Letters to God – Part 2: In The Beginning

source: http://touchpractice.com/the-brilliance-of-kindness/

Good night God. How are you? I’ve been doing fine since our last conversation (and while to have a conversation you need the other person to answer, maybe I’m getting answers but I have no “matching input device” to take them, so I’ll just assume we are having a conversation). The world hasn’t changed much, both for the good and for the bad. Sun is still shining, moon is still in its place, the sea hasn’t evaporated. Same as usual.

There are a couple of things I wanted to talk about today, hope you have some spare time.

Let’s talk some Torah (Bible) today. This week in the synagogue we read Parashat Bereshit, the first weekly bible reading, and also the first part of the first book of the Torah, which I always find to be a thorough treatise into human behaviour. It’s all there: lies, backstabbing, treason, murder, cheating, you name it. And all done by our great forefathers, read every week with awe, and taught to our children at school (somewhat censored, but less than expected). Every time I read it I learn new things. Great work man! I mean, God!

So let’s talk about Adam and Eve. Two interesting things came to my mind when reading Bereshit. First, you took Adam, put him in Gan Eden, and told him not to eat from the forbidden fruit. Did you really expect him not to eat from it? You are our father and we are your children, right? Adam was also your child, right? What you did is against every parenting 101 book (and as you are omni-know-all-something, you surely read all parenting books, right?). It’s like putting my girl in a room with a bar of the most delicious chocolate just sitting there in the middle of the room, and telling her that she must never, ever, eat the chocolate bar. Nope, won’t work. And as you surely know that, you are probably teaching us something. I’ll keep that in mind next time I put my girl in a room full of chocolate.

Second, after eating from the forbidden fruit, both man and woman hid in the garden awaiting for their father (you) to come and shout at them. The funny thing here is what they do: you say (my liberal translation) “WHERE ARE YOU”, to which Adam responds “heard you are coming and since we are naked, we hid”, to which you answer “WHO TOLD YOU THAT YOU ARE NAKED! DID YOU EAT FROM THE FORBIDDEN FRUIT?!?!?!”. And what does Adam say? “this woman you gave me, she gave me the fruit“. So you go on to the woman “WHAT IS THIS THAT YOU DID?!?!?” to which she answers “the snake made me“. Impressive! they just ate from the fruit a minute ago and they already learned one of the basic necessities of humans – having someone to blame for our problems.

So maybe that is your real task in this world, dear God? Are you here just so that we can blame you for all of the bad things that happen to us? It actually makes life a lot simpler. But I don’t believe this is the case, so the search will continue.

This letter is getting a bit long, but I just wanted to add another thing. Today I visited with my son a great place that helps families cope with tumor treatments (we go there after him having his chemo, and that really changes the color of the day). They have so many cool things for children: a playground, a petting zoo, art classes, music classes, you name it. But this is not the point. As I was there, a couple with a kid appeared and they looked really, really familiar. After 5 seconds of looking one at the other, she remembered that the three of us had worked together some 12 years ago. What a coincidence! And why is she there? she looks fine. But things were not fine. She was diagnosed with breast cancer 5 years ago and had been treated. After 5 years she was pregnant with twins and the cancer returned, and now a lot worse. So no more twins, and back to treatment. But she wears a great smile, talks positive, looks and feels very positive, with impressive energies.

So God, the joke is on you. And we’ll talk about this next time.

Letters to God – Part 1: Why?

source: https://christophermattix.wordpress.com/2010/06/10/the-dark-night-of-the-soul/

Hi God. Since you haven’t answered my prayers lately (or as some say, you have answered them and it is me that is not accepting the answer), I decided to switch channels and start writing to you here. I hope you are subscribed to my RSS feed since you are not my friend on FB and I didn’t see you as one of my stalkers followers on Twitter (but maybe your using a pseudonym). But people say you are everywhere, so this will surely get to your inbox somehow.

Ever since my son was diagnosed with a tumor in his brain, I’ve been asking myself (and you) one question: Why? I mean, I’ve been bad here and there (and there, and there…), but what has this child done? How can you explain this in any reasonable and comprehensible way? And if you are testing me, is he just “collateral damage”?

But hey, I have it easy. If I have learned one thing in the last couple of months is that the meaning of “good news” can get very, very low. Oh yes, it is a tumor, but it is treatable (“good news”). Not only is it treatable, but the treatment doesn’t cause  hair loss and stuff like that (“good news”). And I really have to say that we have been fortunate to have a lot of “good news” with my son’s treatment. So thank you God, if that was you.

But looking around, I see many kids that didn’t get so many good news. So many faces with no hair, tubes going out of their little bodies. Most of them wearing a smile, getting their chemo/antibiotics and watching TV or playing on a pad/smartphone. And these are the fortunate ones that sit with us in the day-care clinic. Those that stay for the night have a harder time. And some don’t make it.

And I ask again, why? Why all the suffering in this world? What are you trying to teach us? What do we have to learn?

I have so much more to say, but this letter is getting long and research tells us that most people will never read to the bottom of the page (are you like that?), so I’ll leave some more for next time.

And then the Sky Came Tumbling Down

Back in January, the school nurse saw that my son was having trouble seeing from one of his eyes. So what? I have glasses, my mom has glasses, my sister has glasses. So my son will also need glasses. But he never complained, and since my eldest daughter also had some eye problems, we decided to take the kit to an expert.

Forward to the beginning of May, eve of the Israeli remembrance day, we are in the office of Dr. A, who is an expert children eye doctor (or however they are called). He checks, double checks, and yes, he doesn’t see well from one eye. That’s an understatement. Actually he can’t read the upper line in the table the eye doctors have in their office (those with letters and numbers). But after checking, and re-checking, he tells me that the eye looks fine, so we should start neurological investigations. I came home beat, and just in time for the alarm that marks the beginning of the remembrance day. We put the kids to sleep and sat down to talk. My wife’s mother had a tumor in her brain that had damaged her eyesight.

We decided to get the opinion of another doctor, this time Prof. B who is the head of the eye department of the local children’s hospital. The wait was short and we saw him on Sunday the next week. Again, the kid doesn’t see the big numbers/letters. But now the doctor sees that his pupils react differently. Definitely neurological. Go and get an MRI done. And quick. And if you don’t get an appointment fast, please call me and I’ll send you through emergency.

Withe the help of some great friends, we managed to get an appointment the same week. Tired and nervous, praying for good new but expecting bad ones, our son was put under full anesthesia (It’s hard for kids to stay still inside an MRI tube) and after one hour, he was back outside, doing a very rough awakening (it took him almost one and a half hours to recuperate). At the same time, the MRI was being analyzed by the doctor. The bad news came then:

There’s a big “space-occupying lesion” (SOL) in the middle of your son’s brain and it is bothering his eye nerves. And it’s big. Please go right now to the hospital. I’ll call them and tell them about your case

Thursday, 6 pm (In Israel this is like Friday) we arrived at the hospital emergency room with the MRI results and feeling the world falling below our feet. After waiting for an hour to see the nurse, we were derived to neurosurgery. The on-duty doctor was called. We were asked to put the child in hospitalization for “observation”. Exactly what are you going to observe at the weekend? The kid is completely fine, except for having something abnormal growing in his head! So pictures were exchanged, calls were done, and we came home, beaten, tired.

Oh, how we plan our lives, and how G–d changes all our plans :-). Enjoy life. Enjoy each day. And say thank you for everything you have. Doesn’t matter if you believe in G–d or not. Just say thanks. I am thankful for everything I have. A great job that is supporting me in these hard times, a family that gives me love, many friends who care, help, and are just there when needed.

And if you do believe in the power of prayer, pray for my son. While the doctors are very optimistic in their prognosis, life is full of surprises. I can assure you of that.

A Ray of Sunlight

It has been a month (more or less) since we started this new part of our lives. So many things have happened it’s sometimes hard to remember what we did yesterday, what’s the day of the week, which doctor/hospital we visited yesterday. That is why I love to write things. It dumps stuff from my brain and makes it easier to think.

So let’s do a recap and see where I left last time. So we came home and my son was not hospitalized. Yea, that is what I wrote. I’ll start from there.

We came back to the hospital on Sunday (first day of the week in Israel) and were greeted by a nurse whose job description is “child brain tumor coordinator” (just the name hurts). She was incredibly nice, took my wife over and talked to her, and explained what we were going to do in this first day. She explained that we didn’t have to hospitalize the kid (at least not yet), which made us happy since we sleeping in a hospital can be a traumatic experience for both the child and the parents. My son did some blood tests – they took like half his blood, but he did everything like a brave man. They took us in and explained to us what they thought was in our son’s head and that he had to do a spinal MRI to check that there was no dispersion. As our last MRI experience was not so good (recuperation was AWFUL!), we were a bit wary. But the nurse talked to our son and asked him if he would be able to stay still for 20 minutes inside the tube, that she saw he was a big man, and this should not be a problem. He agreed to try.

So we went home and the next day got a call that we had a turn for an MRI the next day at 5 am. That was fast. So we woke up at 3 am, drove to the hospital, and hoped that Hanoch was able to stay still inside the MRI tube… Impressively, he stayed still! Even the radiologist was impressed. What a relief! We went back home to get some sleep, and at 2 pm got another call from the nurse – you have another MRI today at 9 pm. So sleep fast, find someone to take care of the other kids at home, and go again to the hospital. We came back at around 12 pm and fell on our beds.

The next day (or the day after, but time gets somewhat blurred here) we had a meeting with the doctors to hear what they thought we should do. The MRIs came back with some small spread in the lower back, but this was typical of this type of tumor, so no need to get panicked. But we are not completely comfortable with the MRI pictures, they said. While we clearly think this is a tumor of type G, we are not 100% sure and would like to do a biopsy. This is done by opening a hole in your son’s head, inserting a needle, and getting a couple of cells out. And we can do this tomorrow if you want.

WHAT?????

Completely shocked, we said we wanted to hear a second opinion, and that we didn’t want to rush if this wasn’t necessary. They said that we didn’t need to rush (so why do the biopsy the next day!?#$%#@). Anyway, the same day, by way of a miracle and some help from the doctors, we went to the best child neurosurgeon there is here in Israel. We got to him the same day in the afternoon. Looking at the MRIs, he agreed that something was not regular in the tumor and that we should do a biopsy. But not a needle biopsy but a full-blown craniotomy – basically open his brain and get as much tissue as we can to better understand what’s in there. A needle biopsy may not be good enough. My wife stopped breathing like for five minutes when he said this. But strangely, this guy made sense, he looked sure of what he was doing… and he has charisma. So funny enough, we thought his idea was good.

But we wanted to get more opinions, so we sent the MRIs flying around the internet to anybody who could help, went to more hospitals here in Israel… And one friend of ours managed to get them into the best children hospital in the world (let’s call it hospital H), where the case was seen by the best team of child neuro-oncologists there is. After some days (cases are analyzed by the team once a week), our friend was told that they didn’t think we needed to do a biopsy. But they never wrote this down and all our emails went unreturned. We kept on writing them, but no answer came back.

And at this stage, the neurosurgeon that proposed the craniotomy changed his thoughts and also said we should do a needle biopsy. We went to see another oncologist and she said we could start treatment without doing a biopsy, or we could do the biopsy. But there was always the risk that the treatment would not match and we would have wasted time.

CONFUSION!!!! Where is the risk management? Did someone compare the risk of a biopsy against the risk of treating for the wrong tumor? After reading many papers, we understood now (once again) that medicine has more unknowns than knowns. And that doctors could not calculate these risks. Each case is special, each surgeon has his own statistics, and there are not enough numbers to do real statistics and probability calculations. This is very hard for two hard-core engineers like my wife and I. So we went with the biggest consensus, and set up a turn for the needle biopsy. But things still didn’t “close” for us, and the opinion from the hospital outside Israel was nudging in the back of our heads.

Time is running out and we have the biopsy next week. On Friday we decided to call the head of the child neuro-oncology department in hospital H… And who would have thought… he called back! After a half-hour talk with him where he explained to us that his team saw the MRIs and that yes, it looks like a “typical” tumor of type G. We see no need to do a biopsy, since we know how to treat them and in the worse case, if after 6 months of treatment nothing happens, then he would recommend a biopsy. And from his experience, in most cases, it is simply the expected kind of tumor, just that it doesn’t respond to regular treatments. And then please call us, he said, because we have already mapped most of the mutations of this tumor, and have very advanced treatments in those cases. But in your case, I would not do a biopsy. And wrote all that in an mail. And he is the biggest expert in the world.

So on Sunday, we ran to the local hospital to show this to the oncologist we want for our kid, and yes, she agreed that we can start treatment without biopsy. No problem canceling the biopsy. Let’s get things running.

Next week they are inserting a Port into my son’s body and will start treatment when he recovers from the operation. Wish us luck.

Revolution

I bought a Rainbow Loom for my daughter a couple of months ago. If you have kids and haven’t been hiding under a rock for the last couple of months, you’ve surely heard of the Rainbow Loom, which is a very interesting plastic contraption where you can create bracelets with small rubber bands.

As expected, she started very nice bracelets, at first simple and single-colored, but with more time and practice the bracelets became more and more complex, with multiple colors, designs, sizes, etc. She made bracelets for all the family… twice :-).

And one day I came home and she was not doing bracelets anymore… she was doing this:

That’s a strawberry, a banana, and a pencil. Where the heck did she learn to do this? One simple answer – YouTube! She also did an angry bird, a sword, and many more things (I’ll be adding more pictures later)

This got me thinking… This is a revolution. Actually not one revolution but many. Sites like Coursera, EdX, and even the “simple” YouTube are the new printing press, passing knowledge to the masses. And anyone can become a teacher. This is a lot better than the printing press because the starting price of publishing a video in YouTube is very low – just a camera and an internet connection. Probably under $100 using a reasonable quality phone. This is the publishing revolution.

And the second revolution is from the consumer side. Anyone can sit in his home, open his computer, and start learning. From mathematics to social sciences to philosophy to… Rainbow Loom. And you can be of any age and of any gender and of any race. Schools are going to need a radical change. Also universities. And this is a good change that was waiting to happen for a long time.

We definitely live in very interesting times.

Easy to Make Rice Milk

My wife and I go to great efforts to provide our kids with the best nutrition we can while at the same time maintaining sanity in the house (and also a budget – so organic chicken and beef is definitely out). My wife breast-feeds the kids fully for at least half a year and after that (when she goes back to work) they drink expressed milk and complete the diet by eating whole rice, oat, kinoa and other types porridge. When our first child was born, we also started to supplement the breast-milk (when it became scarce after a year give or take) with rice milk, adding kinoa, oats, and almonds, making it a very rich and nutritious food. In those days I had lots of time, so I make the milk by cooking it for many hours on low fire, then passing it through a cheesecloth. Oh, I really had a lot of time. With the birth of our second child we bought a soya-milk making machine and made our rice-milk with it, but it was pretty hard to clean and also required some work.
So now that I have 4 children, I really don’t have much time… but on the other side, I still want to give them home-made rice-milk to eat with their morning cereals (granola), instead of drinking cow milk (a known mucus creating agent) or rice-milk sold in stores (expensive). So I devised this very easy rice-milk recipe, which takes no time, all cooking elements can be washed in the machine-washer and gives you the best of both a sane an healthy world.

Rice Milk
Ingredients (for 1.5 liter of rice milk. Take into account that the milk goes sour after 5-6 days):

  • 1/4 cup whole-grain, organic round rice (the best taste. Basmati tastes horrible).
  • 1.5 liters filtered or mineral whater
  • A good blender
  • A medium size strainer
  • A container for the milk
  • Heavy-bottom pot with good closing lid

Instructions

  1. On a heavy-bottom pot that has a good closing lid
    pour in 1/4 cup of whole-organic-round rice
    and 1.5 cups of water.
  2. Bring to a boil.
  3. Transfer the pot to a low heat cooker
    (preferably use also a heat diffuser on top of the cooker)

    and cover with a lid.
  4. Cook for 3-4 hours, stirring once in a while to prevent the rice from sticking to the bottom of the pot. Pour more water into the pot if the rice has absorbed all of the water. You should stop cooking when you add more water and the rice doesn’t manage to absorb it.
  5. Using your standard blender
    pour the rice porridge into the blender
    add water up to the top of the blender’s jar
    and blend for a couple of minutes.
  6. Pass the contents of the blender through the strainer.
  7. And finally, pour the filtered milk into the final container.

That’s it!. You can now enjoy your freshly cooked rice milk.
For extra taste (that children like), you can some sugar (brown, of course) to the final mix or to the blender. For more nutritional value you can add kinoa, oats and almonds. Just take into account that kinoa gives the mix a very strong taste that kids may not like.
Enjoy

The Desert

What a beautiful place. The silence, the toughness of all the rock around, everything in the same brown color, but not quite the same color.
The desert is all around us, inside us. It is us and we are the desert.

Come to the desert. It’s a wonderful experience.

Jetlag

We arrived last friday from Argentina: 1 hour drive to the airport, 3 hour wait at the airport, 2.5 hour flight to Sao Paolo, another 3 hour wait, 12.5 hour flight to Tel Aviv, 1 hour to get the car, pack everything and 1.5 hours to get home. Add to this 3 small (< 6y) kids and you can imagine the picture (if you don’t, read this again after you have some).
We are tired, jet-lagged and of course the kid’s biological clock takes some time to adapt, as you can see by my little one’s picture at about 2 in the morning today – eating tuna fish.

Now, at 3:54 I think she finally fell asleep.