection left me feeling out of the loop and far from civilization! But, we’re back!

Here’s a quick update:

1) Nathan had his surgery on May 16, 2008 for trigger finger and thumb. He had his stitches taken out last Friday. All went well and his recovery seems promising…except his middle finger hurts when he tries to move it. So, I’m keeping an eye on it and considering taking him back to the orthopedic surgeon to take a look again.

2) We moved! After 9 months at Loi’s parent’s house, we moved out 2 weeks ago into our own place that is closer to the freeway and my parent’s house. We finally had internet and cable installed today.

3) Justin is is making progress in physical and occupational therapy. He can sit unassisted and roll over. Today, he moved his right arm, hand, and fingers (affected by the stroke) all by himself to feel beads and pop bubbles…for the first time in 5 months since his stroke. I was so excited, I kept exclaiming, “Omigosh! This is so amazing!,” over and over again.

4) Colds. Nathan caught a cold from his cousins that he passed on to Justin. Coughs and runny and stuffy noses all around. Nathan is recovered and Justin is recovering.

5) Justin talks! Okay, not really talk, but he’s starting to make “eh, eh, ehhhhh” noises, again, after months of silence and smiling. ADORABLE!

6) Nathan’s routine dental check-up: free and clear of cavities. I’m so proud! All that brushing and refraining from excessive sugar indulgences saved me several thousand dollars in dental work.

7) Nathan’s eczema is improving. After 2 years of battling with this itchy situation, we’ve found a solution with Zyrtec and a steroid cream. He has not scratched himself to sleep or woken up scratching for 2 weeks! So, Loi and I are pretty well rested. Nathan’s behavior has improved as well. Funny thing is we’ve tried Zyrtec when he was younger and it did not work. But, now it does! We hope he’ll grow out of it it soon so that he does not have to remain on drugs…blah!

As I walked to my car today from CHOC Rehab with Justin in my arms, I could not help but think how completely fortunate I am. I thought of that very moment, of how I felt like I had everything–the husband, children, home, financial stability. But, I also realized that none of this was mine. The Lord had given this all to me, and he could simply take it back. And, I was OK with this. I felt a sense of calm knowing that I’m being watched over and that I’m part of a plan…we all are. Now, more than ever, I believe this.

Next time, I’ll share my feng shui adventure and reading that shook me a little, but did not falter my belief in the Lord’s plan.

Have a beautiful day!