Home of the Four Trans

Perhaps the most talked about issue after Justin’s heart surgery is the prominence of his scar left by the long chest incision from close to his neck to the middle of his abdomen. As various nurses and doctors continued to check his chest regularly after the surgery, they commented on how “well” his scar has healed, and assured me that as he gets older, it will become so faint that I won’t even notice it. “Kids recover so well, you’d be surprised,” one nurse had told me. His pediatrician, at another visit, confirmed that while the scar looks to consume his entire body now, it’ll seem so much smaller as his body gets bigger. I am often given this information without even having to ask for it, as if every medical professional assumed that this is one of my greatest concerns…how close to flawless my son’s skin will look as he gets older. And, seeing how we live in this superficial world where physical perfection equates success and acceptance, I have to admit that it WAS one of my greatest concerns…that is, BEFORE I gave birth to my dear Justin. I can say that when hardship presents itself, perspectives on life can truly change.

Everlasting

As you all have followed us through this past 2 months have come to see, Justin’s life and existence has become the forefront of our lives. To find a balance in our family with his coming has been quite a challenge for not only us, as parents, but also for our firstborn, Nathan, great-grandparents, grandparents, aunts and uncles, cousins and friends. We’ve all put a hold in our lives at some point where all we could do was hope and pray that he’d make another moment or another day. We’ve all tried to make some sense in all that is happening to this little one…we’ve tried to make sense of our own lives with Justin in it. Although the physical changes we made are not much different than any other family welcoming a new child to the world, with Loi and me leaving our independence and newfound home to move back in with family for more help, or with Nathan having to sacrifice his time with Mommy and Daddy so that Justin could get the attention he needs, the emotional distress that we’ve all undergone is the most scarring. I say this with mostly Nathan on my mind. We left him for almost an entire month, returned to him with a new little person in our lives, and basically since then have not more than 30 minutes at a time with him. Sometimes, Loi and I are so tired from sleep deprivation and the stress from the rest of our lives that we cannot even think clearly enough on how to deal with him when he screams at the top of his lungs in the middle of the night, obviously as a cry for attention, and out of frustration for the immense change in his world, yet not fully understanding why. As a result, I get angry at myself for letting it get to this point where he doesn’t feel loved. At the same time, I feel like such a failure and great sadness for having “abandoned” my firstborn, my first love, in so many ways. They both need me now, but I am lost on how to split my time and energy. I can see how all the events that have taken place can create some damage on his vulnerable developing ego. And, we’ve tried so hard in the last 2 years to develop strong self esteem, respect, and independence. At this point, I don’t know to blame the terrible twos, or our actions for the little monster that he’s become. Either way, we’re working to create some sort of normal for him among all this chaos in his world. So, you see, Nathan has some wounds also. And, the healing must soon begin. But, as a result, he will also be left with a lifelong scar. Though not visible to the skin, it exists nonetheless.

As for Justin, for all those who are wondering if his scar will ever “disappear”, his scar is everlasting. Although Loi hopes that one day there will be some medical technology that can erase the appearance of the scar, the truth of the matter is, what is done can never be erased, only forgotten. Whether or not Justin’s scar is visible does not deny the fact that he has a heart condition, that he’s been through surgery, and that his life is defined by his anatomy. So, in some ways, I want him to always have his scar to constantly remind him of who he is, and what he’s to become. I want him to look in the mirror, see that long line and acknowledge that yes, he has a weakness, and yes he will have many obstacles to overcome because of it. But, as I will constantly remind him, he WILL overcome, and he WILL succeed. I believe that it is not until one can fully see his or her weakness that he or she can become stronger from it by challenging it. I don’t want Justin to forget that he has a heart condition because it is this that makes him so unique, and beautiful, and inspiring. It is his heart condition that will make him appreciate each day of his waking life. I want him to look at his line and remember to take good care of himself through good eating and exercise, and to remind him to take his medications and keep his doctor’s appointments. I don’t want him to pretend the problem will just go away. At the same time, his scar will remind the rest of us the preciousness of his life. Whenever I see it, it invokes feelings of fear inside me. I am reminded if he’ll qualify for a heart transplant if and when he needs one later in life, that one day I may wake up and not see his beautiful eyes, that the medications may have some adverse effects on him, that my mortal life is not eternal and I won’t be able to take care of him forever. Believe me, there are days that I want to play pretend too so that I don’t have to realize the fears deep inside of me that could very well come true. But, the scar puts everything back into perspective that life is sacred, and I must remember to cherish each moment of it.

The other issue that comes to surface about Justin’s scar is whether he’ll ever find a mate who will be accepting of it. My belief is yes. And, through stories that we’ve read, one where a man with Hypoplastic Left Heart Syndrome has gotten married, shows that the world is not as superficial as we may perceive it to be. While hearing someone question whether a girl will like him because of his scar leaves me with a tinge of resentment, it also invokes feelings of hope. I am hopeful because I hear talk of the future, that one day my son will be a grown man, and finding a mate for him will be of issue.

So, my sons will be proof that what doesn’t kill us can only make us stronger. As I once read from the writings of a wise soul who has a child with special needs, what would we be teaching our children about compassion if we chose the “easy” way out. Though trying times may be for Nathan at this time in his life, I have hope that he will rise above and become the man we’ve always dreamed he would be. In the meanwhile, any suggestion from those parents out there would be helpful

I close this with saying that this is a lifelong battle for us, and all we can do is take it one day at a time…

Justin went to see Dr. Alyse Baron, his pediatrician, on Thursday, 9/20/07. He weighed at 7lbs 10oz, 5 oz more than the last time she saw him on Monday, 9/17/07. Although this places him only in the fifth percentile for his weight, this is great progress considering he wasn’t eating for the first 3 weeks of life. His head circumference is 14″ and his length measures at 20.75″. So, he’s little for his age, but making progress. He seems to have hit the major milestones with knowing how to follow objects when placed in front of him, responding to voices by turning his head to look for it, smiling, and grabbing things. The only thing he’s not doing a lot of is cooing. We heard him say “ah” two times 2 nights ago when Loi was reading him a book, though. We are also starting tummy time with him to strengthen his neck and arm muscles.
He definitely is a growing boy with a growing appetite. He wakes about every 1-2 hours looking for food. So, between the feeding, burping, pumping, and bottle washing, I have barely time for anything else. By the time I put him down, it’s feeding time again! So, it can be exhausting…for both me and Justin!

Nathan wants Mommy for everything now seeing that I spend so much time with Justin. I try to be involved in giving him his baths, playing with him between Justin’s naps, and getting him ready in the morning. But, I know it’s not enough for him…he’s craving for my full undivided attention. I hope that in a few more months, when Justin gets stronger and can join us in playtime, both of them can have Mommy time together

So, life does go on, and the new norm is slowly forming. We’re all adjusting to having the new little bundle of joy in our lives. Everyday I wake up and wonder how I am to pass the day with just me and Justin all alone, trapped inside our little home. Well, time sure flies between all the feedings and playing. But, I can’t wait to be out and about again. His pediatrician gave us the OK to take him out, but to avoid strangers and crowded places, especially with the cold season coming along. I think I’ll take him for a walk one of these days. I’m still not brave enough to take him anywhere else.

Checkout the full album.

Nathan has adapted to the role of Big Brother very well after being the baby boy of the house himself for the past 2 years. Although there have been a few occasions when he asked Pee Wee to “go away” so that he could spend more time with BOTH Mommy and Papa, for the most part, Nathan has been very loving and generous towards Justin.

A Few Thoughtful Gestures

Nathan offered to wash Justin’s bottles while he stood on his little stepping stool. He used a sponge and everything!

He brings toys to Justin and pretty much forces his way through Loi and me to give it Justin. He is not satisfied unless it is he to who is placing that item on Justin.

This morning, he gave Justin a big hug by placing his head on Justin’s abdomen. This was funny to see because his head was as big as Justin’s entire body!

He offered to bring milk to Justin while he was crying.

He always wants to kiss and touch Justin’s little feet.

My Baby All Grown Up

I look at Nathan and I wonder, “How did he grow up so fast?” I am amazed everyday by how smart he is. He learns everything so incredibly quickly. He now knows his entire alphabet, numbers up to 30, and is attempting to actually count things. He can pretty much speak full sentences in English, and he’ll speak Vietnamese here and there. His Grandparents are trying to teach him how to count in Trieu Chau, a Chinese dialect, and he’s picked that up also. Loi and I never can figure out how we got so blessed to have two such amazingly inspiring boys. They only make us want to be better people.

Nathan Coping

With Loi and I gone for the past month, in and out of the hospital, we barely had time for our precious firstborn. It pained me to have to leave him, and not be able to take care of him and play with him the way I used to. I now have to split my time between 2 children, with the majority of my time with Justin because he’s so little and cannot do anything for himself yet. Nathan has been pretty independent and plays on his own or with his cousins most of the day. When he sees me take care of Justin, he does not cling to me. He’ll more likely offer to help with getting something for his baby brother.

First Week HOME

After weeks in the hospital, our first week home with Justin had been truly blissful. Taking care of him was like taking care of any other child, without as much anxiety as I thought I would have. He sleeps most of the day, waking up exactly every 1.5-2 hours for his feed. He spends most of his day being held by Mommy, watching his jungle mobile go round, observing his surroundings, and listening to his Mommy sing to him. He acts as if nothing has ever happened to him. He’s a happy little baby happy to be home without all the “bells and whistles” of the monitoring and IV machines. All we do all day is gaze into his large, brown eyes while he’s awake, or at his peaceful face while he’s sleeping. Looking at his beautiful face never gets boring. Loi actually got to go back to work for a couple days! So, I spent most of the days with Baby, while we shared night duty, taking turns between feeding Justin and comforting Nathan.

Justin’s One Month Birthday

If Justin had been well, we would have had a huge one month party for him to celebrate his first month of life. But, since there are so many restrictions with visitors and with the cold season just around the corner, we didn’t plan one. But his thoughtful grandma (Loi’s mom) planned a small one on Sunday, September 9, 2007, nonetheless with just the grandparents, parents, Nathan, and cousins to share with him. She ordered a small cake, a roasted pig, steamed chicken, and flour cake to offer as gifts to the deities to thank them for his first month of life and to ask for his health and prosperity. We finally got our first family picture together since Justin was born.

Correction of Bowel Malrotation (LADD Procedure)

The day following his First Month Birthday Party, Justin had to return to CHLA for a scheduled surgery to correct the malrotation of his intestines. Although Loi and I were both anxious about him returning to the surgery room so soon after his heart surgery, we agreed that it would be better to correct the problem in a controlled setting than wait until his bowels actually twisted on itself. Even if we decided to wait a few more months, we would be living with the uncertainty of when and if his bowels will twist. All his doctors and surgeons also were supportive of our decision.

His surgery was set for 10:45AM on Monday, September 10th, which allowed him to feed on breastmilk only until 6AM and Pedialyte until 8AM that morning. We arrived for our pre-op at 8:30AM and were informed that the first surgery was canceled so Justin would be in earlier than we had planned. We dressed him in a hospital gown, took some pictures (because he looked so incredibly cute), met with the surgeon, Dr. James Stein, one last time with our “last minute” questions, Justin was weighed and measured then had his saturation levels, heart rate, and blood pressure checked before we carried him to the second floor to prep him for surgery. As soon as we got up to the bed to wait for the anesthesiologist to meet with us to explain the sedation procedure, the nurses oo’d and ah’d over how adorable and beautiful he was. One nurse even took “dibs” to carry him into the OR. Justin definitely knew that he was back in the hospital, despite all the positive attention he was getting, and was looking everywhere with his eyes scrunched up, knowing something “bad” was going to happen. After we had gotten a full explanation of how Justin would be put to sleep (with a mask around his nose and mouth), Loi and I, once again, had to walk our little boy to the front of the double doors leading to the OR, passed him to complete strangers (we had only met them within the half hour), and said goodbye. Again, the stranger told us that they’d take good care of him, then carried him off. The operation lasted 1 full hour.

The surgeon, Dr. James Stein, explained to us after surgery that when he had opened Justin up, he found that not only were his intestines “accordianed”, but his pancreas and the portal vein connecting from the intestines to drain out blood were wrapped around the duodenum of the stomach. What this means is that in the future there may be some obstruction around that area when Justin starts to feed on solids, which may require another surgery to reroute his intestines. But, there is also a chance that this part of his anatomy will grow normally, and he may avoid the surgery all together. Dr. Stein also found that his gall bladder was scarred possibly from being unable to feed immediately after birth, which caused his bilirubin levels to increase (jaundice). The effect of this would be gall stones possibly in his teenage years. By this time, I’ve already learned to appreciate each day I have with him. The news did not distraught me too terribly, although I did have my usual million questions just so that I could be prepared for what could be ahead. I still cannot understand how his inside anatomy could be so “messed up”. Dr. Stein said that even for a heterotaxy baby (with heterotaxy affecting only .4% of the 3% of babies with congenital heart disease), his gastro-intestinal anatomy was rare.

For the first 2 days after surgery, he was irritated by an Oral Gastric (OG) tube down his throat used to drain the extra bile and blood from his stomach, and his inability to eat. It was difficult for us to see Justin crying and looking at us, back and forth, not understanding why we weren’t giving him food. The only ways we were able to soothe him were with a sugar water dipped pacifier, holding and singing to him. We even talked to him at times, trying to explain to him that we knew he was hungry, but that he needed his rest so that he could recover quicker. Although he’s only a month old, I think he understood because he would calm down and go to sleep after that.

The surgeons finally agreed to pull his tube out on the morning of September 12, third day of his recovery, and allowed him to start on Pedialyte and breastmilk by mouth. His first feed of the day was Pedialyte, with the subsequent feeds of breastmilk. He’s definitely gotten his appetite back quickly, finishing his 60cc (2 oz) within 5-7 minutes! He can finally rest now that he’s got a full tummy. I had gone home to Nathan the previous night, so I was not there to witness this brave warrior attack his first meal. But, when I returned that evening, Justin was sound asleep, not even waking up to the screeching cries of a three week old neighbor who had just undergone heart surgery. Justin was back to usual self…eating and sleeping.

Since the night went well, with Justin feeding sufficient amounts of breastmilk and NOT throwing up, the pediatric surgical team decided the following morning, September 13, that Justin would be allowed to go home that day. With Loi and I still traumatized from our first discharge from CHLA, we did not want to rush out the door this time. We still were sure to have all our discharge paperwork and prescriptions were in order, packed our things, but did not push Justin to eat. Well, we didn’t have to. He was so hungry, he ate all at his own will. But, at his last feed just as we were waiting to receive our discharge insturctions (last step before we’re out the door), Justin vomited. Yikes! Deja Vu! He also started getting congested and had green boogers in his nose. So, we called the Resident Pediatrician to look at him one more time to make sure that he’s safe enough to go home. The attending cardiologist also stopped by to see him. They said that it may be a bit of a cold, but the only way he could get better and not worse (with that developing into pneumonia) is by going home. So we packed little Justin up and hit the road…

Now that Justin has had his surgery, the surgeon warned us that like anyone who has ever had abdominal surgery, Justin is at risk for obstruction, meaning his GI tract may get clogged sometime down the line by food that he’s ingested. But the chances are 4%-6%. Most patients never need any type of intervention. Although these numbers are meant to ease my worry, it does not eliminate it. But, again, we can only live one day at a time.

Justin is an amazingly strong boy. All the nurses who have handled him have asked us to hold his arms, legs, or head as they attempted to remove or add something to his body. They were surprised by how strong he was, always pushing things away when he didn’t want it to get near him. The nurses could not even extend or lift his arm to place a thermometer under it. He didn’t even have any pain medication after the surgery aside for one dose of Tylenol. He was more in hunger than in pain.

Little Champ’s Quality of Life and Will to Live
Needless to say, Loi and I are very proud of our little Justin. He’s opened our eyes to so many things. And, though the challenges have been and will continue to be aplenty, we appreciate and look forward to every moment with our little champ. Some have wondered why we have put ourselves, Justin, and Nathan through all these obstacles and pain. Some questioned our decision. I have even had one person express to me that I should not speak of any of this to him when he gets older for fear of him resenting us and his life when he actually “understands”. I had often thought about this matter of “quality of life” prior to giving birth to Justin. As every mother wishes for her child, I wanted the best for him, I wanted him to be happy, I wanted him to have a full life. I did not understand how a child with such a complex heart condition and unique anatomy would be able to achieve all that I wanted for him. I thought that his life would be full of pain and misery. But, through much contemplation, observation, and growing as a person, I’ve realized that the quality of Justin’s life and how he perceives it is entirely dependent on Loi and me.

Yes, my baby was born with a birth defect. But, I want my baby to know that he is perfect because he has purpose and he has all the love around him. He WILL have a beautiful and happy life, despite the moments of pain, because he has people who love him and cherish him. He will not have to question why he’s here on this earth because we will tell him everyday that we love him, and his very being and presence has made us better people. As he grows, the realization of his purpose will grow, and his inspiration will spread. With purpose he’ll have the will to live. He’ll appreciate his life because we appreciate his life. We do not want him to be oblivious to or forget all that he’s been through because it is all that that defines him and his strength.

One day, after Justin gets his shots and the cold season passes (so in about 3-4 months), you will all get a chance to meet this special boy and see what all the fuss is about. He is so beautiful in so many ways. We have not for one millisecond regretted our decision. He truly is a gift.

So much has happened since the last time I posted an entry. There is so much to say, but I can steal only about half an hour at a time to myself in any given day, so I will give you all the gist of it. But, I must warn you…this is a long post. You may want to read it over several days

Recovery and Discharge

Since the last time I posted, I had been up at CHLA with Loi until Justin’s discharge day. Justin had learned to feed at such an amazingly quick pace that he was discharged after only 4 days on the recovery floor, while other children who had had the same surgery on the same day as he did were barely learning to latch on. We were so proud of him…and so excited to get out of that hospital! The hospital had prepared our discharge papers, prepared us with CPR training, and were just excited as we were to see us go. But, on the day of discharge, Justin started vomiting after his feeds. I had also informed the Nurse Practitioner that Justin seemed fussy at his feedings that morning, when normally he enjoyed it. She told me she couldn’t tell me why he was fussy, and that she’d follow up with me later in the afternoon to see how Justin was doing with his vomiting. As hesitant as I was to leave with a baby I knew wasn’t all well, Loi and I brushed off any insecurities that we had because we were so excited to get baby home to where he could recover in peace.

The ER

As it turns out, we ended up in the ER at CHOC that evening at 12:30AM after Justin vomited about 3 more times and was getting dehydrated. We were so certain that it was his acid reflux acting up. But, once we got there, the pediatrician had entirely new scenerios for us as to why Justin may be throwing up. Because he is a heterotaxy baby, with his intestines and stomach on the wrong side, and he had just had heart surgery, the pediatrician could not easily determine that the problem was acid reflux. It could very well be that he had accumulated fluid in his lungs or around his heart. It could also be that his intestines had re-rotated around itself, which would call for immediate surgical action to prevent devastating effects on his intestines. Or, there may be a blockage in his stomach where the sphincter was. I was just shocked at all this new information…information that should have been shared with his BEFORE we were discharged from CHLA. As stressed as we were that there could yet be MORE things wrong with Justin, we had to partake in more X-Rays, needle poking, and testing to see if any of the scenarios could be ruled out. Keep in mind that it was then 3 o’clock in the morning, and poor Justin was hungry and just wanted to rest. But, there was never a moment’s peace for him. We had to hold him outstretched on the X-Ray table, while he yelled and screamed, so that they could check to see if he had fluid in his lungs and heart. As soon as that was ruled out, they poked his heel to check his glucose level. Then, the pediatrician came in and suggested that we admit Justin to CHOC so that they could put him on an IV to treat his low blood sugar and dehydration while they monitored his feeding progress and do any other necessary testing. Just as Justin had an IV removed from CHLA that morning, he was getting another one put in. My baby was crying uncontrollably…and there was nothing that I could do for him. I was angry and upset that my baby was crying for help, crying for food, crying for comfort, and I couldn’t do anything for him. I was only contributing to all his pain and discomfort. He’s been through open heart surgery, had his sternum cracked open, and has had more x-rays, IVs, and tests performed on him in his first 2 weeks of life than I have ever had in my 27 years of life. And, you would think, what’s another needle? what’s another x-ray? But, a baby has only one form of communication, and that is crying. He was crying for me to stop the pain and discomfort, and I couldn’t. As a mother, my only instinct is to comfort him, but I couldn’t. He’s only a baby, and could not understand why his needs were not met. My heart ached so much that night, seeing him outstretched on the X-Ray table, having an IV put into his arm, getting his heel poked…all the while crying, screaming, and hungry and tired. So, I cried along with him…

Learning to Feed Again

The next 4 days were spent at CHOC as the GI specialist and pediatrians reviewed studies from CHLA to rule out the potential of Justin needing surgery for his malrotation. It turns out that it was just Justin’s acid reflux acting up, and the doctors prescribed him additional medication, Reglan, to help his food pass through his stomach quicker so that he does not spit it up. The medication helped, and Justin slowly regained his strength and endurance to feed again. The hospital discharged us after 2 days of feeding progress. We did not want to rush out the door this time, so we made sure that on the day of discharge, Justin was able to keep down his food before we left that evening. We’ve been home since August 3oth, and Justin has made great progress with his feedings, intaking more and more each time, almost reaching the ideal goal for his age.

More Surgery

As soon as we were admitted to CHOC, we called the team at CHLA to let them know that Justin was back in the hospital. His vomiting raised great concern because they were afraid that it could be his malrotation acting up. So, they set up an appointment for us to meet with the general pediatric surgeon, Dr. Stein, at CHLA for a consult as to how to deal with it. We met with him yesterday, and the recommendation is to have Justin undergo a laparoscopic procedure to determine if Justin’s intestines are actually malrotated. Because heterotaxy is not fully understood, and the upper GI exams do not fully show the anatomy of his intestines, the surgeon recommended that we have the procedure done, then if needed, he would perform the necessary procedures at that point. If not, then he would close Justin up. While in the past the surgeons felt that they could wait for the emergency situation to present itself, where the intestines have already rotated on itself, before performing the surgery, they now think that it is best to deal with the situation as soon as possible. So, we scheduled the surgery for this coming Monday. Word has it that Dr. Stein is one of the best surgeons as he gained his reputation from successfully separating conjoined twins. I don’t know how that would pertain to Justin’s condition… But, he had told us that he performs 10 of these cases a year, more than any other surgeon in LA and OC. With Justin being so small and just recovering from his last surgery, we are having doubts about him having this surgery, and are consulting with his cardiologist and pediatrician for additional opinions.

The Truth About Love

We continue to get so much support from our family and friends through their words of encouragement and reassurance, as well as practical help especially with helping take care of Nathan. We really couldn’t have gotten this far without any help at all.

Before we had Justin, we knew virtually nothing about children with special needs. We never realized how many of these children there are until we spent our time at the hospital. Up and down the hallways, room after room, floor after floor, were children with special needs. Before we had Justin, we wondered how these families coped with the obstacles and hardships to care for these children. And, after experiencing our time with Justin, and talking to some of the other families, I realized that families like us just deal with it. It all somehow becomes a normal way of life. And, somehow, the parents look past the “special needs” of the child, and just sees the child. We’ve realized through observing that while Justin’s condition is not ideal (to say the least), there are so many other children worse off than he. So, I can’t help but be grateful. I cannot deny that having a child like Justin, who has a heart condition and heterotaxy, and acid reflux, is very difficult, both emotionally and physically for us and for our family. But, there are children worse off than he, and I can only be thankful of what is for Justin, and to have the support that we do. I still have not accepted what is normal for us yet. I look at Justin, and while he looks “normal”, I am always aware that things can change at a blink of an eye. I don’t know when I’ll ever be at ease and think that everything’s going to be OK. I am amazed by how families who have gone through the second or third surgery with their child cope with the entire situation. When I speak to them, it is as if nothing has happened. We spoke to a family yesterday that has a 2 year old girl who has gone through the third surgery who told me that after the first surgery, the second and third are just “normal”, like you get used to it. There was no tinge of sadness or worry in their voices. It was as if their child was like any other child.

I met a mom at CHOC whose child had undergone 7 surgeries in he first year of life alone and with more to come. Yet, when she speaks to me, it is as if this is her life, and it’s normal, and it’s OK. When she saw me crying by Justin’s bedside as they drew blood from his arm and heel, she came over to me to tell me that everything’s going to be OK. She told me her child was in the ICU 5 months after she was born, and she was very depressed at that point. “But, look at her now”, she told me. “She’s big, huh?” She knew that at that moment, I felt hopeless and helpless. Though a stranger, she offered what I needed most…reassurance that everything was going to be OK. I told her he’s only a baby, he doesn’t know anything, and yet he has to endure so much pain. She knew this pain that I felt for my child as she had gone through it herself. She quietly walked away and cried. But, when she came back she told me, “See? You made me cry…But, everything will be OK. Look at my child, she’s OK”.

I looked at her child and wondered what OK meant. This child could not feed regularly but through a tube in her stomach, she could not walk because she was missing two bones in her spine, she could not release her bowel movements regularly, but through a bag on her stomach, she screamed whenever a nurse even looked at her…I mean, this girl had been through 7 surgeries, her veins have been abused with IVs and blood draws, and her mom tells me she’s OK. But, as I observed this mom with her child over the next several days, what may seem awkward and obscene to me, was normal to her. All she thought about was caring for her child, giving her kisses, and joking with her. She never saw the dread in having to care for her child. And, as she spoke to me of her child’s condition, it was in a matter-of-fact tone. She tells me taking care of her is like any of her other 3 children at home. Then, I realized, love really does conquer all. She had such unconditional love for her child that she did not even realize the hardship. At the same time, this child was given so much love that she was still flourishing and happy to be alive despite all that she’s been through. This is amazing.

I had lost hope in the human race. All I saw around me was greed, hatred, and selfishness. But, after spending time in the hospital and meeting these gracious parents, I regained hope. I saw that love and generosity still exists in our world today. With this revelation, I shed a tear. I am deeply saddened by the tribulations that these children must go through, being so young. But, my heart skips a beat when I think of all the love that they receive at the same time. This is not to say that I did not see children abandoned by their parents, left alone in the hospital, crying for help for hours on end. I saw this, and I feel even greater pain for them. But, while the good are few, they still exist. I can only look to these people for encouragement and inspiration because they truly are amazing.

Control

I naively thought that most things in my life could be controlled. Anyone who knows me well enough can vouch for me when I say that I could be a freak when it comes down to it. I thought that if I had my babies before 30, ate well and kept away from the long list of pregnancy no-no foods, exercised, and maintained my stress level to a minimum, by babies would turn out fine. But, I’ve realized now that despite all the “right” things that I did, I cannot control nature and God’s will.What happened to Justin was really just a sporadic event, according to the doctors. They cannot explain why something like this happened. Only God knows. But, I cannot help questioning why, what did I do wrong? I will always carry this guilt with me. But, Loi tells me to look around. There are parents of all different age groups, ethnicities, economical backgrounds who have children with similar conditions to Justin. It is what it is. There is no way we had all been exposed to the same environment, ate the same foods, or had similar lifestyles. Things just happen. With this, I realize that I cannot control everything in my life, that we are all dealt certain cards, and it’s a matter of how we rise above it all that matters most.