Sometimes life gives us things that is...
other than what we'd hoped for, what we'd planned for.
We're sort of the first family that has a kid that doesn't have ten fingers, and...
so you don't really know how to deal with it.
Like, you know, you don't smoke, you don't drink,
you don't eat the food that you're not supposed to eat.
Or what kind of aspirin did I take, and how often did I take it?
Those, when they left,
those questions were in my head, "What did I do wrong? I did this."
And, they tell you all the good stuff, but they never tell you
what happens if your child is born with seven fingers and ten toes,
or if your child has any other... disability, or... a difference.
Nobody tells you that.
Of course, it's your child. You don't want your child
to suffer and have a physical difference. It's very hard, so...
when we found out that our baby girl has this condition,
that night when we got home, my husband and I decided that...
we are going to be terminating the pregnancy.
For a couple of days I blamed myself, "I... I shouldn't have
eaten this", or... "Maybe I should have taken my folic acid".
After much deliberation and thinking, and
really weighing down everything, all options...
We decided to continue on with the pregnancy.
So nobody actually saw his...
his fingers and toes until he was being cleaned up,
and my husband saw his fingers, and went, "What's wrong with his hand?"
And the room just, kind of... froze.
The doctor went back afterwards, and he looked through all the
ultrasounds really carefully, and it just—it was never detected.
You kind of blame yourself for all of these things, but we just tried
to focus on who he was, and his personality and his character,
and we also just tried to figure out how to explain it to our older child,
who was just... he was still three at the time, just turned three, so it was...
You know, how do you explain it to him?
And then how do we kind of deal with it and absorb it?
Eventually... eventually, it's just how it is, and... you know, he's still perfect.
Our music teacher for our school had come up to me and said,
"Next year you're going to be starting the band", because in grade 7 and 8,
everyone has to play a musical instrument, and my music teacher
made the assumption that the only instrument that I would be
able to play was the trumpet because you only need three
digits on your right hand to play the trumpet.
So she assumed that's the only thing that I could play.
So because she made that assumption, I picked the instrument that I thought
would be... not only hard, but also that I would enjoy,
so I picked the flute just because I wanted to prove her wrong.
The fact that a lot of times people see Shawn, they see him very active,
they see him very friendly, very loving, and then sometimes they notice his hand.
Then, oh, you know, they ask what happened.
And I just explain to them, you know, during birth it was a—
doctors think it's from a lap-band, or hand was born out of the sac.
They're just really impressed with how he does his work still, how he rides his bike,
how he plays, and he's just very active regardless of how his hand is
slightly different from other people.
Actually, the daycare teachers had put him and another child,
a child who had a hearing aid, they put them aside and said that they're different.
And that night, Shawn came home, he was acting differently,
he's usually very happy, and I asked him what's wrong; he said...
he showed me—he kept hiding his hand away, and I'm going, "What's wrong?"
And he told me that... his hand is broken.
And that—I really—that's the first time he actually addressed his hand,
was when he was two-and-a-half years old.
At first I didn't know how to answer it, but then again I said, "You know what,
God made you the way you are. Your hand works perfectly fine,
you use it all the time—you eat with your hand, you draw pictures,
you colour, you... You do lots of activities—you play basketball,
you play football with your hand, and you do really well.
And I don't want you to feel that anything is different."
One of the things I had trouble with at first, before my family got
programs put in place, was typing and keeping up with all the other kids.
And I found this also to be the same with tests, because when I would write
them by hand, I would take much longer than anyone else.
The volume of writing got increased as she got into the higher grades,
so we got her working on the voice recognition software.
With the program I'm in, it's an international school program,
you have to, have to, have to be fast in what you are doing.
And the advisements made by Sickkids and the War Amps
has really allowed me to keep up with all my peers and get the
grades that I want to, because I'm able to keep up with them.
My name is Jamey Irwin, I am sixteen years old,
and I was born a partial right hand amputee. I am missing my radius,
and I am missing a finger below, and there are some bone structure
difference right there. Also, there is limited wrist mobility,
and I have no bending at the knuckles.
I decided to come to Queen's because I'd read a lot about
the reputation of the university. I'd seen a lot of photos. It looked
like a pretty nice place. A lot of friends of mine had been
thinking about coming here from my high school, so it sort of
worked out okay that a bunch of us ended up coming out here.
And we just never made it an issue. He just... I don't think...
He has a really outgoing personality,
and I think that maybe his personality is so outgoing because of his hand.
Because he doesn't... he has also not ever let it define him as who he is.
But my daughter has the same kooky personality, so who knows?
On the weekends, my friends and I, we... watch a lot of sports,
we go out, we go out for dinner, we don't get up to a lot of...
really outrageous shenanigans. We just sort of hang out and stuff.
We're in our fourth year now, so the allure of going downtown
and that kind of stuff has sort of worn off, we just
like to hang out and sort of take it easy now.
We exposed him to a lot of music, a lot of culture,
he reads a lot... I mean we're just a normal family.
When people ask me about my hand, a lot of people assume that it happened
in an accident or something like that, which wasn't the case.
It was a pre-birth kind of thing.
I usually just explain to people that, yeah, that it happened to me before I was born.
Just, when people would ask me exactly what happened,
as a kid I didn't really know, so I did not answer that question.
You know, Ben's hand anomaly, I believe, is one in like 350,000.
Like, it's not a common thing...
So when we see somebody with a hand anomaly, its kind
of like you belong to a little special club.
Well, to me normal is sort of a hard concept to define, mostly because...
normal is different for everybody, I mean, I would say my life is
fairly normal, but it's different from everybody else's normal,
because I have seven fingers instead of ten.
But I mean, I've grown up like this my entire life,
so it's always been normal for me.
I don't—I mean, you know, when people say, you know,
"It's not normal, what you have."
It's normal for me; it's just not normal for somebody else.
But then it's the same thing, because having ten fingers
isn't normal for me, either.
Which is why I think, sort of, normal is a hard concept to
nail down because there isn't really one normal.
Really, there's everybody's normal.
When Ben was 18 months, we went on a trip to Maine.
And we went to this—we got on a boat, and we went to this restaurant,
and there was this really, really— I was... I don't know how old I was.
Ben was 18 months, so I was 31, 32,
and we were with a bunch of friends, and this waiter came
up to us. He was a young guy. He was really handsome,
kind of looked a little bit like Matt Damon,
and all of a sudden, he looks at Ben. And he says,
"Hey, little dude, we have the same hand."
And I looked, and the guy had the exact same hand as Ben.
And I remember...
getting very emotional, and I was crying, and then the guy came up
to me, and he said, "You know, I've never seen another person
with the same hand as me."
And the guy got a little emotional, too.
And then he said, "I'm going to tell you right now,"
you know, he said, "I'm in university, I play college football, I have girls
coming out my wazoo, I have great parents, I play this, I play guitar, I..."
He said, "Your son's going to be just fine, you just have to get him out there."
And that's always kind of been the message, is to get him out there.
But I'll never forget that young man and, you know, how he basically
made me feel that... you know, this isn't the end of the world.
So, when I play hockey, I have a modified glove and a modified stick.
So what I have done with my stick, I came up with this myself.
I was finding that even though I had a modified glove to help me
hold the stick, I was still dropping it a certain amount.
So what I did was, I took the stick itself, and I tied a really big glob of
tape at the top, and a really big one a bit further down,
about a hand's width in the middle, and then wrapped
it around, which I found gave me a much better grip.
Another thing with my glove, for my hockey modifications, is that
there is an insert to make it smaller so it completely supports my hand,
and so once I attach my glove to my stick,
there's never much slipping or sliding after that.
And then I play just as the rest of the other kids do.
Initially when her younger brother decided that he was going to play
when he was about four and she was six, and we initially thought
that she probably would only try it and then not want to continue,
and she would quit, but she just developed a love of it from day one,
and, I think 11 years later, she's still playing, and will probably always play.
And she's just a real go-getter out there on the ice, and really,
except for the fact that she has a stick that looks a bit different
and a glove that has an adaptation, no one would
know that there was any issues with her arm.
I guess I never really stop.
In hockey, I'm a defense-man, so... I'm not so big on scoring the goals,
but I will shut you down if you come near me with that puck
and you're on the other team.
She's a very good hockey player; she gets in people's way.
They don't like having her on the hockey—on the rink
because she won't let the forwards of the other team do what they want to do.
She gets in their way so they cannot score.
One thing that I like other people to know about me
is that I'm not going to stop just because somebody says I can't.
If somebody says no...
If somebody says I can't...
I will take that, and I will work just as hard as I need to,
to get to that point, to get there.
I will find modifications, I will try my best,
and I will do my best to participate as much as anybody else can.
I'm not going to stop just because on a sheet of paper, it says that I am disabled.
I remember when she was in one of the younger classes, "Small Fry"-something...
she couldn't get her fingers around the flutterboard
because the flutterboard was too thick for her.
So, it was the middle of the winter. I drove all over the place looking
for a flutterboard. Finally found one at a pool shop. Cost me 50 bucks.
Took Bridget down to SickKids.
They cut away some of the material of the flutterboard that I bought so
that Bridget would be able to grasp it, in between her fingers,
and we marched into the pool the next night for swimming lessons,
and Bridget threw that flutterboard down at my feet, and jumped in the
pool with her class, and grabbed the same flutterboard that everybody else was using.
She didn't want to be different than anybody.
She wanted to use the same equipment that everybody else did.
"Careful!"
"Here you go!"
"Alright, do you guys think we need some more water in here?"
"Yeah!"
I force myself to work even harder and to strive towards even bigger goals, like
rugby and lifeguarding, and driving a car, and getting really good grades
because I try and force myself to do better than others.
Without pushing her, we never... encouraged her to hide her hand
or to step back from trying new things. Obviously, there was things
that she had trouble with. It took her a little longer
than the rest of her friends to tie her shoes,
she could never do the overhead monkey bars...
I mean, still, she just got her driver's license, and without thinking,
we bought a car that—for her to boot around in, and the...
the shift has a button on it, and it's her right hand that is affected,
and she just—it's second nature to her, she just did it.
And I thought, "Without having a thumb, how is she ever going
to push that button to get it out of park and into reverse?"
She... they figure it out.