Home of the Four Trans

Two years ago, Justin made his grand entrance into the world with a giant wail. I’ll never forget the way he immediately became calm when he saw and heard his Mommy for the first time. He was screaming with his nauseated newborn voice while getting measured, weighed, blessed, etc. But, the moment he sensed his Mommy’s body and voice, his wailing stopped. He comfortably settled into my arms, quiet and content. By that time, everyone but my sister, mom, mother-in-law, and Loi were allowed in the room. Everyone else was outside, and was questioning why Justin had suddenly stopped crying. It was because of me.

A few minutes later, we were separated for six hours (the number of hours it took for the stupid epideral to wear off. The epideral that was administered when my baby was already down, and ready to go. The epideral I was pushed to get. Ugh.) before seeing each other again. I remember watching the clock wondering how my baby was doing. I remember my sister bringing me a picture she had taken of Justin as he was pushed down the corridor to  NICU at the Children’s Hospital next door, with his eyes wide open, curious of the world around him. I remember the sadness I felt, even days later, for not yet having seen my child’s eyes opened. The next time I saw my newborn baby, he was surrounded by a respiratory therapist and nurses because he was under respiratory distress as a side effect of the medication that was given to him. At that time, the first time I had to spend with my new baby, he was intubated and connected to tubes, wires, and machines; his eyes were still closed. I remember the tears I shed for the pain my child suffered. I remember singing to him, “You are my sunshine.” I pecked him on the forehead. I rubbed his tiny fingers between mine. All the while, he continued to sleep, comforted by his mother’s warmth, I’m sure.

A few hours after our time together, he was prepared for transfer to Children’s Hospital in LA where his surgery would take place. I remember how he cried in his sleep while the transfer team prepared him for the helicopter ride. He squeezed my finger with his whole golf ball of a hand.

I remained at home in Orange County resting, healing, and pumping while Loi bonded with Justin.

I came up four days later, the day before his first open heart surgery. I held my baby, with his eyes still closed…and, didn’t want to let go. But, I had to. As I looked through the images of the pain my child suffered following his arrival into the world (pictures that are difficult for me to see, and I’m sure will be even more so for you), a feeling of heaviness fell upon me, as it did back then; no child should have such a cruel and cold reception into the world; no child should be away from his mother’s cradling arms for so long.

I did not see his eyes until days after his heart surgery.

Now, two years later, he’s by my side, like a joey to a kangaroo, and I take not one moment for granted. His wails have been replaced by urgent calls of  “Mama! Mama! Mama!” And, those eyes, the ones I had achingly longed to see?  I knew there was something special about them. His neurologist once said, “The eyes are the window to the soul,” and somehow, Justin’s spoke to her. An aunt once commented on how his eyes look straight to your heart. When we go out, he draws people to him with his bright eyes while batting his lashes. Yes, they are special, almost as special as the person who sees with it.

So, how do we celebrate such a life that has touched us so deeply? How do I create a day to express to him how very special he is to us. Because of our (my) fear of what the future holds, I tend to cram the days of our lives with mini celebrations by way of outings and adventures. I pack the days with wrapping my arms around him and kissing him and telling him how special and cute and wonderful and amazing and lovable he is. I cook for him. I let him be, explore, smile, dance, laugh, watch tv, eat ice cream, scoot around with just a diaper and shirt on–because to live life is to celebrate it, right?

Well, on his birthday, I gave to him the only way I knew how–through the labor of my love. I spent 4 hours total on his double layer, 9″, marshmallow fondant chocolate cake (it was my first time ever baking something so fancy hence the hours of labor). I beat, mixed, kneaded, rolled, cut. I spent another hour printing, cutting, gluing, and stringing his personalized birthday sign together. I filled balloons with helium. Whether or not he understood the significance of his day, I wanted him to see the festivities that surround it. Loi helped make his birthday hat, wrapped his present, and most importantly kept the kids away on a special trip to McDonalds for breakfast (so they could play on the playground, also), and a couple of trips around the block so that I could create the “surprise” for Justin. Nathan helped decorate the birthday table with his cars, and was so proud of accomplishing his “mission”.

Although he did not say it, I know Justin understood everything was for him. He was so happy to see his “pat, pat” ( his words for “Little Einstein”) cake, and squealed in delight. While we sang “Happy Birthday” to him, he clapped. At the end of the song, he knew he needed to blow out his candle, and he was successful (after several attempts)!

Opening his one and only present was a hit.

We spent the day at Jumpin’ and Jammin’, an indoor playground facility. Justin spent most of his time in the toddler area, scooting around, watching other kids, and trying to interact with them. He also spent some time with Nathan collecting balls and loading up the shooters.

Loi and I just wanted to spend time with him as a family, with all of us together. As simple as that sounds, being together is a treasure we cherish deeply because our past experiences have proven that we may not always have this luxury.

We ended the day with a birthday bath, and of Justin trying to show us how old he is, now!

I hope my little one knows how much he means to us. Happy Birthday, My Love!

P.S.

Justin was torturing his brother for some of the day, hitting him with cars, and taking apart his LEGOS. I had to put him in a corner at one point. It was his day, but I had to do it. Learning the concept of discipline is a part of living life, yeah?

Thanks for checking in on our little man and allowing him into your lives.

Since we’ve had Justin, we’ve learned to enjoy the simpler things in life. Big vacations to faraway places do not play into our plans as Justin is limited to where he can go in altitude and proximity to hospitals and medical care. As residents of sunny Southern California, though, we’ve found there to be endless opportunities for exploring and excitement here in our home state.

Mall

It’s been awhile since we’ve been to South Coast Plaza. Aquariums, parks, and Legoland have taken the place of shopping, but, we had a birthday gift to shop for at the Disney Store this particular Friday, so off we went.

Warm croissants and pastries from Vie de France, carousel rides, balloons, and toy stores. Need I say more?

These balloons are $6 each! My kids didn’t ask for one, thank goodness. But, they sure are pretty to look at!

Justin was not so sure about the carousel.

After one round, he warmed up to it, and wanted to go for a second time! After the second time, he didn’t want to get off! After he got off, he kept pointing at the carousel, and grunting to insist that I take him on, again. Didn’t happen.

Nathan had fun, he really did. He just hates getting his picture taken. Don’t know why…

Justin and Nathan playing at the train table. Notice that Justin is standing and playing by himself! Yay!

Again, the brothers playing side by side. Notice how Justin is standing by himself and playing with his unaffected arm. Yay!

I don’t get why the kids are so intrigued by the escalator. I think they went up and down all 3 flights. But, it’s sure good for providing them with sensory input.

On this trip, I’ve noticed how much more independent my children have become. My once trusty companion, the double stroller, is, now, more of a cumbersome contraption. I found myself unable to keep up with Nathan as he swerved through the aisles in the toy store because the stroller was a darn wide load! Justin didn’t make it any easier as he preferred that I hold him under his arms as he walked through the aisles, following his brother. Eventually, I ditched the stroller to a side, and kept up with the kids at the train and race car track tables.

Upon entering the toy store, we met a nice father who later introduced us to his 3 year old son who has Down Syndrome and endured an open heart surgery. The father had noticed Justin’s scars when his shirt lifted a bit as he reached for a toy.

I knew he had seen more than he had bargained for when he allowed a “Wow” to escape his lips. I ignored it, not knowing how else to respond. Then, about a half minute later, he said, “You know, my son had heart surgery when he was 3 months old.”

The ice broke, and it turned out that we live in the same city. He told me how well his son is doing, health wise, and is trying to catch up cognitively. They had plans to travel to Japan the next day. After having his son, he and his wife had a pair of healthy twins.

I thought, “Wow, life does go on.” It does. We breathe, laugh, smile, explore, contemplate, move on, LIVE, every day.

He said goodbye and good luck, and I was so grateful. This really set the tone for the remainder of our weekend.

Beach

Can you believe that we live 25 minutes from the coast, but have not traveled to the beach for 2 years? Part of the reason is my phobia of the sun and the damage it could incur on our skin and health. The other part is because Justin is on certain medications that make him more sensitive to sunlight (i.e. sunburn). However, we lathered ourselves with sun block, topped our heads with brimmed hats, and headed out to the sea-side.

The kids kicked their feet in the water, Nathan chased waves, we dug our feet in the sand. In between, we lounged on our Lightening McQueen beach towels and munched on BBQ Lays Potato Chips and Rold Gold’s Pretzels.

It was only 2.5 hours that we spent on that beach, but I know it left such a positive impression on Nathan that he asked to do it, again, the next day. Maybe next week…

Justin looking out into the ocean.

Nathan preparing to scoop up some wet sand.

Can you find My Boys?

We sure are a colorful bunch

That evening, we attended a birthday party at Chuck E Cheese’s.

The remainder of the week was family time, and graduation parties.

Upcoming Events

This month, we’re looking forward to cherry picking on some local Cherry Orchards, movie in the park, and family clay time (Mommy and Nathan only). Maybe, a trip to the Discovery Center to learn about robots, if Nathan is up to it.

This week, Justin has neurology and opthamology appointments for routine check ups.

Thanks for checking up on us. I hope you all have a wonderful week.

Nathan crafted his artistic pumpkin at a friend’s birthday party. 

I’ve been MIA lately because Nathan’s been sick. He even missed out on his class Halloween celebration (that included him participating in a parade don in costume and everything! Boo hoo.) He caught some virus that caused his fever to go up to 103 degrees, stomach aches, and vomiting. According to his ped, it takes about 3-4 days after he’s contracted the virus for symptoms to show. First thing that came to my mind was JUSTIN!!! Of course, I was worried sick about Nathan, with him being so groggy and miserable and sedentary…so unlike his usual self. But, the thought of Justin having to go back into the hospital made me even sicker…intubation, IV’s, poking, prodding, and who knows what else…you know how it goes.

I hoped and I prayed.

Two days go by, and I thought we were in the clear. Justin had a little cold that he was getting over, but other than that, he was his usual happy self. Then, at 1AM Saturday, out of no where, Justin wakes up vomiting. Not once, but repeatedly. Loi and I were freaked out! I kept him upright, watched a little TV with him, fed him pedialyte and water. Two hours go by, he seemed to calm down with the gagging, and we put him to sleep. We contemplated going to the hospital, but used our best judgment, and decided not to. It was a weekend, in the wee hours of the morning, and while Justin was vomiting, he looked, and acted as usual. He did not seem to be under much distress. We tried to keep him hydrated the best we could until morning.

Justin was being watched and cared for from above.

We made it through Sunday with purely pedialyte, water, and some solids. By Monday, he was back to formula and his usual pureed diet.

Nathan took a little longer to recover. In fact, his temperature went up that Monday night to almost 104, and he continued to complain about his stomach pains. I was worried that it was some sort of bacterial infection. With some rest, and more fluids, by Wednesday he was back to his rambunctious self…you know, the one that causes tornado like destructions throughout the house?

Today, Nathan enjoyed a game of rolling his CARS and Bob the Builder vehicles through “mud”, aka, Playdoe. 

With all the sickness going around, though, they both had a little opportunity to celebrate halloween and went trick-or-treating.

Nathan pointing out where he’d like to go next as Justin hangs onto his Kit Kat and Crunch bar. The Kit Kat was the first candy he received and refused to let go of it. When I asked for it, he brought his hand behind his back with the intention of hiding it from Mama.

Justin as a football player because it was cold out and his dinosaur costume was a little dirty. I don’t think anyone knew what he was supposed to be, but gave him candy anyway because he is so darn cute!

Fireman Nathan enjoyed a few rounds of MarioKart at his Grandma’s house after trick or treating.

Justin at physical therapy dressed as a floppy eared cat with sequined ears…too cute, couldn’t resist!

Justin the Dinosaur. Enough said.

 Until next time, I hope you all enjoy the change in seasons! I certainly am loving the cool, crisp air of Autumn that is now upon us.

I haven’t kept much track of Justin’s age. In fact, I often forget how old my son is (14 months). There are 2 reasons for this:

1. His Size. He’s been growing very slowly compared to other “normal” babies, that his size does not change enough for me to realize how much time has gone by. We’ve had him in this baby stage for a very long time.
2. My Perspective. I don’t count the days, anymore…You know, the days before the weekend, before Christmas, before birthdays, before his next surgery. I take each day as it comes, and pray that that day and our following days are just as beautiful.

While I do not obsess so much over his chronological age, I do take note of his every development. It’s a joy to see how he’s growing physically, cognitively, and socially.

Here are some highlights:

Roller Baby: He doesn’t quite crawl or walk yet (but, we’re working on it), but that doesn’t keep him from getting into things, and moving from place to place. He loves to roll! He’ll roll to the cable box to push the buttons. He’ll roll to his brother to grab a toy away. He’ll off the bed so his Papa could catch him. We call him our Rolley Poley Ollie!

Babbling: He says a lot of ba, ah, ma. Lately, he’s trying to learn how to say Hi and Bye. I think he has the most beautiful sing song voice. Whenever I sing to him, his face lights up, and he responds by babbling in this cute singing voice.

Waving: He can do the side to side wave, or the backwards to himself wave…on command! Yes! He understands. Very exciting.

Fake Crying/Whining: He’s beginning to know how to get what he wants…by crying or whining. The funniest thing is when he whines to get Nathan in trouble. After Nathan pushes him on the ground, or whacks him with a toy, or throws something in his face, he’ll look for me first to make sure that I had seen what had just happened. Once I start to scold at Nathan, then he’ll start crying for extra effect.

Rolling/Creeping towards a toy fire truck.

Stopped to pose for a picture for Mommy.

Unsuspectingly gets whacked in the head with some very hard balls while posing for a picture. I was in the midst of taking a picture of a smiling Justin when Nathan came up from behind. Things can get rough around here.

Head Shaking: When I ask him a question, I’ll ask at the end, Yes? or No? If the answer is Yes, he’ll nod repeatedly with a smile on his face. If the answer is No, he’ll shake his head from side to side repeatedly with a smile on his face. Again, he understands…Very exciting!

Putting toys in the basket: He knows how to do this on command!

Thank you everyone for following Justin’s journey. Though these milestones may seem so boring to some, they are like little joy nuggets to us, and we want to share them with you.

He’s been through 2 open heart surgeries (BT Shunt and Glenn) in his short time on this earth, and twice, he’s passed on us. But, time after time, he’s given this life to live, and we are grateful for every moment that he has with us, growing and thriving.

I realize some are concerned about whether or not he’s there, with his cardiac condition the way it is, and with the damage from the stroke. I cannot say for sure because I do not know…I don’t think anyone does until he gets older. But, what he’s been showing us are great signs.

Please continue to pray for our little miracle baby.

I helped make a dream come true for my little Nathan.

We showed up to the door of our local fire station unannounced (though, I did speak to the Chief about this a few weeks back, and he said to come whenever!) with a box of brownies in our hands.

The firemen were so gracious in not only giving Nathan a tour of all of their 5 vehicles, but also by allowing him to sit in every single one of them. We even left with parting gifts: a plastic junior firefighter hat, and a sticker badge.

What he really wanted to do was drive it.

He’s so small in this dirt engine.

The following week was fireman this and fireman that.

“What is your problem?,” he’d say. What he really meant was, “Do you need help?”

Then, he’d run in with his fire hose aka vacuum attachment to put out the fire or rescue someone or something.

Helping Papa water the plants with his “fire hose”.

Then, he got really creative.

Nathan as Fireman Dinosaur!

This trip was exciting for me as well. It was such an honor to meet these men who serve our city, and protect us from the fires that come rolling through during the Santa Ana Winds season. I actually ran into a few of them while at the market, and they recognized us. They even remembered Justin’s name (Nathan wasn’t with us). I appreciate this sense of community. I hope Nathan and Justin learn to appreciate it as well.

Being able to experience things like this with my child, and see his eyes light up, and his imagination and understanding of the world grow…and knowing that I was a part of it…reminds me that the daily turmoil that is motherhood worth it.

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…

New haircut, new threads, new shoes, same cutie. 
Stop bothering me, I’m eating!
Justin always enjoy spending time with his big brother.
Wow! Nathan has perfected “Blue Steel”.  
This is Justin’s first belly-time post-surgery.