Double Negative = Bring it on!

I can do all things! = I can do whatever I want!
Or, no? Ok, I'll put the loaf of bread back. 

But I can paint like Picasso, should I choose!

Some of Society: A child with special needs may accomplish nothing significant in life. (NEGATIVE)

Some Doctors: Many milestones will be impossible for this child to reach. (NEGATIVE)

Me: Nothing is impossible! (NEGATIVE+NEGATIVE=POSITIVE!)

Except for my eloquent writing, I tend to keep my thoughts to myself. Sometimes, however, my obsessions inadvertently cast some light onto what I am thinking. And in one of these vast obsessions lies my response to all the naysayers and fear mongers out there.

This song, my anthem - and my latest obsession:

Very apropos, don't you think?

When mommy popped the new CD into the car stereo a couple of months ago, just to "check it out," I was immediately drawn to the first song, by Planetshakers. And we haven't moved on from there. It is literally the only song we hear while driving.

All.The.Time.

Lest I riot.

As soon as the last drumroll rolls, I'm already demanding, "Again! Again!" both verbally and in sign language for additional emphasis. If it is not replayed instantly, I may start kicking the seat in front of me. Abandon all caution while driving! Just hit repeat! The song must go on.

My obsession with this song is for good reason. I have connected with it on a deep level because the message speaks to me. While many say, you can't - sometimes even I say it - God reminds me, "YES, I CAN!" Because it's him who gives me strength.

This song pumps me up on the way to school and eases me back home in the afternoon. It accompanies me on my way to therapy. And it is an appropriate prelude on the way to ballet. I actually sing to it, quite "impossibly" finishing the word "impossible."

And when I have the opportunity to dance or drum to it, watch out world!

So, do you believe in me??

"'For I know the plans that I have for you,’ declares the Lord,
‘plans for welfare and not for calamity to give you a future and a hope.'"

Jeremiah 29:11

"Nothing Is Impossible"

Through You

I can do anything

I can do all things

Cause it's You who give me strength

Nothing is impossible

Through You

Blind eyes are opened

Strongholds are broken

I am living by faith

Nothing is impossible!

I'm not gonna live by what I see

I'm not gonna live by what I feel

Deep down I

Know that You're here with me

I know that, You can do anything

I believe, I believe

I believe, I believe in You

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Breaking News!

This just happened.

Yes. I've joined the world of academia's erudite intellectuals.  

A long time in coming. Perhaps too long (but no one will ever be sure). Nevertheless, after a long-awaited eye check up in May - a World War that required three adults to hold me down, one to peel my eyelids apart and another to calmly and accurately look into my eye sockets with instruments that require accuracy, precision and nerves of steel while I shrieked as if undergoing torture - both the ophthalmologist and optometrist dispatched us with a piece of paper that read: He needs glasses. Yesterday. 

Well, perhaps that paper contained numbers and other medical terms, but the end result was the same. 

After recovering from the trauma that was the eye exam, mommy now had to figure out how glasses would materialize for me, what our insurance covers and where, because naturally only one shop in the entire city works with our insurance company. But on a positive note it is across the street from us. But on another note, they don't have a wide selection. And the selection only got slimmer.

Instantly, mommy eliminated the vulgar brightly colored frames that scream, "I am a CHILD! Can you TELL?" And then she nixed the Coke-bottle round frames made of one piece of continuous plastic with no hinges whatsoever which scream, "I am a SPECIAL NEEDS child! And clearly everyone expects me to break my glasses so I got this unbreakable one-piece number! Can you tell??!!"

And so she was left with approximately one set of frames.

It took another World War to actually try on these frames because, as a rule, no one and nothing should ever touch my head and face: not your caressing fingers, not a brush, not shampoo and not ever a hat. And especially not spectacles that are pressed to my cheeks and strapped around the back with elastic.

Important questions remained unanswered. Which shape was best for my face? Which color complemented my skin tone? Which would stay on my tiny bridge? These were all questions only God could answer since I forbade any meaningful trying on of frames.

We left the store empty-handed.

After recovering from that trauma, and in a superb leap of blind faith, mommy just went back to the eye glass shop one day, without me, ordered the closest-to-tortoise-shell-plastic-nearly unbreakable glasses she could find. And that was that. 

Mommy enjoyed the ceasefire until the glasses arrived replete with prescription lenses. With World War 3 looming large on the horizon, Mommy took GongGong and myself to the store.

GongGong braced himself, knowing the tsunami that was to come. See, mommy waits for the grandparents' visits to schedule all of my most challenging medical appointments. Such as the ones that involve invasive probings into eyes and ears, blood tests, long commutes and much rebellion. They are her wingmen, her bag carriers, her crew to help simultaneously restrain and entertain me with song, dance and iPads. This enables her to ask serious questions and finish conversations with doctors without me threatening to delve into their surgical supplies and trash their medicine cabinets.

And while grandparents are usually successful, nothing prepared them - or anyone - for the horror that was the eye test and subsequent trying on of glasses.

As we arrived at the glasses store I started my backwards two-step to the exit, knowing what awaited me. GongGong braced himself. Mommy dragged me forward. Everyone in the store tried to convince me that these new lens were going to change my worldview. I vehemently disagreed.

Fifteen torturous minutes later, an emergency call was placed to abba who arrived with some sort of magical calming effect that no one can explain. I compiled almost instantly. Glasses went on. And I looked great! And I saw great, which apparently is more important!

In utter disbelief, GongGong leaned back on one of the chairs allowing his frayed nerves and elevated blood pressure to return to normal. Mommy started breathing again as her heartbeat stabilized. But both knew that only time and a bottle of wine would restore them to their pre-frazzled state, hours if not days later.

I for one was unfazed by the event. In fact, I've never looked back. But I did see better!

A whole new world to discover!

I still employ my sideways glance.

Ill-fated attempts at grandparents-grandchildren shots

But here's our first family shot with my glasses! 

And with my new found vision, I was able to bid
farewell to MM&GG as they sojourned back to America. 

Thanks for all your help refereeing my appointments! See you soon on the other side of the Atlantic.

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Honor Where Honor is Due - 90 Years Worth!

Me and my special Nannigenarian!

Today is a very important day in history. Today is Nanni's birthday! And not just any birthday of Nanni's and not just any day in our family history, but a very significant one: Nanni is officially a nonagenarian! Or as I like to call her now, a Nannigenarian!

That may be a big word for a little boy, but every syllable of the word and every second of these 90 years has had a direct impact in my glorious heritage. And for that I am very grateful. I love my great grandmother! (emphasis on "great") 

As great grandchildren, we bask in Nanni's presence - and vice versa

The thing about great grandparents is that the word "great" isn't just because they are great, which they are. The other aspect of the word great is how GREAT their great grandchildren are, according to them. If you ever need a confidence boost or some salve to a bruised self esteem (deserved or otherwise), grandparents are where you go to get that. If you ever need or want to feel near divine, great grandparents provide that just by basking in their presence as they bask in yours.

Here's the Law of Generations. The higher up in generation you look to, the greater and grander you as a child feel. We babies abide by this scale of positive support and self esteem:

1. Your parents = poor to average development of self esteem in child. (Common conversations are riddled with: "Stop! Come back! Don't touch that! I'm going to count to three!!!" 
2. Grandparents = grand to grandiose growth of self confidence in their grandchildren. It is common to hear grandparents telling people: "My grandchild is so smart, he/she will be a doctor/lawyer/astrophysicist one day! My grandchild loves music, he/she has perfect pitch and precise rhythm! My grandchild is gorgeous. But really! My grandchild is an angel, he/she can do no wrong."
3. Great grandparents = great to even grandiose proliferation of self confidence, self esteem and potential egotistical tendencies in great grandchildren. Commonly heard from great grandparents: "My great grandchild is actually an angel sent from the right hand of God. My great grandchild should definitely be in magazines. My great grandchild is smart, but I meant like Galileo, Davinci, Michelangelo and Einstein-smart. My great grandchild is the Babe Ruth of all sports! My great grandchild is a natural musician, Beethoven had nothing on him/her. My great grandchild has the world's most winning smile! My great grandchild lights up the world by his/her very existence!"

Or, if you get a C on your report card, you are a genius! Here's $10 and a piece of Gianduia chocolate! And your drawing, that haphazard, ragtag piece of scribbled paper that you gave me which is designed to resemble, um, something ... PICASSO you are! An artistic genius! And if you perform in the school play but forget all your lines, you are the next Cary Grant! And if you miss your free throw, you are Michael Jordan! And if you throw things, have a meltdown in public or stubbornly stop to the ground in protest and triple your body weight so as not to be moved, well, it's your parents' fault for not meeting your needs and anyway, you are actually an angel and whatever is happening is a lie!! 

When we invade NY, we try to hang with Nanni as much as possible

I do appear to be monopolizing Nanni

Naturally, great grandparents are very justified in their glorification of us. I mean, we are them! All of their goodness and their great genes have been seasoned on the way down to us. We look upon them with awe and respect because we know that they have worked to make a better way for us. And we get all the benefits! I'm musical - thanks to Popi. I'm a fashion template and an amazing Van Gogh artist - thanks to Nanni! I'm a gastronomical connoisseur - thanks to both (great) Grandpa and (great) Grandma, one a famous French chef and the other an anonymous yet amazing cook at home. And on the other side, I'm an intricate woodworker and medical expert! I am too good to be true!

And thus you get the great grandparent perspective/ego boost of the century!

I look to Nanni for more than just my genes

Nanni = unconditional love! ...

My motto in life is Shakespearean: "Brevity is the soul of wit." But "Nanni" is one of the few words I bother to say because she is very meaningful to me.

Unfortunately, an ocean is between us and now almost one year of literal face time (only slightly less of Apple-type FaceTime). But we live on pictures and memories and DNA to get us through the long months of separation. At least I know I have a delightful heritage!

...And lots of positive reinforcement in all my pursuits!

"The lines have fallen to me in pleasant places; Indeed, my heritage is beautiful to me."

 Psalm 16:6 

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Wandering in the Wilderness that is Spring Break!

Too cute to be true

After approximately 40 years, we are back!

Backpacks. check! Lunch, check! Ate breakfast, check! Donned actual
clothes, check! Brushed teeth and hair, check! Duly bored after a really
really long break, check! Back to school!

Passover is supposed to be a time to remember the Israelites' exodus from Egypt, a move which probably took a week or so as 1 million people packed up and left for a better environment and freedom.

But in modern times, the Israeli Ministry of Education celebrates what happened after the exodus: 40 years wandering the desert in an effort to get to the promised land. 

Yes, our spring break, which take place about two months before the end of the school year, seems to be designed to mimic the 40 years, not the actual seven days God commanded be observed for Passover. Being off from school for nearly three weeks stretched into what felt like 40 years in the wilderness with no promise or freedom anywhere in sight.

Attempt to give Lucas some culture and entertainment simultaneously.
Fail. (That's a genuine Van Gogh behind you, Lukie! Smile!)

Egyptians?? Pharaoh?? Success!

Lucas had the most days off, I had just two days more of school than he and Raia had a week longer. But nevertheless, within a few days, our daily lives had unraveled into an abyss void of routine, and even lapsed into negative routines.

Lawlessness. Boredom. Daily trips for desperate entertainment. Empty wallets. Utter lapses in personal hygiene. Sleeplessness.

Mommy and abba, teaming up with Mimi and GongGong, tried to keep up a consistent string of activities for us. Mimi and GongGong did the heavy lifting, sometimes planning up to two excursions per day to parks or gymborees. But of course, meals also had to be made in between our entertainment sessions and virtually everything came to a halt for Raia's nap each day around 1 p.m.

Accordingly, the entire vacation disintegrated into a pile of hyperactive children and weary adults. We as children have way more energy than adults. So while our outings were not enough to wear us out enough to sleep through the night, the adults operated on a deficit of energy and nerves.

Me practicing my ballet moves with my ballerina
(note the Nutcracker playing on the TV in the background)

And so you may conclude that we slept later each day especially since we had no reason to rush out the door. Nay! We woke up even earlier instead! Every single day. Sometimes at 5 a.m.! And we went to bed later every night, rendering each day even more interminable than the one before.

Thus the feeling of 40 years as each day dragged to its bitter end.

Eating random things at random times.

Basically all bets were off. Normalcy was stomped out, ground into fine dust that drifted away in the unseasonably hot desert winds that scorched us during this time.

Forty years of wandering. Wilderness. Desert.

Many days off = many parks visited

Raia spins a new tale

Hanging by a thread after a long vacation

Maybe a train ride will entertain us?

Maybe it will!

Play dates too!

And even a haircut, as you can see by my disturbed look

And, most endearing, a mid-break visit from Talya, my PA,
since neither of us could go that long without a date

When May 1 miraculously rolled along, we returned safely back into our daily routines, routines that involve us wearing clothes instead of pajamas and eating at regular times as opposed to 1. all day long or 2. not at all, which were our our preferred and vexing (to some) dining options during the break.

And we are happy to be back...

Back to harassing my PA at school

  

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How to (Survive) a Routine Blood Test with Your Child

No pictures were taken during the event in
question, the blood test...

For the same reason very few pictures are taken at restaurants:
Not enough adults hands are available!

Tips for better blood draw
Recommended blood tests for T21

Don’t let the word “routine” fool you - there is nothing routine about drawing blood from a child. Especially a cantankerous one with translucent veins. Such as myself.

Mommy knows that she should push for blood tests more often, at least every six months, as in my condition things such as leukemia, hypothyroidism and vitamin and mineral deficiencies can creep up unexpectedly. But as you can see by the sporadic posting on this blog, life gets the better of us and mommy doesn't have enough hands, brain cells or secretaries to stay on top of all of our divergent and ever-present needs. So she doesn’t fight for more than an annual blood test at this point.

The links show you how to physically prepare your child for the blood test. But the following list, composed by mommy and abba, shows how to emotionally and physically prepare yourself for my blood and other lab tests.

1. Get referral from doctor (preferably without child present). Go armed with list and printouts of all information backing up your reasons for requesting certain tests. Usually this type of research, if you are like mommy, must begin a month in advance and lots of time on Google.
2. Spend the next two weeks psyching yourself up for taking me to the lab.
3. After those two weeks, spend the following week coordinating mommy and daddy’s work schedules, school schedules, therapies, errands and praying that no cars break down or a child stays home sick one of those days.
4. Pack food for me for after the blood test. I dislike everything you serve me, but since I will have to fast that morning I will want to eat anything - before we leave the house and I will duly protest in the same manner I protest when you do try to serve me food.
5. On said day of the rush to the lab, pray that I pee in a cup. Prepare to spend up to 45 minutes plying me with water and the iPad while holding a cup precariously beneath me. Remember, getting stressed only causes urine to retreat into the body, so maintain your cool despite spending almost an hour in the bathroom while siblings are running around the house unfed and still in pajamas.
6. Give up and try again the next day. 
7. Three days later, after I finally urinate into the cup, rush off to the lab with raucous celebration.
8. Entertain me in the waiting room and then in the lab while waiting for the attendant to assemble all the flasks. Act cool like nothing painful or bloody is about to take place.
9. Pick a strategy: distract and entertain or coax and coddle. Neither work, but you have to pick a tactic. 
10. Two adults pin my body prone (or try) so that the needle doesn’t come out spurting blood around the lab. 

And yay! It’s over! And just like that, realize most of my tears were false.

11. Remove flask of alcoholic beverage from your pocket and down a few shots to calm your frazzled nerves. I’m fine by now and I don’t even want the snacks you packed!

You may spend the rest of the day feeling guilty that you didn’t do enough in advance for the lab worker to find my vein. Or that you didn’t hold my legs strong enough to prevent her from getting clocked in the groin by my foot. By accident. But at least you don’t have to worry about it until next year when a different guilt reminds you to do this all over again!

Remember the Law of Babies: Routine blood test = game of chess with your schedules, your emotions, your physical prowess and your fine motor skills with a pee cup. Don't kid yourself about routine.

And good luck!

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Shabbat Shiluv! Er, Shalom...

I put my own spin on a few of the Sabbath customs...

Every Friday, as we leave school on Friday for the weekend we say, "Shabbat shalom!" Peaceful Saturday, Day of Rest.

All very nice, but none of which applies to a house full of babies. "Day of rest" is better known as "wishful thinking" for parents of small children. The Ten Commandments of Babies address the day thus: "Remember the Sabbath to wake up even earlier than normal and be more stir crazy than usual and prevent your parents from resting." This is our way of keeping it holy. Can I get an amen??

But this week at school was a little bit different as I was Yeled Shel Shabbat (the Sabbath Child) for our own pre-Shabbat ceremony. This means that the proper greeting today was Shabbat Shiluv - Shabbat of Integration!

Integration works best when things, well, integrate. Like a great recipe where all the ingredients meld together for a single flavorful dish. Or an orchestra where various instruments, all different, make beautiful music together.

Definition of integration in education: "To bring people or groups with particular characteristics or needs into equal participation in or membership of a social group or institution: ex. integrating children with special needs into ordinary schools" thereby making those ordinary schools extraordinary. (I may have added the last part.)

Yes, a high calling rests upon our shoulders to bring these schools up to "extra."

Each week, one of us students gets to lead the Shabbat ceremony: blessing the bread and the wine/grape juice, lighting the candles (playing with fire!) and showing and telling what our families do on the weekend.

Here I am showing and telling along with Avi, my teacher

This week was my turn in the starring role. I donned a spiffy sweater, brushed my swirl into control and prepared my show and tell. I also introduced my own spin on certain traditions. For example, I symbolically cover my mouth instead of my eyes when praying. "Guard your steps as you go to the house of God ...  let your words be few." (Ecclesiastes 5:1)

Thankfully I am surrounded by a team that encourages me to thrive, starting from the principal Udi (who considers himself more 'pal' and less 'prince' and, to me, very much 'advocate'); my teacher Avi (who is actually a musician whose daily gig is to enthrall us preschoolers with music, Zumba and the most obscure facts such as what snails eat); teacher assistant Shula (who doubles as my life and acting coach and is the best hallah bread baker, who did a superb job today with mommy's whole wheat flour, by the way); and, last but never least, my personal assistant Talia (who doubles as my girlfriend, taking me on dates and caring for my intellectual and social well being during the day).

And then there is my fan base, better known as my friends - all the students in the class.

We all work together to create a better society. After each day of creation, God observed the enthralling things he had made and "he saw that it was good." And then, after six days of goodness, he rested.

May we too rest in the fact that all creation is good, if not great. And thanks to such camaraderie that creates a better society and a better me, we can have a Shabbat of shalom and shiluv.

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Welcome, Private! We are Your Family

Welcome, Private! (Theo!) He doesn't move much yet,
but he's well on his way to all sorts of baby exploits!

Impossible to get a non-blurry photo these days.
We are movers and shakers!

Non

Stop

Movement

A few days ago, before our new and first first cousin entered the world mommy reminded us of the gift of life and said that Zemmy (Zia Em or Aunt Emily) would be having Theo soon. But we babies set the record straight forthwith.

"No," corrected Lucas. "We are going to have Theo soon."

Yes. The cousins shall have him. We claim him. He is one of us. He is ours.

And now it has happened. Officially, Theodore Walter Boyd arrived to our world on Jan. 26, 2016 at 7:59 a.m. Zemmy did all the work but we all have him now.

Now we don't know much if anything (nothing really), about the birds and the bees. We do know this, however: We are going to have Theo. All. To. Ourselves.

We shall disciple him. We shall teach him the ways of babies. We shall pass on all of our natural and acquired wisdom to the new cousin, Private, as he shall be known to us. He shall join our adventures.

I know that with this statement Zemmy and Uncle Hart are trembling with fear, but are also relieved that we live so far away and may not be able to exert our influence on a daily basis (save for telepathically). But we are nonplussed. God has created each baby with an innate knowledge of "the code." Theo already knows how to be baby! He will follow in the path we have carved for him. And we will show up a few times a year to conference on how we can all enhance our baby skills.

A theory that floats about is that one's birth experience as a baby is indicative of their personality. Take our family for example:

• Me, Daniel: Extremely dramatic - Check!
• Lucas: Right on time but most painful - Check!
• Raia: Impatient and bulldozer-esque - Check! Check!

What does this mean for Theo and his birth? Slightly early yet extremely stubborn in actually  making his way down the hatch. Hours and hours. It can only mean good things. And good luck to Zemmy and Uncle Hart! That's all I can say.

Here is our official welcome to Theo and you can see how he fits perfectly into his new family in the following video starring Rico as Daniel, Skipper as Lucas, Raia as Kowalski and in his debut role, Theo as Private!! (As per Lucas and his observation... seriously he made the parallel a week ago after watching the movie.)

We are so excited to see how Private will participate in our shenanigans!!

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