19?! Wow…

Today we remember Nina who would have been 19 today. Impossible for me to really imagine her at 19 since she didn’t live to 4, but here she is on her 2nd birthday in her new dress from a friend of grandma’s in Kenya:

Nina 2nd birthday in her new birthday dress made by grandma’s friend in Kenya

I woke up this morning remembering what an intense day this was 19 years ago and the intense week that followed. We knew she had hydrocephalus and that she’d need a shunt in her brain to relieve the CSF pressure, but we didn’t know she’d be in the neonatal intensive care unit (NICU) for a week and we definitely didn’t expect all the other medical challenges she was born with. Nor did we expect the three other major surgeries she’d need in that first year (spinal cord surgery, intestinal surgery, eye surgery).

It wasn’t until a couple of months before this picture on her 2nd birthday that we finally got a diagnosis of Fanconi Anemia (FA), and some idea of what to expect for her as a result. Up until then it was a mystery to her doctors. Unfortunately, that expectation was likely a short life due to the type of FA she had. She had a pretty great year from this birthday through the next one. And then a month not so great due to brain surgery to remove a new tumor, but then a really great summer of family visitors, and good early fall before her decline and departure.

Outcomes are much better now for people with FA, but it’s still tough for many. These improvements are largely thanks to the efforts of researchers supported by the Fanconi Anemia Research Fund (FARF) and all the family and friends who’ve raised money for them to fund research over the years (including ours). Much of this research has shed light on, and improved treatments for, cancer as well as FA due to physiological pathways in common between the two and the higher determinism for FA.

Anyway, it’s been a long road, but we feel very lucky to have had Nina in our lives for part of it. Hug the ones you love.

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Blast from the past: “Bedtime conversations tend to be a little goofy when Dad’s doing lights out….”

Cleaning up an old family website (pre blog) for sharing stories with out-of-town family and found this bit of goofy-dad nonsense that made me laugh so I thought I’d share it:

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Bedtime conversations tend to be a little goofy when dad’s doing lights out….

A discussion of wavelengths of energy and radio astronomy leads to the following: 

Geek: How do you see things with xrays and radio waves?

Dad: Well you could look at the signals bouncing back. Where there is nothing you get no bounce-back, and where there’s a planets or moon or something you get a bounce back. How long it takes to bounce back tells you how far away it is. Longer wave lenghts show less detail than shorter wave lengths (long discussion of why).

One time there were these astronomers trying to discover new planets and they decided to create a gamma-wave telescope.

Geek: Did they find any?

Dad: Well, they thought they had, but things were kind of strange…. 

So then they sent gamma rays towards this one spot and they got ultraviolet waves back!

“That’s funny” the astronomers said to each other, “let’s try xrays.”

So they shot some xrays towards the same location… this time they got back radio waves! 

Geek: “They did?!”

Dad: “Yep!”

After trying to understand what kind of astronomical body could turn their xrays into radio waves of the frequency and waveforms they’d received back, someone got the idea to play the radio waves through a speaker. Boy were they surprised to hear “HEY! No Peeking!” coming out of the speaker!

(Geek breaks out in laughing!) 

“WHAT!??? said the astronomers. 

They sent back a radio signal on the same frequency saying, “Sorry, we didn’t know anyone was there!” 

They got a message back saying, “You didn’t? Didn’t you see my sign?”.

“What sign?” the astronomers sent back. 

“Check the ultraviolet signal we returned when you sent all those gamma rays,” was the reply. 

So the astronomers took the ultraviolet signal they’d gotten back and figured out it was a sign saying “Bob’s Spaceship Repair Shop.”

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The next several nights we’d hear “HEY! No Peeking!” coming from Geek’s room followed by lots of laughter so I guess it was a lasting laughable ™. 🙂

Aug. 2004. (Geek was 8)

Game for getting your child to dress themselves in the morning

Here’s a game we used to get Geek to get himself dressed and moving in the morning.

I’d lay his clothes out flat on the floor to make a path of clothing from his bed to the door of his room. Then tell him that the game was to see if he could make it to the door getting dressed as he went without touching the floor. When he picks up a piece of clothing he has to put it on.

The first day they were in a mostly reasonable order – one that matched the order you’d put your clothes on. When he completed that successfully I congratulated him and said that tomorrow would be more tricky (build anticipation for getting out of bed and getting dressed! 😉 ).

The second day the order was such that he had to hop past some pieces and then jump back and then jump forward in order to get the underwear on under the pants, for example.

And you can increase the difficulty to get it interesting. One day I made it essentially impossible and we laughed a lot and then I asked him what two items of clothing could switch with each other to make it possible (teaching programming/algorithms/puzzle solving) and then did the one he picked so that he could get out the door.

Didn’t take long before he was in the habit of getting dressed and moving in the morning and was fun instead of a struggle.

10 year old Geek explains why he does what his parents ask…

Posted this on Twitter but then realized that goes away and this is funny enough I wanted to keep it around.

 

 

In case his 10-year-old writing is hard to read,

“I have to do what my parents tell me because they are insane and their doctor told me to humor them.”

😛

None of us remembered this but it was found during our move and gave us all a laugh.  Creative rationalization.

 

Why Science Fiction?

Neil Gaimon on Science Fiction:

I was in China in 2007, at the first party-approved science fiction and fantasy convention in Chinese history. And at one point I took a top official aside and asked him Why? SF had been disapproved of for a long time. What had changed?

It’s simple, he told me. The Chinese were brilliant at making things if other people brought them the plans. But they did not innovate and they did not invent. They did not imagine. So they sent a delegation to the US, to Apple, to Microsoft, to Google, and they asked the people there who were inventing the future about themselves. And they found that all of them had read science fiction when they were boys or girls.

So, maybe encourage a little Science Fiction in your child’s menu of reading material.

I probably don’t have to say this, but introduce your daughters to science fiction also. There are some great female science fiction authors  and there’s another list here.  Dad finds that female authors seem to be a lot more likely to include strong & smart female characters that have depth and are thus more interesting.  Peace.

Teaching Kids (and you!) to program

Just ran across a tweet about code.com which not only has some interesting learning tools on it, it has a great list of references for learning and teaching programming.  In particular the Code Academy page.

I’ve been asked by parents a number of times how I taught Geek to program so young and what they could do to help their kid learn to code.  This seems like a good place to start.  Geek started with StageCast and then Scratch and then moved on to Python.  I’m not sure what StageCast looks like any more (that was a long time ago for Geek), but all worth checking out.

 

Quick “play baseball with 3 year old” tip

Was just reminded of doing this:

To play baseball with littler kids (3 in our case) use a blow-up beach ball and a waffle ball bat.  The hollow plastic waffle ball bat is light weight and low enough mass to not hurt anything much.  Works great indoors and the big ball is easy to hit and a one-bounce serve works nicely. Good winter “baseball” with littler kids.

Today we remember Nina – it’s her 9th birthday

Today would have been her 9th birthday.  Amazing to think it’s been so long since she came into our lives.  Geek & the Mom are off to a Track meet today and I can just picture how Nina would have loved going with them and how she would have been zooming around at the meet saying “I’m running so fast!” in her oh so cute voice because she always wanted to be like her older brother who she loved so much.

She loved to do Taekwondo in the waiting area while Geek was in his Taekwondo class. Here’s a page with a funny 20 second video of her mimicking/practicing Taekwondo kicks during grocery unpacking and put-away time (this was totally her idea).  She sure wanted to do what her older brother Geek did!

And here’s a fun picture of Nina on Christmas morning 2005 (her last Christmas with us) playing with one of Geek’s presents:

Geek did a DoJump! summer class (highly recommended, as are their performances) and he really liked the various juggling activities, so he got this spinning “plate” kit and a set of juggling scarves for Christmas that year.  Of Course Nina just had to be like him and figure out how to spin that plate (way too challenging for a 2-1/2 year old, but that didn’t stop her from spending a lot of time working at it! :-)).

And, Yes, that’s one of Nina’s two baskets of books in the background – like Geek Nina loved to read just like her older brother 🙂  (we were, and still are, very grateful for the amazing Multnomah County Library).

Tax deductible donations in her memory will help find a cure and improve treatment options for others, not to mention more broadly aiding cancer research:  http://fanconi.org

Thank you. -Dad

New teaching skills strategy

I grew up making things.  Helping my step-dad and his brother build our house; helping my dad build a big extension on his house.  Plumbing, electrical, ditch digging, carpentry, and design (both dads are architects).  We had a “shop” at both houses; mostly a wood shop with some mechanic type tools. Step-dad was also handy fixing cars, which was useful given the old used cars we mostly had back then.  I also had to learn to fix my first car (only cost $250!) which  towed to our place because it didn’t run when I bought it.

I’ve wanted to get Geek more hands-on with tools and into the shop but the truth is I haven’t done a good job of it, sadly.  I’ve been struggling to figure out why and how to get better.  I found it difficult when he was younger but now that he’s nearly 15 (!) I think I finally figured out the strategy:  I’m not allowed to hold any tool or workpiece for more than 60 seconds.  If I’ve held it longer than that then I’m failing.  Also I asked him to ask for the tool back after I’ve done enough showing if I forget and keep going.

This was very difficult for me at first.  Patience is something that doesn’t come easily for me and usually I have 20,000 other things to do so I want to get the current task DONE and move on.  But now I simply get Geek to help me fix anything that needs fixing or make anything he wants/needs, and the 60 second rule applies.  It’s working great so far (3 projects – he even fixed the kitchen sink drain a couple of nights ago!).

Now patience is still a challenge; when he’s making something in the shop I often have to have my own interruptible project that I work on while he’s doing some steps on his because I seem to be unable to just stand there doing nothing (ok, watching) for any length of time.  So we’ll talk about the next step in the project, I’ll show him the tools involved and how to use them, then I’ll watch as he starts to use the tool to see if I can offer any tips.  Once he seems to have it under control I’ll step aside and go clean up a corner of the shop, or fix something laying around in the shop awaiting my attention – doesn’t matter what as long as it’s easily interruptible if he needs a second pair of hands on something or has a question.  I glance over from time to time, and wander over to see how things are going and see if I can offer any pointers on tool use or whatever.  Nice companionable time in the shop and I’m feeling good about making progress on this!

Anyway, just thought I’d toss this out there for others similarly challenged.  peace.