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Your daughter has Down syndrome.

One couples greatest fearor is it?


A journey of discovery about their
new daughter, Kayla.
Celebrating

2007 Sandy and Janelle Baldwin. All rights reserved, with the exception of material which is attributed to
One familys journey of love and life
other authorsthose original copyrights remain in effect.
Kaylas Creed
My face may be different but my feelings the same
I laugh and I cry, I take pride in my gains
I was sent here among you to teach you to love
As God in the Heavens looks down from above
To Him I am no different, His love knows no bounds
Its those here among you in cities and towns
That judge me by standards that man has imparted
But the family He has chosen will help me get started
For Im one of His children so special and few
That came here to learn the same lesson as you
That love is acceptance, it must come from the heart
We all have the same purpose, though not the same start
The Lord gave me life to live and embrace
And Ill do it as you do, just at my own pace

~Author Unknown ~

Note: This poem was sent to us from Kathy Traynor, moderator for
Down Syndrome Canadian Parents, she inserted Kaylas name into the title
of the poem, her copy has her own sons name.


Welcome
to Holland
1987 by Emily Perl Kingsley
All rights reserved

Reprinted by permission of the author

I am often asked to describe the experience of raising a child with a disabilityto


try to help people who have not shared that unique experience to understand it, to
imagine how it would feel. Its like this......
When youre going to have a baby, its like planning a fabulous vacation tripto
Italy. You buy a bunch of guide books and make your wonderful plans. The
Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some
handy phrases in Italian. Its all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and
off you go. Several hours later, the plane lands. The stewardess comes in and says,
Welcome to Holland.
Holland?!? you say. What do you mean Holland?? I signed up for Italy! Im
supposed to be in Italy. All my life Ive dreamed of going to Italy.
But theres been a change in the flight plan. Theyve landed in Holland and there
you must stay.
The important thing is that they havent taken you to a horrible, disgusting, filthy
place, full of pestilence, famine and disease. Its just a different place.
So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never
have met.
Its just a different place. Its slower-paced than Italy, less flashy than Italy. But after
youve been there for a while and you catch your breath, you look around.... and you
begin to notice that Holland has windmills....and Holland has tulips. Holland even
has Rembrandts.
But everyone you know is busy coming and going from Italy... and theyre all
bragging about what a wonderful time they had there. And for the rest of your life,
you will say Yes, thats where I was supposed to go. Thats what I had planned.
And the pain of that will never, ever, ever, ever go away... because the loss of that
dream is a very very significant loss.
But... if you spend your life mourning the fact that you didnt get to Italy, you may
never be free to enjoy the very special, the very lovely things ... about Holland.


A note to the reader
Congratulations on your new baby!
This booklet shares our journey of discovery that followed the birth of our
daughter Kayla. She was diagnosed with Down syndrome shortly after she was
born. We hope that our journey will help you, even a little bit, as you venture
forth on your journey, however it looks for you.
By sharing our story we are hoping to help new parents and parents-to-be of
Down syndrome children realize the joys and the beauty of these amazing kids.
It can be an adventure, no one said parenting any child is easy, and there are
some challenges facing Down syndrome children and their families, but it is
worth itit really is!
You may experience a period of mourning and grief following the diagnosis
and that is completely normal. Your journey may not look anything like ours,
but it is our heartfelt desire to help you to see that there is incredible beauty, a
rainbow after the rain. This baby truly is a gift, even if it doesnt really feel like
that right now. You will learn many wonderful things just by being with this
amazing new life.
Kaylas Creed and Welcome to Holland, featured on the first two pages of this
booklet, were sent to us the first couple of days after Kayla was born. The words
on those pages washed over us, along with the support of many wonderful
people on the Down Syndrome Canadian Parents message boards who reached
out with heartfelt words and guidance as we started our journey. We are so
grateful for all of those we met then and since who have cheered Kayla on and
offered support and love to our family.

Thank you : )

TABLE OF CONTENTS
Moms Story............................................ 4
Dads Story............................................. 10
Your Story: a note of encouragement...... 14
Links & Resources.................................. 15


The cord snapped

The cord snapped the paramedic tossed over his shoulder as he


walked toward the ambulance with our newborn daughter.

He hadnt realized when he took her from my arms that she was
still attached to me, the placenta hadnt been delivered yet. The
other paramedic helped me out of the passenger side of the car. I
was swiftly wrapped in a pink blanket, helped onto a stretcher
and loaded into the waiting ambulance where they were trying to
warm up our baby girl. Born on the side of the road on a crisp,
cloudy August morningan unusual beginning for a unique
little girl.

The longest (and shortest) fifteen minutes of our lives were the ones
on the way to a hospital that we never reached. A short labour, a
fast delivery; seven minutes from the start of the 911 call to the
ambulance pulling up in front of our carparked on the side of the
road just minutes from our house.

The labor pains had been steady and regular for almost four hours,
they started at 3:00 a.m. I called my mother to watch our other two
children at 4:30 a.m. when I was sure the labor was real. I woke my
husband at 6:45 a.m. to head for the hospital. The labours with our
sons were 12 hours long, helped by epidural and not particularly
Moms Story

dramatic. With our newest addition I had hoped for something


different, a natural birth away from a hospital. Something more
tranquil, less rushed, we looked into birthing centersbut that
option proved too costly. With the loss of that option, I prepared
myself for the typical routineI never expected what we got.

We left the house at about 7:10 a.m., the contractions never closer
than four minutes apart, about the same intensity as they had been
throughout, but we had heard that labours could be shorter with
each pregnancy. I also had Group B Strep, so I needed antibiotics
prior to the babys birth. At least that was the plan.

Once we got into the car and started for the hospital, something
changed and suddenly, as we passed the school a block from our
house, the contractions became very intense, almost on top of
each other.

Were not going to make it to the hospital, I commented as we


passed the school. Go to the urgent care center. The urgent care
center was just a few kilometers down the road, surely we could
make that! Andrew (my husband) chose to call 911, speaking to
them as we drove. A few blocks later, the water broke and I felt the

baby drop. As we rounded the corner and headed for Macleod Trail,
I said I dont think were going to make it to the urgent care center.
Andrew sped up. It was too late. As we pulled onto Macleod Trail I
asked him to pull over. The baby was coming.

Shes here!

Andrew pulled over sharply and hopped out of the car, flagging
down a passing construction truck as he did so. He quickly explained
what was happening to the startled men and handed them the cell
phone, which was on speakerphone. The 911 operator was talking
him through the delivery. He came to the passenger door just before
our daughter was delivered, with one push, in the front seat of our
Pontiac Grand Am. It was 7:15 a.m.

Oh god, its here, the babys here! I heard the construction worker
say, as though from a great distance. She was born blue and not
breathing. Her dad asked the 911 operator if he could give her
mouth-to-mouth. Gently, was the response, so her lungs wouldnt
accidentally be ruptured. He was also instructed to tie off the umbilical
cord about 6 inches down and keep her warm. It was overwhelming.
We were more concerned about getting her breathing than keeping
her warmboth were equally important, we discovered later. Her
cord was tied off with a shoelace from the construction workers
boot and she was wrapped in his jacket to keep her warm. She
wasnt breathing yet and still no ambulance, those minutes were the
longest ever.

In those moments, I prayed. I said, Lord, this is Your daughter,


help her to breathe. At that moment the panic left, peace settled
in my heart and I knew, I knew, she would be okay. The babys face
flushed pink briefly and her eyes opened. Then they closed and her
skin returned to its former dusky-blue hue. Her dad breathed into
her mouth again and then again, her face flushed pink again and
the eyes opened. Closed again. We could hear the ambulance in the
distance, oh God, hurry them upthen her face flushed pink again
and stayed pink. As the paramedic rushed over, he took her from me
and headed for the ambulance. In those minutes after she was born,
I was certain that there was something very special about this little
girl and was equally sure of the diagnosis.

Your daughter has Down Syndrome

On the way up to the neonatal unit at the hospital, I ventured to


Andrew that the baby had unusual eyes. For both of us, Down
Syndrome was a definite fear. We had thought that because I was


under 35 when I got pregnant, that that was some sort of protection
from having a baby with Down syndrome. We were wrong.
We thought the incidence of DS grew over the age of 35 (it does) but
didnt realize that because the majority of pregnancies occur under
35, most Down syndrome babies are born to mothers under the
age of 35.

Andrew acknowledged the


differences he was seeing in our
daughter. We also noticed the
way nurses kept approaching her
under the warming light, silently
staring at her. Nurses quietly came
and went. We had held the baby
on the way up to the neonatal
unit, but hadnt held her since. She Kaylas first photo
had gotten extremely cold while we were trying to get her breathing,
she hadnt been wrapped warmly enough in the coat, so they were
keeping her under a light to bring her body temperature up.

A woman came in in an outfit different than the other nurses. We


watched her with Kayla, we had been quietly discussing that we were
sure she had Down syndrome and we felt to ask this woman for
confirmation. The other nurses had indicated wed have to ask a doctor
about our concerns and one had not come in yet. We mentioned to
Moms Story

her that we felt our daughter had Down syndrome and to please not
be afraid to tell us. She hesitated a moment before telling us that our
daughter had some indicators of Down syndrome (low muscle tone,
almond-shaped eyes, simian crease on the palm, small, low-set ears)
but a blood test would have to be done first to confirm it. She was
from the Genetics department at Alberta Childrens Hospital who
happened to be touring the special care nursery that weekend.

When the on-call obstetrician came in, we mentioned our suspicions


to her and the reactions we had gotten so far. She said firmly, They
can tiptoe around the subject all they want, but the fact is, your
daughter has Down syndrome.

Discovering the Truth

Oddly, the pronouncement of this statement was refreshing. Hearing


it took away the teeter-totter feeling and set my feet on solid ground.
I felt completely at peace.

Kayla stayed in the hospital for ten days. During this time we
started to grow accustomed to the new, if different, path that we


would be walking. We learned that the internet can be a source of
overwhelming and sometimes frightening information, and that it
could also be a source of support and friendship. We discovered that
Kaylas birth entered us into a very special community of generous,
supportive, loving people who came forward to encourage us, lift us
up and cheer us on. It felt like we had suddenly become members of
a very close-knit, elite clubbut one that was free from judgement
and who offered tolerance, acceptance, kindness, patience and love
as naturally as breathing. Coming home

When I faltered the day after her


birth and became overwhelmed
by statistics and potential medical
concerns and fears that Kayla
would be unable to read, write,
understand or communicate
well, this community responded
with stories of their childrens
successes. When we cried, they
said Its okay, weve been there
too. These families had all gone
before us and helped to make
the path ahead smoother and
less frightening.

My only previous exposure to a person with DS occurred in


childhood. The girl was a neighbour of my grandmother. She was
seldom brought outside of her house and my sister and I were asked
by her mother not to look at her, talk to her or try to interact with
her in any way. From my childhood perspective she was a frightening
unknown: a girl who played by herself in her yard with a crude toy
fashioned from a plastic spoon and a bag, unable to talk. As a result,
having a baby with Down syndrome became one of my greatest
fears. I remember asking God at different times in my life, Please,
dont let me have a child with Down syndrome. Its amazing that
He would gift me with that very child in order to help me to see
that my greatest fear was really nothing to fear at all. Many people
have never met a person with Down syndrome, have never talked
to them and are unaware of the amazing resources now available.
I had no idea until Kayla was born that DS children are included
in regular classrooms, they read and write, they go to university in
ever-increasing numbers, some get married and many lead
independent lives.

Kayla is doing beautifully. She learned to breastfeed, even after ten


weeks on a bottle; she is meeting her milestones at just the right

pace for her; she is growing and
thriving and learning every day.
She is treated no differently than
our other kids. She loves to play
and be cuddled. She laughs and
smiles and enjoys interaction.
Down syndrome is the least-
interesting thing about her.
Kayla is who she is, she is not
defined by Down syndrome, by
abilities or perceived disabilities.
She will be who she is, regardless
of what others think of her.

The path that at first looked like


a narrow, rocky passage into a dark and treacherous wood has instead
become like a gentle, meandering stroll through a rolling meadow.
Its abundantly populated with helping hands and generous hearts.
It is far, far different than I thought it would be. The landscape is
varied, the pace is slower, but its not a scary place.

I still dont know much about Down syndrome, but I learn about
Kayla every day. Kayla is my greatest teacher. I have learned much
about unconditional love, acceptance, kindness, gentleness, grace,
patience and heart. I have discovered great joy in little things I may
Moms Story

have overlooked before. With our sons, I became accustomed to


moving at a break-neck pace. Now, she sets the pace as we journey
forward, I take her hand and we walk together. When I move too
quickly or get ahead of her, she tugs gently at my hand and reminds
me, Wait for me, I have something to show you. I have come to
enjoy the slower pace, unexpected gifts, and the quiet beauty of tulip
heads nodding gently in the breeze. Life is simpler here, but no less
rewarding. Holland truly is a beautiful place.


All I need now is an
umbrella drink...
Kayla hanging out
with her photoshades
on, they protected
her eyes from the
photolights when
she was treated
for early-onset
jaundice.

Heads up...
Practicing
lifting her head
duringtummy-
time

Look ma,
no hands...
Sitting on her own
without support


The day our lives changed forever.

Hello... and thank you for taking the time to read about our
experiences with a child born with Down Syndrome.

This may sound a bit uncanny but with each of our first two children,
Jason and Tyler, I had brief thoughts early in those pregnancies about
Down Syndrome and they quickly faded. But for some reason when
Janelle was about two months into this pregnancy that thought never
went away and somewhere deep down in my soul I knew that our
new baby might have Down syndrome.

During the birth of Kayla


in our car, I was so intent on
trying to get her breathing
that I was totally oblivious
to the fact that Kayla had
Down syndrome. When
we arrived at the hospital,
I was expecting a team of
nurses and doctors to come
rushing out and scoop Kayla up and whisk her away to the emergency
room. But to my surprise, Teresa, one of the paramedics, brought
Kayla out of the ambulance and asked if I would like to carry her up
to the birthing room. After the shock of the paramedics seemingly
Dads Story

lackadaisical attitude about proceeding into the emergency area, I


took Kayla into my arms for the first time. Upon looking at Kaylas
eyes, that feeling that I had off and on for the last seven months was
suddenly a very real possibility.

Later that day when we met with the geneticist, he proceeded to


tell us that they needed to do the blood work to get confirmation
that Kayla does indeed have DS. He then asked us if we had any
questions. After a few minutes of questions and answers the doctor
looked at us like he was expecting something more from us. He
asked us if we were ok and if we needed anything else. We were
surprisingly content with everything that had happened in the last
10 hours and it either hadnt sunk in yet or we were already prepared
for the outcome. Later, after talking with the nurse, it seemed they
get a wide variety of responses, everything from denial to verbal
outbursts from the parents. The reason I bring this up is because of a
story that the nurse told us about that has really stuck in my mind. It
was about a couple that had a set of twins. One of newborns had DS
and the other one was a so called Normal Baby. When the mother
was ready to go home they proceeded to take the normal baby and
left the DS baby with the hospital staff.

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I think at that moment it hit me that Kayla is a normal baby. She
lives, she breathes, she has two eyes, a nose and a mouth, she has
ten tiny fingers and ten tiny toes, she has two arms and two legs
and most of all, she has a heart that is filled with more love and
acceptance than I will ever know. How I love this little girl!

That first night I went home to an empty house and sat for a few
minutes and cried. Why me? Why me? I had visions all my life of
raising a beautiful daughter that would be on all the sports teams,
go to her prom, graduate, get married and have children of her own.
Basically, I felt just like the Welcome to Holland story, but I hadnt
received it yet. In addition to my feelings, it was about Kayla too.
Those were things that I wanted her to fully enjoy also.

In between my waves of
emotion, I began searching
the internet on Down
syndrome. I spent the next 3
hours combing site after site
taking in as much information
as I could. Looking back
now, it was way too much
information too soon. The first
place I landed was at a Yahoo
group called Down Syndrome
Canadian Parents. I joined the
group instantly and by the
next morning I had a response
from the group moderator
Kathy Traynor, who sent me
Kaylas Creed. I cant begin
to tell you how much that response from her meant to me. Here
is a little excerpt from her email: This is exciting! You have a new
baby. So many people forget when they hear the news that regardless
of chromosomes, its still a baby. Oh, how I remember that hard, hard
hit when we were told our son had DS after he was born. I thought it
was the end of the world. Little did I know, it was only the beginning.
Many people told me this isnt a bad thing thats happening to you, its
a good thing. All I could think of is ya right, you are just trying to
make me feel better. It wasnt very long before I realized how true that
was. There are trying times, but the rewards are out of this world. Our
kids teach unconditional love, acceptance and many more things that
only those who have walked in our shoes can understand. I had a hard
time believing it at the time but I knew that she was right and that I
would probably feel that way in time.

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At first, I really felt the need to tell anyone who saw her that she
had Down syndrome. I believe that I did this out of my own fears
and prejudice. When I was growing up, I remember that whenever
I would see a parent with a child that had Down syndrome or
any other disability, I would think that there must be something
wrong with the parents. I was so afraid that anybody that might
see Kaylaincluding my family and friendswould think that
there was something wrong with me and, in turn, would not want
to touch, hold or be involved with Kayla (or Janelle and I). Much
to my surprise, that was not the case at all. Everybody wanted to see
her, hold her and love her just like our other two children, even our
neighbors love holding and cuddling her. All of my pre-conceived
notions on how people would react to Kayla and our family have
been washed away.

Kayla is now nine months old and she is an amazing little girl.
Luckily, she didnt have any medical conditions which are common
among DS babies. For the first couple of months I wasnt sure what
to expect because she didnt move or act like our other children did.
But as Kayla started to move and partly sit up on her own, I could see
her personality start to shine. She has this gorgeous little smile that
is actually a huge beaming smile, she just cant get it all out quite yet,
but you can see it overflow in her beautiful blue eyes.

I dont know what the future holds for our family, but I do know
Dads Story

for sure that all of our lives have been greatly enriched because
of Kayla.

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13
s the saying goes, The journey of a thousand miles begins with
A a single step. Or, as another phrasing of the original Chinese
reads*: Even the longest journey must begin where you stand.
Your journey is beginning... may it lead you where you are to go.
Your Story

Two roads diverged in a wood and I, I took the one less


travelled by, and that has made all the difference.
Robert Frost

* see quotepages.com

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Links & Resources
Down Syndrome Canadian Parents
downsyndromecanadianparents@yahoogroups.com

Canadian Down Syndrome Society


www.cdss.com
Phone: (403) 270-8500 or toll free 1-800-883-5608
Email: info@cdss.ca

Ups and Downs Calgary Down Syndrome Association


www.upsdowns.org
Phone: (403) 289-4394 or toll free 1-866-230-0979
Email: info@upsdowns.org

The PREP Program (Calgary)


School & Resource Center for Individuals
with Down Syndrome
www.prepprog.org
Phone: (403) 282-5011
Email: info@prepprog.org

Developmental Disabilities Resource Center of Calgary


(DDRC)
www.ddrcc.com or www.everyonebelongs.com
Phone: (403) 240-3111
Email: info@ddrcc.com

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