Both Nathan and Justin are getting so big!
Nathan talks up a storm and uses words like “amazing.” His favorite thing is still CARS.
Justin is getting stronger and is almost able to sit all by himself! And, that’s just after 6 physical therapy sessions. Yay! I hope that he’ll get the hang of it by his grand first birthday party (more on that, too).
Pictures will be posted when I find the USB cable…
They do not realize this, but I think about and pray for them everyday. I thank the Lord for guiding me to them and sit in complete wonderment of how they’re able to do it.
I struggle with my child because I need to; his very helpless life depends on me being there for him. But, these doctors, they’ve chosen this path to struggle with me, for these sick children, out of choice.
I wonder how it is that they can leave their work at the hospital or in the office. I wonder, for those doctors with families and children of their own, how they can bear to not feel what a parent of burden feels as they witness us crying, screaming, angry, sad.
I feel almost guilty for imposing my life and our troubles on them when I know they have lives of their own, with family, significant others, children. I know this because they tell me.
I recall the electrophysiologist at CHOC telling me that it’s OK to be a self labeled crazy psycho mom. He told me it’s OK to be that crazy psycho mom because I have reason to be and that even when his own child has a cold, his wife freaks out. It’s OK to worry, to want to do something because it shows that we care about our children.
The rounding cardiologist at CHOC walked us down to the catheterization lab for Justin to have to his temporary pacemaker put in. She stood by my side and watched as I told Justin not to be mad at me–I knew he was from the way he looked at me. I burst into tears, apologizing to him, because I felt such remorse for putting him through so much pain. She has 2 boys of her own, I later learned from a cardiology appointment. She has a life and her own set of child rearing problems (as does every parent. We were comparing our 2.5 year olds). How was she able to stand it, being next to this raving mom and not think of her own child.
Justin’s pediatrician sees me like every other week or at least once a month in his office. Then, we’d bump into each other outside of his work, also.
The surgeons all witnessed a mother’s pain as they saw me sniffling and heaving my shoulders up and down in a corner during their rounds. They watched me stand by his side and sing to him, talk to him, prayed for him.
The attending ICU doctors sat down and consulted with us about every major issue from extubation to running a PIC line. When something went unexpectedly awry from their advice, do they blame themselves? It’s not their fault…
My child is fragile. But, there is something fragile about these doctors, also. They may try to distance themselves, emotionally, in order to protect themselves, to perform. But, they are just these human beings living with God-given gifts to help heal the sick. As humans, tending to the sick, they are bound to encounter human suffering in a way that must resonate within in their own lives. How do they have the strength to deal with this every single day of their working lives?
Here, I come to Justin’s cardiologist, Dr. Michael Rebolledo. I must admit I have a certain affection for him because he diagnosed Justin in utero. I don’t know if he realizes how important it was to us that he was able to explain Justin’s condition to us that early on in the pregnancy. We were allowed so much time to prepare–emotionally, financially, with the insurance, and choosing where to have the surgery. He explained everything with such compassion, giving us this hint of hope that others did not. Giving us the news really was the best news we’d ever gotten because it gave us an understanding and some hope.
Yet, every time he sees us at a cardiology appointment, he looks worried. By the third appointment, I started to believe that this was just his demeanor, very serious. But, no, I’ve heard him laugh. So, then, I thought, maybe he felt like every time he saw us he was delivering bad news. But, it’s not bad news because it shows an understanding…and hope…Then, I thought, maybe he was trying to relate to us by not allowing himself to be overly cheery when we had a child with this chronic heart condition, with death so close to the door. Perhaps I am looking too deeply into this, but I worry about him.
These doctors are like family to me though they’ll probably never come over for dinner, even if I ask them to (dare I risk rejection?). They will always hold a special place at my dinner table because they have opened up their lives and hearts to save my child’s.
Here’s to Justin’s amazing team of doctors.
I would like to express my appreciation to these doctors. The best I’ve come up with was thank you cards and some chocolates. We also catered lunch and dinner to the CHLA staff the last time we were there. But, how do we do more for them?
And, if there are any insider views about being a doctor and how patients and their families affect your lives, let me know. I’m interested to hear.
As I watched Justin stare into space while sucking on his mid-morning meal, cradled in my arms, looking completely content, I mused about how completely simple it was to be happy.
All my worries and frustrations seemed to melt away at that moment seeing my child in pure bliss. He’s been through 2 open heart surgeries and one major abdominal surgery, spent months tied up to monitors and tubes, been poked and prodded at. Yet, he can be so completely content with just sucking at his bottle and being held by his Mommy.
I wondered why, then, was it just so difficult to actually be happy. To be happy requires so little. To experience sadness or anger would mean having to conjure up the past, or think, or expend unnecessary energy on huffing and puffing…or delving into a deep, deep psychological hole and feeling the weight of the world on your shoulders.
Then, I looked around. Ah, the things! The flatscreen plasma, the scattered toys, the clothes, pictures, letters, magazines…the clutter!
How could I be happy when I constantly complicate my life with these things that I must constantly clean up or worry about. How could I be happy when I have pictures to remind me of the past or real estate magazines describing to me of how much bigger of a home I could be in. How could I be happy if I allow things to overwhelm my very today.
I decided it was time. To clean up. Clear away the past:
-my old clothes that were still in good condition, but I had not worn for years
-Loi’s old clothes including his collection of t-shirts from our dating days 10 years ago (he got a little upset that I gave away a shirt that had some sentimental value to him…I said, let go of the things. They mean nothing! I’m mean, huh?)
-Nathan’s ball collection (which he did not want to part with. I asked him if it was OK to give it to kids who do not have toys because he has a lot of toys. “I need it,” he says. Sigh.)
-our collection of blankets
I gathered everything into white trash bags and dropped it off at the Catholic Worker, a home-based homeless shelter (the founder opened her home up to over 120 homeless people a week).
You know what? It felt good–to clear the area of our things and passing it on to people who needed it more. I’ve adhered some value on everything that I own because it allowed me to transcend to the time or feeling that that thing represents. Or, I would hesitate to part with something because I wondered if it would become useful in the future. So, to pack my things up without a second look and pass it on was a big thing for me.
Things are just that–things. That’s my new motto. Justin, what have you done to your mama? I love you!
Elijah Daniel Update: Good news is he’s back at home and is on track for surgery as scheduled. Not so good news is he still needs the surgery. Please continue to pray for his family, Mama and Papa Porta, and Baby Elijah Daniel.
Mama Porta of Elijah Daniel’s blog is not only heartbroken over her own child’s sickness and upcoming surgery, but she is also mourning the loss of her heart friend’s baby, Helena. It was only 2 months ago when I happened upon this little girl’s blog. Eagerly, I read from beginning to recent because I was so excited to find a child who was doing so well after her 2 heart surgeries despite some road blocks along the way. Just this past week, she had her third and overcame with “flying colors,” according to her parents. Within days, during recovery, she went into cardiac arrest. She was almost 2 years old.
I left the blog open on the computer and went to sleep with prayers in my head for all the heart babies of this world. Loi woke me the next morning with,
“The little girl passed away.”
“I know,” I responded.
“I don’t want to lose, Justin.”
Then, he hugged me. Over Loi’s shoulder I saw my little man waking up beside my big man, kicking his little left leg, up and down. I watched as he squirmed from side to side while rubbing his eyes with his fisted hands.
“He’s waking up,” I told Loi.
Loi left my side and turned to Justin who was then looking intently into his father’s eyes and smiling. Every morning, this is the ritual:
he’d wake up.
upon finding us, he would stare, bat his arms, and squirm until we acknowledged him;
then, he’d pull his legs in and scrunch his body in delight
and smile at us.
Our life with him on this earth has been a mere 8 months. Eight months–that’s only 2% of my entire lifetime. Yet, we have these endearing things with him, rituals, memories. Aside from my time with Nathan, everything else in my past pales in comparison to these few months that I’ve had with my boy. It is as if my entire life had been lived in a haze until he came along, and then I really started living. What will happen when this life leaves me? How will I have the strength to let go?
The longer we have, the greater the hope, the harder it will be…to let go.
You know the old saying, “It is better to have loved and lost then to never have loved at all”? Well, is it? Is it better to have all the years of getting to know my baby only to lose him? Or, is it better to not have had the opportunity to know him at all? Would miscarriage or abortion been easier…on all of us?
My decision at 19 weeks gestation was to give Justin the life he always deserved. The fact that he survived and was born to this life was a blessing, a miracle from the Lord. I cannot tell you if it would have been easier any other way. But, the way we see it, we got the better end of the deal because we got Justin.
Nineteen months. Helena’s parents had nineteen months with her. Oh, I can only imagine the memories they shared. Their grief is not one I can begin to understand at this point in our journey. But, I know with all that that child had given them, the love, the laughter, they, too, would not have wanted it any other way.
Please have a moment of silence in your busy lives, free from all your worries and endless thinking, and pray for this little girl and her family.
This past week, I worked on typing up a consolidated form of Justin’s medical history in his (almost) 8 months of life on this earth starting from the day he was born up to his latest cardiology appointment. I had the opportunity to steal 1.5 hours while Justin was napping (Nathan was with his Auntie at work), in which time I was able to finish only up to his follow up with cardiology after his LADDS procedure–that was done in his second month of life.
As I typed up the dates and the events following those, I could not believe how much had happened in such a short amount of time. I did not realize that Justin had been in the hospital for only 22 days after that first surgery–at the time, it seemed like forever. Each day dragged on and on and on like there was no end. Every subsequent day only felt like a continuation of the previous day. The sun would rise and fall, the nurses would change at each shift, and doctors and surgeons would make their bi-daily rounds. The world went on inside and outside of the hospital–people went home, ate, slept, worked, played.
But, for people like us who had children in the ICU, life did not go on…it stood still…until our children were out of the hospital. We did not know how to be normal, to breathe, to eat, to sleep, to think of tomorrow. We could not see beyond our very own child laying in that hospital bed. Nothing else seemed to matter, but him getting through that day and the day that he’d be discharged.
I remember an attending physician at CHLA telling us to go “get some rest” because Justin was stable and that there was a team of doctors there trained to care for him. He said he knew that this was easier to say for a person who did not have a child in the ICU, but assured us that we’d be doing everyone some good if we just went to get some rest. Another attending at CHOC offered the information that parents who spent prolonged time in the ICU had symptoms similar to those who suffered from post-traumatic war syndrome. “So, what are you trying to say?,” I asked. “You should get some rest,” she said. It was important to these doctors that our minds were fresh and our bodies were well rested to make crucial decisions for our child.
But, you see, when our child’s life was hanging by a thread, when every inch of his being depended on this already weakend organ, his heart, blinking almost didn’t even seem like an option. I mean, Justin’s heart literally stopped within a blink of an eye, without prior signs. So, to relax a little, or to sleep, even, was certainly out of the question. This was our mentality every moment we were in the hospital.
When we were on the road home to visit Nathan or when Loi would stop into work to see how everything was going, hospital mode followed us. Life around us continued, but this feeling of dread and end lurked within us.
We’re back to “normal” mode, and a month goes by terribly fast, now. I cannot believe that 2 months have already gone by since we’ve been discharged from CHLA. This is not to say we are not without glitches (like the fact that he chokes while he eats sometimes and arches in pain and threw up a couple of times. Oh, and I took him to the pediatrician the other day because his lips were bluer than usual), but we are certainly not in heightened combat mode all of the time.
Hospital mode is behind us and I do not wish to enter it again for as long as I can help it. But, living in the hospital is a reality, still, to others. Sick children continue to exist.
Just earlier today, a little 13 month old boy, Elijah Daniel, from a heart blog that I follow was unexpectedly admitted to the hospital for his extremely low oxygen saturation levels and cold/flu. His surgery not scheduled for another 2 weeks. But, it seems as though it may be bumped up to this week. I ask that as you pray for us to also pray for this little boy.
And, here’s an exercise for you all: Just as you’re ready to complain about the wrongs in your life (how you do not have enough money, wealth, recognition, achievements, time..things), take a moment to breathe and appreciate. Appreciate your freedom, your health, your company, your being. Then, all else will not seem to matter. For, it would be a terrible waste to realize how good you really had it only when you’ve already lost it.
There’s a specific reason why I don’t hold Justin when meeting with his cardiologist, Dr. Rebolledo–I tend to lose my senses. With the boy full of chubs on my lap, I get a little distracted by and a lot attached to him. I attended the cardiology meeting sans Loi this past Monday, so I had no one to hand the little bundle over to. So, as I brought up the sensitive issue of heart transplants to the doctor and my worry of how the timing of his condition may affect how well he’ll receive a donor heart, I started to stutter. It was embarrassing, to say the least. I think I was stuck on, “I don’t want…I don’t want…I don’t want….” for like a minute before finally blurting out something about how I didn’t want his condition to get so bad that it would compromise how well he’ll receive his heart and whether he’ll actually be eligible for one.
Dr. Rebolledo really is a nice man and didn’t even try to jump in to fill in the blanks for me; he just sat there patiently trying to listen to what I had to say. Help me!
It’s still too premature to discuss getting Justin on a list for a donor heart. The echo showed that his leaky valve and pumping action are in about the same condition (severe, mildly depressed) as his last echo a month ago. The doc just upped his Captopril and Lasix to help with his heart function and made plans to meet again in June (ahh!) for another echo and checkup.
If I thought about his leaky heart and the weakening of his pumping action all the time, I’d drive myself nuts, not knowing when his heart will just give out. So, I don’t…well, not obsessively, at least. Instead, I just look at his beautiful face and focus on the fact that he’s been making a lot of progress. In fact, today, he just started babbling for a good 5 minutes with me…just because! And, the fact that he’s here, at home, smiling and happy makes me happy, too. All I can do is take it as it comes…can’t think too much of the future. There are too many variables that will affect the outcome of his life that there really is no point in speaking of the future and the what ifs.
I continue to pray for miracles, though. Won’t you join me, too?
“It has been said that there are 2 ways of being unhappy: not getting what you want and getting what you want.
“When people attain what the world tells us is desirable–wealth, recognition, property, achievement–they’re still not happy, at least not for long. They’re not at peace with themselves. They don’t have a true sense of security, a sense of finally having arrived.
“Their achievements have not provided them with what they’re really looking for–themselves. They have not given them the sense of being rooted in life, or as Jesus calls it, the fullness of life.”
(**Justin has really helped me find myself.) Although I may not have all the worldly possessions and I may not bear great social status, I am at peace with who I am. I appreciate what is and am not in constant search for more. It can get exhausting to try to chase something when you don’t know what it is you’re after.)
AND
“You don’t solve problems by thinking; you create problems by thinking. The solution always appears when you step out of thinking, become still and absolutely present, even if only for a moment. Then, a little later when thought comes back, you suddenly have a creative insight that wasn’t there before.
“Let go of excessive thinking and see how everything changes. Your relationships change because you don’t demand that the other person should do something for you to enhance your sense of self. You don’t compare yourself to others or try to be more than someone else to strengthen your sense of identity.
“You allow everyone to be as they are. You don’t need to change them; you don’t need them to behave differently so that you can be happy.”
(**I’ve admitted that I think. Way. Too. Much. Often times, I wonder how I can change another’s perception of Justin’s reality…that he is forever sick. His heart is never fixable. A heart transplant will not fix all problems just because it’s a “new” heart. That he will never be “normal” according to their standards, but normal enough to heart baby standards. I get tired of explaining and knowing that they’re not really understanding because they’re just busy thinking “how sad” or “medicine is so great he’ll be fine.” I think, “Geez, why don’t they get it?” Then, I realize that I’m explaining because I want them to see all the complexities of my life with Justin. I get frustrated when everything is simplified. So, I let them be. And, I stopped narrating my life and conjuring story lines in my head of what I could have said to what they said, or how things could be different if they just understood, or arguments I’d like to have with them. I save my energy…for the smiley boy Justin who can’t keep his eyes off of me….and for my Nathan who never ceases to make me laugh. And, the solution does come to me…of how I can help them understand….when I least expect it.)
–Eckhart Tolle, Findhorn Retreat: Stillness Amidst the World
Nikki once told me that God has a way of sending those to me when I need them most. And, there I was, at the hair salon, getting a little trim…She pulled this book out of nowhere (another client of hers had offered it to her) and told me to read it. Then, she went on to tell me that she does not have everything or all the money in the world, but she always tries to be appreciative and enjoy life. She doesn’t let the little things bother her because she doesn’t see the point.
My week had been tension filled. There were moments when I caught myself not breathing because all my stress gathered at my chest. This was a result from a combination of poor eating habits, endless cleaning (can Nathan have any more toys?) , and a lack of time to recharge (imagine Nathan calling “MAWMEE, MAWMEE, MAWMEE” like a siren throughout the day while Justin “WAH, WAH, WAH’s” Uh, can I just go to the restroom, please? “Mawmee, you’re not listening to me!” Nights are insane with Nathan screaming and scratching.). I just needed time to myself–without my boys–for a few hours. To breathe. The hair stylist was really a blessing. I stepped out of the salon refreshed and with a renewed perspective.
Then, went to Barnes and Noble and got me one of those Ekhart Tolle books, “The Power of Now.“
