~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
August 14, 1998
My dearest friends,
I better tell you what's going on for next month.
I canceled our August meeting because I have been
crazy getting back from vacation and preparing for
school so I apologize if some of you came to the
meeting and no one was there.
Our next meeting is ...
------------------
When? Tuesday Sept. 8, 1998
Where? Mesa Student Services Building
1025 N. Country Club
(past University and before Brown Road on the East side of the street)
Time? 7:00 p.m. till 9:00 p.m.
What? A fun time to meet other parents
Respite? Yes. My precious friend Melinda (newly married lady) Bonham
has been doing our respite for free out of the goodness of her heart.
Those of you who have met her have commented to me how wonderful she is
with
your children. Thank you Melinda. We love you!
-----------------------
Have you ever had one of those days? For what ever reason getting our
last
meeting pulled together was hard for me. I confess my heart wasn't in
it. Maybe it has to
do with summer being here and full time kids all day long, or teenagers
who are trying
make this old mom crazy but for what ever reason it was hard. I love
Phyllis Diller's
quote...
"Cleaning the house while the kids are still growing
is like shoveling the walks before it stops snowing! "
But it was more than my messy house and the insanity of kids. I felt
depressed
wondering if anyone would even come As I struggled with wondering if
what I was
doing was even making any difference for the good, I finally knew I had
to kneel down
and ask my Father in heaven to lift my heavy heart. When so many of you
came I wanted
to cry. I love each of you more than you can ever know. I gain strength
from you. That
night I got so much more than I could ever give. Thank you my dear
friends!
As we talked about how we felt when the moment we found out our babies
had
Down syndrome I loved what a proud daddy Rick Tutt, had to say about his
daughter,
Lauri. As he began to deliver Lauri, his nurse practitioner looked at
the baby's face and
with a question in her voice quietly asked ...."Were you expecting a baby
with Down
syndrome?" Dr. Tutt looked at Lauri's beautiful face
and replied . "I
guess we were!"
Thank you Rick!
As I listened to the tender feelings of your hearts it melted my own.
One sweet
young dad, Joe Martinez, told of not knowing what to get his wife Tera
for her first
Mother's day. We chuckled as he rationalized that he shouldn't spend
money for a gift
because they were saving money for a home. (Big mistake Dad!)
But he went on to tell us of a card he made for Tera from their tiny
son, Issac. As
he repeated the words he had written all us mom's in the room were
fighting back the tears
wondering how we could get such a card. If he gives me permission I will
make copies of
it and print it in our next newsletter so you can see what I mean.
I love something Steven Covey once said..."Feelings aren't bad or
good...they just
are." There are no right or wrong feelings when it come to being a
parent of a child with
a disability. Another sweet new dad wondered out loud if we weren't
trying to convince
ourselves that it is okay that our kids have Down syndrome because we
kept telling each
other how much we loved them. He thought we might be trying to justify
it to ourselves.
I confess, I am an optimist. Yet I've had those days when I've cried
and felt I
wasn't up for the challenge that is mine of all that goes into to being
the parent of a child
with special needs. I have felt the unfairness of having to fight for
what should be his. A
chance to belong in this world, just because.
My mind goes back in time a little more than 14 years ago when I cried.
I cried for
David not because he had Down syndrome, but because I was all he had me
for a mother
and I wasn't that good. I remember making a promise to him. At that
point we didn't
know if he would live or die. But I promised him though God could have
chosen a better
mom, I would do all within my power to do my best. That is why I fight
so hard. That is
why I continue to tell the world of this wonderful young man who has
touched my life.
******************
"The purpose of life is to have God determine if he can trust us."
********************
"There is a divine purpose in the adversities we encounter every day.
They prepares, they purge, they purify, and thus they bless.
James E. Faust
---------------------------
One thing that was mentioned at this meeting was how hard it has been for families who have been prenatally diagnosed and have gone for genetic counseling.
One family shared how they were given a booklet telling of many families who were diagnosed with a child with Down syndrome. All but one chose to abort babies. The stories
they tried to help the reader feel good if abortion was their decision. The last story was about a family
who did not abort, but they ended telling how their baby died at two years old.
The family who shared this with us asked if we could do something as parents to be a balance for future parents. I know abortion is such a personal decision. Those us of
who have children with special needs I am sure didn't feel like we could ever do it. But now we wonder what we would ever do without our kids!
Please help us in this fight for right. Would you take the time to sit
down and
briefly write your story. Tell how you felt knowing your unborn baby
would have Down
syndrome. Honestly share your heart ache but also as Paul Harvey would
say..."The rest
of the story." Help us create companion booklet for parents to read as
well. The choice
is still theirs...we just want them to know about how life does go on.
And in such a good
way!
Dr. Rick Tutt (ob-gyn) has
offered his professional name to get this
book
published and in the genetic clinics. He is a father and also a
dedicated doctor who knows
what it's all about. Please send them to me at the address at the top of
our newsletter.
*******************
Suzy Eames, the mom of Brittany who is 17, is trying to form a teenage
group for
fun activities. She wants to put together a party for the kids so they
can have a chance to
meet each other and have fun. If you would like to know more please call
her at
834-4209.
----------------------
The Phoenix "Koffee Klutch" gets together once a month just for moms at a
restaurant to
have a chance to just talk and share. If you would like to know the
times and dates called
Pilot Parent Partnerships at 242-4366 and they will help you.
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A few months ago I listed all the books and tapes and goodies in our lending library but I forgot one of the best ones. My dear friend, Joan McCabe-Kern has published a parent friendly workbook and a set of six audio tapes from
her non profit
group "Advocates Across America. These tapes are designed to teach
parents and other
interested people how to advocate for the educational rights of children
with special
needs. If you want to borrow the tapes just let me know. Or contact her
personally at
email address- support@axa.org
or look her up on the internet at
http://www.axa.org
Her address is
Advocates Across America, Inc.
Post Office Box 754
Chandler, AZ
85244-0754
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THE PROMISE
In the place before our birth
Did you volunteer to come to earth
With many special trials to overcome?
And when that choice was made,
Did I raise my arm in perfect faith
And plead to have
and hold you as my own?
Did I promise I would
lead you safely home?
Now we struggle here on earth
Trying hard to hear
God's guiding word,
And wonder if He left us on our own.
Then softly through the veil
Comes a feeling that I know so well,
Because I knew you could not walk alone.
I promised I would
lead you safely home.
Then on some bright future day
Will I see things in a different way
When I remember who you really are?
And will I see
That you paved the way to heaven for me
By helping me to grow and over come?
Did you know that you were
leading me back home?
Back home to love and light,
Where heaven's blessings are assured.
Back home to walk with angels
in the presence of the Lord.
In glory yet unknown...because we
lead each other safety home.
written by Janice Kapp Perry and Joy Saunders Lundberg
from the tape "Far Different Places"
Available at Deseret Books
(1350 S. Gilbert Road, Mesa AZ 926-3234)
--------------
The Crown Without the Conflict
Eric Todd Crockett
entered life April 5, 1998
returned home August 9, 1998
Our most tender sympathies go to Rhelda and Gary Crockett
and their family. Their son Eric passed away last Sunday
afternoon. A sad as funerals are to me...this one
was truly beautiful. As Maria and Darren Chokey and
I sat there with tears coming down our faces we couldn't
help but look at his tiny blue coffin and feel like
sometimes a life just doesn't feel long enough. Thank
you Maria and Darren for taking time out of your lives to
'mourn with those that mourn and comfort those in need of
comfort.' I said something about that to Maria and she
said," How could we not come?"
As I hugged Rhelda and Gary I found it was they who
comforted me. Their Bishop Dorny talked about the joy of the life of this tiny four month old boy and the lives
he had touched. I am thankful to know that our children are innocent and pure in God's eyes. The world may see our kids as having a disability but God sees them as His beloved
son or daughter of God. There is no doubt in my mind that our children are sent to us not for them, but for us. To teach us what really matters in life. Eric big sister TiaLynn read the words to above song.
* * * * * * * * * * * * * * * *
other notes..
.
The American Youth Soccer Organization "AYSO" is now beginning a soccer team just for kids with special needs. I was so impressed with Ken
Puriton as he and his
friend Dan Klein spoke about this program. It will be a great chance for
your son or
daughter to play and have a great time. Space is limited and the
registration is this
Thursday, August 20th, so please hurry and sign up. They also need
parent volunteers to
help them be successful. I think your kids will love this. See attached
form.
(the following is from my friend Denise Miller who is an incredible mom of three kids.
Her son Grant is a twin and has Down syndrome.)
Dear Parents,
I've been blessed with an opportunity to get a group of little ones
ages, 2 -5
together for a Tumbling/ Body Awareness class at "Dance Dynamix",
located on Ray and
McClintock. The class will begin in September and will be taught by a
delightful young
lady who is a dance and education major at Arizona State University.
Call me if you are
interest and would like more information...855-4895
With love,
Dennis Miller
--------------------------------
Sharing Down Syndrome Arizona!inc.
Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234
(602) 926-6500
gina.j@juno.com
" Welcome to Holland "
"I am often asked to describe the experience of raising a child with a
disability to try to
help people who have not shared that unique experience, to understand it,
to imagine how
it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation
trip to Italy. You
buy a bunch of guide books and make your wonderful plans. The Coliseum,
the
Michelangeo David, the Gondolas in Venice. You may learn some handy
phrases in
Italian. It's all very exciting.
After months of eager anticipation, they day finally arrives. You pack
your bags and you
go. Several hours later, the plane lands. The stewardess comes in and
say, "Welcome to
Holland."
"Holland"?! , you say, "What do you mean Holland? I signed up for Italy!
I am suppose
to be in Italy. All of my life I've dreamed of going to Italy!
But there has been a change in flight plans. They've landed in Holland,
and there you must
stay.
The important things is that they haven't taken you to a horrible,
disgusting, filthy place,
full of pestilence, famine and disease. It's just a different place. So
you must go out and
buy a new guidebook. And you must learn a whole new language. And you
will meet a
whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy
than Italy. But after
you've been there for a while and you catch your breath...you look
around, and you begin
to notice that Holland has windmills, Holland has tulips, Holland even
has Rembrandts.
But everyone you know is busy coming and going from Italy and they're all
bragging
about what a wonderful time they had there. And for the rest of your
life, you will say,
"Yes, that's Where I was suppose to go. That's what I had planned."
And the pain of that will never, ever, go away, because the loss of that
dream is a very
significant loss.
But if you spend your life mourning the fact that your didn't get to
Italy you may never be
free to enjoy the very special, the very lovely things about Holland."
By Emily Kingsley.
....................
(Nuestro contacto de hable hispana para nuestro grupo de apoyo a los padres "Sharing" es me querida amiga Raquel Hoffman, si tu necesitas de ella por favor llama
al 357-9594.
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October is National Down Syndrome Awareness Month