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Celebrating: One Family's Journey of Love and Life
Celebrating: One Family's Journey of Love and Life
”
One couple’s greatest fear—or 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 other
One family’s journey of love and life
authors—those original copyrights remain in effect.
A pdf version of this booklet is available for download online at the author’s website: www.iamyoonique.ca
Kayla’s 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
It’s 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 I’m 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 I’ll 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 Kayla’s name into the title
of the poem, her copy has her own son’s name.
1
Welcome
to Holland
© 1987 by Emily Perl Kingsley
All rights reserved
2
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 it—it 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 doesn’t really feel like
that right now. You will learn many wonderful things just by being with this
amazing new life.
Kayla’s 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, family and
friends, 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
Mom’s Story........................................... 4
Dad’s Story............................................. 10
Your Story: a note of encouragement...... 14
Links & Resources.................................. 15
3
The cord snapped…
He hadn’t realized when he took her from my arms that she was
still attached to me, the placenta hadn’t 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 morning—an 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 car—parked 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
Mom’s Story
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 baby’s 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.
She’s here!
Sandy 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, it’s here, the baby’s 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 wouldn’t
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 warm—both were equally important, we discovered later. Her
cord was tied off with a shoelace from the construction worker’s
boot and she was wrapped in his jacket to keep her warm. She
wasn’t breathing yet and still no ambulance, those minutes were the
longest ever.
5
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
didn’t realize that because the majority of pregnancies occur under
35, most Down syndrome babies are born to mothers under the
age of 35.
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 Children’s Hospital who
happened to be touring the special care nursery that weekend.
Kayla stayed in the hospital for ten days. During this time we
started to grow accustomed to the new, if different, path that we
6
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
Kayla’s 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 club—but one that was free from judgement
and who offered tolerance, acceptance, kindness, patience and love
as naturally as breathing. Coming home
I still don’t 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
Mom’s Story
8
“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
during“tummy-
time”
“Look ma,
no hands...”
Sitting on her own
without support
9
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.
10
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.
Looking back, I felt just like the “Welcome to Holland” story. 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 Kayla’s
Creed. I can’t begin to tell
you how much that response from her meant to me. The following
is a little excerpt from that email: “This is exciting! You have a new
baby. So many people forget when they hear the news that regardless
of chromosomes, it’s 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 isn’t a bad thing that’s happening to you, it’s
a good thing”. All I could think of is “ya right, you are just trying to
make me feel better”. It wasn’t 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.
11
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 Kayla—including my family and friends—would 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.
For the first six months I wasn’t sure what to expect because she
didn’t 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 can’t get it all out quite yet, but you can see
it overflow into her beautiful blue eyes.
I don’t know what the future holds for our family, but I do know
for sure that all of our lives have been greatly enriched because
of Kayla, and I know that your child will enrich your lives too. •
Dad’s Story
12
13
s the saying goes, “The journey of a thousand miles begins with
A a single step”. 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
* see quotepages.com
14
Links & Resources
Down Syndrome Canadian Parents
downsyndromecanadianparents@yahoogroups.com
15
“Your daughter has Down syndrome.”
One couple’s greatest fear—or 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 other
One family’s journey of love and life
authors—those original copyrights remain in effect.
A pdf version of this booklet is available for download online at the author’s website: www.iamyoonique.ca