WDSD Facebook Live

hello did you guys like my elevator
music actually elevator Muzak hello I see all kinds of thumbs up and stuff
this is kind of scary but welcome welcome to my first ever Webathon or
facebook life this is the official carolyn chase DSDN webathon and I’m
your host carolyn chase so thank you for joining hi Shirley I see everybody’s
saying hi and they’re gonna probably be a few more people adding so this is
kind of exciting I’ve got a lot of good stuff in store for you it’s gonna be
exciting and fun and hopefully you guys will be entertained I can’t promise much
because I’m super super tired and exhausted but hopefully I have enough
adrenaline to keep myself going let’s see we were gonna have some live
interviews and we’re gonna have a few giveaway so actually one big giveaway of
two hundred and fifty dollars so stay tuned for that we’re gonna give $250
away to one of our rockin moms to help them get to a retreat and I’m also gonna
share my personal story about you know my I guess diagnosis for Ella and how
that came about and you know just kind of show you guys that you know that
there’s a huge array of emotions a huge array of feelings that go into it but
not just with me as one person but within just my family alone so I’m gonna
kind of give you a little bit of perspective how everybody reacts
differently to the news that somebody in their family or somebody that they love
has Down syndrome so let’s see who is here let me see
we’ve got Gini and hi so a if you are a rockin mom in your in DSDN here give a little
heart so that everybody can see that you’re
here and know that you know you guys are here too we’ve got some rockin moms who
are out there giving our support giving their support to me
and I really appreciate that you’re here I know that the time difference can be
funky I know some of you are all the way on the other side of the world and some
of you I think was that just Devin that just like that
thank you he’s in Korea and there’s people that are on the other side of the
country and the time difference is really bad Facebook told me 8 o’clock
p.m. my time was the best time to do it that’s why I picked 8 o’clock I know
it’s a Wednesday but I see oh I see Joe and Sharon hi huh your little faces come
up and then it gets pew and turns into like a little heart so that’s kind of cool
I’ve never done this so far so let me get started today is world Down syndrome
day 321 you can see that right here I don’t know if you guys can tell but I
gotta write those backwards and for… some… does it say the right thing Ohdang it okay so it in here oh man okay so on my screen oh no they are backwards
how does it get backwards already well that just goes to show you that even
with I think I turned it I think hey flip it upside down I think I turned it
upside down it’s really complicated this whole Facebook life thing is really
complicated thank you I’ve got my helper today
Jackson’s helping me and he’s gonna kind of like take notes too so if you have
questions or if you just have a comment and you wanted to say hi um he’s gonna
take your notes down and you can feel free to say hi to Jackson – yeah
somebody said it was right but Roxanne said it was correct but oh is it correct
turn it upside down yeah yes that’s good okay so for me I’m seeing it I’ve seen
it now the right way dang yeah yeah yeah okay it is the right
way okay so it’s a world Down syndrome today because today is world not
national not local it’s world Down syndrome day it’s the third month of the
year and it’s the twenty-first day because there’s you know three of the
21st chromosomes so I think okay yeah world Down syndrome day is awesome
that’s how you can remember that that’s really the only way that you can
basically diagnose somebody with Down syndrome because there’s lots of markers
and there’s lots of things that can show signs of having Down syndrome but really
the only true test is a blood test is DNA test to look at your DNA so
everything from the almond-shaped eyes to low muscle tone even heart conditions
you can have one or more of these and not have down syndrome I mean um yeah so
the only way to tell is with that extra chromosome so if you’ve got 47
chromosomes instead of 46 that’s Down syndrome well if it’s on the
21st chromosome so I just wanted to share with you you
know the group that I’m raising money for I know I said that m word and I know that’s gunna turn a lot of you off I know money issues right but hang in
there I’ve got lots of ways that you can help and give your support that don’t
require you to pay any money and one of them is to just share this feed you know
hit the little share button and that way other people can see it and hopefully
they have the money and they have the funds and then they can help and support
so through sharing it you’re kind of doing your part too so oh I’m seeing
lots of everybody here this is my cat okay um yeah so one of the other things
that you can do is I I think you can see a link in the comment section if you’re
on your cell phones I don’t think that you can click on that link right now
afterwards after it’s been posted you can click on that link and it’ll work
but if you’re on your cell phones I don’t think that’ll work I think you
have to be on a laptop or a PC of some sort for that link
to work but if you’re tech-savvy you can minimize this screen and see
another link in the description of this video so if you want to go to that link
and if you can go to that link great you can go and that will take you to the
donation page and at the end we’re gonna take a look at that and see if if I
inspired anybody to donate which would be cool um or you can just watch the
page because it it updates regularly on its own and you can you know have an
extra sense of thrill by kind of watching it either do something or maybe
the thrill of watching and do nothing and wondering if I’m gonna panic or
something I know a little anxiety to your life but yeah and if you can’t
click on that link that’s okay you just wait till the feed is done and over with
and you can check it out afterwards and that link will be available to anybody
from now until the first of June so I think Jackson do you have some questions
that you’ve been writing down so let me tell you a little bit about dsdn I can
give you a bunch of facts and figures and like statistics about you know
what they do and their services that they provide but I think you can get
that with a click of a button you know Google will tell you just type in DSDN
that’s Down syndrome diagnosis network and you can read everything you want to
know about what the organization officially does so go ahead and do that
at some point but let me I just want to tell you what they’ve done for me and
how they have helped me and how they’ve helped Ella and how they have helped my
family I think that it’s really more kind of the reason why I’m doing this
anyway is really how it’s affected me and how it’s affected some of the
other moms that I’ve met on there and we kind of all go through that the same
kind of cycles and it really helps and one of the things that the most valuable
is after diagnosis whether it’s a prenatal diagnosis or
whether it’s a birth diagnosis it’s a pretty scary experience for me
personally I wasn’t able to talk to anybody for like three months I mean I
wasn’t able to talk to a geneticist for three months I didn’t know what was
gonna happen with my baby girl so I was living in fear and it was really
traumatic time to not have information you know and then after she was born
after she was born I went to some of the local groups expecting to kind of
find my family and find out more information about what life is like and
instead of instead of finding that um you know I got I got stuff like this
which is like it’s helpful it’s a giant binder and you know it has like really
helpful information in it really like look like a whole page of doctors and
specialists it’s like there’s like three pages like that they they have like tons
of facts but nothing that was gonna help me nothing that was gonna help with
cataracts and how to deal with cataract surgery and nothing that was gonna help
with reflux and nothing was gonna be available in the middle of the night
when I needed to you know find out some information that wasn’t about facts or
when I was just kind of panicked or worried so um the local group wasn’t
really working for me though I mean they only meet once a month anyway and when
you have a baby who maybe they have to have some surgeries coming up and they
can’t be out in public you don’t want them getting sick before like a big
operation or a big procedure so this local group wasn’t working and I needed
to go somewhere to get some kind of real information and that’s when I found DSDN and I was able to learn all kinds of things believe it or not people
on there that had little babies just like mine who had cataracts and had
surgery and had you know glasses or contacts or other things and other procedures they had acid reflux and I was able to get like real information for my situation
you know not just you know somebody that had been through that kind of thing like
eight years ago but they don’t have current information about it now
and that’s kind of where I was at with the local group but was my dsdn group
everybody has you know a six month old or you know somewhere somewhere in the
range of the same age that ella was it so that was really handy for me and
that’s just one way that they were helpful for me was just talking through
some medical issues and finding information that I wasn’t gonna be able
to find at my local group and the other side of it was that you know what if I
was having a bad day and I don’t want to go and complain on Facebook that I’m
having a bad day because a lot of people they don’t get it they don’t understand
it you can have a bad day and still be okay
and you can you know you don’t want people feeling sorry for you and you
don’t want people feeling like down syndrome is terrible look what it’s
doing to this person because that’s really not the message that I want to
send when I say I’m having a bad day I want to be able to say you know I have a
bad day and I just need somebody that’s gonna go hey you can do it and that’s
what I get when I go to dance and group I get somebody that says hey you know we’ve been there and you can do this so yeah that’s what I that’s what I get it with
this group and that’s why I want the group to continue because there’s lots
of people like just like me and that can’t take their babies out or maybe
they’re really shy maybe they don’t want to they’re not ready to go into public
yeah they’re not ready to talk with somebody in person about you know their
Down syndrome diagnosis you know they don’t they’re just not ready for that
and they want to have a private safe place that they can go that they can
work through some of these issues so yeah so if you’re just just now checking
in hi welcome and I’m here just talking about DSDN I’m
talking about world Down syndrome day I’m gonna be giving away two hundred and
fifty dollars don’t go anywhere I’m also gonna be interviewing at two close to
individuals and I’m gonna be giving my own personal a testimony I guess as to
how that diagnosis personally affected me how I was able to kind of work
through it and then eventually how how I feel about things now to kind of show
you like a spectrum of different reactions and how everybody’s different
everybody has a different reaction and that’s the beauty of Dee Sen wherever
you are however you’re feeling there’s somebody there for you that gets it and
that’s really really awesome all right Jackson do we have any comments or
questions yet all right so again if you have comments or questions Jackson’s
standing by and he’s gonna write them all down and he’s ready for you so I
just want to say hi again to all of you DSTN moms who are watching I know some of you are you’re really struggling right now with world Down syndrome day
you’re not they’re just you’re not there yet to celebrate it and that’s okay and
that’s okay and nothing’s wrong with that and so if you’re here and you’re
still feeling like that and this is hard for you to watch I want you to know
you’re okay you’re doing great you’re good parent and just because
you’re having personal struggles or issues with certain aspects of what Down
syndrome means it doesn’t mean that you’re not the best parent that your
baby could possibly have so thank you again for watching you know for stopping
by and I hope this isn’t too hard for you and I hope you’re not getting some
kind of message that you know in some way you’re you’re doing something wrong
or I’m doing something right and you’re doing something wrong or anything like
that because I think that’s what world Down syndrome day is really about it’s
not about celebrating Down syndrome it’s about celebrating differences
celebrating differences and accepting and loving what’s different in all of us
and that’s that’s what it’s about that you know people with Down syndrome are
different and we want to celebrate that we want to
celebrate the fact that difference good and so if your mom or a dad and you feel
different about down syndrome than some of your other Down syndrome parents
I guess parents that have children with Down syndrome that’s okay too because
you’re different too and that’s that should be celebrated too so you
celebrate by not celebrating and that’s okay too
all right so let’s do I think he’s actually Mike asked a question what’s going to be done with the money so that 200 I think you’re talking about the two hundred and fifty dollars so
what happened was I I reached one of my goals and or maybe you’re asking about
what’s gonna happen with all of the money that’s you donate I’ll tell you
about both the money that goes to DSDN goes to it’s a nonprofit organization
and like I said you can just Google DSDN Down syndrome diagnosis network it’s a
nonprofit organization and they out are there like outreach like an outreach
group where they go and they talk with doctors and medical professionals and
give them updated information not just about Down syndrome but about families
and how best to tell a parent that their child is gonna have Down syndrome how to
tell it in a way that isn’t doom and gloom you know and how to tell it to
them like that’s it’s not a death sentence either it’s not something that
they need to carry fear around in their hearts for they go out there and
talk to doctors and they talk to nurses and they talk to geneticist and they talk
to different people and they let them know you know what their experience is
they’ve talked to hundreds of moms and dads out there that would have liked to
have their diagnosis given to them differently so yeah the actual money
that I’m giving away if you’re asking about that and I actually got to one of
the levels of my donation thing and you know each level you get a different
prize and I’ve been spending earning those prizes and then I’m able to share
them so so the first prize was what was it
Oh registration I made my registration so I got that covered
I really couldn’t share that my second prize was a the hotel stay was covered
and guess what it’s a two occupancy room so I found a mom who was not doing a
fundraiser she’s gonna pay for the trip all by herself and I said hey I want to
help you with the cost of it you know she she had other things going on you
know she had you know the new baby and the whole thing going on and it was
still a lot for her so I’m sharing my room with her now she can come and
basically combine total of like nine hundred dollars that the two of us
combined saved because I was able to do that so yeah and then I finally reached
two nights ago some anonymous angel donated a thousand
dollars and I was able to reach my next goal which was to earn my travel it was
a $500 gift card and my airline ticket only cost two hundred and fifty so I
bought it and then now I have $250 to give away so I’m gonna give it away to
another mom who is having to pay for her trip and who might not make it to that
level it’s really hard it’s $3,000 they have to earn I mean I didn’t think I was
gonna make five hundred let alone three thousand so I’m gonna find another mom
I’ve got a whole bunch of names like over 22 names of moms who really could
use it it really really could use it and so one of those lucky ladies is gonna
win so I’m really excited about that so again if you’re here from DSDN
you’re watching to see if you can win give a little heart cuz let everybody
see who you are and you never know somebody might click
on your name um later and try to find your fundraiser page and maybe help you
so hey it’s worth a try okay so I think I’m gonna move on again
if you click on one of those links either in the comment section that I
have or in the description you can find that page and you can all
so donate and help some other really great mom get to this retreat and this
retreat is so important it’s self-care is self-love it’s time to rejuvenate
recoup and go back and hit it hard you know you have all this you know anxiety
and fear and it’s time to relax and just kind of let it loose and we get to meet
all those women who we’ve been basically family that we’ve become family and we
get to meet up with them and hold them and talk to them in person so this is
really awesome it’s a really great opportunity and not everybody can afford
it so that’s my goal is to try to help more people get there alright so Jackson
yes I think we’re gonna have our first interview and I wanted to show you kind
of the different levels of the different levels of the diagnosis and how it
affects people differently because like I said I think world Down syndrome day
is about celebrating our differences and not one of these stories that you’re
about to hear is right or wrong they’re just different and so I kind of want to
talk with sibling of somebody who has Down syndrome so that’s my oldest son
and I want to talk with him and maybe ask him a few questions so say hi
Jackson hello it doesn’t look like it in this but um he’s like a whole lot taller
than me in my nervousness for being live I tore
my questions wing it okay okay okay so tell us about yourself um I’m Jackson
sixteen years old and my baby sister Ella has Down syndrome
yeah so what I mean do you remember the day or the moment when you heard that
she was gonna have Down syndrome yeah I do I was I don’t remember the exact
date but it was when she was close to being born and you
were telling me that when she’s born she might have down syndrome yeah so how did you how did that make you feel that I mean what kind of thoughts are going
through your head well I didn’t know exactly what it was to begin with it was
kind of worried about it I didn’t know exactly I was it was gonna affect her
anything so I was just kind of worried and I wanted to know more about what it
was you know that’s not uncommon I think a lot of people feel that exact same way
because you you’re Down syndrome and you don’t know how it’s going to affect your
family or your life there’s so much unanswered questions that won’t be
answered until until you meet that person right so I mean that’s to me that
feels like like a pretty pretty typical you know worry very typical concern so
I mean how do you feel now now that you’ve met her and I mean she’s six
months old she so you got to know her for a little bit right hmm
I’m kind of relieved I mean she doesn’t seem that different from another baby I
mean she’s considering she’s a baby right now
I was she seems pretty happy and healthy so I’m kind of feeling relieved yeah
like she seems like – like – like she totally fits in with our family yeah
yeah she’s funny she does like little kind of like baby birdy faces when she
gets excited like or she’ll crunch up into like a hedgehog she’s oh she wants
to like hug I mean she’s just a ball of cuteness right yeah okay well so if you
were if you were to talk to add another sibling what advice who you know who
might be having a brother or sister with Down syndrome what advice would you
would you give them um I probably tell him just to try and be there for them
and try and help them out like just in their everyday life try to be around as
much as possible to help them through any kind of problems they have and to
just try to help them be as successful possible yeah I mean is it would you say
that that’s hard work would you say like helping help me I mean if you if you
really you know care enough to yeah it’s not that much work it’s you just have to
keep being there and being mean supporting so just to clarify and
Jackson’s our oldest and we have two younger brothers and Ella so you’re
pretty experienced with younger siblings right so I mean for him he’s you know
he’s basically like saying hey she seems she seems like you know like the
other two yeah I mean he’s having to change more diapers than he did before I
don’t think he’s changed any before so that’s a good thing alrighty Jackson I really appreciate
that you’ve come and I’m glad that you came out and talked to everybody I know
like sitting this close to your mother in public is probably embarrassing I
appreciate it all right so yeah give Jackson your hands in your hearts and
let him know that you care and thank you you can go okay goodbye everybody you know big thing that we worried about
was how Down syndrome would affect you know all of all of my kids all my other
kids and that was something that was worrisome for me and turns out I didn’t
have anything to worry about because brother is her brother and a sister is a
sister and in our family it didn’t really um it’s not really affected them
and I’m not really worried about the future either because you know we have a
pretty big family and we’re all pretty loving and we take care of each other
and that’s just kind of ingrained in us and whatever happens it’s gonna happen
we’re gonna be prepared for it and we’re gonna you know we’re gonna make it
through alright I see a dad says great job and Maryann she had a question I don’t know what Maryann’s question was because
when I sold Jackson he can leave I thought he was gonna sit over here and
take notes but he he took off so he says he’s gonna come back
anyway let’s um let’s have I have a second guest and we’re gonna get him on
real quick because I know a lot of you have to go to bed so if my second guest
wants to prepare and come on that would be great
it’s a special secret guest that nobody nobody knows about so hopefully I’ll get
it figured out that was my first time doing a facebook live and I’m trying
something that even the professionals don’t really they don’t really do so I’m
hoping that I don’t I don’t screw it up so ladies and gentlemen please welcome
the one the only Eric chase okay so there’s like a delay so I’m gonna try
not to talk over I mean I try not to talk over you but just so everyone knows
Eric is in a different state he’s been gone for the last three weeks or almost
three weeks in the military so he’s been in training and so he’s been very kind
and patient helping me with this and also agreed to be interviewed facebook live
so it took a couple of hair-pulling tries to figure this all out so thank
you Eric thank you for that being patient with me we’re glad to be here okay so and uh before I start Maryann
asks how long is the retreat and where is it the retreat is three to four days
just depending on how many days you earn I’ve earned three days and it is in
Phoenix Arizona and it’s in September so it should be really great it should be
awesome there’s this kind of like a water resort like
waterslides I don’t know it looks awesome
I’ll have to tell you more about it later but anyway so in tearing up the
note cards for jackson i tore up the note cards for you too okay so we should
be good okay yeah I mean okay so you and I have very drastically different
stories of this diagnosis I was informed by a doctor and you were informed by me
so walk me through how you learned about it the whole pregnancy process because
we were given a prenatal diagnosis and then up until you know the day she was
born in and how you feel now so just kind of like tell the story about how
how things have been for you okay well we you told me that the doctor told
you there were signs that the baby could have Down syndrome and then we both went
together to geneticists to get the actual results of the blood tests and
that’s when we found out but initially when you told me there were indicators
for Down syndrome I kind of thought well we’ll we’ll see where we’re at when we
get the actual diagnosis and we waited for that and then we’re moving to the
genetic counselor and they talked to us about Down syndrome and told us that it
was like a 97% chance we both kind of right there and then we’re like okay
well we can deal with that you know and I think she was trying to get us to do
the amniocentesis that was a big deal to her but we kind of were both like well
no I’ll just prepare it for the baby to have down syndrome and if she doesn’t
that’ll be good – yeah like 99 percent right yeah it wasn’t working medical
risk to do another procedure when we can just prepare for it so for me personally from that time until the baby was born I just told myself you
know growing up and watching TV and hearing about Down syndrome is different
than actually knowing about it so the day the genetic counselor talked to us I
kind of thought I don’t really know about Down syndrome until I experienced
it myself so I’m not going to kind of go with the
preconceived notions or TV shows or things like that and so I just told
myself that day that you know we knew there could be possible medical
conditions that would come up because of Down syndrome and I wasn’t gonna worry
about anything until it was time to worry yeah that made me worry yes I
remember you throughout the pregnancy they were telling me yeah you’re
throughout the pregnancy you’re telling me I think you’re in denial and you’re
not really prepared for what’s to come and I don’t think you understand and but
I mean my whole philosophy from then but I mean my philosophy from then and even
to now is you know you worry about stuff when it’s time to worry about it so um I
wasn’t gonna worry about her having Down syndrome until she was born and they
actually went yes for sure she has Down syndrome and then she did and even then
I wasn’t worried because she was born healthy there weren’t heart
conditions or anything that needed immediate attention the the cataracs we
noticed right away because their eyes looked silvery in the pupils and we
thought that was oh yeah I was like day two so yeah that was a little worrisome
when we started thinking about that kind of stuff but it wasn’t for a few weeks
later or maybe a month later that the doctor talked about scheduling the
surgery and so once he talked about the surgery and we’re actually there
putting her into surgery that’s when I had worry because anytime you put an
infant under and do surgery on them you’re worried yes you’re worried
they may not survive they may not wake up those kind of things so that was
stressful and then having to do the third one third eye surgery was
stressful for sure but even now I mean we we’ve talked about a lot of stuff and
I just you know one thing at a time when it comes up if it’s something to worry
about then that’s when it’s time to worry but I don’t want to walk around
every day being worried and I don’t want to be feeling bad so I just take it one
thing at a time do you foresee any situation where you
you would feel bad or where you would maybe have issues or problems you know
like there’s a lot of moms and dad’s out there who they’re real
sensitive I mean and if you address their child like Down’s baby or and not
putting the person first you know a baby with Down syndrome is the preferred but
it can be really emotional or you know just walking through the park and
somebody notices that your baby has Down syndrome and maybe you weren’t kind of
expecting that because you kind of you put on blinders and you don’t really
think about it anymore but do you kind of do have you thought
about that like whether or not you would be shocked by by somebody else or maybe
have an down day where you you know feel like you’re down about the whole
diagnosis no I mean personally for me having a down day or whatever I don’t
really think think about that but I’ve thought about other folks and things
they might say and the way they might behave and if it’s if it’s rude for
somebody without Down syndrome that I’ll probably react poorly to it the way I
would for someone without DS if it’s yeah if it’s not using the right
phrasing or preferred what most people prefer I think it’s reasonable to say
that if people don’t really know what they’re talking about or they don’t know
enough about the topic then I can just let that kind of stuff go because until
I had a baby with Down syndrome I was probably in the same boat so I don’t
think those things will really throw me off or I’ll be too angry about them so
you know honestly I slip up all the time and not intentional I’m only just now
become you know aware of like terminology and how that works and why
it’s important especially for the medical community to address children
who with Down syndrome as children with Down syndrome and not you know the
Down’s baby in bed 3 I mean you wouldn’t say cancer baby in bed 3 or you know
you wouldn’t address any other child with any other condition in the same way
so why is it different with a baby with Down syndrome so I can see
I’m not particularly interested in like being an activist about it or trying to
convince other people have changes there behavior
or anything like that I just you know if they’re rude to us or they’re rude to my
daughter that’s gonna be a whole other ya know just people people slipping up
saying the wrong thing you know those kind things that I’m gonna let that
stuff go yeah okay well that’s good to know I mean a lot of these things that
I’ve heard from you and from Jackson are some of it is things I’ve
I’ve heard for the first time so maybe I should interview you guys live more
often maybe you should not tear up our question cards so you know yeah but we
were talking about last night we were talking about college and stuff so
I don’t know if that’s something you want me to talk about Oh
for for Ella yeah oh yeah I was saying like what what kind of future do you
foresee for her I mean what kind of um have you limited her in her range
already or I mean I mean where do you see her
as an adult you know um I see adults right now and it’s still kind of hard
for me to connect the image of Ella with Ella adult and you know I think it’s
easier with typical children to kind of do that to foresee their future and for
see how they’re gonna look or maybe how they’re gonna act and talk but for some
reason with Ella for me it’s a little harder to envision um what life is gonna
be like you know like 20 years from now do you do you have that I mean what do
you see 20 years from now uh I don’t see anything specific but of course I would
love for her to grow up and be able to live on her own get married you see a
lot of you see a lot of success stories where people with Down syndrome are able
to start their own business those kind of things so I would love for all of
those things to happen I’ll encourage all those things to
happen but I’m not gonna overly push for some of that stuff or or not think about
it I just that that’s the ultimate goal is how independent will Ella be able to be
when she’s an adult I mean she’s really doing everything we can to help her be
as independent and successful as possible all right well you know I have
we both have kind of goals for our boys like come on you guys think about
college come on you got to think about career you got to think about good
grades guys think about and that’s kind of where I feel like we need a head with
Ella like we need to take a look at what
she’s capable of and not decide for her but just keep telling her now you know
you think ahead and you need to think about your future and let’s work it but
let’s work towards that every day and think about your future or not not like
okay this is exactly ABCD what you’re gonna do but more of a guide through you
know becoming independent you know right and yeah for me it’ll be taking I guess
taking each level in each step one day at a time and seeing where she’s at and
what she’s capable of and then deciding what avenues we have and where we want
to push for her so she can take those avenues you know but for me it’s I think
it’s kind of like with the worry thing it’s you gotta wait to see where she’s
at at you know the end of elementary school where she’s at junior high in high
school and then you can figure out where you’re gonna go each step of the way
yeah yeah so again if if you’re watching if you could share this video
oh mary commented mary has a beautiful daughter Cora who has Down syndrome as
well she says having a DS baby does it feel like you’re raising her
different than any of your other kids because she is Down syndrome or is it
the same is it just like any other baby you have had that’s kind of where we
were talking right I mean I think this is me because of the delay
but yeah that’s kind of where we’re going we’re know we’ve talked about that
we talked about that separately you know do you’ve asked me if I feel like we’re
spoiling her in those kind of things so I kind of like we are and that’s not because she had DS it’d her cuteness yeah I guess I can’t seem to put her down
I’m not even kidding doctor because I acute on site
arthritic pain because I won’t stop holding her eye like all day long I’m
like oh she’s so adorable why is she so cute and like she’ll just coo and I’ll
just be like oh baby yeah I think my goal my goal is to try and treat her as
much the same as I possibly can but there’s gonna probably be times where I
can’t do that because she is different and I think the other kids will
understand that and if they don’t then we’ll explain it to him but I would like
to treat treat her the same way we treat the other kids and try and shoot for the
same kind of goals of you sleep in your own room you sleep in your own bed you
go to bed at bedtime you don’t come in with us you know those kind of things
early and then move the same thing move through the same kind of path that we
move through with the other kids but you know it might be maybe more challenging
than we think and may not again we’ll see I can see when it happens
Shirley Shirley comment she says I pity any boy that comes around three big
brothers and Eric as a dad yeah I came with Jackson earlier about that and
sometimes he worries about maybe if people will tease her and I’m like well
like Jackson you’re 16 years older than her and I doubt anybody’s gonna want to
mess with her with three big brothers who were you know their by her side loving
her and taking care of her and we’re pretty lucky in a sense because you know
they better be there they’re good alright alright so maybe we can have fun
with this I was gonna give my testimony do you want to stay on or do you want to
just are you done I don’t have to be done uh I mean that way if you wanted to
bounce some questions off of me in return
okay or give it insight it might be a good that way you know if I forget
something or something so my and I’ve already said this and my story with
diagnosis for Ella was a lot different you’ve seen with Jackson that he had
some worry and he just you know and my he might have had you know a few nights
where he stayed up with anxiety and then you see with Eric who is like not
worried at all but he’s still not worried and I went in a total different
direction why I spiraled out of control I was at school and I I think I was
about ten and a half weeks pregnant and just a little backstory we do have three
boys and I really really was daydreaming about bows and pink pink outfits and
just seeing this pigtailed girl run up to Daddy and you know just him and his
days and in love with like a mini me and I you know I know how he is with me and
I could just see I mean this guy loves all things cute I mean some little girl
with like my nose and his big lips I mean it was gonna be in my mind I had
built up this image at this little girl and I really wanted to know are we
having a girl and I didn’t want to wait until I my six months ultrasound so
I voluntarily took this blood test that I you know I took it because one of the
tests that they test for is gender and it’s just a simple blood test they
take your blood the mother’s blood and they basically filter out the baby’s
blood from that and these tests have come a long way they’re very accurate
they didn’t used to be but they are now and you know so I I took the test for no
other reason than to find out what we’re having so that I would have plenty of
time if we were having a boy to just kind of get over that disappointment
because I mean I we both figured that this is probably our last baby right well that was supposed to be three babies ago yeah you hey you invited me to do this
with you so so so I was at school I’m getting my I was getting my bachelor’s
degree and we it was a big day of st. Patrick’s Day and we had a big huge
group project where we were supposed to guide and teach the class and I had an
activity planned and everything and I was in charge of this activity and it
was a huge project I was a huge part of her grade and it was in like two hours
and I saw I was out of school I was making copies of stuff and I get a call
from the doctor and I was so excited I’m like I’m gonna find out if I’m having a
girl goodness and so I pick up the phone and immediately my doctor said uh I are
you alone and I need to talk to you about your test results and then she
wouldn’t tell me that the tests came back positive for Down syndrome
she wasn’t negative she was very factual and it was almost like I didn’t register
any of that that’s not what I was waiting for I was waiting to hear if if
it’s a boy or girl and so I kind of like almost immediately dismissed it like
okay okay I don’t really know what you’re saying
and so I I just kind of you know went like aren’t those tests like inaccurate
aren’t don’t aren’t they like not the real thing and she said well you know I
I haven’t done this protect particular brand but these tests are really
accurate so I’m going to set you up with a genetic counselor and you’re gonna get
a phone call within the next few minutes about an appointment for that so I just
want to let you know that and do you have any questions and I thought what
what what like this it nothing was really making sense to me and finally I
was able to say is it a boy or a girl you know and so she’s rough ruffling
papers and she’s trying to look through everything and find this information for
me and at one point she hangs up because she said I’m gonna have to call you back
I can’t I can’t find that I have to call you back
and so for a good three minutes I just sat there I mean I wasn’t really
thinking I wasn’t really you know I just kind of sat in silence and just kind of
waited and then she called back and she said okay I have it right here it says
here that you’re having a girl and I said oh okay but immediately immediately
my first thought was but I wanted her to be pretty I mean like who thinks that
who thinks that and I couldn’t even I couldn’t even catch up with myself like
I was just instantly like is that is that Who I am is that what just happened
is that how I feel and and then I just kind of spread because I really started
thinking I can’t there goes there I didn’t have all these dreams about you
know this gorgeous baby and in my head I had built up over years of time this
understanding that there wasn’t beauty associated with Down syndrome and there
wasn’t that there wasn’t anything to admire it was just kind of it was kind
of just something that in society you love and accept but as long as it was
somebody else’s issue or somebody else’s problem there everything was fine okay I
didn’t want it to be my problem I didn’t want to be my issue and I certainly
didn’t want that for my baby girl and it was intense
no no I know I know I can’t I don’t I don’t and within minutes I was sobbing I
was just sobbing and crying because I not only was I dealing with the fact
that I just heard some news that I thought in my head meant that I was gonna lose
my baby or something was wrong with my baby or like I couldn’t maybe even not
go to full term with this baby something could be terribly wrong all these
thoughts and ideas about all the hundred things that could go wrong this idea
that I didn’t want this situation and at the same time desperately needing to
cling on to this beautiful life and at the same time by thinking how can i how
can I love this this person not supposed to be coming into my life how am I
supposed to be able to love this person I don’t know if I’m good enough I don’t
know if I can do this I don’t know if I’m qualified needless to say the entire
the entire day was shot I had to go to my instructor and just as I was sobbing
the whole way there and I was sobbing always in my card sobbing the whole time
in his office just telling him what just happened
I’m sorry I can’t I can’t go to class like this I can’t I can’t face the world
right now so yeah yeah of all this of like somehow putting together the
thought that was supposed to be this joyous moment where I find out that I’m
having a girl and suddenly I’m diving headfirst into I want to say one of the
darkest times of my life where I thought I knew who I was I thought I understood
how I operated I thought I had different principles and then I realized oh
there’s ugliness in me and I’m just full of it and I still had a lot of guilt and
I had a lot of shame and I didn’t know what to do with any of that because I
was still unsure about what was going on with my baby I still didn’t know what
was going on in my life I didn’t know um if I was if I was gonna be able to keep
her and find out you know so it was really confusing so I went to I went to your work I don’t know if you remember well you definitely probably
remember but I was crying and I was trying talk to you about it you’re
like hey yeah kind of dismissive about it like buck up it’s gonna be fine
you’re gonna be fine you know just don’t worry we don’t need
to worry about this until until we know more and you know part of me wanted to
listen to you and part of me was just like I need to Google everything right
now you know I need to I need to know I need
to know what’s going on I need to understand and I’m like hormonal and
pregnant and I hadn’t like really know where to go I mean you were like not
want I don’t you know hey we can do this you know and everybody else I wasn’t
ready to talk to you anybody else about it you know I just had these horrible
feelings about myself horrible guilt about myself I wasn’t ready to share
that with the world so you know who wants to share with
the world all their ugliness I certainly didn’t want to and there was too much
going on to hear other people’s input too I really couldn’t take that so I really
I’m really glad that I eventually found dsdn because I was able to work through
some of those issues work through some of that guilt associated with that
diagnosis there was a lot of guilt associated with that I I went through
grieving I mean Eric you’ll testify that I probably I tried bartering
I tried begging I tried denial I I went through all the stages
of grief where I I mean I was like we have to give up this baby we have to
give this baby up for adoption we have we have to there’s no way I can do
this I can’t do this I can’t do this I can’t do this I mean just crying in the
night waking up sobbing it was just so ugly and so terrifying the whole
pregnancy was really really hard and really dark because of fear and shame
and I didn’t know that I wasn’t the only person that felt like that
that it’s natural to feel like that I mean I had kind of had an idea about it
but I I didn’t know that I was perfectly normal and perfectly you know within my
right to feel all those feelings and go through all those feelings and have
those feelings and that it was just part of it it’s just part of you know you
have this image of what your life is gonna be like and then something else
comes along and it’s perfectly normal to mourn the thing that you were expecting
and not getting you know and I think now I mean now I can look back oh my
gosh it was like a month before ella was born I had to go to the hospital and I
was hospitalized for a really bad infection I was taken in my first
ambulance ride I was so terrified that I would lose her that I was able to kind
of get over that hump of not wanting to face it and not wanting to UM deal with
it deal with Down syndrome and I realized then I wanted her and my life
more than I didn’t want down syndrome does that make sense does to me cuz I
was there yeah yeah like it was like an instantaneous like I want her more than
I don’t want DS it sounds confusing but um so things
started to turn up a month before she was born I started to feel joy I started
feel excited about seeing her it was a nervous excitement because I was worried
about the delivery like oh what else is gonna go wrong right yeah and even get
go wrong and then it turns out that we have the most amazing and beautiful
delivery story ever you know she’s born in my good I don’t
remember we were hardly at all before we had her and and again this you get yet
if you have a couple of questions I think before they get too far up on the
answer Sam asked let’s see if I can find him again
where’d he go a short-term and long-term memory
affected by a Down syndrome yes and then you also have that it yeah that’s his
question and then after that Maryann asked another one so I don’t know how to
answer that a short-term or long-term memory affected by down syndrome I don’t
know I don’t know yeah I haven’t researched that I wouldn’t believe it would I mean
I don’t know I mean I haven’t noticed anything with what do you mean I haven’t
noticed anything with other people I haven’t heard anything and we hear a lot
in our community we get we get all the information first we get all those news
feeds that you share we get all those first they’re spread around like
wildfire and we’re and that’s just not something that we’ve heard I haven’t
heard that have you No i haven’t hear that about memory I haven’t researched any of that
stuff and I haven’t um I’m not as involved in the community as you are so
I haven’t seen or heard any of that stuff well Gini says
there’s an increased chance of early onset Alzheimer’s yes I know that I know
that for there is an increased chance of that there there I see but I don’t know
if Alzheimer’s is exactly a memory issue as it is an autoimmune disorder um so I
don’t know like I don’t know let’s see Maryann writes does DSDN help
parents with just young children or all the way into adulthood so dsdn stands for
Down syndrome diagnosis Network and it primarily focuses on helping people
through their diagnosis they do go up to the age they have groups for people for
parents up to the age of four with their children but once you join these groups
they’re your family and I’m sure a lot of you are here watching from the DSDN
and you can attest that you don’t just kind of give up that connection because
the kids are older or something so and that’s really the network of families is
really what’s created and that’s really the benefit so I’m sure that these
people have made friends for life so really the connection is kind of what
you make of it it’s like high school right you’re only in high school for
four years but how many of you have and high school friends now you know it’s
one of those things let’s see my dad rates there is a clear evidence that
Down syndrome is associated with particularly poor verbal short-term
memory performance and a deficit verbal short-term memory would be expected to
negatively affect aspects of language acquisition particularly vocabulary
development individuals with Down syndrome are also also show impaired
explicit long-term memory I don’t think that was a question we got it from take
a look at it it looks like valuable information you know I was just talking
about the different the the difference between my prenatal diagnosis and what
happened after she was born and for me I had really really hard time in my
pregnancy with the Down syndrome diagnosis but the second and I can’t I
can’t illustrate this enough I can’t emphasize
this enough that the second her tiny little five pound 15 ounce body was put
into my arms I fell in love I fell in love and it was over like there was
nothing wrong with her there’s never been anything wrong with her there will
never be anything wrong with her she is like the child I’ve you know always
needed ailment knife she always needed to be in our family she always needed to
be right here in my arms I mean it was like
heaven opened its gates and shown its all its glory and grace right down on us
and I was so full so much love that I just burst out crying and I even now I’m
thinking about it because I’ve never felt that kind of instantaneous joy and
instantaneous overwhelming love for this person for any for any person really and
I love all of my kids I love my husband and I love my family but it was
everything I needed and it was just flooded it just flooded and it’s
flooding in and it’s been sustaining me this like this entire six months like
I’ve been like on this high thinking maybe maybe I have some clinical disorder and
something’s wrong with my brain is why do I feel so good what am i okay with
like her eye problems were nothing I but you you knew it must be okay because I
felt the same way and I don’t ever feel that well even if you had it even if you
had felt the same way which it you know it’s funny seeing Eric like this with
her because it it’s true like II it’s a different world it’s daddy’s daddy’s
girl and it’s a different world for both of us it really even with all with
medical conditions and problems nothing seems like it’s a big deal
nothing seems like like it’s it’s you know maybe she’s gonna be blind you know
um I think we’d be okay like nah like nothing can faze this like she’s still
gonna be great she’s still gonna be wonderful
I’m still gonna love her and I’m still gonna love this journey that I’m on with
her and I get to be a part of it and I get to watch her grow and man was God
laughing when I thought I want a beautiful girl but I wanted I wanted
somebody beautiful you know or that ever ever thought that she wouldn’t be
anything but the most gorgeous human being on the planet right so he was
laughing he was just like you know spilling popcorn all over himself
blowing milk out his nose just laughing at me because I this she’s gorgeous
she’s gorgeous and she’s always gonna be gorgeous I just love her so I’m
celebrating because I love her differences I love it I look I would if
I had a lineup of 50,000 kids that I could pick from that none of them had
Down syndrome I’d pick her every time I every time it’s no big deal to me I love
that she’s who she is and I’m sure that’s just gonna get stronger as time
goes on so that’s just that’s just my journey I guess Kemet it makes a good
point she’s mine so no that’s unless my friend Julie shows up and steels her
No we’re gonna have to both team up can’t no it’s me or you and I can’t
see that’s an excellent question can we see the gorgeous girl okay I knew
somebody was gonna ask that I knew somebody’s gonna ask that but let
me tell you this this is the day that her reflux meds stopped working this is
the day of all days and she spent the entire day vomiting like all over our
beautiful shirts I don’t know if you can see I I had to clean the vomit off a
couple times since dinosaurs are scary but down syndrome is not that’s got a
little dinosaur he’s like she vomited all over her shirt she was a screaming
mess the entire day I had to go to a couple of fundraisers and a couple
doctor’s appointments for some my older kids and she got her doses late on top
of that so she’s sleeping and you bet your bottom dollar that I’m not gonna go wake her up I’m not gonna even look at her until tomorrow morning she’s gonna sit right where she’s at I love her but man she had like she had
a day we both had a day was a day she was pretty she was she knew something
was going on and she want to be a part of it so I was holding her a good 80% of the day so before people just completely give up on us let’s do the
rafflehold on hold on okay can you recap what the DSDN is and all that for folks
that joined while you we were doing all the interviews and all that oh yeah
see this is why I need you here to help me out because I’m a scatterbrain and
I’ve had a date okay DSDN is Down syndrome diagnosis Network they’re
nonprofit organization they’re put together as an outreach to reach out to
the community to reach out to medical professionals and to reach out to
parents who have a child who’s been diagnosed with Down syndrome they are a
huge part of the community and the reason why you know there’s a lot of
organizations that support Down syndrome there’s a lot of them there’s Ruby’s
rainbow Britney’s a basket of Hope Jon’s crazy socks
there’s your local groups your national groups your global groups all of them
are great but DSDN has something they don’t and that is any time of the
day any day the week they’re there they’re there and they’re available
where you need them if you need them at a crib side in your hospital room
they’re there for you if you need them in your room in the middle of the night
when you’re trying to see is hiccups while they’re sleeping a normal thing
they’re there for you if you need somebody to vent and a safe place to go
to do that where you’re not gonna get judged and you’re not gonna have to
worry about people feeling sorry for you there
they’re for you they’re there for you because they’re all just like you
they’re a group of parents just like ourselves there’s moms groups there’s
dads groups there’s military parents groups there’s parents who have children
with Down syndrome and congenital heart defect groups there’s a group for
everybody for every situation and they kind of group you up based on what’s
going on what’s going on with you so you know Down syndrome doesn’t have a
spectrum there’s no Down syndrome specialist there’s no there’s no one
place that you can go to that can tell you about what’s going on with your
specific situation that’s why you get this big binder and that’s why you have
to see all these specialists all these various different specialists because
there’s no I mean the reality of it is that we parents are the specialists we
have to be the specialists we have to be the advocates we have to be the one
bringing the information to the doctors so how do we how do we go about that
it’s quite a lot of information it’s quite a lot of stress to figure out you
know to be everything that you know your your baby needs and you don’t want to
miss anything you don’t want to you don’t want to let
anything slide through that could be really detrimental you know so this
group is really important if you’re just checking in now go ahead and share this
and make sure you click on sharing the thing but we’re just talking about DSDN Jackson showing me something yeah I don’t kn ow share a link I can’t see
everything right away yeah you just said what yeah you just said please share the
link so you’re good yeah okay so yeah that’s how DSDN works they
help you be the specialist they encourage you they support you their
motto is you know you’ve got this and we’ve got you and that’s really right
there sums up everything whatever you need whatever you need
they’re there for you you know they’re there to give you a welcome basket and
they’re there to give you information and keep you updated and give you love
and support um sadly they’re also there to give handmade memorial gifts we’ve
had a couple of people in our group personally that we’ve had four children
that have left us and we were able to be there for those parents and help those
parents and you know it wasn’t easy but in the end they didn’t have to go
through that alone they didn’t have to say goodbye and hold on
it’s a little boy or girl for for the last time alone we were there with them
we were there as they were chasing the ambulances we were there as they were
panicked and their baby’s lips were turning blue we were there and they
needed that and then they have groups for parents who lose their children too
so they’re there to continue on even after they’ve lost their little ones so
um it’s really a special group it’s really the reason why I became an
advocate for them because I really feel like it’s really important not just to
me but to lots of people so yeah does anybody have any last questions before
we do a raffle question if you’re there and don’t
forget afterwards that you have to go to that go to the link that I’ve pinned go
to the link that’s in the description and donate donate donate
donate donate because my my progress means other people’s progress it I mean
the person whoever it was the anonymous person I just donated a thousand dollars
to help me reach this goal right here at this 3375 I got to my new goal level
because of that and I am now able to give 250 dollars away to another mom so
you didn’t just help me you didn’t just help DSD n you’re helping another
I mean that and then the trickle effect because that mom’s helping that family
and and you know I mean it just keeps going on it’s just a beautiful cycle so
so I’m gonna before you to do the raffle I’m gonna I’m gonna exit this video part
right here okay because I have because I have to hold my phone up the entire time
so but thank you but thank you for having me as a guest I appreciate it
thank you for joining me and just so just so everyone knows Eric hates this he
hates it you guys does it seem like I hate it no cuz you’re good you’re good at acting but he hates this this is not it’s not your forte so thank
you honey I love you all right love you too okay well he figures you’re still on
there baby so it’s time it’s time to give away this money so again I’m very
excited to do this this is something that I’ve been like so excited about and
I hope to continue doing this I’m gonna continue giving my my awards and my
prizes away so stay tuned because the more money I make the more money you
guys in DSDN make here’s my little owl cookie jar my friend sandi gave
this to me and it’s just totally adorable I don’t know if you’ve see all
the owls but Ella’s theme was an owl theme so she gave me this owl cookie jar and its
super cute okay so again come back come back to
this page come back to those links because these links are available until
June 1st so if you can’t donate today that’s okay donate tomorrow you know
don’t donate $21 not in an honor of the 21st chromosome donate $5 have you know
pledged to have five other people donate $5 if you can’t afford $5 find five
people that can you know Mike says can I be the guest next
time oh that’s a good idea you know we’ll talk we’ll talk later
okay so anyway I was saying just keep coming back you can donate multiple
times you know that won’t hurt I give up your
Starbucks for the day give up your Starbucks for the day that’s that’s doable all right all right here we go okay Jackson do you want to grab this
grab that one now listen if the person decides to not for whatever reason to
not take the winning I will draw another name live so just same tight I’m also
gonna hang on to these names because the more I win the more you and and so I’m
gonna keep these names in here and that way you know the next raffle I’ll have
them ready to go okay grab the name and then don’t open it okay to go towards
their trip to retreat in September for the rockin moms retreat Karri Oh wrong it’s
h.o.t a.k.a. i. n. e. n. Karri Karri is our winner! contacting you and finding the best way
to give this to you though so of you if you need it for transportation use it
for transportation if you need it for the registration fee there you go if you
need it for baby sitting cuz that’s the only way you’re gonna be able to go is
if you can afford to take a babysitter with you okay there you go that’s one
step closer so yeah so excited that’s it that’s it that’s all and thank you guys
for watching thank you guys for shirring thank you guys for donating
just thank you thank you for supporting Ella and for being okay with her being
different um being okay with me being different and not having not having the
same reaction that Eric had or maybe not having the same reaction that Jackson
had um thank you for celebrating that we are all different we’re all made
different and that’s okay you know that’s why that’s why we’re celebrating
all right peace out love you guys bye!

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