Inadequate Words

My dad died Sunday morning. The call from the hospital came in at about 3:30 and I pounded out a few thousands words, which I never posted because, in all, they seemed inadequate.

I have this problem when anyone dies. Last year Freeman Hunt’s father died and I think I could only manage to choke out a short tweet of condolence, even though (or maybe especially because) I felt the loss deeply. Just as I do when DarcySport mentions her dad and you can feel the love and longing in the words. (One of my dad’s favorite movies was Coppola’s Peggy Sue Got Married, particularly when she goes back in time and sees her grandparents. I remember being singularly unaffected by that at the time and him saying something to the effect that I should wait a few years.)

So if you’ve sent condolences and gotten only a terse reply, understand it’s not that I’m not grateful. I am, and thank you all for your support.

Burdens and Blessings

I have held off blogging about The Enigma in the hopes that she would blog for herself; such a thing would be extremely challenging, and I’ve seen some kids do it who are then attacked by their commenters as being fakes.

There is a process called “facilitated communication” by which one person holds the brain-injured person’s hand at the wrist and this helps the brain-injured person “type out” a message on a board. The reaction from the casual bystander is to think the facilitator is doing it, not the brain-injured person. (Of course, anyone who tried to force The Enigma to do anything would realize how silly an idea that was.)
You can read about one aspect of the controversy here. The Enigma is one of those kids who has gradually gained independence in facilitation. For some things, she doesn’ t need any help at all any more.
In the previous post, Troop mentioned something about having crosses to bear, and it reminded me of a discussion I’d had with a friend when The Enigma was around ten. He was talking about a basketball player or movie star who had a handicapped kid (maybe adopted one, even).
“They say it’s a blessing? Is it?”
“Having a special needs child. Celebrities are always talking about what a blessing it is.”
“Are you nuts?”
I thought—and I still think—this is just a stupid celebrity thing. I mean, what are they going to say: “Every day is a soul-crushing burden”? (Not that I have felt that way, but I’ve certainly seen parents who did.)
It’s hard to enumerate the costs. Financially ruinous, of course, several times. (Most recently, shortly after being reduced to a part-time employee, The Enigma incurred a $12,000 dental bill.) My own health shot (or at least diminished), as I’ve spent 15 years tending her at nights because she doesn’t sleep well. (Health experts disagree on a lot of things, like nutrition and exercise, but they all seem to agree that not getting enough sleep will kill you.)
To say nothing having missed many of the joys of a normal life with her, and feeling that loss acutely as each of her siblings grow up.
A blessing?
But then, it has to be said that if the condition is horrible, some of the fallout has been decidedly positive. The Enigma attended a special school where they said their ABCs and motored her through doing cut-outs; at twelve, with the help of the Institutes, we put her on a home program, where she ultimately developed the ability to comprehend over 20 different languages.
So, her siblings also have been homeschooled. The Boy was a particular beneficiary as he could’ve skated through school on charm.
Also, looking into alternative approaches to handling The Enigma’s condition led to the elimination of my allergies, and seems to have The Boy on the road to recovery for his diabetes.
Now, I’ve come to understand The Enigma somewhat better over the years. We don’t really understand these kids—I’ll get into why in a later post, but curiously tantalizing fact is that blood tests on them have revealed compounds similar to hallucinogens—and it’s true that they are alien to us, in the sense of their experience and intelligence. (Homo sapiens bases its idea of intelligence on the ability to speak.)
But even respecting that difference, let’s not pretend that brain injury is not a deficiency. Even if it results in hyper-intelligence in certain areas (as I believe it does, which is something else I’ll get into later), let’s not go down the deaf route of declaring some kind of legitimate lifestyle choice.
It’s a challenge. And a struggle. But as Troop points out, there are many crosses to bear. If there’s a sin, it’s allowing yourself being defined by the burdens rather than the blessings.

Photographs and Memories. (Or at least memories.)

Instapundit linked this interesting site called Lost Films, which is based on the brilliant premise of going around and developing the film found in old cameras.

I like cameras but I don’t take a lot of pictures. My dad, who took photography rather seriously, once noted that if you’re taking pictures you’re not really at the event. I’ve found that to be true, almost tautological. (In order to take a picture of a scene, you generally have to step back from that scene.)

And so, what often happens around here is this momentary realization that an event is coming up for which pictures are usually taken. Then a check of the camera, which is most likely out of batteries. Then there’s a long discussion and much pondering over where the charger is. And, while we’re thinking of it, does this camera even have a charger?

Well, the last one did, but this one doesn’t, so it’s a matter of going to the store–of course it’s inevitably late, so…

The upshot is no pix from this Easter. And the general upshot is that we end up with pictures in a flurry. After all, once the camera is set up and charged and you’ve remembered what all the little buttons–okay, you never really know what all the buttons do, but you can figure out the big three–it’s easy to start taking pictures again.

Until the baby picks it up and starts running around with it and you have to hide it to keep her from dropping it in the toilet.

Then you forget about it.

Then comes another day when you realize, you’re going to want pictures….

Photographs and Memories

I have a very good memory but also a neglected one.

My sister scanned in a bunch of old photos and I can remember the events depicted vividly, complete with the strange emotions of a toddler or even infant. (Really! One of the most profound sense of sadness I’ve ever had in my life was on losing a balloon as a toddler.)

But I don’t spend much time in the past. The present is rather demanding, and what’s left of my attention I direct toward the future. There are certain (I hope irrelevant) similarities that I’ve forgotten, such as my own children resembling my sister and I as children. I’ve never thought of my mom looking much like my sister, but there is a strong favoring from certain angles.

There’s a swing-set, for example, in one of the photos which I remembered as being quite formidable (it was, for my uncoordinated 3-year-old self). There’s a photo of our tough ol’ alley cat, who survived out in the coyote-ridden hills, only to be killed by a German Shepherd breaking into our yard when we moved into a “safer” area. There are dingy couches, high hair and thin ties. There are uncomfortable suits–or at least uncomfortable kids in suits–cigarettes and booze.

I tend to be focused on my children’s growth rather than my own decay, which insists on itself in its own way. I think that’s probably a good thing.

The Picture

There are pictures on the piano
Pictures of the family
Mostly my kids but there’s an old
Picture of you and me

You were five and I was six
In 1952
That was 40 years ago
How can it be true?

A brother needs a sister
To watch what he can do
To protect and to torture
To boss around, it’s true

But a brother will defend her
For a sister’s love is pure
Because she thinks he’s
Wonderful when he is not so sure