Outliers, part 3: Rolling with it

Our son is a bona fide outlier in terms of his weight. He's got good motor and cognitive development for his age, but he hasn't really been gaining weight for the past year. Working with his pediatrician, we've kept an eye on it and kept giving him time to add some poundage, and it's never come.

So in February, we did a round of initial blood tests. These showed no reason why he wasn't gaining weight. So our doctor wanted to next check for cystic fibrosis. I have done very little reading about the disease because the name sounds so scary. But my understanding is that cystic fibrosis could be preventing him from absorbing the nutrients he needs to grow.

We went in for this test which measures the salt in his sweat. But he didn't sweat enough. So we're going to need to go in again which we'll do at the end of April. We could have scheduled earlier, but February was too full of tests. We all needed a break.

I think that people see positive outliers (those smarter, faster, taller, etc.) and think, man wouldn't that be wonderful and aren't those parents so lucky to have kids like that. And there are some great things about such a situation, but also some draw backs -- like what kind of bed and what kind of clothes did 7ft+ Yao Ming need?

Then I think that people see negative outliers (those sicker, dumber, slower, etc.) and think, isn't that terrible and aren't those parents so cursed to have kids like that? And as we peer into the (hopefully remote) possibility that we will care for a son with an awful disease, I don't think my heart is processing things that much differently.

Part of it is my own mess, from part 1, where I grieve the loss of "normality" that comes with giftedness. So grief for smarts? Check. Grief for illness? Check. But we're in a place where we don't know for either kid. There are signs and symptoms that suggest that our daughter's intellectual development may be ahead of her peers, and there are signs and symptoms that suggest our son may have cystic fibrosis or some other disease.

For now, we have to live by faith that God is providing what we need for today. And for May, if we discover our son does have a dread disease then we will move forward trusting that God will provide for that occasion. And if, in a year or two or three, we discover one or more of our children are unable to flourish in their school, then we will move forward trusting that God will provide for that occasion too.

UPDATE: links to Part 1 & Part 2

A moment of public grieving

NB: The following is not a complaint. I'm not asking for accommodation nor am I wishing for a different life.

While my day to day life in the past 18 months has been decidedly domestic, I am a linguist* by training. Today, I received an announcement for a conference workshop that is right up my alley. I have work I'd love to present there and get feedback on. I'd probably even be interested in the other presentations offered. Exciting stuff on the order of magnitude of being a U2 fan and getting a backstage pass--VERY EXCITING.

SO NOT GOING. The conference is in Australia. I don't think we budgeted for Australia this year. Then, it's in December of this year. As in, one month after a requisite family flight to my cousin's wedding. As in, I'll have a still-nursing, 8-month-old son.

What a bummer. I love my cousin; I love my children; my husband makes good money. I'm still sad that I can't even think of participating in this.

Ok. That's off my chest. Back to playing with the kids.

--

*Linguists are not necessarily grammar, spelling, and punctuation freaks--at least I'm not.

Apropos a lot of things

Another poem from F. Ohler's collection Better Than Nice and Other Unconventional Prayers

Life Is God-Sized

We bring our idols;

You are God.

We come with our theologies;

You are "God only wise."

We keep trying to reduce life to size

with our theology

our biology

our psychology

with all our ologies...

and

You elude our logic

You burst our boxes.

For that we praise You

and rejoice

that life is God-sized

never fully understood

drenched in mysteries

more startling than all our systems.

Humble us all

lest we shrink Your world to what WE know

or can handle.

Help us each

to let it be as unruly

wild

and grace-full

as it is.

Loosen us

to dance with joy

and to wail with sorrow

to laugh to cry to celebrate to grieve.

Help us

not only to be caught by the exceptional

but to be stunned by the ordinary

to marvel at what we call "common"--

sparrow

the people

sense

touch

and all the small and daily blessings.

My God

how incredible that we are here (and not a million OTHER places)

that we are together

that we are alive

that we are at all.

Keep us

young expectant unsure open

nervous sensitive

and alive...

at whatever age

amen.

Remembering Brian Ellis, 1978-2010

A graduate school trench-mate died this past weekend in a tragic accident.

I first encountered Brian in 2004 in a class on the neurobiology of sociality. He was an anthropology student at the time. I don't know that I actually met him, but he was the tall guy with a long blonde pony tail and eventually, I matched him to interesting questions on our class discussion board.

In 2005, we met finally in Alan Fiske's office as we were presented an opportunity to collect some interesting research observations in families coping with frontotemporal dementia (FTD). That summer Brian, Lisa, and I faced the byzantine labyrinth that is the UCLA IRB process so that we would have institutional approval to conduct this research. Brian did most of the heavy lifting, and then he left grad school to go to France.

When he came back about a year later, he joined my department, applied linguistics and also returned to the FTD project. Alan asked Lisa and I if we were okay with his return. I guess the thought was that so much work had been done in his absence would we be willing to share those results with him. For me, it would have been impossible to think of denying him a position on the team. The IRB process was brutal and he took on so much of that; I always felt like I owed him alot. In fact, as the editors of Lang, Int, and FTD were discussing who to invite to contribute chapters, Brian was an immediate, easy pick. (He ultimately decided to pursue other interests.) Shortly after he came back to the program, I began the being-on--campus-less-and-less phase, and I saw him less and less until my last year when we met again on a schizophrenia project.

One of the best things about Brian is that he had his passions. Rock climbing and the outdoors was a huge passion for him. He made it a priority to be out and about and enjoy what he enjoyed. I remember visiting his apartment years ago and it had a piano in it. I always liked that he made the effort to have that in his life since I too played the piano and never bothered. Intellectually, if he got interested in something, he read deeply and thought deeply. As a friend and colleague, Brian's priorities could cause intense frustration when they didn't match my own. After he came back from France, he seemed to have a chronic inability to stay on top of emails and show up on time to scheduled meetings. And rock climbing trips on weekends made him inaccessible when the rest of us were slaving away and might want his input on something. But honestly, you've got to admit that flickering computer screens don't hold a candle to the sweeping vistas of California national parks.

The Byrd's song Turn, Turn, Turn is taken from the book of wisdom, Ecclesiates, attributed to King Solomon. Taking up from where the song ends, the author continues by saying "[God] has also set eternity in the hearts of men." When I think of all the beauty that Brian encountered in his life, I think he understood eternity. One thing Brian always brought to our research was the persistent reminder of the humanity of our subjects. The nature of our work brought us face to face with the little everyday tragedies of living with a diseased mind. Whenever we put up too much defensive distance, Brian would call us back to people as people. In this too, I think he was sensitive to the eternal in each of us.

But this notion of eternity is also what makes his death feel unacceptable. There are no more days for Brian. He's not going to pet his bunnies, climb another pitch, love on his girl, or tickle and teach the kids he never had. Death thumbs its nose at eternity. Our hearts cry out and say, "There is more to life than what we can see and hold." And death says, "Oh yea?"

I don't have any grand finale conclusion about things. I had hoped to hear of many more Brian adventures over the years. Mostly, I think I'm just in shock still. I'll just leave off with the rest of that bit from Ecclesiastes.

9 What does the worker gain from his toil? 10 I have seen the burden God has laid on men. 11 He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end. 12 I know that there is nothing better for men than to be happy and do good while they live. 13 That everyone may eat and drink, and find satisfaction in all his toil—this is the gift of God. 14 I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that men will revere him.
~Ecclesiastes, chpt 3

Source material for the Byrd's song