good morning this is a day in our life.
how do you usually start your day? all right time for my line good night I am ashamed and I’m Hannah and we are in
a relationship we loved to tell you I think every day
by snuggling in a little tighter for as long as we can really I just like there
I do yeah it’s actually and you go not yet I was born if in
these knees called spinal muscular atrophy that basically makes all the
muscles in my body extremely what do you want where my like
light gray and the black law solution is it cold – it’s very cool I’m Shane’s
girlfriend and also his caregiver so we live together and I help him with just
day-to-day activities getting up getting dressed she made sure I don’t die yeah
but if you think I’m alive time I view caregiving as just a normal part of our
relationship before Shane I had had zero experience with it but she made it fun
and now it’s just so natural that I don’t really think about it I should
have a different shirt okay they carry the man was always prepared about
relationship from the first day that canonised met together I need help with
stuff all right now how much do you weigh I lay about 65
pounds so I’m small now that I’ve been my chair
I am mobile and independent was there any part of the caregiving that you were
nervous about her taking over I the only thing that I was a little bit nervous
about was having her help me use the toilet so I’m gonna show you guys how I
use the toilet when I have to pick and I’m not gonna take my pants off to show
you this process because none of you wanna see all of the details but
basically what will happen is Hannah normally would lift me onto the bed or
any other flat surface take my pants off and then lift me and put me on the
toilet down and I was being out while I tape yep super meters super normal dress
sure it’s your favorite part of every day no that was like such a personal
thing to have her like my butt to be like oh this is actually not what I
signed up for it I didn’t think that that would happen where there was that
small fear that made me hesitate I have developed in my lifetime what I call my
burning complex which is this fear that people are annoyed by the help that I
need has this just become part of your norm
yeah I mean I spend my time trying to make her laugh yeah the air from that
smell what was it like the first time you helped Shane Cooper I’m trying to
think of what I remember I remember that you were nervous just yes like that was
the first time that you were nervous for anything yeah
she’s encouraged me to not exhibit my caregiving activities as a burden which
has been very healthy for me to reframe some of my needs in a more positive way
I’ve needed help gonna keep my whole life’s just been part of my life and I
mean it’s funny and life a little and they’re sitting in like like childish
sense but it’s just a part of life so yeah it’s really the deal after we make
up we love to read some of the comments that they’ve received on our YouTube
channel could I have a sip Thank You Jimmy get anytime that sauce
on it yeah see you guys are awesome you make me
laugh with how you tell your stories lol oh that was on our Hannah’s most
embarrassing moment video and then I are youtubers and redacted that they have
our relationship together and we get a lot of negative feedback
something for this girl’s got some serious issues on our Valentine’s Day
dinner but yeah yeah yeah she’s here for clout cuz there’s no way that their
relationship is real negative comments motivate us to you know inform and help
the people that don’t like get what we’re doing yeah we question why are
they together like what’s the real reason for question marks because
honestly this isn’t something you see every day especially in this generation
actually in this generation is the one that you see it most in specially not in
this generation yeah now the 19 who saw all this guy rate for disability and
then I love making breakfast together when we have time and so we’ll try up
some eggs or mentioned hash browns and real love experimented with new
breakfast foods we are making scrambled eggs for breakfast she likes to have his
with caramelized onion we get to the other I’m not really there’s a hold
participant but I remember I tend I try to help out with the recipe or other
suggestions like Nikki is too high you’re the head chef since when the architecture therefore that one second is all right
chef what are some adjectives you would use to describe a funny kind cute loving
smart handsome Henry usually helps me spinner
for my food into my mouth yeah for eating at the same time and then haha I
use my hands to assist myself with chewing so I have like this real
specific position that I get in here right now my arms up and a little bit
more okay good I feel like I’m at home with him and I
don’t get tired of him I get tired of most people I think that’s how I knew
you were the one that I could just be with you all the time and never get sick
of you THC yeah so it’s very comfortable just episodes in college the sounds of
shame all right so many brush my teeth now in our apartment the bathroom is too
small for my chair so I go in the hallway and then headed brings my
supplies out to the hallway did you Mikey
yeah good Debbie to raise up yeah I drove up to the online her level while
she pressures Mickey something that comes up a lot in the comments section
of our videos on YouTube is people wondering if Shane’s care is a burden on
me and if I get burnt out if I view it as something that like I have to do like
reluctantly that just sort of I feel life is awful because of it yeah if I
have no life outside of caregiving for Shane um and the answer to that is no
it’s also not that easy to get into your dude
because your mouth doesn’t open very wide so circular motions there’s not
really room for them I sort of do what I can do you have a valley thanks I don’t
it was not a burden it is really like a seamless part of our day it’s not
something that jumps out it’s not like doesn’t take a lot alright it doesn’t
take a lot of time yeah it sound if achill and we’re lucky but it isn’t
difficult she knows like small and you know like I can lift you really easily
like it’s not a everyday at all it’s still like yeah it’s not like I could
demand a on their legs yeah I wouldn’t be with you if your terrible personality as a red-hot I think it’s beyond
brushable that’s not a brush that’s a poem this is a person yeah that’s an
average project is handle your first girlfriend no Kenneth is not my first
girlfriend I think people are often amazed by that fact because they have
this misunderstanding of our relationship and they think the hair is
remarkable for being with me and so when they find out that you know
I have David Carter and they’re like what the other women that I know we
share and so that’s just another comment on the way that society looks at
disability and IP real quick before I go on all right now I’ll pee and then I’ll
do okay this is Shane’s pee jar it’s what
he uses when he has to go to the bathroom so I’ll pick him up and lay him
on the bed and then he’ll pee into this and I’ll dump it in the toilet
yeah there we go nice and easy this is it makes it a lot easier than
having to put me on the toilet every time I only have to pee yeah so and it’s
good for yelling like mountain about yeah I just have to find a place to lie
flat surface to lay on I was like in my chair there’s just not really enough
room to cut the jar right it needs to be if you know I’m saying yeah when we’re
in public the most misunderstood thing is just that he’s not an adult people
think he’s not an adult they think he’s a toddler or young child or my child
he’ll be given kids menus I’ll be asked what he wants to order so when we’re out
in public that’s definitely the most common misconception about him you’re
gonna wish there was a bigger pillow there see all right time to pee do I
hear you sitting through my nonprofit organization I give a variety of
thoughts to use clothes all over the country thanks to programs like Skype
this is my position how is everyone oh yes high energy for this early in the
morning I was born with a disease called spinal muscular atrophy that I’ve looked
at my entire life and this disease makes all my muscles really beats so I’ve used
a wheelchair for my entire life you know I have to do things a little bit
differently my life is still happy and normal and fun I teach kids that
disability is not amazing of them and I tried to give them a healthier
understanding of what whatever the disability is really like that is my P
jar so yeah I’m sorry I usually bathroom and I only have to pee
it’s a lot simpler than having me lifted on the toilet and doing that whole deal
with my DVR eyes in jail wherever I have to go I need to get laying down to use
it because just like reasons the inmates using the bathroom a lot easier so that
the next time they meet someone that has a physical disability they’re not so
nervous or afraid to interact with them I just wanna thank you all for being so
attentive and actually be a questions I really
you know have a great rest of the ladies so I’m in that text and I don’t let her
to know that I’m dumb I could probably just yell for everybody in addition to
all that like caring about stuff that we do in the day we also just have the
regular activities of life like Joann rush we shopping and going to get food
and yeah the Terry giving really doesn’t take up that much about yet finding an
apartment that was accessible was really difficult so we had to make this one
accessible ourselves and we have two ramps that we this is all ice it’s Joe snowy I hate winter I hate winter I hate
winter I hate winter I have a real chair accessible van that allows me to travel
wherever I need to be just a button one first l14 deploy and
I’ll just push that button until it’s all the way out and then Shane will go
on up yeah and then I’ll use like tie-downs tie-downs to strap his Sharon
yeah so I don’t fly all over the place yeah Jen gets bored very easily at the
grocery store or the mall he tends to want to do other things as soon as we
get there are you sure yeah everything on the list on the other hand sometimes he sees
things that he likes and he’ll require that we buy that one just pups today
yeah pops ladies haps I really liked that it was he he finds enjoyment in the
map sure there are always things he truly loves it’s a small things like my
little brown coffee right I get bored her shoe shopping I like to take out fun camels like
snacks make like have fun with all the difficult aspects of life and so we’re
always making fun of I always feels like it will be fun to like tell them picked
out food definitely wasn’t I get here I’m just like okay I’m tired to us it may be I should ride into the shelf
enter and I ride in the shopping cart under I think people think that he
doesn’t help me physically at all and so they assume that like my life is
terrible and first of all like he does help me physically because he can carry
a lot of things on his wheelchair it’s a huge perk that people don’t even think
about but I don’t have to carry bags like he carries everything and cut that
down okay see there are ways that I help ya like physical day is that man is a
student so she is in her senior year of college and very busy with that as well
as that there’s a lot going on the retirees are attention every day are
they gonna get set up to do some work while Hayley goes to your class and you
got me some of the feet yes which is better progress
yeah idea I’m getting she’s snack ready for while I’m gone he’s gonna have
peanut butter crackers I usually just put it in a bowl and then he has plastic
spoons that are light and easy to lift he can just eat them throughout the day
whatever he gets hungry what do you do when Hannah’s not here so I am very
independent once I have my laptop and my phone on my life with those two devices
I have access to the world and so I write at type I some emails I wind up on
reddit okay I’ll see you after I’ll see you probably during my class no
just kidding okay thank you Don Henley does the class
I set up to learn and I can do everything that I have to do right here
I have an app on my phone that turns my phone into a keyboard for my laptop so I
typed everything on my phone and I see it appear on my screen so with that I do
everything I have to do and I just get my work done while she’s young do you worry about Chaney when you’re
adding about when we first moved in together I worried about him I would
worry that there was like a fire and like he was in the house but now I don’t
really I haven’t worried about him a long time I’m like sure that he’s fine
and we haven’t had any issues at the beginning it was just so new and yeah
yeah yeah I don’t really worry about him anymore what happens if you get an itch
while Hannah’s gone I’m late see almost like that like you know a
sudden itch or having to go to the bathroom are kinda just parts of my
experience I have learned how to just be able down the rate of course there are
solutions that I’ve learned I occasionally will remember to have a
straw left for me here that I can reach and then this you know all intended
gives me the ability to reach more of my face if I have like an itch or there are
other people if I have like a bathroom emergency I can’t call like his parents
or friends or something like that Shane I’m home
hello hi how was class Tasos dude yeah yeah yeah actually we
talked about a final paper so it was helpful
yep as often as we can and and I try to have little date nights here and there
so tonight you go out to dinner at one of our favorite restaurants
this is identi romantic night out yeah yeah shot this corner doesn’t look very
like the penis to bang like it’s a nice restaurant hey if there’s a real man at
DQ some stuff laughing good food holding hands
laughter although I was a no but the meal hasn’t started you know to go if I
don’t hold your hand now we usually hold the ends after cheer actually while
we’re deciding if you want to eat more or pull it
okay not usually dessert it’s always too cold those moments you know our thoughts
just have this in time to not be very cam and not be focusing on all the
choices we have to do their lives yeah hey did I let yourself in pin it over
there it’s run away from there wouldn’t want you to even have a shred of lettuce
on your place I’m just making room do you want the lemon not really though I’m
gonna squeeze it very all right honeymoon stage lasted for like eight
months and we were just like non-stop affection and like cutesy like
vomit-inducing adorableness in those eight months but now after living
together for like a year and being together for like three years we’ve
matured they just kinda like settled into our relationship and uh we’re not
always like locked at that yes yeah yeah what do you want what do you want to
start yeah oh you’re gonna love this mashed potato in the same bite oh yeah but do you still love each other just as
much I didn’t love each other more now than we did during our puppy love
phase cuz when you get to realize all these weeks and weeks and months and
years of life together and face challenges and difficult moments you
your love becomes don’t you and it’s not all about just that one’s yeah yeah
feeling I do and then to me get this idea no love the other day with a cuddle
on the couch or wherever and just watch TV or a movie or top just that closeness
is really important and special to us what’s one thing you hope Shane always
remembers about the way you feel about him Shane I want you to remember that I
don’t view caregiving as a burden I don’t think that you should ever worry
about that or feel that way that would definitely be the thing that I want you
to remember my hands cold yeah I know I feel that do you guys know
how when you deliver the disability it’s easy to fall into that thought process
that you are not worthy of other people’s love because you require
different boys help and different needs and other people Society feeds you this
idea that you know you’re not gonna find and that is so not true a lot of people
are curious about our intimate life and we’re keeping that between us but it is
possible and satisfying for both of us I just love my nose all over their body
how we get to be a style that works for her so you’re identifying that there are
people out there who value your interests and your personality and
you’re happy and your body you’re gonna find love I believe that there’s no one
and I love that understands my mind the way that Hannah does my feelings that
she would sit yeah of course yeah yeah and I’m not usually like comfortable
talking about my feelings yeah buy it with you so after we’re done
with our night time hello session then can I helps me get
ready for bed not yet even though our relationship might what a little bit
different on the surface we have all the same
qualities and daily interactions and responsibilities as any other couple I
have a very peculiar position with my arms have to be yeah and then I took a
spark under that because they get sore at night and then they had to lay down and there’s just oh yeah our strengths and our weaknesses
match up really nicely like Shane is physically weak and I’m physically
strong and I mentally Shaun like she’s yeah we complement each other nicely in
that makes us a power puzzle good night now IV for the bitch did hey excuse me
oh you’re so fine all right we’re gonna sleep now so you guys have
to leave but thanks for drugging yes yeah thank you good night you