What do you know now

I made it into Kathryn Soper's booklet Who else did? Now how to get a copy?

Dear Parents,

Thank you for responding to the question, "What do you know now about
parenting a child with Down syndrome that you wish you'd known from the
start?" I've compiled your responses into a booklet which will be
distributed at the New Parents' Survival workshop at the NDSC convention in
Boston on July 12.

I've edited nearly all of the responses for one reason or another. Some were
longer than the 50-word limit. Many had common phrasing that became
repetitious when all the quotes were compiled (for example, nearly half of
you mentioned unconditional love), so I removed the repetitious parts and
retained the unique elements of the response. A few had phrases that were
potentially confusing for new parents. I know it's no fun to be edited, but
please understand that I needed to keep this booklet short, fresh, and
clear. (If you have strong concerns about the way your response was edited,
let me know.)

Thank you again for taking the time to share your experiences. I was deeply
touched by your words, and I know the attendees of the convention workshop
will be strengthened and inspired as they feel the joy that permeates the
booklet.

Kathryn Soper

p.s. You'll notice little "v" marks separating most of the responses. The
places where the mark is missing indicate page breaks in the booklet.

____________________________________________________________



What Parents Wish They'd Known


This booklet is a collection of thoughts from parents of
children with Down syndrome, who responded to this question:

What do you know now that you wish you'd known from the start?


v


I wish I'd known that it wasn't the end of the world.

--Joseph, dad to Janna (3 years)


v


I wish I'd known Down syndrome does NOT make being my son's mommy,

or loving him, difficult or different.


--Kathy, mom to PJ (8 ½ months)


v


I wished I'd known just how much like a "typical" newborn my baby would look
like
when she arrived. I was a bit scared and feared the unknown, but was
pleasantly surprised:
Ten fingers, ten toes, two eyes, two ears, a mouth and a nose . . .
PERFECTION.

--Robyn, mom to Amarli (7 months)


v


I wish I'd known to listen more and assume less.

--Chris, mom to Stevie (3 years)


v

I wish I'd known that I could be the best advocate for my child.
I didn't even know what the word meant, but I know now that I have no
problems
standing up for Hope, and this has made me better at standing up for all my
children.

--Debra, mom to Hope (4 years)


I wish I'd known how much having a child with a disability in my life
would change the person that I am.

--Robert, dad to Hope (4 years)


v

I wish I'd known that I would say and feel so often, "You're so smart!" or
"You are the cutest kid
in the whole world!" I wish I'd known I would use words like "sparkling,"
"vivacious," and
"infectious laughter" when describing my child. I underestimated her.

--Nancy, mom to Gabriella (3 years)


v

I wish I'd known how very joyful and in love I would be every second of
every day.
When my son was born, I worried, can I do this? I cherished that worry
because it meant his
was a life worth worrying about. I'm glad I know now that I don't have to
worry.

--Kitty, mom to Nathanael (2 years)


v

I wish I'd known that my daughter would be so able. To clean her own room.
To charm grown men.
To plant the garden with me. To play dress-up with other little girls. To
read and write.
To be a friend that cares and shares. She is so able.

--Jeni, mom to Joy Daisy (6 years)


v

I wish I'd known that my baby wasn't going to die. We were left with so many
unanswered questions and I thought for sure that it meant she would die
within hours.

--Renee, mom to Kennedy (4 years)


v


I wish I'd known what a wonderful teacher my older son would be.
He is Owen's inspiration for everything—walking, talking, playing, climbing,
eating, etc.
Jason treats Owen like a kid, which is exactly what Owen is.

--Tricia, mom to Owen (2 years)

I wish I'd known that my son would develop a personality like any other
child.
I spent so much time wishing his babyhood away wanting to know what he was
going
to be like. I wish I had relaxed and enjoyed the sweet baby I had.

--Ann, mom to John (5 years)


v

I wish I'd known that this unexpected journey that began 4 years ago would
not be one of sadness,
but of unspeakable joy, filled with more love and pride than I ever thought
possible.

Shirley, grandmother to Aleena (4 years)


v


I wish I'd known . . .
Not everything I read would happen to my child.
I would love her more than anything else on Earth.
Her hugs and kisses are real, from her heart.
She is just like any other kid.
She would make me a better person.
Her laughs are the best music.

--Jennifer, mom to Brook (2 years)


v

I wish I'd known how incredibly in love I would be with my daughter, how
much fun
this whole process would be, and how amazing our friends really are.

--Francine, mom to Sofia (3 years)


v


I wish I'd known that my son would attend his local school, and would have
lots of friends
who just accept him and like him for who he is. I wish I'd known how
happy and normal our family would be.

--Naomi, mom to Callum (5 years)





I wish I'd known . . .
That it was OK to feel broken-hearted when we first heard the news
That having a child with Down syndrome is NOT a life sentence
That my son would have his own agenda for doing things
And that it's a privilege to be his mom.

--Sara, mom to Nathaniel (9 years)


v


I wish I'd known that, although they say our kids "stay little longer," they
still grow up too fast.

--Meredith, mom to Brianna (2 years), Emma (5 years, adopted),
and Micah (1 year, adopted)—yes, all three with Down syndrome!


v

I wish I'd known that my daughter would bring me only happiness, not pain.

-- Destiny, mom to Lily (9 months)



v

I wish I had known that my son would have received two awards at the end of
second grade:
one for achievement in the Accelerated Reader program, and the other for
being a "Number 1 Best Friend."

--Vicki, mom to Aaron (8 years)


v


I wish I'd known that children with Down syndrome just as loveable,
kissable, snotty, tantrum-throwing, bubble-blowing, huggable, and
milestone-making as their siblings.

Ava, mom to Daniel (3 ½ years)


v

I wish I'd known that I didn't have to be afraid, that it would all be just
as it should be.

--Rhonda, mom to Alex (8 years)


I wish I'd known how deeply in love I would be with my son, and how
I wouldn't know what to do without him and his diagnosis of Down syndrome.

--Vonda, mom to Noah (9 years)


v


I wish I'd known how much joy and happiness Olivia would bring,
not only to me and my wife, but to everyone around her.

--Mike, dad to Olivia

v


I wish I'd known that she would survive two heart surgeries and continue to
thrive
despite leaks within her heart. Her tiny heart was once a great big hole,
but it's full of a great big love that we get to experience each day.

--AJ, mom to Janna (3 years)


v

I wish I'd known he would be so full of life! He is intelligent, creative,
a sports nut—
just like his siblings. He's a social butterfly, a love bug, an amazing
little boy.
I wish I would've known he would be more like us than different.

--Jennifer, mom to Brady (3 years)


v


I wish I'd known . . .
That his sisters would love him so much
That he would have an awesome throwing arm
That he would have lots of friends
That he would read and love books
That he would do all the wonderful things little boys do.

--Anjie, mom to Adam (5 years)




I wish I'd known I would look Avery and NOT see Down syndrome.
I see her as this amazing, smart little cookie—strong-willed, self-reliant,
and cute as a button.
She walks around like a little queen in a parade, waving, hugging, and
talking to everyone.

--Kathleen, mother to Avery (3 years)


v

I wish I'd known having identical twin boys both with Down syndrome would
bless our family
more than we could have ever thought. They work together, play together,
and show us
how to take life one day at a time, and enjoy every moment.

--Stacy, mom to Caleb and Isaac (2 years)

v


I wish I had known that she would get through her heart surgery, that she
would crawl
and walk and play just like any other kid, that she would be able to
communicate so well,
and that life would be so normal.

--Karyn, mom to Talitha (2 years)


v

I wish I'd known that it isn't that hard, and that my daughter isn't
different
from any other little girl her age. All my dreams for her can come true!

--Kelly, mom of Alexis (2 ½ years)


v


I wish I'd known how normal and silly moms of kids with Down syndrome really
are!
I thought they were all supermoms that were like angels in the flesh—now I
know the truth!

--Cas, mom to Jirah (2 years)


v

I wish I'd known life wouldn't be defined by the myths and misconceptions I
had
about Down syndrome, but instead, it would be as "normal" as normal gets,
and my son would fill my life with love and joy beyond comprehension or
measure.

--Sandy, mom to Lucas (19 months)

I'm actually glad I didn't know much about Down syndrome when my son was
born.
I think if I had, it might have ruined those moments and that connection I
had with
my son the moment I saw him. I would have thought of the negative,
not of the fact that I had a little boy who I loved and was perfect.

--Judah, dad to Jaemen (3 years)

v

I wish I'd known the pure joy, happiness, pride, love, and dedication that
my baby would show us all. I wish someone would have told me that this baby
was going to change my outlook on life, make me a better mother to his
siblings, a better wife to his daddy and a better person to this world.

--Carmen, mom to Jaemen (3 years)


v

I wish I'd known that it was ok to grieve and scream, cry, vent and be
angry. I wish that a facility or network had been in place to reach out to
me, instead of the other way around. I wish that every parent coming home
today could see my girl and how she smiles and loves.

--Amy, mom to Larkin (2 ½ years)

v

I wish I'd known not to believe everything the doctors said my child would
not achieve,
such as breastfeeding. I wish I'd known the immense gratitude my son would
bring to my life
just by reaching up and touching my face. I wish I'd known that I would
never feel shame
for having a child with Down syndrome.

--Andrea, Mom to Alex (10 months)


v

I wish I'd known the new lesson on love that AJ would teach me would fill my
heart
in a way I wouldn't have thought possible. I wish I had known of all the
positive changes I would see in my other children.

--Ibby, mother to AJ (2 years)


v

I wish I'd known I was strong. My husband and I always thought we were the
people who
couldn't handle raising a child with Down Syndrome. Actually, there's really
nothing to "handle."

--Stephanie, mom to Megan (4 years)

I wish I'd known the stands would erupt with cheers when she got a hit in
baseball,
and that her classmates would circle around her with love and protection if
anyone was mean to her.
I wish I'd known that "being slow" would mean savoring every step, every
puddle, every blossom.

--Michelle, mom to Ciarra (9 years)


v


I wish I'd known that children with Down syndrome are NOT happy all the
time.
Darah throws temper tantrums and needs time-outs just like every other
three-year-old.
I wish I'd known that when Darah was first born, she was MY baby. When she
was in the NICU, I felt like the hospital owned her and was afraid to speak
up with my concerns and questions.

--McKenna, mom to Darah (3 years)


v

I wish that I had known that my broken heart would one day heal,
and the love that I felt for my son was the cure.

--Kristy, Mommy to Zachary John (3 years)

v

I wished I'd known we were going to be okay, that this one little chromosome
was just a tiny piece of our lives. I wish I'd known that the dreams I had
of the little girl with long dark hair were still going to come true! That
while she may beg for a green Mohawk at times, she's still that little girl
in my dreams.

--Leah, mom to Angela (12 years)

v


I wish I'd known that this would be such a marvelous journey,
and that everything would turn out . . . JUST FINE.

--Jackie, mom to Emily (28 years)


v
Quotes gathered from members of three online forums for parents of children
with Down syndrome: Downsyn (www.downsyn.com), Uno Mas! (
unomas.proboards10.com), and T21 Online Community (www.network54.com).
Quotes compiled by Kathryn Soper. For more insights about parenting a child
with Down syndrome, visit the blog sampler at www.giftsds.segullah.org.
Thanks to all the parents who shared their experiences in this booklet, and
to the owners and administrators of the online forums which bring parents of
children with Down syndrome together.

hehehe I just got the email back from her to say it's ok to share and I was trying to find the original thread about it lol...

Yeah, I'm there And Robyn, I have to agree with you - my daughter is PERFECTION

Cas

I'm there too