Home of the Four Trans

Many of those closest to me didn’t think I could do it, but I did. I left my kids for a mini Mama vacation for 3.5 days. Loi took over for the weekend, which allowed me a peace of mind while traveling across the country to New York to watch Chicago the Musical, fine dine at Blue Ribbon Sushi, bike ride through Central Park, and lounge with my cousin and sisters. It was fun. But, boy, am I glad to be back.

Since it was New York that I vacayed in, you know, the city known as, “The City that never sleeps,” I wouldn’t exactly call it a vacation. But, it was nice to have the opportunity to speed walk without a stroller, and dress up and put on make up, again.

Needless to say, I missed my boys. But, they were allowed some father/son, male bonding time. I saw a marked difference in how Justin responds to Loi, now. Before the trip, Loi was just a secondary person Justin would ask for if Mama wasn’t around. After the trip, he wants Loi more than he wants me. The first morning back from New York, I thought Justin was upset at me. He barely gave me eye contact, and pretty much ignored me. When Loi came home, he reached his arms for Loi. That had never happened before! He never asked to be with Loi when he had the chance to be in Mama’s arms!

My sister Diane also saw a difference in Nathan’s attitude towards Justin. According to her, Nathan seemed nicer to Justin. Apparently, Loi allowed the boys to “duke it out” without his intervention. I suppose this allowed them to set boundaries and an understanding of one another?

The house was spotless when I came home! Loi had known that I would want to rest after coming back from New York, and have the opportunity to play with the boys. So, he caught up with the laundry and dishes, vacuumed, and tidied up the house so I wouldn’t have to. So nice!

Although I did enjoy my independence for the weekend, I must admit that I  enjoy my time mothering so much more. As I planned the itinerary and walked through the city, I couldn’t help but think how much fun my kids would have being right beside me. The truth is, I would have brought them along with me. But, with Justin’s heart issues, I am afraid to bring him on the 5 hour plane ride. I don’t know how his heart and body would handle the high elevation. But, we’ll see.

By the way, I also turned 29 over the weekend. This is my last year as a young twenty something before I turn the dreaded 3-0. Blah! Why do I have such anxiety over this? Anyway, this trip was in a way a present from Loi to celebrate this very important year for me…as a twenty something…for the last time! Man, I have issues.

Full Confession: I am a mother of two kids, and the wife of a wonderful husband. I will always see myself as a mother and wife first. But, when I stepped out on my own in my 5 inch heels, and makeup all done up, I realized a glimmer of myself that I hadn’t seen for a long time…and, I liked it!

Thank you, hubby for loving me, and working so hard for me and us.

Now, back to your regular scheduled Mommy…

Congenital Heart Defect Week is February 7-14. For all those in the CHD club, including heart parents, we know what this week is all about–spreading awareness about the prominence of this disease in our community, and how we can help to make changes to bring light to this chronic disease for the purpose of research and legislation.

Fact #1: CHD’s are the #1 birth defect in America. It affects about 1% of newborns — over 40,000 babies are born with heart defects in the United States every year. Each day 10,830 babies are born in the U.S.; 411 of them have a birth defect — of those, 87 will be born with a congenital heart defect — that’s more than cerebral palsy (27), sickle cell disease (27), Down Syndrome (12), and oral/facial clefts (11) combined (total of 77). (According to the March of Dimes)

While over a hundred CHD survivors and their supporters congregate in Washington DC to help pass legislation, and many more organize and attend parties and fundraisers, I voice my efforts by sitting here on my computer at 4:30AM telling you a bit of our story.

Our story. Yes, CHDs is mostly about Justin in our family. But, CHDs also affect myself, Loi, and his older brother, Nathan. The guilt I carry, as a mother, is undeniable. It comes in passing waves, but, there is always that wonder of how did it happen? What could I have done to prevent it? How come I never learned about heart defects during my prenatal appointments and in my pregnancy books? Yet, I am tested for risk of Down Syndrome in my baby? Shouldn’t heart defects be #1 on the list since it is the #1 birth defect? If I decide to have another child, what are his chances of developing CHD?

Fact #2: Research on CHDs are underfunded. For every dollar provided by the National Institute of Health (NIH), only one penny is provided for pediatric research. Only a portion of that penny goes to support research on CHDs, the most common birth defect (according to the Children’s Heart Foundation).

We need more research to answer these questions, to learn the why, to improve the outcomes of surgery, to improve surgery/intervention techniques, to learn how heart medications (usually given to adults) affect children, to prolong their lives, to give them quality lives, to prevent CHDs.

Fact #3: CHD’s are the leading cause of defect related infant deaths. Not Sudden Infant Death Syndrome (SIDS).

Doctors need to be more educated about CHDs, and know the symptoms so that the children can be treated before it is too late. Newborns who have murmurs should have a pulse/oximeter reading before being sent home to test the oxygen level in their blood.

Fact #4: There are a shortage of donor organs and blood. Only about 30% of the children who need a heart transplant receive one in time . About 40,000 units of blood are used everyday, yet only about 5% of the adults, who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States — that someone is often one of our heart children (Congenital Heart Defects.com).

CHD children like Justin who have single ventricle anatomy must look to heart transplants as their last resort–but, that whether or not they’ll need one is unquestionable. From an optimistic viewpoint, his own heart could last him up to 15 years. Every time he goes into surgery and goes on the heart lung bypass machine, he needs donor blood.

Fact #5: CHD afflicted children and adults are not recognized as chronically ill people in the US. Over 175 CHD Survivors, their family members, and their cardiologists were brought together by the National Congenital Heart Coalition (NCHC), members of seven different CHD support groups united to to promote the Congenital Heart Futures Act, a new law that, if passed, would establish permanent federal funding for CHD research. It would also mandate that Congenital Heart Disease is a chronic Illness requiring lifelong care (www.learnaboutchd.blogspot.com).

Without recognition as a chronic illness, it is difficult for CHD patients to receive the care they need, especially when they don’t have insurance. With CHDs come a myriad of other potential problems. Justin currently sees 8 different specialists (including his heart surgeon), and receives physical and occupational therapy. It is likely that he’ll receive speech therapy as well.

I hope I have made it clear that CHDs are a serious problem that lacks awareness in our community. I will keep writing in my blog. I will keep talking about CHDs.

Ways you can help:

-make a donation to the Children’s Heart Foundation where 100% of donations are contributed to research about CHD.

-make a donation to the March of Dimes where  a portion will go towards research on the genetic link of CHD

-if someone is pregnant, tell them to talk to their pediatrician about congenital heart disease, and the signs and symptoms to look out for in their baby. Better yet, tell them to ask the hospital to check the baby’s SATs. A poke to check for bilirubin levels is more difficult, I think.

-mention that you know someone with CHD if the topic of birth defects come up (Justin, for one). You’ll be surprised how many people you know will know of someone, too. This will help heighten the awareness that CHDs are more common than we think.

-donate your blood.

-become an organ donor.

Thank you all for your support. We would not have been able to make it through without you.

Here is a glimpse of how far Justin has come thanks to the research and advancement in cardiothoracic surgery and medical care:

Justin before first Open Heart Surgery. See? No line.

8/18/07. 1 Day after first Open Heart Surgery (10 days old)

1/18/08. One day after Second Open Hear Surgery. (5 months, 10 days old)

2009. A wise, happy little boy.

Justin is really small. I mean reeeaaaal small for his age. He’s eighteen months, and I feel like he’s been a baby forever. And, no, I’m not just saying that because I see him everyday. Loi and I measure him (length and weight wise) often.

He hasn’t grown spectacularly well. His weight fluctuates up and down. He is now at a constant 18 pounds. As for his height? He’s about 29 inches. He’s a full head shorter than other kids his age. He is not on the charts for weight or height, as in he’s below the 5th percentile.

I wouldn’t worry so much about this if he were following his “own” curve, growing at his own pace. But, for a couple of times, he fell off his own curve, and this got me worrying.

Through the medical and personal accounts that I’ve read, CHD patients are expected to be smaller for their age. Through my experience, now I see why. CHD patients don’t normally eat that well because they often tire before eating enough. They’re gastro-intestinal system is not as efficient in absorbing food and distributing the nutrients and calories because they’re heart isn’t beating at its optimal. The calories that do get absorbed are mostly allocated to the functioning of the heart (which works harder than a normal heart), or the brain. So, with the little calories that they do consume, the majority goes to their heart or brain, leaving little else for the development of other parts of they’re body.

So, Justin’s small-ness can be attributed to nutrition, or the lack of.

What makes me wonder if it’s just Justin’s diet that is causing his inability to thrive is this: when I read about other CHD children, or ask their parents about their development, I find that although the children are small, they’re still within the normal curve. Justin is waaay below it.

Let me also point out that Loi and I are not particularly tall people. I’m at a borderline 5′0, and Loi is 5′7. With this observation, doctors are also quick to point out that Justin’s size may have to do with his parents’ petiteness.

Ok, fine. But, he’s NOT really growing.

This leaves me to wonder, with the inside of his body as messed up as it is (stomach on the wrong side, malrotated intestines, no spleen, hanging pancreas, large liver), not to mention his heart defects, I wonder what other systems in his body are affected, too. Most particularly, his endocrine system. As complex as the human body is, where every system works in accordance with the others, I wonder, how his heterotaxy affects his endocrine system.

I can’t find information anywhere about this. I’ve asked this question on the online support group board. These children vary in sizes and complexity, so it’s hard to compare.

My next resort, after speaking to his cardiologist and pediatrician, of course, would have to be testing. As in, poking and blood drawing. This is another can of worms I must think before opening.

Justin is happy. Should I just leave well enough alone?

The weather forecast called for clouds and rain. When I looked out the window this morning, it was bright and sunny. Perfect day for wearing a dress, I thought. I love dresses because it makes me feel put together even when I’m not. It says, hmmm, cute. Not, oh, she’s a frazzled mom who needs a shower.

I had spent the morning preparing these yummy Rachel Ray inspired chicken sausage patties to be eaten with rice or hawaiian rolls. I washed the remainder of the dishes from 2 days ago, loaded it into the dishwasher. I made Justin a banana smoothie for breakfast that he ate (yes!).

Physical therapy was canceled, again, today because Justin’s PT was just recovering from a respiratory thing. We erred on the safe side, and decided to reschedule for next week. So, our morning was more free than usual.

We did the OT thing, though. He had just been re-evaluated as required by California Children’s Services (CCS) to see where he is developmentally, whether he’s reached his goals, and what new goals are to be made for him. It seems he has sensory loss in his right hand/arm (result of stroke), which makes it difficult for him to realize to use it–he cannot feel that he has that part of his body there. He cannot flex his wrist upward, or turn his arm into supine position. He does have some control of his shoulder and elbow which enables him to voluntarily bring his arms up and down, and side to side. With those motor functions, he can help dress/undress himself, knock over blocks, spin a big wheel. He can also bear weight through his shoulders while on his belly, on all fours (assisted), and side sitting. Being able to bear weight through his shoulders also enables him to combat crawl forward and sideways (although, he still prefers to roll).

Here are some other things Justin can do:

Stand unassisted for a good 1 minute. The blue thing on his hand is a splint to help keep his hand open from a tight fisted position.

Enjoy a bottle with his brother (unassisted, but only sometimes). He’s learned to compensate.

We’ve had him for a year post bi-directional Glenn. Now, the Fontan (the third of the palliative surgeries) are in the forefront of our minds. Thoughts of how another open heart surgery will affect him are prominent and persistent. I wonder, “What if he has another —?” Then, all our hard work in the past year will mean nothing?

As unhealthy as it may seem, I will not stop thinking these thoughts. With these thoughts come questions that I hope will help me find some answers.

When I think and plan for the worse, it also helps me appreciate the here and now. Justin is here, and he smiles, and he knows his Mama. He loves his Mama, in fact. He fights with his brother for toys. He grunts when he doesn’t get his way. He whines when he wants to be carried. He follows instructions, mimics, and is always the life of the party.

Yes, I push my child in his therapy exercises and massages, everyday. And, heck, it can get exhausting when all I want to do is play with him, and let him play in peace. In the middle of it all, though, we cuddle and laugh, and let go of the heavy burdens he’s been born with in this life.

Like today, we had a ho hum day of nothingness.

When I was skeptical of the rain, I had made plans to take the boys to Woodbridge Lake, closeby Nathan’s school, for a delightful lunch with the ducks, swans, and midges. I had even packed some soon-to-be expired hot dog buns.

By the time we had gotten out of the school doors, the sunshine had gone away, and clouds had started to blanket the sky in a soft grey.

We headed to my mom’s house (Ba, to the kids), instead, to hang out. My sister was home. We watched a bit of “10 Years Younger” on TLC and each took a shot at how old the lady was before they started her transformation.

Nathan played with a broken eucalayle from his room (my old room). Justin watched his brother in awe. They slept. We ate. Just one of those ho hum days.

In the evening, I headed out to Nathan’s school for a Parent’s Education Night about Mathematics in the Montessori program. Very impressive. It was a 1 hour instruction on how toddlers and primary schoolers learn the foundation of algebra (addition, subtraction, mulitplication, division), and the idea of carrying and exchange using the Montessori tools. Nathan is definitely staying in this program.

I also asked the academic director about Justin, and when she felt it was appropriate for him to start the Montessori program, given his delayed development. She said she’d at least like for him to have his gross motor skills so that he would be upright and walking. This is for his own safety as the other toddlers will be wearing shoes and bringing in a lot of germs on the ground. Always good to know.

Hope you all are doing well. Thank you for checking in.

I fell asleep on the leather couch last night.

I heard Nathan greet me with, “Good Morning, Mommy!,” from his room after having brushed his teeth, and gotten dressed.

Loi quickly shushes him, and tells him, “Mommy is sleeping.”

“It’s, OK,” he replies. “Good Morning, Mommy!” Then, he ran to my side and *hug*.
Awwww.

Then, he had a breakfast of Kashi Golden Honey Cereal and milk as he watched a Bob the Builder DVD.

It was time to go, so he had Loi pause it for him until he comes home from school…which would be 4 hours later. He packed the remainder of his cereal in a plastic zip lock bag To Go.

Loi and he were talking about cars and racetracks, and somehow managed to leave without giving me a goodbye hug :(.

I finally woke up. I mean, really woke up and got ready for the day.

This meant: cooking their lunches.

Just as the water began to boil, I hear a curt, croaky eh. Was that Justin?, I wondered.

Poured the seashell pasta into the pot, returned to cleaning I think a dish, then decided against it.

If that croaky eh was Justin, I want to be there to greet him morning.

I tiptoed across the living room and down the 6 foot hallway to our bedroom door.

Through the crack I found Justin in his crib turned toddler bed (sort of), on his belly, rubbing his eyes against his left forearm.

He lifted his head. Turned left towards the wall, then right towards Mommy’s bed, then blink, blink, blink.

*Smile* and a {heh heh} came from his sweet little mouth because he saw his Mommy.

“Good Morning to you,

Good Morning to you,

Good Morning dear Justin,

Good Morning to you.”

I sang to him our morning song.

What does he do, but roll. He loves to roll. Oh yeah, and kicked the side of his crib a couple of times because that’s what he finds amusing.

I scooped him up, gave him big hugs and kisses, then we walked and talked to the kitchen. My little helper signed “hot” when he saw the steam rising from the pot of seashell pastas. He even reached for the pot wanting to stir. I gently held his left wrist and allowed his hand to catch the steam instead.

He gave me a know-it-all smile in return, like he was happy he had gotten his way. Little do you know, child…

It was time for breakfast!

Into the high chair my little Justin went so that I could finish cooking the cheesy seashells, stir fried green bean, and packing the rest of lunch (fresh snap peas and carrots, juice boxes, utensils, bowls, bottles, sippy cups, hawaiian rolls, and napkins). Mommy had a special day planned for my little ones.

Justin nibbled on 10 olive oil seasoned seashells and I continued to cook and talk.

He pouted.

I gave him a boxed juiced because it was something he could manage without much assistance (he cannot hold his own bottle, due to a combination of the weight of the bottle/sippy cup and his lack of control of his right hand/arm).

He had been working on the drinking from the straw thing on and off for about a month, now. Today, he got it!

Physical therapy was canceled today because his therapist has some respiratory thing. But, we headed out for occupational therapy where my little JT showed off his straw drinking skills. Can you say, Proud Mama?We headed to the school to pick up Nathan. While waiting for Nathan’s dismissal, we, I mean I, chatted with the school’s administrator about Justin, her son, their heart issues, and our/their experiences with it. Her son is 18, born with Tetrology of Fallot. He’s studying radiology. Hope, I see hope.Finally, the door to Room 1 slowly opened. Somewhere in that line of kids, I knew, was Nathan. But, where was he?”Mommy!,” he bursted like a ray of sunshine on a gloomy day. A big hug, then he showed me his booklet about the anatomy of a plant. He made it himself, you know. Say, Proud Mama, again.Austin, his BFF from class, was there. His Mommy asked us if we wanted to join them at the park for lunch and short play date.Sure! Of course! Anything for my son to have some interaction with other boys his age!We had plans, but this was even better. Way better.This may sound bad, but Nathan doesn’t usually have interaction with other boys his age. Whenever we go to the park, the kids are either much older or younger, or girls. There’s nothing wrong with that, it’s just nice to see him interact with another kid who is at the same pace as he is…who thinks on the same wavelength as he does.They had burrrrping contests while eating lunch. It does not get more boy than that. And, what the heck? I don’t get it.

The ran, climbed, swung on the swings, slid down the slide, chased each other breathless.

A giant lawn mower drove through the grassy field, and they stopped in fascination. Boys.

I met another mom. Her one year old daughter has a congenital heart defect, too. She was diagnosed immediately after birth with an echo, as a result of respiratory distress. Her daughter possibly has a “small hole in her heart,” that I assume to be ASD? Since birth, she hasn’t been followed by cardiology because her mom has been skeptical of medical professionals and their sometimes misdiagnoses. I told her if she wanted a referral to a cardiologist, I’d be more than willing to help her. I told her an echo doesn’t physically hurt (although uncomfortable) if she’s willing to have her daughter have one. Before leaving, she asked me for the name of the office, my name, and Justin’s name. I hope she calls.

It was time to go home! Nathan had an infant stim appointment at home in 3 hours, and both the boys needed their rest!

Nathan watch the continuation of his Bob the Builder DVD where he had left off, as I attempted to put Justin to sleep.

Today was not a sleep day! After finishing his DVD, Nathan decided to play…and, out came the toys. Justin was just a squirmy wormy and wanted to be carried, and finally dozed off after a bout of rolling, grabbing Mommy’s hair, and laughing hysterically.

45 minutes later, Ms. Mei, the infant stim teacher, arrives.

“Sorry, Justin, I know you’re tired. But, your teacher is here, ” I whispered into his sweet ear. Rythmic breathing contiues.

“Justiiiin,” I crooned.

He squirmy wormy-ed and rubbed his eyes. A cry was about to escape his lips when I swooped him up onto my shoulder. He looked around, realized he was still in the bedroom, and went back to sleep on my shoulder.

I carried him to his alphabet play mat/area. Over my shoulder, I could see he was confused, opening and closing his eyes–not quite sure if he should go back to sleep or wake up to play.

So, tired! But, in true Justin style, he greeted his teacher with a smile, nonetheless, as she sang the “Hello” song to him.

Out came the toys from Ms. Mei’s bag of goodies. Then, came Nathan wanting to show off his hand eye coordination skills by playing with the toy meant for Justin.

Backup: Diane, my sister came. She kept Nathan entertained and took him to the toilet so that Justin could have his therapy session in peace.

The therapist notes that considering Justin’s medical history and health, she’s amazed by his cognitive skills and how active he is. I asked her for her assessment. She told me he does age appropriate activities, but his language seems to be slightly delayed as he should know about 10 words (verbal or by sign language) by now. His gross motor skills are obviously delayed (no crawling on all fours, cruising, or walking).

What he can do: sign hot and all done, say dadadada, bababababa, ma (for more), shake his head for no, and nod for yes, wave hi/bye, show that he’s one, combat crawl, sit, assisted standing, and taking steps.

It’s alright. One day at a time, and keep moving forward. Progress. I’m so proud of my little Wumpkin.

One hour was up!

We treated ourselves and Auntie Diane to a short walk and happy hour at Zovs. Yum!

Nathan all geared up to go!

Justin was being loud, so Auntie Diane put her index finger to her lips and shushed. Justin copied. Then, tossed his head back in laughter. Too awesome.

We ordered chicken sloppy joes, rice fritatas, shoestring fries, and chicken kababs.

Nathan is more of an adventurous eater, now. This means, he’s willing to try a new food item at least once before dismissing it. He’s retained the lesson we’ve taught him: “You need to try it before you say you don’t like it.” Simple.

He tried the chicken of the sloppy joe and started panting.

“It’s sour,” he said through squinty eyes.

Nathan complained of an “owie tummy” for much of the meal (which I believed), but it healed in time for frozen yogurt.

Auntie Diane needed to head back to school so there was no time for eating in the store. Nathan was pushed by Auntie Diane in the little red buggy that Justin came in (so that he could enjoy his little treat), while I carried Justin in one arm, and Nathan’s scooter in the other. Man, did those deltoids burn.

Justin helped Mama out with a little scooting on the scooter. He balanced with one foot, and held the bar with his left hand, while I pressed his right hand against the bar.

Thirty minutes after we got home, Papa came home. He had our leftovers…there was lots of it, and yummy, too!

Time for bed time routine. Justin bath, chase Nathan around for bath, Nathan takes bath, Justin plays with Papa, Papa reads to boys, then….

Nathan and Mommy head to Ong Ba (Grandpa, Grandma) house…at 8:45PM…because Nathan wants to build his race track with Ong…second night in a row….only to break it down, again.

9:30PM…we headed back, Nathan brushes his teeth, and Papa put him to sleep.

Mommy picked up a few pillows, tidied up the living room that was littered with legos, cars, and other.

I walked into our bedroom to gather the laundry (that Nathan had scattered to the ground) needed to be folded, but was distracted by the sleeping Justin.

Couldn’t resist…walked over to kiss the inside of his sweet wrist…then, his cheek…once, twice. I was tempted to stay there as I was, with my forehead pressed against his, gazing at his sweet face, and listening (sweet joy!) to his rhythmic breathing. Kissed his cheek a third time, and told him that I loved him.

Had to peel myself away from the room because there is still so much cleaning to do.

Such sweet moments happened throughout the day. I just want to savor it for as long as I can.

Justin’s Auntie Tran, Uncle Ken, and cousin Amber were heading to the Hsi Lai Temple, today in Hacienda Heights, and invited us to come along. Although we had an appointment with Justin’s infant stim teacher, Mei, today, I called to reschedule as this was an opportunity I wanted the boys to experience. It would be unlikely that I’d drive them out there by myself on a weekday as it is about 1 hour away from where we live.

I’ve only visited the Temple once before today. This would be the boys’ first visit.

The winding road leading up to the majestic Temple on a hill were lined with round lanterns in celebration of the Chinese Lunar New Year. The kids finally took there hypnotized eyes off of the TV to admire the inviting red and gold colors. This was only a taste of what was to come.

We rode the elevator to the second floor where the main courtyard was. This was where all our senses were enticed by so much of the Chinese culture. I loved it! I had never seen the temple decorated for Chinese New Year before.

The display represents the year of the Ox bringing prosperity to the New Year. (R-L: Nathan, Uncle Ken, Cousin Amber)My favorite feature of the New Year decor is the “Make-a-Wish Tree”.

The “foilage” of this tree was entirely composed of red ribbons of wishes.

After burning incense and praying for a prosperous New Year, we offered monetary donations for the Temple in exchange for red ribbons of wishes. There were 7 wishes we could choose from. The most popular, “For everything to go perfectly for you,” was sold out. We chose some others pertaining to health, wisdom, and good fortune for myself, Auntie Tran, Uncle Ken, and the three kids–it was 2 for $5. What a deal right?
There was no textual nor verbal explanation on how or why wishing on the “Make-a-Wish Tree” will bring us good fortune. Whether your wish will come true or not is dependent on your faith as you release your inner most desires to the universe to hear. Like in literature such as “The Secret” describes, this act of wishing is condoning the idea that if you let positive energy into the universe, you will receive positive energy back. In essence, you have a way of willing something to life.I’m a born and raised, practicing Catholic. While burning incense and wishing may seem contrary to my beliefs, it is not. I burn incense and pray out of respect for our Chinese ancestors, but still believe there is only one God. I wish, but still have faith in my Lord to execute all that he has planned for us. I wish just like I pray–to my Lord, in hopes that he’ll hear and answer my prayers.

It is Faith that I base my actions on. It is Faith that has given me the ability to move on when my world seems to be crashing down.

It is in those moments that I am most vulnerable that I appear most strong because I have Faith that carries me.

The Make-a-Wish Tree was as beautiful as it is inspiring. Now, I don’t feel so bad for playing hooky ;).

Here are some other images of our visit to the Temple:

Walking down the corridor to the Wishing Pond.

Nathan at the Wishing Pond after having thrown 3 coins into it.

Justin and Mommy in front of the Main Shrine (this is the best picture we got).

When I first started this blog, I could not find enough updated blogs out there that allowed me insight into the everyday lives of families that had children with congenital heart disease (CHD). This was 2007.

Part of the reason, I think, was because I did not search for “congenital heart disease blogs”, but for the particular condition that my son had, heterotaxy. I found only two blogs, Oliva’s and Riley’s. Both of these children have almost the same diagnosis at Justin’s. (Since then, I’ve found several more listed under the blogroll “Heterotaxy”.

Through these blogs, I found hope and fear. I found that yes, there was hope for Justin to live. I also found fear in seeing all that my child would have to suffer. These blogs updated little on the every day life, and I wanted to know more. I wanted to know how these children lived their lives, the worries their parents had, and how they coped with it.

The few other blogs I came across where just painstakingly sad. Many passed away. The websites/blogs went something like this: surgery was successful. no updates because he/she has been doing great. he/she passed away unexpectedly.

I left these sites wanting more. Yes, the child passed away, and this was sad. But, how was his or her life when she was alive? What greatness did he or she experience? How much did he or she love life? Did they play sports? And, how come these parents were able to feel so…at peace in spite of losing their child? How did they cope?

So, when Loi started this blog for me, I decided that I would show every face of our journey…uninhibited. I’d be truthful in my experience, and what I saw. I’d record my child’s happiness and his struggles. I hope that maybe I’d be able to help others (who do not have children with CHD) understand what it is like to.

Along the way, I lost momentum. Suddenly, I wanted our privacy back. I became afraid my voice, and what harm it could bring. (I’ve mentioned my fear of saying good things in fear of bad things happening).

As I fell off the face of the blogosphere, I started getting questions about Justin, and people telling me they check in every day to see how he’s doing.

Then, I realized, there are people rooting for Justin! And, I needed to keep this spirit alive. Reason #1 for keeping this blog alive.

It was not until after Justin’s first surgery did I start to search for “congenital heart defects blogs”. Finding one, Jillian Sommer’s, led me to a world of others. It is in this world that I find the inspiration to be a more dedicated person to not only my children and husband, but to the blogosphere and the cause.

There are days when I don’t want to try anything beyond the basics of living day to day. Then, I read about how Andrea is able to manage 2 children, one, Drew, with heart defects and immune issues, while co-heading the Sacramento’s Chapter of Hearts of Hope, visiting heart families in the hospital, and training for a marathon, among countless other things.

Or, about Megan, and how she’s able to balance work and caring for her Elijah with heart defects and respiratory issues.

Or, about Shannon, and her endless ideas of advocating for her Wren, and entertaining him at the same time with a different adventure or project every day.

Or, about Kim, and how she balances a freelance career, 2 girls, one, Sadie, who has heart defects, a Monstessori school on her residential property, and a recent bout of the H flu that landed her husband disillusioned in the hospital.

Check these blogs out. These people are…Well, I don’t know how they do it.

Striving to give back to the world what these women have given me: Reason #2 for keeping this blog alive.

Here’s to a new year with a new leaf. I hope you all enjoy. Thank you for checking in.