A Father's Quest To Help His Severely Disabled Son

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A Father's Quest To Help His Severely Disabled Son

TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

My guest, Ian Brown, has a son named Walker who, Brown says, wasn't
supposed to live. At the age of 15, Walker still can't swallow food and
requires a feeding tube system. He's not toilet trained. He doesn't
speak or understand language. He functions, mentally, at the level of a
two-year-old. He has several facial abnormalities, and unless his arms
are restrained, he frequently punches his head.

These are all symptoms of a rare disorder he was diagnosed with called
cardiofaciocutaneous syndrome. In the new memoir, "The Boy in the Moon,"
Ian Brown describes how having a severely disabled son has recalibrated
the world. Brown and his wife raised Walker at home, with the help of
their nanny, Olga, until he was nine, and they found a good group home
for him.

Brown asks some tough questions in the book, like: What is the value of
a life like his son's, a life lived in the twilight and often in pain?
He even asks himself: If there had been a genetic test for the syndrome
when his wife was pregnant, would they have decided to have abort? We'll
talk about those questions later.

Ian Brown is a features writer for the Globe and Mail newspaper in
Toronto. His new memoir has won three of Canada's top literary awards.
Ian Brown, welcome to FRESH AIR. I'd like to start with you reading the
beginning of your book.

Mr. IAN BROWN (Author, "The Boy in the Moon"): Thank you.

GROSS: I'd like to start with you reading the beginning of your book.

Mr. BROWN: Sure, sure. This is the opening chapter - or beginning of the
opening chapter.

Mr. BROWN: (Reading) For the first eight years of Walker's life, every
night is the same, the same routine of tiny details, connected in
precise order, each mundane, each crucial.

The routine makes the eight years seem long, almost endless, until I try
to think about them afterwards, and then eight years evaporate to
nothing because nothing has changed.

Tonight I wake up in the dark to a steady, motorized noise, something
wrong with the water heater. Nnngah(ph). Pause. Nnngah. Nnngah. But it's
not the water heater. It's my boy, Walker, grunting as he punches
himself in the head, again and again.

He has done this since before he was two. He was born with an impossibly
rare genetic mutation, cardiofaciocutaneous syndrome, a technical name
for a mash of symptoms. He is globally delayed and can't speak, so I
never know what's wrong. No one does.

There are just over a hundred people with CFC around the world. The
disorder turns up randomly, a misfire that has no certain cause or
roots; doctors call it an orphan syndrome because it seems to come from
nowhere.

GROSS: That's Ian Brown, reading from his new memoir about his son,
Walker. Do you have any insight into why he punches himself in the head?
He once bit his hand to the bone.

Mr. BROWN: Yes and ended up spending a night in an American hospital at
$13,000. We don't know. There are many theories. He may be trying to
stimulate himself. He may be frustrated that he cannot operate as
everybody else does. He may be trying to distract himself from some
other pain.

Sometimes, you know, he does it. Now he wears these cans on his arms,
these sort of - they were first sort of created by women, girls who
worked with him. They took Pringles cans, and they taped them at the
end, and they decorate them up. But if you put them over his elbow, he
can't bend himself, and so he can't uppercut into his head or his face.

But he - sometimes, you know, he'd be wandering around, and he'd give
himself a little bash, and then he'd laugh, you know, which used to, you
know, kind of wreck me. So maybe he's doing it to remember who he is, to
give himself some - so much is a mystery about Walker that - including
that, that one can often only speculate.

GROSS: You can't talk to him. So you really can't know for sure what's
going on in his mind.

Mr. BROWN: No, he can't speak. You know, he can't do a lot of things. He
can't swallow, so he's fed through a tube. We don't know how well he
sees or hears. We know he sees, and we know he hears, and I think it
might be getting a bit better, but because he can't talk, he just has no
way of rationally communicating. And so you spend a long time - well, we
spent a long time figuring out other ways - or trying to figure out
other ways to connect.

GROSS: Since he can't swallow and has to be fed with a tube, describe
what feeding him is like.

Mr. BROWN: Well, you have to hook him up, but we used to do it at night.
Now we do it during the day. At night, it was very complicated. He'd be
asleep, and you had to hang a feed bag up on an IV stand, and that was a
gravity-fed thing, through a little lock in the tube.

And the tube then would go down through his sleeper, a hole that you
would cut in his sleeper, into this little Mickey valve, they call it a
Mickey, that is permanently in his side. And it has a little stopper in
it.

So you connect that up, and you turn the pump on, and then it would
slowly feed him throughout the night. But, you know, if he woke up, and
he started hitting himself, then, you know, you've got to do everything
in reverse. You've got to turn off the pump, you've got to lock the
little - the line so that the stuff that's in the line doesn't come
shooting out, which I, you know, constantly forgot.

You've got to unzip the sleeper to get into the Mickey to undo the
Mickey then take it out, out through the hole, hang it up so it doesn't
drop onto the floor. You know, then you've got to pick him up and take
him downstairs and give him a bottle because though he can't really
swallow without aspirating, the bottle seems to calm him down a little.

So we get him down into the - you know, you get him down into the
kitchen. This is with the lights off because you don't want him to wake
up too much, right, and you don't want to wake up my wife, or my wife
didn't want to wake me up or our daughter Haley(ph).

So then you've got to get him that bottle, which involves titrating tiny
little amounts of pabulum and a little bit of food and a lot of water
and then get into bed with him, you know, have to give him some chloral
hydrate to stop him from hitting himself.

And then you hope that that'll take and that he will gradually, you
know, turn over and go to sleep. But it's a complicated process.

GROSS: I doubt you got much sleep.

Mr. BROWN: We worked it out once. You know, because we took alternate
nights, because this syndrome, you don't sleep through the night, and so
he would wake up once or twice or three times. I mean, he'd wake up. You
know, maybe he'll go back to sleep in 20 minutes. Maybe he'll wake up in
an hour again.

But we figured because we took alternate nights, we got - neither one of
us got two consecutive nights of sleep in about nine years. But after a
while, you know, your days sort of blend into your nights. You don't
really notice it.

GROSS: Now, your son Walker is physically different, too. What are the
physical signs of the disorder that he has?

Mr. BROWN: Well, cardiofaciocutaneous syndrome, cardio is the heart. In
many cases, the heart is enlarged. The facio is sort of facial
dysmorphia. So his ears are rotated and lowered. He has no eyebrows.
He's bald as a space man. You know, he's - that's the signature detail.
That's how a lot of times it is diagnosed because there - that's a very
distinguishing characteristic. He has a slight bridge on his nose,
slightly prognathous brow.

He's very small. He's now 15, and he looks about 10. And he has the mind
of a probably two-and-a-half-year-old. He probably always will. But
there's a wide range in CFC, and there is normal, completely normal
people, but then there are people who are like Walker, who are more
profoundly delayed intellectually.

You tend to lose on one way and make up in another. For instance, a lot
of CFC can talk, but they have very difficult metabolic systems, and
they have real serious heart problems.

Walker seems to be okay physically. You know, he can digest once we get
it into him, and his heart's okay, but intellectually, he wasn't so
lucky.

GROSS: My guest is journalist Ian Brown, and his new book is a memoir
called "The Boy in the Moon: A Father's Journey to Understand his
Extraordinary Son."

When Walker was born and had trouble sucking and digesting, you write:
This boy didn't want to survive. And you say your doctor asked: We do
want this child to live, don't we? Did you feel like you had a choice
when Walker was born whether to let him, you know, die of natural causes
because he couldn't sustain himself the way, you know, a normal baby
would?

Mr. BROWN: No. Well, I didn't feel I had a choice, which is why when the
doctor said that, Dr. Saunders(ph) was his pediatrician, I was so
surprised.

I mean, we'd been back to Dr. Saunders a lot. I mean, we would go
sometimes two, three, five times a week. So I was there, and he said:
Well, you've got to get some weight onto this boy. We do want him to
live, don't we? And I, of course, thought it was a rhetorical question.
I said: Yes, of course.

But afterwards, I thought: I wonder if he was saying, you know: You
could starve him. Or he could die. Or you could let him die. And this is
the strange thing: You know, I mean, Walker is part of this new
community, I suppose, or a kind of - not a species, but it's almost like
a new genre, I think, of human being who has been kept alive through
medical technology.

Twenty years ago, 30 years ago, Walker would not have lived. He just
would not have lived. But medical technology, this brilliant thing,
keeps him alive. But then the doctors say, well: You know, here, he's
yours. You figure out how to look after him.

And that's when the nightmare begins. The doctors knew nothing. So you
kind of go out on your own.

GROSS: You had to make a decision when your son was very young that a
lot of people have to make when they're very old and near death, and I'm
talking about the decision to put in a feeding tube.

So when you made the decision to put in the feeding tube for your son,
did you think that: Well, this is just going to be temporary? Or did you
think this is a lifelong condition, which is what it turned out to be?

Mr. BROWN: I didn't know. As I - you know, at that time, there were
maybe 20 known cases of CFC. At first - and it didn't have a name until
1986. No one knew anything about it. I mean, we knew more than the
doctors did. So no one had any idea of what the outcome was, whether he
would expire, whether he would not, whether he would thrive, whether he
would continue on.

I mean, I was getting a pretty - rapidly developing a sense that this
might be a very long-term thing, but I didn't know. So there was a - you
know, the natural thing to do was to, you know, hope for the best, I
guess.

I think even geneticists will admit that they do this. I mean, I've
talked to a lot of geneticists, both in consultation and to figure out
what Walker's life means, if anything. And, you know, they will admit
privately, you know, that optimism is the fallback position even of the
geneticist.

You know, you're dealing with crazy, out-of-their-mind parents, you
know, who are trying to figure out as much as they can about this
syndrome. No one knows anything. They don't know what's going to - they
don't know how to care for the child. They don't know what's going to
happen to their lives. They don't know what's going to happen to his or
her life, the disabled child's life. It's a pretty complex situation.

And so, you know, you do what you need to - I mean, I'm not saying it's
the same as a, you know, a crisis, but you're sort of in constant
crisis. And you do what needs to be done. And so we put in the tube.

GROSS: If you're just joining us, my guest is Ian Brown. He's a Canadian
journalist who writes for the Globe and Mail. And he has a new memoir
called "The Boy in the Moon: A Father's Journey to Understand his
Extraordinary Son." Let's take a short break here, and then we'll talk
some more. This is FRESH AIR.

(Soundbite of music)

GROSS: My guest is Canadian journalist Ian Brown, and he's written a new
book called "The Boy in the Moon: A Father's Journey to Understand his
Extraordinary Son."

His son Walker was born with a rare disorder that left him with severe
developmental, cognitive and physical problems. He can't speak. He can't
eat. He has a feeding tube. It's the only way he can ingest or digest
his food.

You ask some very tough questions in your book. So let me ask one or two
of these questions to you. You ask, you know, had you known, when Walker
was still a fetus, when your wife was still carrying him, had you know,
had there been a genetic fetal test for this rare condition he has,
would you have made the decision to abort, knowing what you know now.

Mr. BROWN: Yes, I think we would have. This conversation came up between
Johanna and I. You know, we - it's funny. When you - we would often talk
at night. That was the only time we had to talk. And she said: Well, you
can't ask me that question. I said: Why not?

She said: Well, because Walker is Walker now. He's a person. I mean, I
have a relationship with him. He's a story. He's a metaphor. You know,
he's all these different things. And once you have a story, once you
have a metaphor, once you have a person, then, you know, this
relationship, you can't.

But when Walker was a fetus, before I knew him, yes, I would have had
the abortion. You know, and then - of course, then the conversations
would go on from there, and I would say: Well, so then you wouldn't have
Walker in your life. And then the conversation gets strange. She's his
mother, right? I mean, the mother as - she produced him. Her body gave
him into the world, this broken boy. And so she has very complex
feelings about it: loves him, is ashamed, wanted to love him, had the
natural maternal reaction to any broken child, which is to forget about
that one and concentrate on the living, very complex.

And I said: Well, what sort of a world would the world be without
Walkers? And she gave a great answer, one I've never been able to
forget. She said: Well, you know, a world where there are only sort of
masters of the universe would be like Sparta. I mean, I often...

GROSS: Could I just tell you, I'm not a master of the universe. I'm not
broken, physiologically broken like your boy, but I'm hardly a master of
the universe. I think most of us are not masters of the universe. I
mean, we're all broken in our own special ways. So it's not like we're
perfected people, and we need constant reminders of imperfection.

I'm not arguing for abortion here. I'm just saying we're not a
population of perfection.

Mr. BROWN: No, no, absolutely not, although I think the imperative to
know what to do, to have the answer, to have the solution, I think
that's a very strong imperative.

And Walker is - I mean, he's more than a reminder of imperfection, I
think. Gradually, I've begun to realize that he is a way of - not the
only way of being, but he's an alternate way of being because you can't
be successful with Walker.

You can't get it done. You know, you can't just do it, as the ad says.
You have to actually just be with him. I mean, one of the things, you
know, he used to do, and still does, if he was, say, where I am now in
this studio, he'd be here, and I'd be watching him. And he's drawn to
shiny things and lights. And there are a couple of those here and my cup
of water here on the table.

And I'd watch him, and I'd watch him, and I'd watch him, but eventually
something would distract me, and at that point, he'd come over, and he'd
clear the water and about $10,000 worth of audio equipment off the
table. And then he'd throw his head back and laugh.

And I used to think to myself: You know, he's a psychopath. I mean, I'm
going to be communicating with him through our clickings or our pattings
or our holdings, you know, through Plexiglas at some state penitentiary.

And it took me - I must have watched him do it a couple, a thousand
times, thinking every time: Oh my God, why is he like that? Why is he
like that? He's such a freak. He's so different. Before I realized that
he was trying to show me that once in a while - he knows he's different
- that once in a while, he can show me that he can be smarter than me.

And, you know, that might make him feel better, I guess.

GROSS: Smarter than you by knocking over your water and destroying audio
equipment?

Mr. BROWN: Yeah, he fooled me. He fooled me. I can control him. I'm
supposed to be able to control him, but sometimes I can't, and he can
outwit me. And so he outwits me, and that - I think that makes him feel
better. But weirdly, it makes me feel better because I can fail with
him.

And, you know, with Walker you can't proceed from power. You have to
proceed from the mutual admission that neither of you knows what the
hell to do. But weirdly, you can get to each other that way.

GROSS: But in terms of interpreting his actions, and thinking: Oh, he's
doing this to outsmart you, to show that he can occasionally be smarter
than you. Do you ever feel like you're ascribing motivation where
perhaps either none exists or a different one exists, it's just
inscrutable to you?

Mr. BROWN: Yes, of course, constantly.

(Soundbite of laughter)

Mr. BROWN: Constantly I think to myself: I'm making it up. You know,
that's not why he's clearing the table. He is a psychopath. He is going
to end up in jail.

No, you know, this is one of the difficulties of a boy like Walker, why
he is so hard to raise. And yet, you know, it's always harder than
anybody imagines, but it's also way more graceful that anybody imagines
because you do have to - you do have to reach towards him. You have to
speculate about alternate interpretations of what you see in front of
you.

GROSS: You say in your book that you and your wife are not disability
masochists, but you've met a lot of disability masochists. What is a
disability masochist?

Mr. BROWN: I think a disability masochist is somebody who has made the
decision to make their disabled child the most important thing in their
life and the only important thing in their life.

And they commit to that position, and then when reality suggests that
there are other decisions, they get angry about it. It's like anybody
who, you know, concentrates on one point of view and only one point of
view. If you contradict them, they get, you know, they get nasty, right.

You see it with political life every day. But with - for instance, I
mean - and you often hear from these people saying something that drives
me mad, drives Johanna mad. It's one of the reasons I don't - didn't
want to write a book like this and one of the reasons it took me so long
to write the book was because I didn't want to write one of these - a
misery memoir.

And these misery memoirs, in addition to being badly written, I think,
are very much - that you get the same sentimentality all the time: These
are very special children, given to very special parents by a very
special God. The God thing is not always there, but it's often tacked
on.

And I think to myself: You know, if Walker is God's idea of a gift, God
needs to read Emily Post, you know, because a jar of jam or a bottle of
wine would have been fine, thank you very much.

So if you can't - you know, to only think that Walker's life is a
brilliant thing and the saving grace of all time, I mean, it's
ridiculous. But to think that it is only broken and needs to be, you
know, obliterated early on or fixed is also narrow.

GROSS: Ian Brown will be back in the second half of the show. His new
memoir is called "The Boy in the Moon." Brown is a features writer for
the newspaper The Globe and Mail in Toronto. I'm Terry Gross, and this
is FRESH AIR.

(Soundbite of music)

GROSS: This is FRESH AIR. I'm Terry Gross, back with Canadian journalist
Ian Brown. We're talking about having a severely disabled son has
recalibrated his world.

His son Walker was born with a rare disorder called cardiofaciocutaneous
syndrome. At the age 15, Walker still can't swallow and requires a
feeding tube, isn't toilet trained, can't speak or understand language,
and has several facial abnormalities.

Walker lived at home with his parents, his older sister Hayley, and his
nanny Olga for eight years. When Walker was nine, Ian Brown and his wife
Johanna decided to move him to a group home. Ian Brown has written a
memoir called "The Boy in the Moon," about raising Walker and some of
the tough questions posed by Walker's very existence.

You know, people never really know what's it like to live in the mind
and the body of somebody like Walker. And some people would say it's
probably a miserable existence. It would be best, early on in this
person's life, to euthanize them, you know, to prevent them from having
the life of misery that they're destined to lead. And others would say,
no. You're projecting misery onto a life that's just different. And for
all the things that he can't do, there is still probably some pleasure
in their existence - or if not pleasure, one should honor the act of
existence and not deprive any living thing of it.

Did you go through this yourself? You know, that - in terms not of what
would be best for you, but what would be best for him? Is it a life
that, if we could talk to him, that he would feel is worth living? Or is
it a life of suffering?

Mr. BROWN: I don't know. I think it's both. I mean, there are times when
he is in agony and hitting himself and crying and I don't know why.
There are times when he is – I mean, every time he's happy, he's as
happy as he's ever been. I used to think, well, that's bizarre. There
are gradations of happiness. But then I thought, well, that's not such a
bad approach, really, you know, to take advantage of every spot of
happiness you can.

I mean, I have a picture I put in the book that is my favorite picture
of his sister Hayley reading to him. This is up north in a little cabin
that we rented. And, you know, Hayley's reading to him from Dr. Seuss'
"Bartholomew and the Oobleck." She's holding the book, but they're both
lying down with their heads on the pillow. Their heads are touching.
She's holding the book up above them. She's pretty tired. He is on fire
with - he's so alert. He's so right there. You could just see he's
absorbing it.

I don't think he understood a single word. But somehow, this makes in
happy. And you think about: Why does that make them happy? I don't know.
I mean, his – he loves his sister. He adores – she's his favorite,
right. He adores her, adores - because she has the most honest
relationship with him, I guess, I imagine. She is lying there with him,
giving him some time, which he likes. She is talking to him, chanting
this story, the rhythms of the story. This - rhythms of the story are
pretty constant in this ancient thing, a story. But most of all, she's
talking to him, right. He loves to be in close, to have somebody talk to
him as if he's having a conversation - this thing he cannot ever have.

So I, you know, there is no evidence that his life is full of pain,
because he spends a lot of it laughing. There is no evidence that his
life is full of laughter, because he spends a lot of it crying. But he's
not so different from us, the rest of us in that regard. It's just that
with him, you can't help but recognize it. You have to face the facts
that, you know, this is a vale of tears, blah, blah, blah, you know.

GROSS: So, your son is in a home now.

Mr. BROWN: Yes.

GROSS: How old was he when you made that decision?

Mr. BROWN: Well, when I made the decision that he had to go there, he
was two. But I kept it to myself for about seven years, because my wife
was so upset every time I brought it up. He came – she came down one
night after caring for him, and I could hear him whacking himself and I
could hear her saying no, Walker, no.

And finally, an hour, when he fell asleep and she came down, she was
sobbing and she said my – I'll never forget these words. She said, my
little boy has gone away. Where has he gone? I can't get him back. And I
thought, you know, I can't stand that pain anymore. We can't do this.
We've got to – but every time I raised it, she'd say no, no, no, no. I
can't possibly do that. Plus, it took me eight, nine years to find a
place, an acceptable place, where I would be willing to put him, because
there's a worldwide shortage of places that can care for people like
Walker, for the disabled, especially the intellectually disabled. So it
took a long time to get him there.

And then, you know, you've got to give – in the beginning, to put him in
a home, I would've had to have declared myself inept as a parent. That's
what the law required. They eventually changed that, so that I can still
be his parent and he can still live in an assisted-living home. You
know, it's not perfect, but it saved a lot of lives, and included - you
know, when he finally went there, I mean, he developed a new confidence,
because he was finally around people like him, as well as around people
like us, you know.

So it's - and, you know, and sending him there was, I still remember
that day. You know, we all drove up there. We dropped him off, and there
had been lots of preparation for him. We'd taken his stuff up earlier,
and it's about 40 minutes from our house on the edge of town, this
little white bungalow. And we dropped him off, and we all drove there,
Olga and Hayley and Johanna and me in the car. Nobody said a word -
everybody very alert, you know, coming down the highway back downtown.
We got home, and there was, like, so much time, so much of it. It was a,
you know, really terrorizing decision, but a good one, I suppose, in the
end.

GROSS: It's not something you could have explained to Walker, because he
doesn't understand language and he can't speak, either. So, you know,
suddenly, he's in completely foreign surroundings with a new set of
people and a new routine. You must have been terrified that he would
find it frightening and be unable to adapt.

Mr. BROWN: Yes. I was terrified for a while, until Johanna and Olga took
him up there. After about three weeks, he'd come home. He comes home for
about three days, then he goes up there for 10 or 12, and he comes back
to us for three days. They took him up, and they were, you know,
lingering and hanging around. And there were two girls there who he'd
become friends with, and they were waiting for him when he came in. And
he actually took Olga's hand and took Johanna's hand and led them to the
front door and sort of almost pushed them through.

(Soundbite of laughter)

Mr. BROWN: And he was younger, right. He's 10 years old. It's like he
was saying get the hell out of here. I've got stuff to do, you know. And
that made me feel a lot better.

GROSS: You said that it took you years to find a home you would feel
comfortable putting Walker in. What were the qualities you are looking
for that you found in the home that he now lives?

Mr. BROWN: Well, he lives in a brilliant place, and I'm always looking
to improve it. You know, obviously good care, professional care, but
most of all, a community, a community of people where he - not just
where he's taken care of, but where he has a life of its own. You know,
I mean, so much of the care - in fact, the model is that we help them,
right. We, the able-bodied, help the disabled. Care is very much
concerned with inclusion, making them more like us, right. The more we
make them like us, the more normal they are, the happier they are.

When I went to France to find models of a community that I could leave
Walker in, I went to something called L'Arche, which is run by a guy
called Jean Vanier. Vanier is a - he's set up this global network of
homes, but - and they're essentially villages.

But they're very different from the normal care model, because whereas
we do things, we make the disabled more like us. Vanier doesn't do that.
He says, look, the disabled are perfectly capable of having communities
of their own. They've got their own agenda, their own way of connecting.
His view is that we need to be integrated into their communities and
into their way of thinking, that, in fact, that gives us way more than
we ever give them taking care of them. And so what I've always been
looking for is a community where Walker and his fellow - his housemates,
his friends create their own life, their own tenor, their own feel that
is theirs and theirs alone, and that they can invite me into.

GROSS: So it must cost a fortune to have your son in a group-living –
assisted-living setting. Since American health insurance is in the
process of being reformed, a lot of Americans are really curious about
how things are done in other countries. So do you get any help from the
government in paying for the group home where your son now lives?

Mr. BROWN: Yes. But the government pays for the group home where my son
now lives.

GROSS: Completely?

Mr. BROWN: Yes. Yes. And it's a problem. You know, it's...

GROSS: It's a problem?

Mr. BROWN: Well, it's a problem in that, you know, how do we afford
these things? It's always a problem finding, you know, will there be
money in 10 years time? I mean, will there be money in 20 years time?
Will there be money there after I'm gone?

What about - there are incidental expenses that I pay for, medical
things and some, you know, his fee for instance, before he went in. It
changed once he got into the system, because then the system is up here
in Canada, it pays for that care. Before he went into it, was much more
expensive. But no, we're very fortunate.

I figure it costs - I think it probably costs $200,000 a year for him to
live there, probably about $8 million for his life. I once worked it
out. I think it's about $8 million for his life. And, you know, that -
believe me, it's not something I take for granted. I mean, I - that's
why I'm so keen to figure out what value Walker and people like him
have. Because I think they give us more than we will ever give them. And
if we could begin to understand that or feel that, then it might make us
feel better about paying all that money.

GROSS: You know, you quoted a doctor as saying we spend a million
dollars to save babies who are developmentally disabled, but when
they're discharged, we ignore them.

Mr. BROWN: Mm-hmm. Well, because it's expensive, and the hospitals are
geared to - not to chronic care, but to fixing an emergency, to curing
the ailing. You know, that doctor was crying at the time. She was a
surgeon, and she specialized in helping these kids. And she saw that she
saved lives that then just threw everything into turmoil.

I think part of the problem is that we don't - again, I - you know, we
see it as a problem to be fixed, a burden to be carried and possibly
solved. If - I've had no choice. I'm not saying this in any self-
congratulatory way, but I've had no choice but to see that the disabled
knows things that we don't know.

(Soundbite of laughter)

Mr. BROWN: They know things about being that we forget. And if we could
somehow recognize that their lives are valuable in and of themselves, we
might be able to structure the system in a slightly less-expensive way
that it's not so daunting to care for one of these kids.

GROSS: My guest is Ian Brown. His new memoir about his disabled son is
called "The Boy in the Moon."

We'll talk more after a break. This is FRESH AIR.

(Soundbite of music)

GROSS: My guest is Canadian journalist Ian Brown. His new memoir "The
Boy in the Moon," is about raising his son Walker, who has a rare
disorder that has left him severely physically and cognitively disabled.

There aren't many people who have the syndrome that your son has. You'd
estimate maybe 150 in the whole world.

Mr. BROWN: Mm-hmm.

GROSS: So there isn't a whole lot that's known about it. Do you have an
estimated lifespan for him? Do you think he'll live to, like, an average
life expectancy, or is that not expected?

Mr. BROWN: No. There are a couple of CFC people who have lived to middle
age. That was the - when I used to ask doctors, you know, I was trying
to figure out what it was, and we first diagnosed it when he was about
two. They would - doctors would say, well, you know, he could live to
middle age. And I just remember thinking, you know, is that a good
thing, or is that a bad thing? Because middle age, great. But middle
age, in that much pain, not so great.

GROSS: So do you worry, like, what would happen if he outlived you?

Mr. BROWN: Yes, of course. Every parent of the disabled, you spend most
of your time planning, putting money aside if you can or, you know, how
do you save it? What should you put it in? You know, I mean, figuring
out the legal complexities of trusts and blind this and that is just a –
and there's not very much that you can do, anyway, but it's a nightmare,
and it takes up a lot of time.

Yeah, of course. I don't - that's part of the reason why I - I think, in
a way, I think that's why I wrote the - part of the reason why I wrote
the book. I mean, I was keeping a diary, really, just to calm myself
down, and it took me a long time to write it and to be convinced that I
should write it. But I hope that maybe it might give people some
motivation to care for him or, you know, care for people like him, that
there's a good reason to do so.

GROSS: So, you know, I read your new book and then I thought I'm going
to read some of your columns because you write for the Canadian
newspaper, The Globe and Mail. And your columns have a lot of humor and
irony in them and, you know, obviously your book about your
developmentally and cognitively and physically challenged son it's not a
funny book. So I was like almost shocked to see these things in your
column.

Mr. BROWN: Well, there is some funny lines in it.

GROSS: Yeah. I know. But I realized well, there's another side of you.
There's a side of you that's standing back and looking satirically at
the world.

Mr. BROWN: Mm-hmm. Well, there's another side in all of us. You know,
there are private and public selves in all of us. And I think – I
personally am - although I want all mawkishness on this subject, I am
personally grateful to Walker for allowing me to - for helping me, I
suppose - although, you know, my daughter Hayley did this too, but
helping me find a more serious side. I think he took me to a place that
I never expected to go, a place I never expected to get to. I'm still
not sure what that...

GROSS: And what's the place?

Mr. BROWN: Well, I'm still figuring it out. And that's the great thing
about it is that he does not have a stable, certain definition. And
every time I see him - I mean the other day I saw him and I said goodbye
to him at his house and he opened his arms and I think I hugged me. He's
never done that before. I mean 15 years and he's never hugged me, you
know, because CFC kids tend to be a bit - new stimulis(ph). Like they're
very nervous. They don't like to be touched sometimes and they can, you
know, flip out at unpredictable moments. And he hugged me. And so I
hugged him. And then he did it again. You know, to be reminded of the
immense and lasting value of touch, to be able to hug my 15-year-old
son. I bet they are not a lot of 15-year-old boys you can hug, you know,
if you're their dad. That felt like a, I don't know if I would call it a
gift, but it felt like a moment of grace that opened things up for me,
that opened things up in time. And I'm not trying to make it to grand,
but that's what it felt like, this little wormhole into a deeper
experience of who I am and who he is happened.

GROSS: Well, Ian Brown, thank you so much for talking with us and for
reflecting out loud with us about your son and your life with him. I
really appreciate it.

Mr. BROWN: Well, it's a great pleasure.

GROSS: Ian Brown's new memoir is called "The Boy in the Moon." You can
read an excerpt on our website, freshair.npr.org.

Tomorrow on our show, we'll feature an interview with singer and
songwriter Anna McGarrigle. She and her sister Kate performed and
recorded together as the McGarrigle Sisters. Kate died of sarcoma last
year. Their first two CDs from the 70s have been reissued along with a
CD of demos. Here's the title track "Tell My Sister," which was written
by Kate.

(Soundbite of song, "Tell My Sister")

MCGARRIGLE SISTERS (Folk singers): (Singing) Weatherman on the radio
threatens rain maybe snow. He don't know, I need blue skies. I've got to
go.

I'm not a cowboy, I've never been shot. I'm not a convict I've never
been caught. Tell my sister to tell my mother I'm coming home. Home,
alone.

Sunday morning I boarded a plane. Leaving London, England in the rain.
Tell my sister to tell my mother I'm coming home. Home alone.

GROSS: During much of the period covered by the new McGarrigle Sisters
reissues, Kate was married to Loudon Wainwright. Ken Tucker reviews
Wainwright's new perspective box-set after a break.

This is FRESH AIR.
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Loudon Wainwright III Looks Back At '40 Odd Years'

TERRY GROSS, host:

Loudon Wainwright III has just released an elaborate box-set career
retrospective called "40 Odd Years," and the pun in the title is
definitely intended. Rock critic Ken Tucker said it presents the singer-
songwriter just the way his music does: artful, warts and all.

(Soundbite of song, "Westchester County")

Mr. LOUDON WAINWRIGHT III (Singer-songwriter, musician): (Singing) I was
raised here in Westchester County. I was taught in the Country Day
School. We were richer than most. I don't mean to boast. But I swam in a
country club pool.

Well, a father...

KEN TUCKER: The "40 Odd Years" Loudon Wainwright III collects on these
four CDs plus a DVD, serves as the autobiography and music that in some
ways the singer-songwriter intends but other ways he probably doesn't.
Lots of artists get entombed in box-sets. Few of them lend themselves to
a retrospective as appropriately as Wainwright, because his entire body
of work - with a few "Dead Skunk" exceptions - is about using his life
to build his art.

(Soundbite of song, "Red Guitar")

Mr. WAINWRIGHT: (Singing) Used to have a red guitar, till I smashed it
one drunk night. I smashed it in a classic form, as Peter Townsend
might. I threw it in the fireplace. I left it there a while. Kate, she
started crying when she saw my sorry smile. Oh, the red guitar was made
of wood.

TUCKER: That's "Red Guitar," a 1972 song Wainwright wants you to believe
is about his very bad behavior while married to his first wife, the late
Kate McGarrigle. It was one the first of Wainwright's cut-to-the-bone
autobiographical songs, and typical of his methodology. No matter how
much poor judgment or sloppiness he describes, Wainwright casts it in
perfect meter, with rhymes as impeccable as the Brooks Brothers shirts
he wore early on to distinguish himself from his flannel-shirted, Bob
Dylan-derived contemporaries.

A child of East Coast privilege, as he details in the song that opened
this review, "Westchester County," Wainwright has spent his career
rebelling against his upbringing and mourning every time he fails to
live up to his parents' expectations and his cultural inheritance. This
process has yielded the best white Anglo-Saxon Protestant chronicle of
ruined relationships and broken families this side of John Updike, and
I'd put the best of Wainwright's short-story songs up against the
"Rabbit Angstrom" novels any day.

(Soundbite of song, "Your Mother & I")

Mr. WAINWRIGHT: (Singing) Your mother and I are living apart. I know
that seems stupid but we weren't very smart. You'll stay with her. I'll
visit you at Christmas, on weekends, in the summer time too.

Your mother and I are not getting along. Somehow, somewhere something
went wrong. Everything changes. Time takes a toll. Your folks fell in
love. Love's a very deep hole.

TUCKER: Wainwright is not a cult artist by choice. He's tried for a mass
audience in all sorts of ways, including acting jobs on TV shows ranging
from "MASH" to the 2001 sitcom "Undeclared." The latter, a high-quality
TV flop, was created by Judd Apatow - now a movie mogul, who is
Wainwright's most powerful show biz fan and the co-producer of this box-
set. Apatow, who also cast Wainwright in a small role in "Knocked Up,"
clearly appreciates the Loudon's artistic strategy of eloquent arrested
development.

(Soundbite of song, "Bein' A Dad")

Mr. WAINWRIGHT: (Singing) Bein' a dad isn't so bad, except that you
gotta feed 'em. You gotta shoe 'em and clothe 'em and try not to loathe
'em. Bug 'em and hug 'em and heed 'em.

Bein' a dad can sure make you mad, man it even can drive you crazy. It's
as hard as it looks. You gotta read them dumb books. And you end up
despising Walt Disney.

TUCKER: By now, an undercurrent of bitterness has occasionally seeped
into the cracks of Wainwright's music. You can hear it annunciated in
the terrific 1993 Dutch television documentary on this collection's DVD.
It's titled after one of Loudon's songs: "One Man Guy." At one point,
Wainwright flashes a wide, sour smile and says to the camera: The world
is a terrible place; haven't you noticed? The media success of his son,
Rufus, about whom the father has written songs since the young man was a
baby, can be a sore point, although Rufus seems headed toward a less
prolific, separate-but-equal cult status. As Loudon settles into his
60s, there's no reason to believe that he can not turn such feelings and
senior citizenship into a whole new area of exploration.

This collection "40 Odd Years" proves Wainwright the least limited of
cult artists, and the least diminished over time. There are more
chapters in song to be written illustrating the power of a highly
disciplined artist continuing his life's work - an ongoing portrait of a
genial screw-up, honest not to a fault, but to a triumph.

GROSS: Ken Tucker is editor-at-large at Entertainment Weekly. He
reviewed the Loudon Wainwright's new collection "40 Odd Years."
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