The blog began as a tool of communication to the physical world about CHD and the triumph that may result from it–when I started, I didn’t quite see otherwise. I thought in this world and age, many CHDers made it to at least 40. When our journey began beyond the womb, I realized how much devastation and loss can actually result from CHD–I learned from support groups and blogs. So, I blogged with words that bled from my heart, stopping short of nothing because who could think of tomorrow when today was the end? Then, I realized other people who were not my family and friends were reading, and I got scared, and closed up a bit, stopped writing for bouts of times, even. Our privacy is important. But, I kept writing with a goal in mind and that is to spread awareness, or perhaps provide hope to others who had an ailing child with CHD.

But, that is not a reason strong enough to keep on going. I am a private person, and I think it is unfair of me to expose my children to the www without their consent. I’ve thought for a long time of how the information I share to the world will affect them in their young manhood or adulthood. After reading an article today from an adult CHD survivor, I made the decision to stop blogging about my children and Justin’s surgeries and life. I will eventually take this chapter of our lives down. I may turn Fourtran into a place for me, just me, and as much as I’m comfortable to share.

Thank you for reading and following our story. You’ll undoubtedly see me around the www.

Not from me nor Nathan, but from Justin! Today, while in a parent discussion at Nathan’s School Readiness Program, Justin was going on and on in his own language while the speaker was explaining to us parents about nutrition and health. I was quite embarrassed.

“Mommy, no!” (for random effect)

“Mommy, milk!” (because he wanted the milk that I didn’t bring in)

“Owwie!” (because I made him sit when he wanted to be on the ground)

“Book!” (wanted to read a book that was not ours)

“Nose. Owwie nose!” (sneezed and had boogies)

“Shoe!” (wanted to touch the innocent man’s shoe)

“Uh-oh!” (dropped his pen for the millionth time)

He’d also randomly tell me, “I uv ooo (I love you).”

The more I told him to “shh” the louder he got.

When I tried to distract him with something, he’d only talk louder about whatever it was I was trying to show him.

I was not used to this active, loud, and verbose Justin. He’s usually content in my arms or drawing on a piece of paper. Not today! I suppose I should have tried to walk out, but whenever I prepared to, he became calm, so I never did. It only started up again when I settled in. At the end of the session, I had to apologize to the ten parents who were there. They kindly told me to not worry about it because they know how it’s like with younger children. However, to make matters worse, there was another 2.5 year old girl there who sat like a perfect princess in her mother’s lap. Where did that version of Justin go when I needed him?

The speaker, also the school nurse, kindly took Justin from my arms at the end of the parent discussion so that I could finish filling out the paper work in peace. Of course, only then, did Justin become silent. The nurse asked him, “What happened? I know you have a voice. I heard you yammering away for an hour.” Yeah, exactly.

Aside from this embarrassing episode, we are proud of Justin’s new expressive language skills. He’s able to communicate better with words, although his annunciation still needs work. He is getting better at imitating, also, which is real fun; especially when he’s mimicking his older brother. Keep up the good work, bud!

Justin is very proud of his newfound skill. During circle time at school, he pushes himself up to standing using his booster seat, walks up to the teacher when she calls his name to pick up his picture card, all unassisted and with a big smile on his face! Even his teachers and therapists are amazed by the progress he’s made!

Nathan is also very proud of his little brother. He makes a grand announcement every time Justin lets go of a piece of furniture to walk, or when he falls down correctly instead of crashing into something. Nathan always says, “I taught him to walk!” Well, he’s close to the truth since he’s the greatest motivator for Justin.

Justin is getting noticeably stronger since I am able to walk him without him getting wobbly on me. He’s able to maintain is balance and turn his body toward the direction that he wants to go. We’re hoping within the next couple of months, he’ll be doing it without any assistance. Oh, how exciting that would be!

Lunar New Year happened to fall on Valentine’s Day this year which made celebrating both holidays even more eventful. Not only did Loi and I have to prepare for the New Year by doing the traditional cleaning, hair cutting, gift buying, house decorating, and red envelope stuffing, we also had to squeeze in a bit of Valentine love for our boys and ourselves.

I’m a traditional type of girl so I try to instill what I know of our cultural traditions in the boys as well.  I made sure to buy the festive yellow cherry blossoms and yellow mums to decorate the house with, and adorned those with red li xi bags. I wrapped gifts for each of my boys with red cellophane to signify “good luck” (though I don’t believe in it. It’s become more of a tradition); Nathan got a box of Oreos, Yan-Yan cookies, strawberry candy, and chocolate filled panda shaped cookies; Justin’s bag was filled with the same, except for the Oreos he received peachy gummies. I think the boys got more sweets from me than they’ve eaten in their lifetime! But, they enjoyed opening their gifts, though they did not eat all its contents. Loi’s bag was filled with melon seeds, dried squid, and cuttlefish (we don’t usually snack on these, so it was a treat!).

My favorite part of Lunar New Year is dressing my kids in the traditional Chinese and/or Vietnamese clothing. They always look so handsome and fancy in it. We took their annual New Year photo to share with family and friends.

On the morning of February 14th, I woke up early to make the boys’ Valentine cards, breakfast, and cupcakes. I had slow cooked cranberry and blueberry oatmeal (inspired by Jamba Juice’s recipe) the night before, also. When they woke up, I allowed them to open their presents and read their cards while Loi snapped away. The boys then had their meal of pancakes while Loi and I had oatmeal and eggs– simple but satisfying. After breakfast, we all played a few games of the lucky crab game. Justin’s favorite item to bet on was the crab. He was quite the gambler and even bet all his money on the crab at once several times throughout the game. Of course, he wasn’t fortunate enough to win, so Loi (the dealer) gave him some money to continue playing. Nathan didn’t have a technique, but bet randomly, and seemed to do well. He really enjoyed the game!

After our morning festivities, we all got dressed to visit my Grandma for our annual party at my uncle’s house.

This year, many of our extended family attended; cousins, aunts, and uncles that I hadn’t seen for years were there. The kids played fooseball, Justin showed off his walking, I talked with my cousins, we ate a ton of food. The purpose of the celebration, though, was for my grandma. Each of her children with their families wished my Grandma a prosperous New Year and gave her their blessings. She had seven of her children there and one godchild plus all their families. It was a full house! The highlight of the day for the children was receiving li xi, red bags filled with money. Both Nathan and Justin enjoyed collecting, then gave it all to me because they weren’t sure what to do with it afterwards. Nathan was excited with the fact that he had a lot of money so as to buy more toys with!

The festivities continued until Monday with Loi’s family. We had a family meal consisting of the traditional lucky pork leg and many other items. The children received li xi. I allowed Nathan to use one of his li xi of five dollars to buy a toy at Rite Aid after dinner; he bought two hot wheels of course, and still had “lots of money” leftover, like 1 dollar and some cents.

As it goes every year, the children learn more and more about the traditions and learn to appreciate and understand it, which in turn allow them to enjoy it. Putting on the outfits is not something Mommy makes them do, but something they like to do; I think they like showing off their cuteness. Going to my Grandma’s house and wishing her well has always been a tradition since I was a kid, but with her growing older, it will not be a growing tradition for my kids. However, I’m grateful for the fact that they are able to meet and know her as they have.

Happy New Year, my friends and family!

We just attended a School Readiness info session about the kindergarten programs in our school district. The curriculum has definitely become more academically rigorous where children are expected to reach a certain level of literacy and math level by the end of the school year; 2/3 of the day’s program is focused on reading and writing; they do a lot of journal writing, how cool is that?!?! I appreciate how the class is broken down into smaller groups by skill level so that the children are working with the support of peers and teachers best matched for them. They also have physical/life/earth/health science, social sciences, art, and music integrated into the curriculum. I found the program to be well rounded.

By March, I need to have together his paper work, medical records, screenings, and etc. to enroll him in school. We’ll then attend the school’s orientation and open house. By September, he should be a full fledged public school going boy! Then, the fun begins: back to school shopping for supplies, parent volunteering, PTA meetings. With the school allowing many opportunities for parent involvement, I’ll be able to continue my active role in Nathan’s academic life, which I find crucial at any age but especially important during these formative years.

He’s grown a lot in this last year not only on an academic level, but also on a social level; he’s able to regulate his feelings better and is more outgoing in new environments. Based on what I see in my son, I do feel that he’s ready for Kindergarten. I’ve also enrolled him in our local School Readiness Program to introduce him to the type of environment he’ll be in when the school year begins to hopefully ensure a smooth transition.

My boy is growing up!

Two days a week, Nathan also attends a preschool program at Justin’s school where he acts as a model typical child for other children to learn from. Today, one of his teachers came up to me during Justin’s snack time to tell me how “precious” and “kind” Nathan is. At first, I thought, “My Nathan? The one who fights with his brother and sometimes has a hard time sharing?” The teacher went on to explain how he enjoys helping her help the other children. He also shares well with the other children and even shared a part of his snack with her. She said the way he talks is just too precious (I absolutely know what she means by this–he’s quite the articulate talker). She also reported that Nathan talked about his baby brother. That, I already knew. Nathan is very proud and protective of his baby brother and always makes sure that those around him know this. This moment with his teacher made my day that much sweeter knowing that my son is not only brilliant, but so kind and sweet.

Watch out, world. Nathan is coming.

Lynette, a housewife, was carrying a potentially brain injured twin due to falling to the ground and the placenta tearing from the uterus, limiting the blood flow to the child’s brain. Although there was medical intervention available to save the baby, the doctors could not say for certain how physically and mentally affected the child would be. Just as the team were pushing Lynette to the OR, she fell into a dream, imagining what it would be like to raise a disabled child.

She envisions herself fourteen months into the child’s life breaking down during a physical therapy session as her child screams during his stretches meant to keep him from getting too tight which could damage the development of his limbs. She wondered if anything they were doing for him was working or worth trying. The therapist reminds her to focus on her son’s progress and not compare him to other children his age. She then envisions that child more than a decade later walking into her kitchen with the assistance of a cane, his right hand in a fist, and tucked into an L shape at his side as he asks for a sandwich. She forces him to make his own if he wanted one because she wanted him to learn to be independent even if it pained her to see her son struggle; with one hand weaker than he other, he did not have the same dexterity as his dominant hand, so opening the bread bag was even difficult for him; silverware clattered to the ground, he dropped his cane. Eventually, though, he did it–he made his own sandwich. A decade or so later, the boy is at his law school graduation ceremony thanking his mom for pushing him to live beyond his physical limitations because as he quotes Mahatma Gandhi,

“Strength does not come from physical capacity. It comes from an indomitable will.”

I couldn’t stop watching, and I did not want that very moment to end. The portrayal of the mother and child were so accurate, I saw a bit of me and lots of Justin in those characters. I saw and felt hope for Justin.

Lynette woke from that dream to learn that her baby didn’t make it. I felt heartbroken and thankful. Heartbroken because I had hoped the producers would introduce and maintain a character with physical disability to the show which would create awareness about many issues: strokes in children, family life struggles, the child’s struggles and triumphs. I mean, there is so much potential for drama there, no? Secondly, I was thankful because I have Justin. Even with the heartache and hardships we’ve endured together as a family, and I as a mother, and he with all his physical pain, I would never wish we never had him. Giving him the chance at life even when the prognosis was poor (according to one perinatologist) and being granted that power to carry his life means everything. I don’t have to live my days in a dream like Lynette wondering the what ifs, because I know.

My brother, after watching the show with my sister, asked me if Justin would be like that boy he saw on TV, if he’d walk and carry himself the same way. My answer is, “I don’t know.” Whether or not he’ll need a cane or any type of equipment for mobility in the future is really for the future to tell, although it is a possibility. Will his right hand ever be the same as the left? That, I know for sure, is no. He will not be able to use his right hand in the same way as the left, but I hope that it will become his “helper” hand to assist in things like holding down a piece of paper or carrying things with two hands/arms. And, yes, some of the things he does and will do will look funny and different to you and I. In the end, though, gaining his independence and living a fulfilling life is our goal.

Justin has been making progress with his gross motor, language, and cognitive skills. He’s taken a few steps on his own between Loi and I, although not consistent in his abilities. His favorite words are Elmo, yes, no, please, milk, Mama, and thank you. He can put two to three words together now, like “more milk please.” He’s becoming more proficient with board puzzles, naming things, and matching. He can also follow instructions much better than before and has a longer attention span. He’s come quite a long ways in this past year.

Nathan is still Nathan, as bright as ever. He is still homeschooling with me, although we’ll be registering him for kindergarten this coming September for the half day program. He loves teaching his little brother new things and announcing to the house when Justin achieves something new. His favorite things to do are build Lego, assemble jigsaw puzzles up to 48 pieces, draw and color, play the Wii (on limited time of course), play with his many cars, learn how things work and why, and read. He started basketball at the beginning of the month, but quickly grew bored of it, and wants to pursue tae kwon do and soccor instead. He still does not like a structured school program.

I’ve been counting and recounting my blessings. We are so blessed. My children, Loi, and I shared many trips, adventures, meals, walks, reading sessions, and family time together. The year had been so good for us that I’m sad to say goodbye. This next year holds many new and uncertain things for us with Justin’s next open heart surgery on the horizon and him starting preschool (without my attendance!), and Nathan starting Kindergarten. I suppose while starting school is a big milestone for both our children that brings me some anxiety, Justin’s next open heart surgery is the main event that has been weighing my heart and mind. I question how he’ll come out of it this time around, and how our hospital stay will affect Nathan, how all of it will affect Nathan. We don’t have a date for surgery, yet, but my heart’s been heavy thinking of it. It can no longer be pushed to the back of my mind because this year is the year…

I can’t decide if it is the changes I am anticipating in the coming year that is making our move to a  new home so much more difficult, or the fact that we’ve shared so many good moments in our former apartment. I walked through our apartment today gathering some of things–children’s books, a stepping stool, my purses, air fresheners, shoes, Justin’s Elmo DVDs he got for Christmas–and held my breath in fear of breathing out tears. I looked at our kitchen and thought of the meals I cooked for the kids and Loi, the cupcakes and cookies Nathan and I baked together, and the birthday cakes I baked for the boys. I looked around our living room and thought of all the games we’ve played on that floor. The dining room brought back visions of craft projects we had done. The walkway leading out our front door reminded me of the many stroller rides I’ve taken them on. A corner reminded me of where the Christmas tree was and the 2 Christmases we spent together there. Justin was with me, and I didn’t want him to worry, so I didn’t cry. Inside, though, I was drowning in a puddle of tears because this was our home for almost two years, a place where we lived and led life and were a family.

The reality is home is where we are together. It’s not the house or apartment that determines our home. But, leaving this place behind is like leaving a part of us behind, a good part, and accepting the changes that are upon us. Change and uncertainty are the obvious realities of life that we had learned to accept early on in our pregnancy with Justin, and it is the foundation of how we live our lives. Yet, when the changes come and and the uncertainties appear in the rearview mirror of our forward moving lives, no matter how prepared we think we are, we’re never prepared enough. So sometimes, it’s nice to pretend, step away from reality, and find some thing to attach myself to, some thing that isn’t as fluid as the seasons of our lives.

What weddings and funerals do for me is they remind me of life as a God sent gift. During these types of celebrations, I’m able to step out of the haze of everyday life and focus on these minute but significant moments that magnify what matters most.

At a wedding, the bride and groom look into each other’s eyes after up to a year of planning the reception, flowers, music, dance choreography, savings…to exchange these few words…

“I  take you  to be my wife/husband. I promise to be true to you in good times and in bad, in sickness and in health. I will love you and honor you all the days of my life.”

that are meant to bind them for the rest of their lives even after the flowers wilt and memories fade. It is in this small pixel of a moment that would determine the rest of their lives where two would become one…what God has put together cannot be undone…”until death do us part.” Powerful words of commitment, no?

That absolute moment in the entire wedding ordeal is what does it for me. It is that moment that reminds me of my own marriage and all that I promised my husband when we stood up on that church alter 6 years past. That excitement and full fledged willingness to do anything and all for him is how I should always feel because I had promised him so. Of course then, when we had said those words, I was 23 and he was 25, we had no children and had only us two to make happy; life was much simpler then. Baggages of resentment, anger, and failure soon enough came from the pressures of working and parenting, meeting our finances, (un) realizing our dreams. These baggages, though short lived, were never unloaded which eventually accumulated into strain on our marriage; for those who are married, you know that these are the facts of life, for those who are not, I’ll be the first to to tell you that marriage is not all bliss all the time, but you work at it. It is events like witnessing the exchange of vows between two people in love that encourages me to unload the unnecessary baggage in our lives to feel like I felt on our wedding day–excited and eager to pursue life together.

Funerals have the same affect on me in that while partaking in the ceremonies, I am given the opportunity to reflect on the unnecessary baggages in my life and am encouraged to let it go as to lead a more fulfilled life. Since having Justin and experiencing life like it’s a ticking time bomb, I’ve learned to strip myself of my many wants and material possessions. I’ve shed the anger and resentment layer by layer. Still, a stubborn human part of me can hold a pretty good grudge and am afraid to let it go (because it would mean that I have to change! *gasp*). Outside of the hospital setting, after adjusting to our normal life, it’s easy to think that life is anything other than a ticking time bomb. When times are good, it’s easy for us to fool ourselves into thinking time is all we have. But, the sun will continue to rise and fall as our time on earth dwindles. So, I remind myself to let go of the negative feelings that prevent me from nurturing the people and relationships in my life. Seeing a person laying lifeless there reminds me that in life, there is an end, and I need to say what I need to say to and do for those in my life before that silence settles between us forever. Sorry if this is a bit morbid. My heart is heavy.

Loi’s grandma lived a full life surrounded by countless children, grandchildren, great grandchildren, great great grandchildren (?) (Seriously, her family is so big, it seems like at every family function a new person pops out of the wood work). The effect of her life was so great that I believe she will live on through her children and grandchildren as they each carry a piece of her in the form of a memory, her mannerisms, facial characteristics, character, or a lesson she’s taught them. Though I was not nearly as close to her as her grandchildren were, I do know the effect she had on me: her undying spirit. Even in her last year as her health deteriorated leaving her wheelchair bound and unable to eat, she always mustered the energy to smile, the kind that would light up her whole face. She’d have conversations with me about my sons. She’d ask about Justin and genuinely cared about him even though she barely knew him. She’d let me massage her shoulders and legs and answer my random questions. The truth is I barely knew her and she barely knew me. But, for the short moments that we had together, I’d been touched. It is with those moments that I remember her by and shed these tears of mourning that I finally allow to fall. Rest in peace, Grandma.  You are loved.

I’ve tried many times before, but the words wouldn’t come out right so I never pushed published. It’s been almost a month and I felt it was about time that I gave an update on our family’s status. There’s been lots going on, mostly in my mind, but in the real world, too.

I’ve started giving my time to my church volunteering as a teacher’s assistant for catechism class (I finally learned to make time). I love working with the kids and getting a refresher on the scripture while I’m at it.

Nathan and Justin got their first colds of the season with mucous filled throats and noses.

We’ve decided to homeschool Nathan this year as a test run for the next several years (I’ve been spending many a nights researching on different methods of teaching, support groups, and learning materials).

We’re planning for Justin’s transition into the school district as a special ed student next year; the actual process begins in January. The emotions are overflowing; I never considered having to accept the label of special ed for my son; to me, he’s bright and amazing…not special ed.

Our lease is up in January, and we’re still deciding which school district we should live in for the sake of getting the most beneficial special education program for Justin (some more research and school visits to be done within the next month so that we can make our decision) all the while contemplating the benefits of homeschooling him.

Also, with the president declaring the H1N1 pandemic a national emergency doesn’t help the worry any.

Since I don’t drink, I’ve been washing away my sorrows in shows like FlashForward, Grey’s Anatomy, Dancing with the Stars, and sometimes Ugly Betty and Cougar Town.

Please pray for us as we embark on these new journeys of our life. In particular, please pray for my children and their health (especially with the H1N1 going around).

Thank you for checking in on our family :).

Not only is he using words, but he knows how to use his words correctly.

Here are some instances of how he’s blown my mind with his newfound language skills:

After completing the scavenger hunt challenge at his friend’s 2nd birthday party, he opened his box of prizes to find a plastic wrapped candy necklace. He called “Mama! Mama!” to open it. I had just finished explaining to Nathan that he may not eat the candy, so I turned to Justin and told him the same thing, “Justin, Mommy will open it for you, but you can only hold it, not eat it, OK?” And, just like his brother, his response was, “Wah (Why)?” It took me a moment to realize what he had said. Once I did though, I was ecstatic. I’ve been telling this story to everyone, including the parents at his school during the parent discussion meeting!

“Hmmm…what’s in here?”

“M! M! (open)”

“Why?”

Justin’s second favorite new word is “Stah (Stop)!” He’ll use the word stop as in, “Stah! Stah! Stah!” to get me to stop the car to pick up the toy bus that he’d dropped on the ground; or, “Stah!” to make his point that he does not like the music that’s playing on the CD player; or, “Stah!” to get my sister to stop wiping his hand with a Wet One.

Here are some other words he knows.

1. ta (diaper in vietnamese)

2. Mama/Papa/Cuh-Cuh (older brother)

3. Mah (me)

4. Nah, Nah (no)

5. Mah (milk)

6.  wah wah (water)

7. mow (more)

8. go

9. ca (fish in vietnamese)

10. ba (grandma)

11. buh (Boy, my brother)

12. bah bah (bye)

13. woah woah (dog)

14. dow (down)

15. uh oh

16. bubboh (bubbles)

17. buah (book)

18. paw paw (carry me in chinese)

19. oo oo, ah ah (monkey or gorilla)

20. ba (bath)

He’s also mimicking more when I ask him to repeat after me. For the things he cannot say, he’ll make up for by pointing, gesturing, or signing.

One reason (I think)  for his blossoming language skills is music. He loves to listen to the CDs in the car and sing along in his special sort of way; his favorite songs are ‘Alouette’, ‘Wheels on the Bus’, and Music Together Summer Edition songs. He also responds well to the songs sung during circle time at his preschool, and knows one song, his favorite, well. He’s starting his Mommy and Me music class called Music Together this Friday after a month’s hiatus which I hope will encourage further language development from Justin.

Even with his most recent burst in language skills, Justin definitely has speech delays. Children his age (25 months) should know how to say about 50 words, and be able to put two words together. In order to help him with his expressive language delays, we started him on speech therapy with a speech pathologist one hour a week. So far, he’s had two sessions though not much work has been achieved because he hasn’t quite adjusted to the long day (his speech sessions follows his 2.5 hour school sessions) and new therapist, yet. His speech delay may have something to do with his stroke though his hospitalizations, general aneastesia, and low oxygen levels to the brain may have something to do with it, also; it’s difficult to tell for sure.

Regardless of the reason, we are enjoying the fact that he’s making progress, and trying not to worry too much about something we don’t have answers to. Justin really is so much fun to be around!