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Thursday, October 31, 2019

Bringing true awareness to Down syndrome, as only I can

Making you aware of me
Every October is Down syndrome awareness month and, every year, amazing articles are published by parents or others who have a loved one with DS. They detail the challenges, the joys, the milestones, the first time they heard the diagnosis and other aspects of life with Trisomy 21 — all inspirational and worth reading. I recommend searching the Internet to find a few of these moving stories.

We all (especially my parents!) love reading the success stories and the warm and encouraging testimonials of those who have overcome obstacles and achieved amazing feats. I, however, am going to give you a different glimpse of life with T21 and how I personally provided quite a “keen” awareness of Down syndrome this month:

Oct. 1. We are going into a restaurant? Nope, not me. No way! After my parents dragged me in anyway, I showed them… I sat under the table for a half hour. Hey, at least I didn’t scream. I came up for air and ate some food in silence. I welcomed the part when we finally left and I quickly returned to my cheerful self, like nothing bad ever happened. 

Oct. 2 The beach. I am at my calmest when near an ocean or sea. I love being pummeled by the waves and can stand there, up to my knees, for a good hour after everyone else is bored and wants to retreat to the blanket. When I’m done with the waves, I sit in the sand and bury my hands in deep. And then I inevitably take a few bites. There’s nothing like the taste and grit of sand in my mouth!

Oct. 4 My parents dragged me and my siblings to the mall. Big mistake. As soon as we entered I noted the sheer depth and enormity of the building, and I dropped to the ground in full dead-weight mode. A mall is a layered form of torture: a huge building comprised of many mini buildings inside. Way too much stimulation happening here. But this is where protesting works in my favor — dad offers to carry me on his shoulders. This has worked in several cities around the world. While the rest of the family is enjoying touring a city by foot and seeing new sites, from the Coliseum to the Acropolis to Red Square, I’m usually overwhelmed and melting down and I refuse to walk. The only option to keep me moving is to carry me. Then I’m actually happy as a lark. I am 9. 

I'm a baby-pro! Here I am whispering to my latest cousin,
Yasmeen, all the secrets of the Baby Code. (See Oct. 14)

Oct. 5 Because I threw and lost my very expensive glasses last month, my parents took me to an eyeglass shop to get a new pair. Luckily we were already armed with a painstakingly gotten prescription so all I had to do was try on frames. Simple right? Au contraire. Do not let anything touch my face. I fell to the floor — in the middle of the store — in protest. Again, dead-weight mode. My mother wrenched her back trying to hoist me to my feet. Finally my father came to the rescue and, with both of them cajoling (and holding my arms down) I agreed to try on some frames — for one second each. We aren’t sure if they looked good but we quickly decided on two pairs anyway (you always need a backup). I may have also screamed intelligibly a few times. I don’t remember but my mother said everyone acted as if they never heard a 9 year old scream before, while pretending they weren’t listening.  

Oct. 7 I was overcome with joy when my cousins arrived for a visit. So overwhelmed was I that I ran immediately across the street to greet them, without a care in the world. My mother says I’m lucky I’m still in this world and that no car was passing by at that exact moment. 

Oct. 9 Another restaurant??? Abject panic. This time I couldn’t sit under the table, but I stood in a far empty corner of the restaurant for a good 15 minutes. We call this progress compared to Oct. 1. And I really enjoyed the ravioli. @Piccolos #bestravioliintheworld

Oct. 10 My parents told me we were heading in a certain direction — then there was a lot of intelligible chatter as they spoke quickly and processed some new bit of information at lightning speed — and they changed direction. Sorry, no. I do not switch lanes. I went running for the door in the direction we were originally headed. I had to be dragged back moaning and crying. 

Oct. 12 Horseback riding. It is where I belong! I haven't ridden for almost a year but I haven't lost my mojo, in fact I got better at trotting and commanding my steed to stop and go. @HorseAbility

Oct. 13 Thanks to the latest Amazon delivery, I now have a compression vest that keeps me snug and less sensory seeking. My parents bought it in order to secure my chest bone which is on an express train growing outwards after my last open heart surgery 10 months ago. But a happy surprise side effect of this vest has been a slight calming of my sensory needs.

Oct. 14 We have a new baby cousin and I had the distinct honor of being the first of the cousins to hold her. I am her oldest cousin on this side of the family and I inwardly vowed to mentor her in the way of babies. I was extremely gentle, but occasionally overcome with emotion and couldn't help squeezing her, patting her soft head and kissing her cute face). 

Oct. 15 My parents returned to the oppressive place they call the mall — and this time, they left me with my grandparents. They did, however, take my brother and sister. Seems they learned their lesson. But if they didn’t have those babysitters, they would’ve had to choose between certain public meltdown or staying home.

Oct. 17 At the airport on the way home. Despite being a very public place, swarming with people, delays, lines and start-and-stop movements, my parents had no choice but to take me since we were heading back home. They are traumatized from previous meltdowns, accidents and even an in-flight manifestation of full-blown pneumonia which resulted in a six-night hospital stay after landing. But amazingly this trip, which included two long flights and several delays, went smoothly. Yay! We will consider traveling again!
We still fit as carry on. Whew!
Oct. 20 We are in the midst of overcoming jet lag and my mother has begun to panic: It’s been a month and I’ve refused to do any homework, so now it’s time. To humor her I actually took a pencil and played connect the dots. She was overly impressed and hopes this behavior will continue. Ha ha. 

Oct. 22 First day back to school after the holidays. To flick my proverbial middle finger at the fact that I hadn’t had a framework of school or therapy for over a month, I ran away from my classroom several times. And just for good measure, I threw my new glasses. Here’s to back to school!

Oct. 22 First day back to school after the holidays, and for a healthy dose of positive behavior, I used pictures and a few words to tell my class that I went to Moscow and New York during the break. I pointed out Red Square and other sites, uncommon for most children let alone those of us prone to freaking out in new places.  

Oct. 24 Our long awaited visit with the endocrinologist has finally arrived. My mother doesn’t even remember why she made the appointment since it was a five-month wait. According to my measurements, I’m barely visible on the DS growth chart and not even on the same planet as the “regular kid” growth chart. But doctor declares that despite my shocking shortfall (no pun intended) all is well and no one needs to care! Doctors are not mommy's favorite.

Oct. 27 Daylight saving has come to an end and most people are grateful for that extra hour they had to sleep that day. I had an extra hour to play and wreak havoc around our home before I woke up everyone else. I love to maximize that extra hour we get once a year.  

Oct. 28 On the bus coming home from my after-school program, another kid (who also has “special needs”) decided to lose it for a little while. He punched the chaperon and pulled another kid’s hair all the while screaming and shouting. I freaked out. That was really scary and so I peed in my pants, because that’s what I do when I panic. I got off the bus crying and took awhile to calm down. These special needs kids are so weird.

Despite the labels, I cannot be put in a box.
Or on a chart!
Oct. 29 My mouth needs a lot of sensory input. But most doctors and therapists can’t be bothered to diagnose past “Down syndrome.” Why bother with “trivial” issues such as “sensory processing disorder” when you’ve got an extra chromosome raging in every cell of your body? Hence, I do self therapy. In this case, I decided to chew on my new glasses. I bent the frame beyond repair and scratched the lens with my teeth. 

Oct. 30 Today I lost my jacket and my water bottle at school. Being mostly nonverbal I can’t tell anyone where I may have left them. But those are small losses compared to glasses, right? I like to give my parents the opportunity to constantly recalibrate their perspective in life. I'm good like that.

Oct. 31 Daddy was asleep still in bed so I pulled the covers off him and said, “Good morning!” Considering I’m nearly nonverbal, this simple greeting was like a happy jolt of coffee to get him out of bed smiling. All in all, I'd say October had been a great month!

This is the type of Down syndrome awareness that my family, teachers, therapists and my ever-patient PA (aka, my shadow at school) experience on a daily basis, year round. It is a 365-day cycle of battling, overcoming, rejoicing and picking up for the next battle. 

So thank goodness for October when all the uplifting stories are published, giving us hope that "this too shall pass" and that success awaits us around every corner!

Sunday, August 11, 2019

So long, Sarande!

The Baby Blogs hits the road!
From the sea to the mountains of Albania

Why Albania? Because traveling to a country sight unseen with three children who are hyper and all of whom are prone to meltdowns at any given time especially one of whom is nonverbal is the only sort of adventure travel my parents can muster these days.

And so instead of trekking across the Himalayas or backpacking the Alps or skydiving, bungee jumping or getting waterboarded, my parents take their kids on overseas excursions and experience much if not more than the adrenaline equivalent and heavy lifting and anxiety of these crazy stunts.

Unless we are taking a precarious ferry or a beaten up paddle boat to a deserted island in which case they are not pulling these stunts on land but also on water where children are in more so imminent danger.

With Nene on the adventure of a lifetime!
Italian food is popular in Sarande as we demonstrate here...

The Old City of Gjirokaster

In the old castle of Gjirokaster

The Blue Eye, an amazing natural wonder

On a deserted island

Albanian sunset 

Sunday, February 24, 2019

Saying goodbye to Nanni

Dilma Viotti Spagnoli: A Class Act.
...and a "great" great-grandmother.
I just lost my last living grandparent and with that came a rush of memories flipping through my mind like a rolodex of our time together and thoughts about our family mosaic, our heritage and the generations that have built who we are today.

“The lines have fallen to me in pleasant places; Indeed, my heritage is beautiful to me.” Psalm 16:6

Indeed, I’ve always thought that of my family. I’ve been blessed. I had great-grandparents until I was 16. I had three grandparents until I was married. I had two until I had my first child. And they weren’t just alive, but they were fully invested in life and family.

And our heritage is indeed beautiful.

Dilma (nee Viotti) Spagnoli, or Nanni, stands tall in a generationally minded family that instilled values and passed on traditions, without words or lessons, but just by their very essence. Nanni, like her husband and her parents before her, stood with honor as patriarchs and matriarchs before passing the baton to the next generation. 

Nanni herself was the kindest and most approachable person. While she spent most of her life as the backdrop to Popi’s exciting career as a band leader, Nanni avoided the spotlight. 

Nevertheless, Nanni had an uncanny ability to shine the spotlight on any person that came into her presence. While Popi played to the crowds Nanni played to the one. She made each individual feel like the most important person in the world. And that is because she actually believed it. Nanni saw the best in everyone.

Joy to the World. One of many family
Christmas celebrations.

And when it came to her grandchildren and great-grandchildren, she saw only perfection. We could draw nothing less than beautiful or get grades that rendered us anything but brilliant. She referred to her great-grandchildren her “little angels” and let them ride with her on her wheelchair and run circles around her peaceful living room — far from the decorum with which she normally lived. She accepted all of them as they are without question and she defended them fiercely.

Though Nanni eschewed attention she channeled “attention to detail” into everything she did. Details that brought life to the ordinary: Mint leaves from the garden in ice tea; beautiful stitching she added to a dress; matching accessories with every outfit; an infectious and ever present smile. It was this attention to detail that set a tone of welcome in her home, which always teemed with love.

Nanni radiated warmth. She was approachable.

Nanni was a class act.
In fact, Nanni was the definition of class. With her passes an era, an irrevocable time gone by. A time when jeans and cell phones did not exist. Her marriage lasted 63 years, until death did they part. It wasn’t luck that they fell upon, but hard work and principles. Dilma comported herself with poise, always dressed smartly and even elegantly for outings. She maintained a connection to her Italian relatives writing letters by hand and sending photos until recently. 

63 AMAZING years. 

She was industrious and hard working as a wife and mother and before that as a seamstress in New York’s Garment District. Long after she stopped working she created her own clothing and that of her daughters for years to come. Her dresses were fit to appear on the runways of the time.

At just 3 years old she traversed the Atlantic Ocean with her parents from Italy to live out the American dream. The Viottis were the immigrants of yore that came to the United States prepared to work hard and integrate fully into society and the English language.

But the family fiercely clung to their traditions, those glorious Italian traditions. Northern Italian food, music and the dances we all attended. 

It always comes back to food: When Nanni and her mother, Clelia (Nonni), pulled out the special wooden board for making pasta we would swoon with expectation. I’ll never forget witnessing the day-long miracle of gnocchi creation. There was the occasional polenta production. And there were the days leading to Christmas when they would together churn out bugie, deep frying the bowtie cookies and sprinkling them with powdered sugar. 

Family events at their home were opened up with a toast: A Negroni for adults and a Shirley Temple for the kids. Cin-cin (a shortened version of cent’anni), we would raise our glasses — To 100 years!

Most of us, when our elderly loved ones die, wonder if perhaps we’ll find a treasure buried in the yard or concealed somewhere in their house. We did find one after Nanni passed: My sister uncovered a letter that our grandfather, Dilma’s husband Pete, wrote a year before he himself died some seven years ago. In it he listed his chief accomplishments and highlights in life. All had to do with family. 

“I had a very good life. The good Lord gave me a wonderful wife and children. I loved her dearly… I couldn’t live without her.”

He talked about his two daughters: “They were a blessing. We were very proud of them. … The girls married wonderful guys.”

And when mentioning the highlight of his life, he again turned not to career, fame or fortune: “The height of my life was when I took my family to Italy in 1997.” He called it “one of the best things” he ever did and added, “with the help of Nanni.”

With the help of Nanni. 

One of the highlights of my life too, Popi!
Trevi Fountain, Rome, 1998
We have so much to be grateful for as we say goodbye to Nanni. With the help of Nanni we grew up loved, feeling valued, building character and knowing our roots. It is here we found our treasure.

It’s hard to glance at our lives here on earth and not physically see the human representation of our history such as Nanni and Popi. But we trust that this treasure they have deposited has been woven into the fabric of our beings. 

And as history moves on, we can only hope to fill their enormous shoes.

The following photos are from the last time we saw Nanni, summer 2018:

Tuesday, January 29, 2019

One week from surgery and we are back to almost normal! Which means no sleeping...

These bandages and pajamas - far behind us now!
Upon our discharge from the hospital the doctor gave mommy and daddy very explicit instructions:

"He (meaning me) can do anything he wants."

Ok so let me get this straight. I just came out from under the knife. My heart was stopped, cut open and repaired, placed back and made to beat again. But I can do whatever I want to do.

"If he has shortness of breath, he should stop whatever activity he is engaging in."

And then there's the issue of that red/pink line down my chest.

"Wash the scar every day. If you see any discharge, or if it looks infected come to the emergency room."

Ok, so what about school?

"Oh, that? No way. He needs to get permission from the surgeon first. Schedule an appointment to see him in a few weeks."

Ok, so again, let's get this straight: I can run, climb, be a general monkey and do "whatever I want/am able to do" but just don't go to school where I will be sitting for eight hours straight "resting" (except for my brain) rather than going stir crazy at home or climbing the walls there.

Perhaps that is because of infections and colds, but still. Let's not exaggerate.

Nevertheless as I embark upon my journey of recovery we sit here a week later in shock and awe. I occasionally need pain medication, but rarely.  I've stopped pointing at my chest and walking slightly stooped as I did those first few days. I've even stopped sleeping because, what with a a super-powered heart and all, I don't need as much rest as I did before.

Rest? Wait, I've never actually been one to sleep much anyway. I am on true hospital lag, meaning just a few hours hours of sleep can launch me through a long day with ease. Which really means that I am back to my pre-op self!

So physically I am charging ahead. Each day I look less and less like a human who has gone through surgery.

I can navigate the iPad as expertly as I did before the op!
Admittedly, I am a bit traumatized by the scars that are healing on my chest. They are a stark reminder that I really did freak everyone out, including myself, a week ago with record levels of stress in preparation for surgery.

Basically, if you saw me today you would think I were lying about OHS. You would think it was all a ploy to get your attention. The drama was intense and short lived and we never reached our worse expectations in terms of  potential complications and time in the hospital. Now, as we come down from the adrenaline that propelled us through those days, it's hard to believe it ever happened.

And from looking at me today, sans the scar, you would't believe it either.

I must thank you all for your prayers. With God's help I have powered through this sordid tale and am ready to surge on!

Friday, January 25, 2019

And on the third day, I went home already!

And now for the most shocking news of the week:

"And on the third day, they sent me home."
The (other) book of Daniel chapter 8 verse 8

Not 72 hours after my chest was slit open, my sternum broken and my heart stopped for some vital repairs, I'm walking back home on my own two feet with very few restrictions applied to my life.

It's a bit unbelievable, if not unnerving. With a fresh scar and still clutching my chest (whether in drama or in pain I have yet to reveal), I was released into the feeble care of my non-medical professional parents. They felt the same way after my dramatic birth and then after my first OHS and then after being hospitalized for RSV and later pneumonia and when they took home a flammable oxygen tank for me to sleep with over night. Who would release a child like this into the care of his mere parents? I would not.

But mommy and abba have been down this road before when mommy regrets not having gone into medicine.

The truth is that once we left the ICU we probably could've snuck out of the hospital for several hours perhaps to the zoo or a park and no one would've noticed. There was not really much observation going on in the regular ward. Suddenly mommy and abba were full-fledged nurses who had to ask for and administer my own medicine and were left to wonder whether I was showing normal signs of pain or the kind of pain that indicated CODE RED.

On the positive side, at home we will be free of crying babies and beeping monitors. We will not be bored out of our minds. But then again, mommy and abba will not sleep anyway since they'll have to use the non-technological methods of checking my vitals, like feeling for a pulse, etc.

On another positive note, at the ICU we took some
paparazzi photos with head nurse Knuckles McGinty!
The key to a quick recovery is to relax at the
ICU like it's a day at the beach!
(P.S. That blood collector attached to my body
is translated from Hebrew as: grenade!)
From the above picture to this one in 36 hours!
Theme song of the day:

Wednesday, January 23, 2019

Taking my recovery in strides ...literally

Rolling onto bigger and better things (or hospital wards)
I guess you could say I make OHS look easy.

Just 24 hours out from under the knife they were signing my release papers from the ICU, moving me to the regular surgical ward and encouraging me to Rise Up and Walk!

You have got to be kidding me. Twenty four hours after open heart surgery.

That was a tad mystifying to me as all I wanted to do was continue my drug-induced repose, but surely I will start utilizing these newfound suggestions to walk ... at midnight when my parents are trying to sleep.

Accompanied by my entourage as I leave the ICU behind.

In an effort to facilitate my swift exit from the ICU the doctors embarked upon a morphine induced removal of all my tubes and wires, something I was already trying to do since apparently RIGHT AFTER THE OPERATION. Being a child who doesn't need to sleep, ever, one surgeon reported that I woke up while still in the operating room and embarked upon a furious raid against those protrusions! I was immediately re-sedated and brought to ICU where I did a repeat performance just an hour later.

I am a warrior.

This time the doctors decided to do the removal themselves. I tried to help them by yanking quicker and faster, but they all agreed that was counterproductive. So with a little burst of morphine and some sort of relaxant I went limp and I stopped helping them. It took 15 minutes to unthread the wires coming from my heart, my neck, my sternum, my side and more. And with that I was ready for evacuation.

More than twice this amount of tubing
and wires was in my body.

Today was really a day of progress. A day to show the world the superpowers that we babies possess even as children. Our ability to bounce back astonishes the normal adult brain. There is even talk of releasing me tomorrow in order to set a world record! (Unverified) But most likely I will remain here for the weekend.

And then maybe I'll go run a marathon. That seems like the next logical step.

These guys miss me. And I likewise.

Tuesday, January 22, 2019

And now the Post-Drama begins

Cool, calm and collected. Pre-surgery. This did not last long.

And after a "short" and successful surgery I am doing exactly what my parents warned all the doctors I would do upon waking without rampant anesthesia running through my veins: Trying like HELL to pull out every single one of those 2,000 tubes.

Oh yea, and now the real games begin. The waiting. The monitoring of the monitors. The recovery. The breathing, or not. Me extubating myself (okay, I did not really do that, but I did pull out some horrifically fat tube from my nose), trying to rip out the newly sewn stitches on my chest. Things like that which tend to freak out parents worldwide.

Then there's the up and down of the O2 saturation. The fever that creeps up (in Celsius no less which is no help to mommy). All the little tremors that blip across my computer screens which the doctors tell my parents are irrelevant or are "lying" due to whatever else is happening that it must be measured by. So why are they there? No answer. Comforting.

Paddington made an appearance at the hospital! Which is largely ironic
since one of the nurses here looks like Knuckles from Paddington 2!
Waiting outside the operating room was a heck of a lot easier for my parents. It meant I was down under and I was in good hands. The repair was done well and I'm ready to surge again with blood flowing unchecked through my aortic valve.

I'm still in good hands with a crack ICU team around me. But the anesthesia is all done now which has created a dramatically less calm picture.

Here's how it went down. I woke up an hour after the OHS. I sat up in wild shock and horror and began thrashing around my bed. Eyes still sealed shut from exhaustion and a mouth full of dried blood, I was surely in some type of Gehenna. After wildly flinging off leads and swiveling around the bed, the team here heeded mommy and abba's suggestions of sedation. It seemed to benefit all parties.

Actually, pre-op was clearly fun and easy going as you can see.
And so I remain, under the influence. Occasionally I flutter my eyes with a gasping whine, looking for familiar faces. I threaten to thrash and then, after receiving reassurances that all is well, I drift back to sleep. I believe this will be my situation for a few more hours.

The truth is that all these little ups and downs probably mean nothing in the long run, but because my parents watch too much TV and because they are very bored right now just watching my drain pipes and IV drips, they choose to panic over every little beep.

They call it vigilance! Or, parenting.

And all will be well.

And I was feeling the love!