WEBVTT

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[music] I love you from
your head to your toes,

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I love you from your head to your toes,

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I love you from your head to your toes,

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I love you, yes, I do. I love

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you from your eyebrows to your chin, I love

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you from your eyebrows to
your chin, I love you from

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your eyebrows to your
chin, I love you, yes,

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I do.

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[music]

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[music]

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[music]

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[music] Uh, Shaian is a child that he needs

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100 percent care.

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[music] [music]

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[music] He doesn\'t have any

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independency, and, um, when
he was younger, he had

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some ability like holding his spoon,
playing with his toys, holding his

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bottle. But he lost all of them and
for the last two years, um, he\'s not

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even able to move his
hands or hold his head

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up. He needs 24-hour

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support, each year, we\'re challenged
with new problems. Um, right now, I have

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to cauterize him, he has a
G-tube and I have to feed

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him by G-tube, and also I have to feed
him by mouth because he\'s able to take

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a period (ph) food. And,
uh, even for holding his

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toys, I have to help him.

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[music] She\'s also G-tube fed

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and, and, um, she has
gallstones and she\'s anemic.

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And, uh, she has allergies to latex
and milk and soy. And it\'s very

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difficult to feed her, she\'s allergic to most foods that
we try and feed her. So, that\'s always a struggle, as

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well. And she\'d deaf... No muscle tone... and
mostly non-verbal. Um, she does make some noises,

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but she\'s completely deaf, as well. And... very
low muscle tone... Yeah... which causes other

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problems throughout her body. Yeah: Hypertonia.
And she also has troubles with going to the

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bathroom because her muscles are all weak. She can\'t
pee or poop on her own; we help her with that a lot of

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the time. [music]

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[music]

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[music] From a developmental
point of view, he

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had low muscle tone. He was non-verbal.
He gradually had

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difficulty eating, so, he became entirely
G-tube fed. Was in a wheelchair and as he

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progressed and his condition deteriorated,
he needed more and more medications

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and more and more supports with oxygen and suction and
things. But ultimately, we never did actually have

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a, uh, com-, a affirmed diagnosis. So, to this
day, we don\'t really know what, uh, what his

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condition was. [music]

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[music]

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[music] I would say if you looked
at, uh, uh, a morning scenario,

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um, we, we would be up fairly early.
Um, and uh... David\'s pump

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would have been running the whole night
and, uh, at very, very slow rate and it

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would kind of click off at about maybe 6:30
a.m., 7:00 a.m. in the morning. So, then,

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that, that, uh... All those bags need to
be cleaned and sterilized. They need to be

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reloaded with food and... so, that\'s a...
that\'s a process that takes time. Um, and then,

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uh... generally, he\'ll need some attention... He\'ll need
suctioning. He\'ll be coughing and things like that, so, that

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all needs to be suctioned out. His suctioning
needs to go to school with him and

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so, that will have to be cleaned and
sterilized before he leaves for school.

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He\'s dead weight because he\'s got no control
over his muscles, so, he has to be lifted,

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taken through baths, dressed. Very difficult
to dress him because he\'s, he obviously

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does... he can\'t help you at all. And, uh,
hearing aids. He needs to go with his hearing

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aids, so, you gotta remember all that kind of
thing. They have to quite often be cleaned. And,

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um, before that, he goes... He needs, uh... he\'s
got braces on his legs where, uh... just the

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stop, the muscles, uh... Tensioning...
The tensioning. And so, those need to be

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fettered and we, we are very fortunate.
A year ago he had his tonsils out.

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And prior to that, we were
having to suction him 24/7.

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He comes home from lunch and he\'ll need feeding and he has to
have his feeding pump put on and turned off, and things like

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that, which is, is, is fairly quick. And
then in the afternoons, then, then,

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he\'s back and he\'s with us. And then, he needs
stimulation and people with him, things like that.

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So, it\'s fairly intensive, but, um,
we\'re fortunate in that he\'s got

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such a pleasant disposition.
And this food is a

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mixture of formula and Pedialyte.
We have one caregiver that

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comes three nights a week from 11:00 p.m.
to 7:00 a.m. and then another caregiver

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that comes one night a week from 11:00
a.m., oh, I\'m sorry: 11:00 p.m. to 7:00

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a.m. So, four nights a week are covered by
caregivers at night. We used to have five,

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but one\'s, got scared away. It was too
complex. And what happens if you give

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it at the wrong time, you know, things happened
and you gave it late? What would you do then?

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So, if you give the medicine late, you can just write
in this column where it says... Training and working

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with caregivers always takes time./
In training caregivers, I\'ve made it

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easier by making a manual.
It\'s about 30 pages long,

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and it\'s, I, I have in it if she\'s gagging,
these are the reasons she gags. I have like,

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flowcharts of everything, and, and that helps and they can just look
it up if we\'re sleeping and if they still need help, then, they can

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come get us. And we\'re one door over.
So... Yeah. Uh, Shaian has

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a caregiver that she\'s coming every day.
Actually, I appreciate living in

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Canada because there is lots of
support for disabled child. We have

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30 hours each week for respite.
Also, I find a great

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program that\'s excellent for Shaian.
The program name is great, and

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they, um, have a very special
program at home base and

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they sent a very special
teacher each day at home

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and she spends three hours with him
and I\'m glad I enjoy to see my child

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has like program like
kindergarten kids and, uh, it\'s

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excellent for me because there\'s no \'let\'s
say, take him off that, \' you know.

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U h, he\'s a very sick child, and
that contact with people make

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him like, um, comfortable.
We have no caregivers that

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come into the home. We do have,
uh, Steve\'s mother lives with us

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and she\'s, uh, of huge help. Um, we do have

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one respite careworker who
we took a long time to

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find although we had funding for respite
care to find somebody whom we felt

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comfortable with and who was prepared
to take on a child with a terminal

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illness. By the time he was two, we had,

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um, definitely official caregivers and
respite caregivers coming into our

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home, all of which were just community members,
people that mostly actually that we found through our

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church. So, they weren\'t medically trained; we just
trained them in our house, uh, for the needs that we had

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for Ronan. And they would also help with other things
in the house and the other children. And by the

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time, um, you know, probably by the
time he was three and a half, we

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actually had live in help, or a live-in
caregiver to help because we needed that much

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help. We wanted to, um, make sure
the other children received all the

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care and the needs that they needed without,
uh, neglecting Roman\'s care, as well.

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[music]

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[music] I think when you\'re dealing with

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a child that has a palliative condition
on a day-to-day basis... you, you... it

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becomes normal. And, and when you
visit the hospital, it, it, it

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refreshes all of that in your mind again.
And so, that\'s quite stressful, you

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know, especially from where we live. It\'s a three-hour
drive in the morning; we\'re trying to get kids

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off to school. By the time we
get to Calgary, we\'re stressed.

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Um, then we have to deal with Calgary traffic, which we\'re
not familiar with, which stresses us more. And then, we get

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to Children\'s Hospital and we have to find parking, which
is a foreign concept to us, as well. So, that\'s, that\'s

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stressful in itself. And then, if we get into a
situation where, um, we\'re, we\'re perhaps trying to,

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um, do four or five appointments
in one day, which is, is

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great for us, in, in that, uh, it means
one trip versus two or three trips.

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Um, that, it has its pluses and minuses,

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um, in that, um, quite often,
if a clinic is running late,

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that complicates things in
that we\'re now forced into a

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situation where we\'re having to try and change
appointments, and that becomes extremely difficult. We

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then, that can be compounded if we get
into a situation where, uh, we meet

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with a, um, a doctor for
the first time, and, um,

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i-, because they\'re running late and, and they\'re having
problems, perhaps they haven\'t had a chance to look at

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the file. And, um, we then, our, our first

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10-15 minutes are spent telling
them what Infant Refsum\'s Disease

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is because most people never
heard of it, even doctors

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and, because it is a rare condition. And
so, that compounds the stress on us in

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that we\'re kind of having
to, uh, repeat what we\'ve

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repeated over and over
and over again, and, um,

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and, and I guess that, that just really makes
it stressful. So, I think, you know, if,

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if we would have any advice, it would be
a case of, you know, do your homework.

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If we leave her, even though there is a nurse
there, uh, if they can\'t see her at the moment

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that she needs to be seen and
she can\'t cry out because she\'s

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non-verbal, then, she won\'t get responded to and it
could escalate into something worse. You\'re worried

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about how you\'re going to look after your other
children, you\'re worried that, you know,

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obviously both of us couldn\'t be there with him at the same
time, so, there\'s one person at home with the other three

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children. Uh, you\'re... A lot of us are
worried about missing work because you\'ve

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got someone in the hospital. There\'s such a wide
range of things that happen. But every time

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Ronan went to the hospital, he was
very sick. And he was, he was not

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very responsive and he seemed, probably from their
point of view, to not have much of a quality of

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life. But when they saw him in our home, they could see
that he was happy, that he was interactive with the

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children and that he was having, uh, a wonderful quality
of life. And I think that makes a big difference.

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Uh, one of the times we brought her into Emerge, she was
in a lot of pain. She was screaming, which, she\'s, she\'s

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non-verbal; I mean it took a lot. She was just basically
emptying her lungs. Uh, extreme amount of pain. We

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wanted to know why. But, I mean, once she finally
calmed down, we\'re assuming now it was the

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gallstones that, had been moving around causing a lot of pain,
there\'s no way of knowing for sure. But the actual Emerge

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Doc made the assumption that because she was with palliative care
that they were do-, we were just getting her to the point where she

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was comfortable again and then, it says right on her chart
that they wanted us to go home, but, so they didn\'t

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dig deeper for some of those things without-, because they
didn\'t really realize that this had been something new.

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One of the most helpful things with the continuity,
having, just a, a, a few physicians that really

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knew our family and Ronan, and did
what I, you know, the shortcuts for

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hospitalization, not having to go through Emergency
and also, um, it was a lot easier to get

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discharged. And just kn-, the, the team
knowing exactly what our goals were as far

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as quality of life. Our experience
with Children\'s Hospital...

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I mean, we had so many good
things to say about that. I mean,

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from staff, from the doctors, from the

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nurses and there have, uh, there\'ve

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been cases that, you
know, we didn\'t get the

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attention we needed over there.
And sometimes

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the miscommunication between the
departments, one clinic with another

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one, you know: This is a metabolic
problem, no, this is the

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neu, neurologic problem and they
cannot possibly pull him back.

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When Ronan was getting worst and quite near the end of
his life, although at the time we didn\'t actually know

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that, um, we had decided we wouldn\'t have any more teaching \'cause for four
years, I felt we\'d put in our time and we\'d have residents and nurses and,

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medical clerks and everything and we had decided
we just didn\'t want to do any more teaching. And

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somehow, um, we ended up with
a student nurse and I just

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asked if we could not have any, not have
any students. And it, it didn\'t have any

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problem with a particular nurse, we
were just very tired. And, uh, somehow,

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in, out at the station, at the
nursing station, uh, that translated

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into we were a family that was very difficult
and not very happy. And we actually

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had, uh, I think probably, the nurse manager come in and s-,
ask \'What? Was there a problem, or ...? Is there anything

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going on?\' And I, I, I put the two together and
I said, \'Oh, oh, no, \' I said, \'We have no

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problem, at all. We just had decided not having any
more, any more students. When everyone would ask us

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questions, and probably about 10 times a day you\'d
be asked questions over and over and over, and you\'d

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explain it. And in my mind, I\'ve thought
as I\'m explaining to this doctor, um,

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what\'s going to happen, er, as I\'m explaining the history
of Cassandra to this doctor, and they know all her

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symptoms now, they\'re going to go away and come
back with something to fix her. That\'s what, in

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my mind... The expectation. That\'s what my expectation
was. But then, another person would come into the

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room and ask me to explain the history again.
And I\'d explain the history, I\'d explain the

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symptoms, thinking they\'re going to go away and
they\'re going to come back with a fix. But I see four

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people that I never would see again and then another
person would come in and ask me again. And I

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would just have to explain it again. And I don\'t
necessarily know who I\'m talking to all the time,

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and I don\'t know where that information is going
since everyone else is coming and asking me again.

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He got si-, this... Muscle

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tones, they\'re not seizures, we know
they\'re not seizures. But we had

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this intern, couple of interns that
came over and suddenly did they

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diagnosed him with the seizures.
And finally, we got hold of

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Shaian\'s neurologist and she
called and I says, \'Next

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time, listen to Mom, because she knows
what\'s happening. I believe provision laws

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has enough experience to understand
what is going that we might try

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again, you know. But there\'s a
moment that I really need to talk to

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them and they listen to me and trust me.

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[music]

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Actually, I think that childbirth should be
one of the happiest moments for a couple

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and it was for us, too. First, there
was the most happiest time in our

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time and, uh, his condition
is getting worst each time.

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[music] I definitely felt grief
in the first year because I knew

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that the baby we had was not, you know, going
to develop normally, and and be like our

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other children that we had. So, once
I got over th-, I shouldn\'t say got

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over that, but once I worked through that and
realized that, well, this is the way it is, then,

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I completely shifted into,
um, \'How are we going to

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manage Ronan\'s life and make it the best life
possible for him and for our whole family?\'

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We accept the fact that
he got some problems

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and we, we accept the fact
that we might lose him.

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And it gets easier in some ways because
we are able to adjust and have a

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life and, and, and just kind of live
each day the best that we can, but it

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also gets harder because we start to realize,
you know, what her limits are and we realize...

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And they\'re fairly extensive... and,
and we realize there may not be...

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[sil.]... time when she
learns to read or goes to

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school ...whereas we used to
kind of think that, that would

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be something that would happen...
It is an emotional

00:17:45.000 --> 00:17:49.999
rollercoaster. Um, you feel like
you\'ve-, initially, it\'s a real blow to

00:17:50.000 --> 00:17:54.999
the stomach. And then, uh, when
you, you, you start to, um...

00:17:55.000 --> 00:17:59.999
[sil.] Accept it... for want of a
better word, yeah, accept it or, or get

00:18:00.000 --> 00:18:04.999
used to the idea, it becomes
a little easier. Our duties

00:18:05.000 --> 00:18:09.999
as a parents, we love
him, we care for him, so

00:18:10.000 --> 00:18:14.999
it\'s going to be short-term,
so be it. But it

00:18:15.000 --> 00:18:19.999
has been, you know, we\'re
heartbroken that... he doesn\'t

00:18:20.000 --> 00:18:24.999
have a normal childhood. He missed those...
period that he

00:18:25.000 --> 00:18:29.999
can, you know, \'be a child and
also be a child to us, you

00:18:30.000 --> 00:18:34.999
know? He enjoys his life and we enjoy
him.\' So, we didn\'t have that,

00:18:35.000 --> 00:18:39.999
but we had much more. We
see other kids the same

00:18:40.000 --> 00:18:44.999
age running, talking. Make lots of
fun for their parents. But we said,

00:18:45.000 --> 00:18:49.999
\'Okay, our child is especial, he\'d different
than other. When you think that you\'ve come to

00:18:50.000 --> 00:18:54.999
terms with it, uh, especially in David\'s
condition where they\'re happy that he

00:18:55.000 --> 00:18:59.999
lived this long, you know? It\'s
really an unknown, unchartered course

00:19:00.000 --> 00:19:04.999
he\'s taking... Good boy.

00:19:05.000 --> 00:19:09.999
When Cassandra was four months old,
we found out that she was deaf. So, I

00:19:10.000 --> 00:19:14.999
thought to myself, \'Well, this
is traumatic, but you know,

00:19:15.000 --> 00:19:19.999
we\'ll adjust like everything else.\' And I started
signing to her and I started adding more signs

00:19:20.000 --> 00:19:24.999
to our little, you know, day-to-day
routine. And I would be very

00:19:25.000 --> 00:19:29.999
consistent and I would sign many things to her,
including love, that\'s one she definitely knows.

00:19:30.000 --> 00:19:34.999
Yeah... And... She would sit there. That\'s the A-OK
sign everything\'s fine, she\'d just lay there like this:

00:19:35.000 --> 00:19:39.999
Don\'t mess with me, everything\'s fine.

00:19:40.000 --> 00:19:44.999
[music] Huh. Yeah...

00:19:45.000 --> 00:19:49.999
Yes, there you go. I\'ve heard
that it takes children about

00:19:50.000 --> 00:19:54.999
600 times normally, normal children
about 600 times to learn something,

00:19:55.000 --> 00:19:59.999
and children with special needs maybe 2000 times.
So, I have to think about, I have to say a certain

00:20:00.000 --> 00:20:04.999
thing to her 2000 times before she\'ll do it once. And
that\'s fine with me. I do it every day, and she has

00:20:05.000 --> 00:20:09.999
learned. And it\'s really helped us
in our life. And it\'s really been a

00:20:10.000 --> 00:20:14.999
joy to see our little baby
say, \'Love, Daddy.\' Yeah.

00:20:15.000 --> 00:20:19.999
[music]

00:20:20.000 --> 00:20:24.999
Any small movement, any smart, smile
that he do for us is like, such

00:20:25.000 --> 00:20:29.999
a joy for us. He\'s a, such a
child that, I don\'t know. When I

00:20:30.000 --> 00:20:34.999
look at his face, I see he\'s the
happiest boy in the world and I

00:20:35.000 --> 00:20:39.999
think, \'That\'s it for me.\' We cannot communicate
to him right now, you know, but there

00:20:40.000 --> 00:20:44.999
are some special feeling that
passes for them back. The rewards

00:20:45.000 --> 00:20:49.999
are, far outweigh the challenges in, in our
mind. It\'s been a fantastic experience for

00:20:50.000 --> 00:20:54.999
our family to have David in our family.
He\'s taught us so

00:20:55.000 --> 00:20:59.999
much, I think he\'s been good for
our other children. Uh, they\'ve

00:21:00.000 --> 00:21:04.999
certainly realized that it\'s not all about them. Uh,
it\'s been good for them, they\'ve learned to look after

00:21:05.000 --> 00:21:09.999
him, as well. They\'ve learned to care for
him. I think it\'s, it\'s, it\'s made them more

00:21:10.000 --> 00:21:14.999
compassionate. And we\'ve learned so much
by this experience that when you go back

00:21:15.000 --> 00:21:19.999
to your friends... It\'s hard to explain...
that haven\'t changed, like we\'ve changed

00:21:20.000 --> 00:21:24.999
so much that it feels weird being
around people. You get to a point

00:21:25.000 --> 00:21:29.999
when, when things go on as they have
where, um, it\'s almost business

00:21:30.000 --> 00:21:34.999
as usual and you really have
to kind of sit up and...

00:21:35.000 --> 00:21:39.999
Mm-hmm... and, and face the reality
that, \'Yes, our child has a

00:21:40.000 --> 00:21:44.999
palliative condition and that he is going
to die\' and, and, and it\'s... As I say,

00:21:45.000 --> 00:21:49.999
you almost have to go through that a few times to
get... Mm-hmm... to get to the point where you

00:21:50.000 --> 00:21:54.999
recognize that. And it is an emotional
rollercoaster. You know, we had two great,

00:21:55.000 --> 00:21:59.999
great summers, uh, taking Ronan on, on

00:22:00.000 --> 00:22:04.999
camping trips and, and weekends
and, uh, you know, with

00:22:05.000 --> 00:22:09.999
feeding tube and we had to take the
oxygen, uh, and everything. And,

00:22:10.000 --> 00:22:14.999
uh, it was worth it. It really was...
Yes. We\'re like, trying to

00:22:15.000 --> 00:22:19.999
make our family be as typical as any other
family, and, um, most times I would

00:22:20.000 --> 00:22:24.999
think that many people wouldn\'t want to leave too
far from the hospital that they were, they were

00:22:25.000 --> 00:22:29.999
used to. But we used to like to try to go to
the very edge of our comfort zone and then

00:22:30.000 --> 00:22:34.999
go a little bit further. Well, yeah, and the kids
have those memories instead of memories of Ronan

00:22:35.000 --> 00:22:39.999
being locked in a hospital bed or
stuck up in his room. Because we

00:22:40.000 --> 00:22:44.999
knew what was coming. Uh, we didn\'t know when.
We didn\'t know if it was going to be six

00:22:45.000 --> 00:22:49.999
months or six years, we\'ve been-, just
nobody could tell us, and and we knew

00:22:50.000 --> 00:22:54.999
that that something was going to happen at
some point. And, uh, it wouldn\'t really be our

00:22:55.000 --> 00:22:59.999
decision when it was going to happen, so,
you know, we had to do those things.

00:23:00.000 --> 00:23:08.000
Every night, uh, we have to check on him two or three
times, at least: so, you know, his breathing, his

00:23:10.000 --> 00:23:14.999
airways are open, he\'s not cold or...

00:23:15.000 --> 00:23:19.999
When he gets thirsty, right now, he can not

00:23:20.000 --> 00:23:24.999
call us up, so, we have to basically check
on him regularly, you know, whenever he\'s

00:23:25.000 --> 00:23:29.999
up, feed him, give him some
water and stuff like that.

00:23:30.000 --> 00:23:34.999
And when I turn on the light
and he\'s up and he\'s searching

00:23:35.000 --> 00:23:39.999
around, for a moment, I
don\'t know how good his

00:23:40.000 --> 00:23:48.000
visions are right now when I see and touch him,
you see his joy and, you know, in his eyes.

00:23:50.000 --> 00:23:54.999
It\'s his eyes start sparkling.
That\'s, that\'s... pays off for

00:23:55.000 --> 00:23:59.999
everything.

00:24:00.000 --> 00:24:04.999
[music] Right before one of Cassandra\'s

00:24:05.000 --> 00:24:10.999
surgeries, there was a surgeon talking to me
about Cassandra\'s surgery, why she needed

00:24:11.000 --> 00:24:14.999
it and how it was going to help her or maybe
not help her and and the difficulties with the

00:24:15.000 --> 00:24:19.999
surgery. And he said to me,
\'You know, with children like

00:24:20.000 --> 00:24:24.999
her, sometimes it\'s better to just let go.
And then he continued talking about other

00:24:25.000 --> 00:24:29.999
things. And I had to, I,
I was just focusing on

00:24:30.000 --> 00:24:34.999
those words, you know: It\'s best to just let her go. I didn\'t even
hear what he said after that. And I said, \'Wait, wait, wait...

00:24:35.000 --> 00:24:39.999
Do you mean that it\'s better to
just let her pass away? Like,

00:24:40.000 --> 00:24:44.999
die?\' and he said, \'Well, if she was
my child, that\'s what I would do.

00:24:45.000 --> 00:24:49.999
And... you know, at the time, I was
really, really mad at him. She was pretty

00:24:50.000 --> 00:24:54.999
upset. I think the provision law had

00:24:55.000 --> 00:24:59.999
t-, uh, it should be explained to
us that when is the right time to

00:25:00.000 --> 00:25:04.999
tell this to the family, you know? I
think parents are smart enough to know

00:25:05.000 --> 00:25:09.999
what is going with their kids. I really
appreciate, uh, our local GP when he

00:25:10.000 --> 00:25:14.999
came. And he sort of role-played the different
situations we might face. And we will

00:25:15.000 --> 00:25:19.999
probably be able, be facing one of them
in the not too distant future. He sort of

00:25:20.000 --> 00:25:24.999
role-palled this, uh, role-played as if, if
this happens, this is what you would do.

00:25:25.000 --> 00:25:29.999
Then, her surgery happened and she was better, getting
better. And I started to think about it. You know,

00:25:30.000 --> 00:25:34.999
maybe it was the right thing for him to
say because it really is true. She\'s

00:25:35.000 --> 00:25:39.999
going through so much.

00:25:40.000 --> 00:25:44.999
There were many times when the
healthcare professions believed

00:25:45.000 --> 00:25:49.999
that palliative care meant
dying, not living. And it

00:25:50.000 --> 00:25:54.999
meant, I, I believe that the healthcare pro-,
professionals believed that palliative care

00:25:55.000 --> 00:25:59.999
meant not treating any longer and
just keeping comfortable, rather than

00:26:00.000 --> 00:26:04.999
yes, actively treating an infection
or actively treating certain problems

00:26:05.000 --> 00:26:09.999
without becoming too invasive at,
at the family\'s wishes. So, we

00:26:10.000 --> 00:26:14.999
chose not to sign a DNR
order because, um, we

00:26:15.000 --> 00:26:19.999
hadn\'t really had, uh, a need to have
one, uh, those weren\'t the issues that

00:26:20.000 --> 00:26:24.999
were, were there with our child.
And over and over again, we would

00:26:25.000 --> 00:26:29.999
have, um, different healthcare professions
coming in asking us, you know,

00:26:30.000 --> 00:26:34.999
basically thinking again that we
just really didn\'t understand

00:26:35.000 --> 00:26:39.999
how serious his condition was because we hadn\'t followed in their mind, the
palliative checklist which, uh, you know, point number three would be signing the

00:26:40.000 --> 00:26:44.999
DNR. And that was a problem
because then it affected how they

00:26:45.000 --> 00:26:49.999
looked at us, and how they
felt that we-, how we

00:26:50.000 --> 00:26:54.999
understood what was going on with our child.
And so, because we didn\'t sign a DNR, they

00:26:55.000 --> 00:26:59.999
believed that we didn\'t understand the gravity of his
condition. And yet, obviously we\'ve been looking after

00:27:00.000 --> 00:27:04.999
him for four years, five
years and we knew that

00:27:05.000 --> 00:27:09.999
i-, you know, we knew better than anyone what were
the potentials and the possibilities. We wanted to

00:27:10.000 --> 00:27:14.999
evaluate on each, each
incident that happened, each

00:27:15.000 --> 00:27:19.999
hospitalization, we wanted the
ability to evaluate whether we

00:27:20.000 --> 00:27:24.999
felt that this was the time when, if it was going
to be too far. What he required. You know, if,

00:27:25.000 --> 00:27:29.999
if all he required were some
antibiotics and, and, and

00:27:30.000 --> 00:27:34.999
fluids, then absolutely, we were going
to do that. First day of his third

00:27:35.000 --> 00:27:39.999
birthday, he stopped breathing, his heart
is stopped for a moment and this was the

00:27:40.000 --> 00:27:44.999
first time she told us probably
he\'s a lively (inaudible)

00:27:45.000 --> 00:27:49.999
because when swirling problem happened then the
muscles of his legs died probably doesn\'t look very

00:27:50.000 --> 00:27:54.999
good. And, uh, they asked me what I have to

00:27:55.000 --> 00:27:59.999
do. What is my \'I get you for something happened
for him and they ask me if I need supporting

00:28:00.000 --> 00:28:04.999
on the last moment. I\'m like,
hard and everything should

00:28:05.000 --> 00:28:09.999
be help for him. Looking back on it now,
having some sort of discussion along those

00:28:10.000 --> 00:28:14.999
lines of getting that discussion
in early, earlier on when you\'ve

00:28:15.000 --> 00:28:19.999
realized that you\'ve got a very complex case of, \'How
far would you like us to take it?\' which nobody really

00:28:20.000 --> 00:28:24.999
brought up until palliative care came into the
situation other than that surgeon, who...

00:28:25.000 --> 00:28:29.999
Yeah... you know... Yeah... he was just being honest. And
quite frankly, in all the experiences I\'ve had with all the

00:28:30.000 --> 00:28:34.999
medical care professionals, I still would rather deal
with somebody being honest. But... you know, the

00:28:35.000 --> 00:28:39.999
ugly truth sucks, but it\'s
still the ugly truth and

00:28:40.000 --> 00:28:44.999
sometimes you do need to hear it... Up until...
maybe a little bit of bracing before you do it.

00:28:45.000 --> 00:28:49.999
Yeah. Up until that point that
the surgeon mentioned that to

00:28:50.000 --> 00:28:54.999
me, I had been thinking in my mind, \'I can picture
Cassandra walking down the aisle, like, getting married\'

00:28:55.000 --> 00:28:59.999
and... I kinda still had hopes a little
bit farther than what can actually

00:29:00.000 --> 00:29:04.999
happen. I wasn\'t... you know, cau-,
I wasn\'t really aware or I was

00:29:05.000 --> 00:29:09.999
ignoring the fact that she was
so severely disabled. And,

00:29:10.000 --> 00:29:14.999
um, you know, not that I don\'t want to have
hopes for her, I still do, but now, I\'m more,

00:29:15.000 --> 00:29:19.999
more aware of her limits and, and able to,

00:29:20.000 --> 00:29:24.999
um, almost accept them. It\'s almost a case of
\'Okay, what\'s the problem? I need to solve

00:29:25.000 --> 00:29:29.999
the problem so I can move on to the next case.\' And, and
obviously, with someone like that, you wouldn\'t feel comfortable

00:29:30.000 --> 00:29:34.999
discussing concerns and issues with.
So, it comes down to that

00:29:35.000 --> 00:29:39.999
development of that personal relationship and
just taking a little bit of time, to, to show

00:29:40.000 --> 00:29:44.999
interest in, in, in, in you as a person.
So, there was never

00:29:45.000 --> 00:29:49.999
any \'Well, you should be doing everything
your can or you know, we will, you know,

00:29:50.000 --> 00:29:54.999
this is the way you should be doing
it.\' They would give us, uh, the

00:29:55.000 --> 00:29:59.999
options that were out there and make it
clear that any of them were okay options to

00:30:00.000 --> 00:30:04.999
take and, and that they would do
what we want to do. A lot of times,

00:30:05.000 --> 00:30:09.999
uh, physicians are scared to say what they
think might happen in case they\'re wrong. I

00:30:10.000 --> 00:30:14.999
do remember the first time that someone from the palliative
care team actually said that they didn\'t think he would

00:30:15.000 --> 00:30:19.999
live through the winter, and that was
the first time that, that a healthcare

00:30:20.000 --> 00:30:24.999
professional was actually, kinda giving a
finite line and something that I didn\'t

00:30:25.000 --> 00:30:29.999
know for sure. It was a bit surprising at first,
but then, then I knew. You know, I thought,

00:30:30.000 --> 00:30:34.999
\'Okay, well, they probably know what they\'re
talking about. And so, therefore, I should,

00:30:35.000 --> 00:30:39.999
you know, I should make sure that we...
Yeah... do what we can

00:30:40.000 --> 00:30:44.999
to, um, to continue with our life
being as normal as possible. But the

00:30:45.000 --> 00:30:49.999
child changes and the circumstances
change and your priorities change

00:30:50.000 --> 00:30:54.999
as, as your child\'s disease progresses
or changes or deteriorates.

00:30:55.000 --> 00:30:59.999
[music] Give all your money to your Dad.

00:31:00.000 --> 00:31:04.999
Have a family game night. Have a family
game night. Regular lifetime, right?

00:31:05.000 --> 00:31:09.999
Most families, I think will be relieved when the
conversations are started. So, so, you know,

00:31:10.000 --> 00:31:14.999
be, be as, uh, forward as you
can with each individual

00:31:15.000 --> 00:31:19.999
about talking about the possibilities of their
life and, and the possibilities of their death

00:31:20.000 --> 00:31:24.999
and what we can do in between
to change their lives.

00:31:25.000 --> 00:31:29.999
[music]

00:31:30.000 --> 00:31:38.000
[music]

00:31:40.000 --> 00:31:44.999
So, we went in to the weekend
hoping that perhaps he would

00:31:45.000 --> 00:31:49.999
respond to the antibiotics and, and the BI-PAP would
help him breathe while he recovered from his aspiration

00:31:50.000 --> 00:31:54.999
pneumonia. And, uh, within, you know, 24

00:31:55.000 --> 00:31:59.999
hours, we realized that that probably wasn\'t
going to happen. Because he always did.

00:32:00.000 --> 00:32:04.999
Well, when we would bring him in and get him on some fluids
and antibiotics, he would bounce back... Very often.

00:32:05.000 --> 00:32:09.999
Really fast... And... you know... this time,
it was a little bit different because it

00:32:10.000 --> 00:32:14.999
was an aspiration pneumonia. And, um...
So, we, we watched him and we

00:32:15.000 --> 00:32:19.999
realized that there was a good chance that
he wasn\'t going to bounce back from this

00:32:20.000 --> 00:32:24.999
one. So, again, he was on the BI-PAP
machine and we still had not,

00:32:25.000 --> 00:32:29.999
um, decided about a DNR or not to

00:32:30.000 --> 00:32:34.999
intubate. And, And again I think that people
didn\'t really understand our decision. And at that

00:32:35.000 --> 00:32:39.999
point, the biggest reason... We, we totally
understood that if we put Ronan... if we

00:32:40.000 --> 00:32:44.999
intubated Ronan and put him on a ventilator, there\'d
be a very, very high chance that we\'d never be able

00:32:45.000 --> 00:32:49.999
to get him off a ventilator because his
muscles are so weak. But I also knew

00:32:50.000 --> 00:32:54.999
that the time surrounding death needed to
be calm and quiet and as controlled as

00:32:55.000 --> 00:32:59.999
possible and that his brother and sisters needed
to come in and, and be with him and see him. And,

00:33:00.000 --> 00:33:04.999
um, we still maintained treatment. It wasn\'t
that we stopped any antibiotics or fluids,

00:33:05.000 --> 00:33:09.999
certainly, we had the BI-PAP on. And, uh...
During the night, um, his

00:33:10.000 --> 00:33:14.999
oxygen saturations dropped very low and I
knew his, that that wo-that it was too low to

00:33:15.000 --> 00:33:19.999
be treatable. And that was the time that we
knew. Yeah. When, when you leave, you know

00:33:20.000 --> 00:33:24.999
that that\'s it, that\'s, uh,
the, it\'s up-, it\'s over.

00:33:25.000 --> 00:33:29.999
And there\'s nothing like that; there\'s nothing
else that you can describe and... Yeah... and

00:33:30.000 --> 00:33:34.999
you know we\'ve done that twice. It doesn\'t, it
doesn\'t make a difference. It\'s equally hard both

00:33:35.000 --> 00:33:39.999
times. So... Yeah... So, I
don\'t know a thing. I, I don\'t

00:33:40.000 --> 00:33:44.999
know, I don\'t know if anybody, if I can
make a suggestion to say what would make it

00:33:45.000 --> 00:33:49.999
easier. Yeah. I, I think, you
know, your own circumstances,

00:33:50.000 --> 00:33:54.999
um, it depends like... Or it happens to be like,
the middle of the night and the hospital is

00:33:55.000 --> 00:33:59.999
quiet and... for us, that... I think that was good, I think I would have
had trouble walking out, you know, at 2:00 p.m. in the afternoon with

00:34:00.000 --> 00:34:04.999
everybody having the hustle and
bustle of their regular day

00:34:05.000 --> 00:34:09.999
because that... I think that would be hard.
So, maybe if it were a daytime thing like

00:34:10.000 --> 00:34:14.999
that... Just having a quiet way of leaving. The
decision we made sort of spur of the moment that,

00:34:15.000 --> 00:34:19.999
um, that didn\'t work for both of us. When we
were at the hospital, um, we knew that we

00:34:20.000 --> 00:34:24.999
would have to take Ronan\'s wheelchair
back and John just couldn\'t

00:34:25.000 --> 00:34:29.999
bear pushing an empty wheelchair out of the
hospital. And so, I th- ... My logical side said,

00:34:30.000 --> 00:34:34.999
\'Okay.\' You know, we\'re just going to
have to bring it back, anyway. But, um...

00:34:35.000 --> 00:34:39.999
In the end, in the end, we had... I, I had to
go back and get it; and it\'s sitting here,

00:34:40.000 --> 00:34:44.999
still because, um, that was where he sat.
And I couldn\'t...

00:34:45.000 --> 00:34:49.999
Our house seemed, uh, like it had no...
no memory

00:34:50.000 --> 00:34:54.999
of Ronan.

00:34:55.000 --> 00:34:59.999
[music]

00:35:00.000 --> 00:35:04.999
I believe our life is such a short
term and probably there\'s a better

00:35:05.000 --> 00:35:09.999
life. And... But this is everybody\'s

00:35:10.000 --> 00:35:14.999
right to enjoy this short-term life.
And things that happened in my

00:35:15.000 --> 00:35:19.999
child I don\'t wish for anybody,
but I accept that and I think

00:35:20.000 --> 00:35:24.999
maybe, uh, this is an example...
test that I have to do at this

00:35:25.000 --> 00:35:29.999
world and I accept that with happiness.
And I think my response

00:35:30.000 --> 00:35:34.999
would be, as his mother, is loving
him and support him; and this

00:35:35.000 --> 00:35:39.999
makes me happy. There\'s
times, you know, you always

00:35:40.000 --> 00:35:44.999
question. Is, is, you know, did we do something
to deserve this? And that, that, there\'s

00:35:45.000 --> 00:35:49.999
natural questions that people always ask,
I think, and it\'s just human nature.

00:35:50.000 --> 00:35:54.999
Um... But it was always,
always important to us

00:35:55.000 --> 00:35:59.999
that, that we, that the, the
family came first whenever we

00:36:00.000 --> 00:36:04.999
did. Yeah, that our, our belief was
strong in, in the church. We didn\'t ever

00:36:05.000 --> 00:36:09.999
blame... like, blame God, or,
or anything like that. As

00:36:10.000 --> 00:36:14.999
we cared for Ronan, we
knew that, that there was,

00:36:15.000 --> 00:36:19.999
uh, a plan for him and it wasn\'t
up to is what that fate would be.

00:36:20.000 --> 00:36:24.999
In our faith, we have a very strong
belief in the um, afterlife.

00:36:25.000 --> 00:36:29.999
And we believe that families are
forever and, uh, uh, in our faith, we

00:36:30.000 --> 00:36:34.999
are sealed together as families.
A, A reason for our, um...

00:36:35.000 --> 00:36:39.999
Being... being on earth is, is that we
come here to be challenged. Uh, we come

00:36:40.000 --> 00:36:44.999
here to face different challenges. And,
um, and as spirits, we need different

00:36:45.000 --> 00:36:49.999
things, different challenges in our lives. You
know, day to day is how you live. You, you live

00:36:50.000 --> 00:36:54.999
day to day; that\'s how she lives. You just need to make it through.
If she\'s having problems, you do what you can to help with

00:36:55.000 --> 00:36:59.999
that, if she\'s having fun, make the most of
that. I mean that\'s really, really important to

00:37:00.000 --> 00:37:04.999
have those, those memories for, for
everything. I mean that\'s, that\'s

00:37:05.000 --> 00:37:09.999
Cassandra, not when she\'s in pain, it\'s
when she\'s having fun. But I believe in

00:37:10.000 --> 00:37:14.999
fate. And I feel like, my
entire life I\'ve prepared.

00:37:15.000 --> 00:37:19.999
I remember experiences from when I was a child
and I feel like my entire life has been

00:37:20.000 --> 00:37:24.999
set up to take care of Cassandra. I
feel like everything I\'ve learned in my

00:37:25.000 --> 00:37:29.999
life was aimed toward this experience.
And that helps me to

00:37:30.000 --> 00:37:34.999
feel like I can do a good job, and I know what I need to do
and I know what I need to do and this is what was meant to

00:37:35.000 --> 00:37:39.999
be. We view David as, as
somebody that is a tremendously

00:37:40.000 --> 00:37:44.999
special person and somebody
that it really didn\'t need to

00:37:45.000 --> 00:37:49.999
face the kind of challenges that
normal people face. And so, from

00:37:50.000 --> 00:37:54.999
that perspective, he\'s a huge
blessing in our lives because we feel

00:37:55.000 --> 00:37:59.999
privileged to have been chosen to be
the parents of a child or a spirit so

00:38:00.000 --> 00:38:04.999
special that he\'s never needed
face those challenges. And we

00:38:05.000 --> 00:38:09.999
know that his experience
here on earth will be brief,

00:38:10.000 --> 00:38:14.999
um, and he\'ll move on and he\'ll have great
joy. And so, that\'s a comfort t-, um, to

00:38:15.000 --> 00:38:19.999
us. I think the biggest
challenge there is that,

00:38:20.000 --> 00:38:24.999
um, we need to learn things from him

00:38:25.000 --> 00:38:29.999
and we already have. You realize
that, uh, even a little boy who

00:38:30.000 --> 00:38:34.999
couldn\'t speak and who couldn\'t walk
or talk can touch people\'s lives. And,

00:38:35.000 --> 00:38:39.999
um, that made me grow and realize
and accept people the way they

00:38:40.000 --> 00:38:44.999
are and that they have value, that
sometimes we don\'t see right off. You

00:38:45.000 --> 00:38:49.999
know, a lot of people wish their child didn\'t
have the condition or could have lived

00:38:50.000 --> 00:38:54.999
longer and I maybe wished when
he was younger that he could be

00:38:55.000 --> 00:38:59.999
cured or, or that he was like my other
children. But by the time that he died, I, I

00:39:00.000 --> 00:39:04.999
didn\'t wish that any little bit about him was changed
and I somehow in my heart knew that he was supposed to

00:39:05.000 --> 00:39:09.999
live five years, you know? But, uh...
Yeah... that was the length of time he was

00:39:10.000 --> 00:39:14.999
supposed to live five years. I mean, it doesn\'t mean you don\'t want him back
with you, but it\'s like you would have to be sort of in suspended time \'cause

00:39:15.000 --> 00:39:23.000
it was the right time for him.

00:39:25.000 --> 00:39:29.999
[music] We are chosen to care for this

00:39:30.000 --> 00:39:34.999
kid. We are not un-, we
are not unlucky, or if

00:39:35.000 --> 00:39:39.999
there wasn\'t bad luck, or, you know, we
got cursed or something that we got this

00:39:40.000 --> 00:39:44.999
kid. So, I look at it from
the other end. He\'s an

00:39:45.000 --> 00:39:49.999
angel and with a bit of broken wings. And we\'re
going to care about him as long as we can.

00:39:50.000 --> 00:39:58.000
[music]

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[music]

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[music]

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[music]

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[music]

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[music]

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[music]

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[music]