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!

Follow @nic_jansezian

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.

Follow @nic_jansezian

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!!

Follow @nic_jansezian

Redemption is still born in Israel

The schools here are pretty cool!

(Guest blog today by mommy ... I, Daniel, am on Christmas vacation!)

No room at the inn. Was it mere coincidence or sheer irony that we as a Christian family living in Israel were facing this very issue at this most wonderful time of the year?

No room. That was the response some 2000 years ago in Bethlehem, not far from where we live in Jerusalem, that Miriam and Yosef (better known as Mary and Joseph) encountered when they were looking for a place to sleep, plus give birth.

Fast forward to now. We live in Israel and our three children attend Israeli schools. We have no problem with our children learning the “Jewish” holidays. They are the Lord’s feasts, as He said, and they are very much a part of our Bible and our faith as Christians.

Realistically speaking though, we are somewhat limited when it comes to schools. Sure, our children can attend secular Israeli schools, but perhaps not religious ones. And so when one of our babes had to transfer to a new gan (preschool) we began to feel the squeeze.


With the help of a Ministry of Education counsellor, we have been looking for a new place for him for about a month. However, we have repeatedly heard these words: Ein makom. There is no room.

As wonderful as our neighborhood gan is, our son was struggling. He was the youngest by months of a mixed-age school with disproportionately more kindergarteners (17) vs. preschoolers (6).

Yet, despite having an advocate from the Ministry of Education, and despite being in the capital city of Israel, it took a month to find one suitable school in all of Jerusalem.

Being the holiday season, I thought of the holy family, sojourning across the rugged terrain of the Middle East and then, “in the fullness of time” (aka: 9 months pregnant and in labor), the only place they found as a delivery room was a stable.

I know, His ways are higher than ours (Isaiah 55:9), but…

A stable in which to give birth to the Messiah? Would God allow that?

I wondered what makes us any more worthy in our pursuits. If no acceptable space was offered to the Son of God, if he was not welcomed anywhere else but in a stable, who am I to expect more?

And yet, redemption was born nevertheless. Both to the world 2000 years ago and yet again now, to us. With open arms, one of the city’s exclusive schools offered us a meeting this week and then a spot for our child. For us, a Christmas miracle and a joyous end to an emotionally draining journey. It was worth the wait and we have much for which to be thankful.

Redemption is still born in Israel today. And it is worth every step on the arduous journey for its joyous arrival.

Merry Christmas!

For a child will be born to us, a son will be given to us;

And the government will rest on His shoulders;

And His name will be called Wonderful Counselor, Mighty God,

Eternal Father, Prince of Peace.

There will be no end to the increase of His government or of peace,

On the throne of David and over his kingdom,

To establish it and to uphold it with justice and righteousness

From then on and forevermore.

The zeal of the Lord of hosts will accomplish this.

Isaiah 9:6-7

Follow @nic_jansezian

Baby's First (Cognizant) Christmas

It ain't Rockefeller Center, but it's the best we got (Jerusalem YMCA)

Getting all geared up for the big day!

It's actually her third Christmas, but this is the first time that Raia has any conscious grasp of the holiday. For her first Christmas, Raia was 6 weeks old, smaller than a stocking and was still supposed to be en utero another three weeks. Hence, she was oblivious to anything but milk.

Raia spent her second Christmas suffering from jet and baby lag as we celebrated in NY having arrived a week before. Christmas was more like an appetizer for Zemmy's (Zia Em) wedding than a holiday in itself that year. And Raia slept through the main part of the day which includes opening the presents that awaited us under the tree.

But this year was different. Preemie no longer, Raia now manages several spheres of influence in the world. And thus she was all ready for Christmas this time around.

It all started with decorating the tree. She didn't just participate, she owned the tree decorating. She hung dozens of ornaments (on the same three branches) while Lucas and I grew bored and tried to break them.

Then she fully dove into our Christmastime tradition of watching The Little Drummer Boy every night before bed. We line up on the sofa for our mini-movie and repeat words like "frankincense" and "crystalline." Afterwards, Raia stands, bundles up her blanket in her arms, turns to the tree and says, "G'night Christmas." And she heads to bed.

Raia also vociferously participated in making gingerbread cookies this year. Mommy, trying (and failing) to outsmart us, attempted to take us separately to cut and decorate our own cookies in order to mitigate a disaster while enhancing our fine motor skills. However, Raia was present for each cutting and decorating session, impossible to extricate from the kitchen. Every cookie has her fingerprints.

I was chosen and anointed by God to place the star atop the tree

He was jealous

Nevertheless, we are working against the tide regarding holiday spirit. While you in the West are wishing everyone a Merry Christmas and angling to leave work early on Christmas Eve, we - 3 miles from the very birth of Jesus - have zero sense that the holiday is lurking out there auspiciously on the calendar. Tomorrow.

It is a regular work week here. There is no wind-down to vacation. No lights on the apartment buildings. No music in the stores. It's all a bit anticlimactic.

And as Lucas noted, "There's no snow!" Yes, welcome to the Middle East, my son.

In fact, tomorrow is a full-on day of normalcy including schools and shops operating an open house at a school my parents must check out for us for the future (registration begins in no time for next year).

Hence, and since we are all still babies to some extent lacking in cognizance of calendar days, we shall officially declare Friday Christmas Eve and Saturday - Shabbat and a day of hushed traffic and shuttered shops in Jerusalem - Christmas! And we babies shall be none the wiser!

Every day for us babies is like the movie Groundhog Day. Whether a holiday or a weekend, we arise in utter darkness at 6, the latest. We don't know sleeping in and we don't know calendar dates. As far as we are concerned, you rally us to get ready for school or you don't. And then, for mysterious reasons, such as "the weekend" or "holidays," we stay home.

So we would have no idea if holidays were on a certain day. Christmas could be in July. You say it, we believe it.

But most importantly, in an effort to ease her guilt at faulty parenting and to ensure that we have the right idea of what's going on here, mommy randomly asks us why we celebrate Christmas or who was born on Christmas. To which, (to her relief) we answer, "Jesus!" Whew.

So as we prepare to celebrate, Merry Shabbat and Christmas Shalom!

Follow @nic_jansezian

'My Three Sons' no Longer!

Which one of these is not like the other? Answer: All of the above!

Xena, warrior princess, on her noble steed.
Watch out world!

Steel yourselves for a barrage of gender stereotypes because that is exactly what has bombarded us in the last few months.

Up until recently, mommy lived by two axioms:

1. That babies are more or less genderless until well after their first year. They exist to eat, sleep and be cute. Some Most babies are horrible sleepers and some eat better than others. But those aren't gender traits, rather just baby foibles. 
2. That she herself was mother to three sons. This was an assessment based on behavioral patterns of hyperactivity and destruction typically, if not unfairly, attributed to male children.

That was until Raia turned 2 years old and subsequently turned up the dial on stereotypes. 

All the way to DEFCON 5.

It all began around Raia's two-year mark one chilly autumn day as we dressed for school. "Sandals." Raia stated emphatically. 

"But it's cold outside, we wear sandals only in the summer," mommy reasoned.

"Sandals." This was no question or debate. Merely statement of fact. "Sandals."

"Sneakers." 

"Sandals!"

"Boots?"

"SANDALS!"

Yikes!

It used to be that Raia was the third wheel in our sibling schemes of wreaking havoc. And while she still climbs like a pro and throws anything in her path, she has begun to carve out her own path on this twisted trail we blaze together. And now her gender orientation seems to be on a clear trajectory toward several female stereotypes:

• Fierce, not-to-be-tampered-with (or assisted) fine motor skills
• Opinions with regard to fashion (including and not limited to socks and underwear)
• Independent eating (and thereby independently creating a big mess)
• Independent dressing (refusing any assistance therein, despite failed attempts at clothing oneself)
• Independent grooming (do not even think about helping her brush her teeth and wash up!) 

It is through these few items that mommy and abba are starting to understand yet another divergence in raising us three babies. Lucas and I will let anyone feed or dress us. You want to spoon bites into my mouth when the only action required of me is to part my lips? Sure, go ahead! You will pull off my shirt and replace it with another while I partially stiffen my limbs in a meager attempt to help you? Don't let me stop you! 

We live the life of leisure and we love it. We will take advantage of this as long as we can.

Raia, on the other hand, demands to do it all herself, even though her desires and her abilities aren't yet on par. Try to help her get dressed and risk a tantrum the size of China. Try to feed her, but duck as she swats the utensil right back at you. Try to lift her into her car seat - and brace your back for her trademark deadweight succumb-to-gravity plank that will be sure to rip the muscles out of your back!

We are all aware of our individuality and our special differences and character traits, all of which trump gender. But suffice it to say that Raia is redefining child rearing in our home lately. 

Never a dull moment over here! 

Do not help me eat my doughnut!

Do not help me eat my cake!

Center of attention, anyone?

Follow @nic_jansezian

Happy International Day of Persons with Disabilities!! Who knew?

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

Follow @nic_jansezian