Matters of the Heart Revisited...

I am still scarred from my first surgery.

Oh no, I'm not talking trauma. I was only 8 months old back then.

Oh wait, you're thinking of the long line down my chest? No, not that, although yes, it is still there.

What I meant was the scar on my face from when my unruly fingernails pulled out one of those tubes -- and took out a chunk of my cheek as well. Yes, permanently scarred.

(Mommy: note to self, trim Daniel's nails before surgery. Cut his hair while he's sedated. Life is good.)

Back then, OHS was much easier despite the fact that the actual procedure itself  was way more complicated - a six-hour expedition. But back then there were no other children to worry about (save for Lucas who was an unknown and microscopic presence at the time). Back then, aside from being really cute I was also immobile. And I was probably less impressionable and a tad less independent.

Here are some of those memories as we relive:

Pre-op Day

Update

ICU

Moving into the regular ward

Welcome home! (Don't miss the video which oozes cuteness)

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Sibling Q&A before the 'big day'

Some take us for triplets which is very
insulting if you ask me, three years
older than the tall and slender Raia.

Heart to heart (no pun intended, really) with my siblings about the impending "S" word a few weeks ago:

Parents: We have some news for you. Daniel needs to undergo open heart surgery.

Shock and rare silence.

Lucas: Who is going to do it?

Parents: A very good, experienced and reputable surgeon.

Lucas: Has he done this before?

Parents: Yes, thousands of times. In fact he was Daniel's (and his friends') surgeon eight years ago!

Lucas: Did anything bad ever happen in any of his surgeries?

Parents: No, never! Perfect record!! (Unverified, but quick comeback!)

Pause. Daniel goes over and hugs Lucas. Embrace lasts about three minutes while Raia sits in stone cold shock and silence. Questions ensue which lead to explanation: scar tissue, blocking aortic valve, etc.  

Parents: So, as the surgeon said, thank God it's possible to fix problems like this these days. You can't live with these problems, so we are grateful it can be fixed. Right?

Lucas (onto the next issue): Okay so where exactly is the membrane: in the heart or outside? In fact, let's break out the model heart and figure out this whole conundrum.

The three amigos (sometimes stooges)
are hard to separate.

Which we do, in addition to viewing several episodes of Chloe and the Nurb, and entire session - intended to guide siblings through a tough and neglectful upcoming few weeks - turns into a science lesson. 

Two weeks later at bed time.

Raia (as sulk descends upon her face): I'm scared.

Parents (rolling their eyes awaiting the stall-tactic excuses): Why are you scared this time?

Raia: That Daniel has to have surgery.

:(

And thus was Raia's first and last mention of the impeding procedure, proving that despite the silence, her apparent disinterest was a ruse. 

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Save the Date... and start praying!

It was New Year's Day and we found ourselves dining in the quaint neighborhood of Ein Karem gazing at the sun drenched view of staggered green hills.

And a hospital.

Yes a hospital. How ironic that the hospital towered into our sights on the first day of the year. Just to help us set our agenda for the coming weeks. Just to loom over us like a dark shadow reminding us that, now that the holidays are behind us, it's time to get serious.

Serious about what, you may ask. How to say this? Kind of like, how you pick a date for surgery when the surgeon asks you for one? Is it like picking a coffee date: You want to meet up for coffee on Monday? Sure! Would you like to come for open heart surgery next Tuesday? Yes, why not?

Here's me drinking up the holiday flavors
(hot apple cider)

So that is what has become our fate and now that we've stealthily avoided the issue since that fateful appointment in November, it's time to start dealing with reality. And so all of a sudden when I can count on one hand the days I have left in school until D-Day, I better start getting ready.

It all began in November when I went for my routine heart check up that turned out to be not so routine. After a long and boring wait a technician spent way too much time boring me some more with her magic wand of the ultrasound. That was followed by another test of my patience and the iPhone's battery waiting for the cardiologist himself to review the results. Then he decided he too would wave the wand again over my fluttering and bored heart while we waited to hear that everything was A-okay and we could forget booking another appointment for a year.

Those were not the words we heard however. In fact, we heard words about booking appointment for other such things like, gulp. surgery.

See, when I was 8 months old and I underwent open heart surgery to basically build the walls of my heart (Complete AV Canal defect), the surgeon told mommy and daddy there was a 10 percent chance they'd have to revisit this scenario for some sort of repair. And now at 8 years old, that 10 percent equals 100 percent in the realm of Babies'/Murphy's Law.

Since that first surgery I've seen a cardiologist for follow up every six to 12 months (except for that time when my parents missed a year) just to make sure I was ticking well. Two and a half years ago there arose a cause for concern and that cause has increased since then. Dramatically since the March checkup.

If you want to get technical, the official diagnosis is aortic valve stenosis. And if you want to just be practical, it simply means that something (like scar tissue or a membrane) has been steadily increasing in size for the last few years and is now blocking the blood flow and driving up blood pressure to almost dangerous levels.

So we are doing a sort of repeat performance. Same hospital, same surgeon.

Save the date: January 22*

*The information in this blog is not meant to be used for diagnostic purposes since this was composed by a non-medical professional Nor should the dates be written in ink as surgery can be postponed in case a bigger emergency than mine arises!

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Merry Baby Ramblings to all, and to all a Good night!

It was Christmas Eve 2018.

And daddy said, as he was putting the kids to bed (before having to clean the house, extricate the gifts from hiding, wrap the gifts, place them under the tree and get every imaginable detail ready for the perfect Christmas morn for the darling children):

Daddy (after he read the last entry from the Advent calendar): “And may you all sleep like baby Jesus. You know when Jesus was little he slept ALL the time. You should all sleep long and late tomorrow (despite the fact that you know that gifts will be waiting for you and a sixth sense will drive you to irrevocable alertness at an ungodly hour of the morning). You know, silent night, holy night. All is CALM??" (emphasis added by father)

Lucas (the wheels ever spinning): "But the Bible says that God never sleeps." 

Daddy (falling into the trap of reasoning with a (now) 7 year old): "Well yes God never sleeps nor slumbers. But Jesus was on earth as a human and so he had to sleep. And he slept GREAT! Even as a baby. Like ALL the time."

Lucas: "But even if he was God? He wouldn’t have slept, even as a baby! He would be awake all the time, because he was God. Wasn’t he still God when he came to earth?"

Daddy: "You know you shouldn’t try to overthink this. Just go to sleep. And if you don't sleep late, you'll get coal in your stocking." Resorting to threats because the baby Jesus example didn't work.

Lucas (with a wide smirk of victory spreading across his face): "Yea. Sure." He said with a wink and that defiant knowing smile, secure that he had won. As children are wont to do.  

Because he was actually right. And Jesus, the God of all, and of all babies and other humans, probably didn’t need to sleep a wink. But maybe he did anyway.

It remains a mystery.

Nevertheless, we are instructed to become like little children to enter the kingdom of heaven. And Jesus said that. So we should be like him. And he probably didn't need to sleep as a baby. 

But it remains to be seen whether he kept his parents up all night as well, as he presided over world affairs as a one week old.

We may never know. And we may never sleep. All we know is, Merry Christmas to all, and to all a good night! 

And good luck!

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International Day of Disabilities

In honor of the International Day of Disabilities, allow me to repost a three-year-old blog. I've gotten bigger but the situation has pretty much remained the same!

See here for original.

In the driver's seat of inclusion!

Not even on Twitter, yet so many followers!

Happy to be... and Happy Day to Me!

I randomly came across the fact that yesterday Dec. 3, was International Day of Persons with Disabilities. Who knew there even was such a day? I did not.

I prefer to say that I am a person with varying abilities, not the least of which are my keen writing skills. Nevertheless, I have a title to put on my ID card and it entitles me to various things, some clear, many not and most that I need to go out and demand.

So on this auspicious occasion, I would like to point out what some of those key rights are, many of which overlap with the internationally recognized rights of babies, known to parents worldwide:

• I have the right to drive my parents crazy
• I have the right to harass my younger brother and sister
• I have the right to throw fits and have meltdowns, in public
• I have the right to attend a "regular" school
• I have the right to receive therapies at school
• I have the right to get therapies through my insurance company

Kids who play together advance important causes together (such as inclusion)!

But, in parallel response to those bullet points:

• No buts, it's the God-given right of every child and we know how to use our rights!
• My brother and sister are getting old enough to harass me back!
• No buts, again, its our God-given nature and the Murphy's Law of Babies
• I cannot attend school without an aide and the aide only gets 30 hours/week to be with me
• The city cannot find/hire/pay one therapist willing to come to my school for just me for one hour a week
• My insurance company doesn't cooperate with the premiere place where I am receiving my therapies rather offers me subpar therapists, many of whom have zero experience with T21, at their own place (*one said session ended in utter disaster)

And so my parents have their own newly bestowed set of "rights":

• My parents have the "right" to spend all their spare time embroiled in wars with governmental and insurance company bureaucracy  
• My parents have the "right" to spend the rest of their spare time quelling entanglements between all of us siblings
• My parents have the "right" to take time off of work to bring me to my therapies
• My parents have the "right" to pick me up early from school every day because we have no aide for the after-school program
• My parents have the "right" and responsibility to maintain their sanity despite all of the above

BFFs

Perhaps those aren't rights, rather consequences of a broken system. Our famous biblical saying is "faith without works is dead." Likewise rights without the infrastructure to make them into reality are useless.

Days such as International Day of Persons with Disabilities, like the concept of inclusion, are nice in theory. But without a widespread awareness of the challenges facing people with disabilities - and I'm not talking about the mental and physical challenges - change is a long way down the road. Let's hope that this day will bring more awareness so that more rights can be readily meted out. And meted out with a cheerful heart rather than a long and exhausting war every time!

I have lots of rights, but making them a reality is still a long way off. In the meantime, I make the most of the rights that I can execute on my own such as melting down and being cute.

Me and my shadow!

This is how Talia and I roll at school

I have a God-given right to be CUTE

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The Amazing Duck with Down syndrome

First Grade.

First Grade.

We are in the last moments of Down Syndrome Awareness Month, October 2018, and so it is with no small sense of excitement that I announce that the "awareness" of Trisomy 21 has spread to the animal kingdom!

It was on this day, Oct. 31, 2018, when the rest of the family learned that one of Lucas's many stuffed animals has Down syndrome.

Lucas matter of factly revealed this bit of information in the midst of one of his extremely lengthy soliloquies, the bane of the overly-verbal (as opposed to non-verbal) child. Upon hearing the news, mommy felt a mess of emotions ranging from amazement and elation to tears stinging the backs of her eyelids. But she tried to maintain her composure and meet this revelation with the same delivery in which it was given. Just the facts.

In fact, Teet has always had DS, but Lucas, who is 6, only just recently became aware of the diagnosis. Mommy asked how he didn't know about this before. The reason - because Teet, who is a duck (or a chicken, no one is quite sure which), knows how to do "all the stuff like his other toys."

Mommy went into full tear suppression mode and delicately probed further.

How did you discover that Teet has DS? Lucas said it was during a play session with his toys' doctor, another toy, and the doctor told him that Teet was a Down syndrome baby. Yay! Lucas said, a Down syndrome baby!

Lucas, my dear younger brother, is a quick learner of lessons he doesn't even know he is learning. Amazingly, despite our huge differences, we are largely the same to him. At least that is Lucas's perception, the one that he was inadvertently raised with.

Raia and I with mommy, sharing the same
privilege of attending a late-night, sensory overload, outdoor concert!

But Lucas wasn't done processing this information. He raised some other questions: who is Daniel going to marry when he grows up? It is going to be harder for him to find a match, Lucas surmised. And will he marry someone with Down syndrome, or not? Of course, we also don't know who Lucas or Raia will marry, Lucas readily admitted.

So really, all our fates are uncertain which makes us more ... the same!

Even though apparently he knew about Teet's "condition" for awhile, Lucas only just mentioned it, because it just wasn't a big deal. But it goes to show that he has a healthy and much needed approach to "different" and to life in general, one that should be spread to all corners of the earth, all year long, not only during awareness month.

And with this diagnosis of Teet, the duck/chicken who has Down syndrome, mommy and daddy got a bit more oxygen to their tired souls and, for a moment, could say that perhaps their constant battle for "inclusion" is worth the effort.

My paisans and I in Rome at Locanda dei Girasole.
Read more about that amazing locale here.

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Baby training with my cousins!

Cousin reunion, plus meeting Naomi for the first time!

Hello, little cousin. I have much to teach you.

My mission in America is going very well. As part of being a baby-turned-little kid, my job in life is to train up other babies in the ways they should go. I have done exceptional work with my siblings creating a very rowdy and adventurous brood that brings a tornado of destruction wherever we go. Roman Empire? Well, you know what happened there!

And now, here in the metropolis of New York,  I've started working with my cousin Theo, who is 2.5 years old. I'm proud to report that within one week of sleepovers in the same room, I trained him to abandon his excellent sleeping habits (12 hours a night, never awaking before 7) and instead start stirring at 5 a.m. never to return to sleep again for the day!

In fact, he earned his certificate of excellence when one morning, rather than me waking him up, Theo awoke first before any of us, at 5:30, and immediately went scampering downstairs to bother Mimi and GongGong!

Another part of my training course has been to have Theo forgo his rather consistent and solid afternoon nap. That was a no-brainer. When you're running with the big boys, you don't nap. You run.

All. Day. Long.

Theo has done things he has never before known possible - and all thanks to us who are teaching him the ways of babies. As he is an oldest child like myself, I was concerned that his training needed a boost since he is not surrounded by older and wiser children who can pass along their wisdom. I need not have worried, he is a quick learner.

His training has been splendid. In addition to his new zombie state of sleeplessness, one day his mommy, Zemmy (Zia Em), found him sitting on the dining room table while trying to wrest the Legos from Lucas. He was spotted there only after knocking over a cup of coffee.

In another session, Raia taught him to smash all of the clay colors together into one monotone mass.

Theodorable has also learned to rip off his shoes and go barefoot at many inconvenient times and locations as we are wont to do. For example, when we arrive at Nanni's, we instantly remove shoes immediately and go running through the senior living space thus much to the horror of the residents and workers alike.

In this photo, we taught Theo how not to pose for pictures
thereby ruining an all-the great grandchildren photo!

Showing off and barefoot

The shirt says it all

We also taught Theo that it is a God-given right for
a child to steer Nanni's wheelchair, as pictured

Theo has learned the ways of iPads as well: One, to take any iPad you see and just use it; And two, to walk up to anyone with an iPad and touch the screen thereby changing everything and causing untold angst.

Most importantly, we have instilled in Theo a sudden and very high sense of independence and unwarranted adulthood. We as children run the world, and we should act like it.

This is what babies do. We pass down our traditions and laws to the up and coming generation. Hence centuries worth of sleeplessness and parental anxiety have roiled mankind.

Or it could be that he's 2 and that our training happens to coincides with this general phase of life. Basically we become uncontrollable wrecking balls and bring many character-building challenges into the lives of our parents. Mommy was slightly apologetic about that to Zemmy, but then again, misery craves company.

And thus our days have gone during a week of raucous reunion activities.

We will work on Naomi next year. 

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