February, 2000

~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
February, 2000

My Dearest Friends,

Our meeting this month will be different than I had originally told you about. I still do want to do a sibling workshop, but the feeling has come to my heart that what would be most fun, it to still meet at the same time and place but to have no meeting at all. Just a time to come and spend time to truly enjoy one another. It will be our official "Un-Meeting." Would you be so kind as to bring a plate of some kind of goody.. We will provide the drinks and snacks for the nursery. Come for a great time with other wonderful parents!

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My precious parents, as I write to you each month I try to share the feelings of my heart. For better or worse, I take you with me along on this ride of my life.

Today as I was going to see my mom, who has Alzheimer’s, I rode up the elevator with three elderly people. I can’t help it but for whatever reason, I just love children and old people. You know how usually in an elevator people don’t talk to each other. Well not today. As I was getting on I asked an elderly gentleman what floor they were going to. With a twinkle in his eye he responded, "I’m going half-way to heaven." :)

I am thankful for the little lessons of life we are taught by our children. When a Sunday school teacher was frustrated with David when he was little, she wanted to move him to a class with only kids with disabilities. I let her know that wouldn’t fly for me. In her frustration she said, "He’s not learning!" What I said came from my heart…"He’s not here to learn. He’s here to teach." No matter how long we have our children , they do teach us.

Sadly, on January 19, 2000, we had to say good-bye to one of our little ones. His name is Braxton Matthew Huff. His time here was not nearly long enough, it was only for 13 months and 13 days.

When I had my first heartache at age 12, I thought I would never love again and that way, I would never have to feel the pain of a broken heart again. I was wrong on both counts. Every time we love, we take the risk of letting our hearts be broken. But it’s precisely in loving that we find out how great love can be.

On Wednesday January 19th when Braxton passed away quietly and unexpectedly in his sleep, it took us all by surprise. He had been sick, but no one could have imagined this.

As a parent, you can imagine the heartache that Shawnie and Kevin Huff felt when they found their baby boy. Yet even in their grief, these sweet parents gave me a gift I shall never forget. They let me come to their home, and say one last good-bye to this beautiful little boy. I was given the privilege of holding him one last time. It’s hard to explain but just holding that precious angel baby did something wonderful to my heart. I held him when he first came to this earth, and now I had the privileged of holding him so soon after he had been called home to the God who gave him life.

I need you to know that I love our Father in heaven with all my heart. I also love his son Jesus Christ. The poem about "Foot Prints on the Sand" has special meaning to me because so often it has been the love of God and his son that has carried me through the hard times in my life. But this day it felt like too much. I know God’s time-table and mine are not the same and that we walk by faith here on this earth. But that doesn’t make it any easier. I am selfish and want our kids forever here with us. In my heart of hearts, I do believe that in another time and another place we will be together forever.

It is with all our love Shawnie and Kevin, that we send our heartfelt sympathy and deepest regrets to you and your family. We too know the love you feel for the child who changed you forever. Our world is a better place simply because he came, even for such a brief time, to share the greatest gift of unconditional love. We thank you for sharing him with us.

Today I rode ‘half way to heaven’ with a kind old man. But when I get to heaven you know I will look up a little boy who went before us and tell him I love him.

With all our love, your forever friends in "Sharing".

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Tribute to Virginia & John Opincar

Many of you may know the remarkable couple, Virginia & John Opincar, or "Oma"as Virginia is affectionately called by many. They have been pioneers in working with all children to help them achieve their potential, but especially working with children who have disabilities. They have given their lives to making a difference for good in the lives of others. The community has thought of a way to honor this incredible couple and to let them know how much we appreciate all they have done for our community and to serve our families. Virginia was a part of the group who originally started the MARC center. She has taught for 40 years and quite often if the child had a disability she would not even charge the parents.

In order to honor them, please take a minute during the month of February; and write a love letter to tell how you feel.

Address:
Virginia and John Opincar
1820 E. Baseline Road
Mesa, AZ 85204

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Dear SDSA:

As I have delivered our new parent packets to Arizona hospitals, I have seen a great need to translate our packets into Spanish. Any help with this project would be greatly appreciated. Please contact

Lori Marquette at: (480)752-0995.

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Pictures

We need more pictures for our "photo gallery" on our website. Please share with us, and all our cyber visitors, your favorite picture of your child with DS (they can be by themselves or with other loved ones). You can hand them to Gina, Lori Marquette or Martha Vance or mail them to Gina or e-mail them on JPG format to LoriMarque@aol.com. We will make sure you get them back.

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El contacto de habla hispana para nuestro grupo de apoyo a los padres "Sharing" es Raquel Hoffman, si necesitas de ella por favor llamala al (480)357-9594

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Next Meeting
East Valley:

Thursday February 17, 7-9pm
Mesa Student Services Blding
1025 N. Country Club (East side of Country Club between University and Brown Road, across from Mesa Lutheran Hosp.)
About: A For No Reason, Fun, "Un-Meeting"

Respite care will be provided

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West Valley
Next Meeting:

Tuesday February 8th,7:30pm
At St. James Catholic Church
19640 N 35th Ave./Glendale
About:Services Overview
Raising Special Kids will talk to us about the different service agencies involved in the care of our kids.

Respite care will be provided

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Dances!
Dances!
Dances!

We had planned a Valentine’s dance for the first Saturday in February, but then we found out Renee Wills, with the Gilbert Parks and Recs. are hosting a dance that same evening. So we have decided to join efforts and have fun together. This dance is for our our teenage and young adults to have a great dance and a good place to meet new friends.

It’s in Chandler at:
McQueen Park Activity Center
510 N Horne (off of McQueen Drive, between Guadalupe and Elliot. Turn on Cullumber and take to Horne)
When? Saturday, February 5, 2000
Time? 7:00 – 9:30p.m.
Cost? $2.00, but tell them you are with "Sharing" and there will be no charge. I know it will be so much fun! Feel free to call Renee Wills for more information. 480-503-6224
…Also Paul Bennewitz (with the Arc) want to invite any post high school years to their Valentine’s dance…
The Pyle Center in Tempe
655 E. Southern, Tempe
(480) 350-5211 Southern rural library on center city of Tempe

Date? February 11, 2000
Time 6:30 –8:30 p.m.
Cost? $1.00 But tell them you are with us and we will cover that cost.

Duff MacDougal is one of their recreation program participants and you know what fun he is, so encourage your son or daughter to come. Hey, you can’t ever dance too much!
Call Paul Bennewitz at 480-966-5704 for more information!
(Thanks Paul, and Renee for including us!)

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Hello! I am Lori Marquette, the webmaster of our new website:
www.downset.com/sharingdsaz. I am excited for you to look at it, and give me any feedback that you feel is appropriate. I am going to add a section called "Arizona Family Webpages" and I am inviting you to join us! You may email me off of the website, or at

Lorimarque@aol.com

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God has a way of showing me, through David, the good in this world. I have watched David grow from a critically ill newborn to a 16 year old young man who says.... "What’s Up?" He reminds me that although he has a disability, the disability is not who he is. He reminds me of how much the little things matter.

Last week in his English class he was assigned to write down the words to a song they liked, play the song and then tell the class why the words had meaning to him. I knew David loved Kermit the Frog singing "Rainbow Connection", so we typed up the words and put the CD in his backpack.

But the next morning things had changed. He said he didn’t want to do Rainbow Connection, instead he wanted to do Brittany Spears singing "Hit Me Baby, One More Time". I was not sure if that song would be appropriate so I tried with all my might to change his mind. I told his teacher, Ms. Moreno of my dilemma, and she said it would be fine. David has to remind me occasionally that he is 16 and a full fledged teenager. He knows more what is ‘age appropriate’ than I do...

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East Valley Meeting:

3/16/2000 Dr. Dan Kessler
developmental pediatrician
Children’s Rehabilitative Services/ St. Joseph’s Hospital

4/26/2000
Martha Beck
Author of "Expecting Adam"

5/11/2000
"Thank you" party At the Johnson's House.
(note change from third Thursday to second)

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News from the West Valley:

Thanks to Marta Urbina from Raising Special Kids for coming to speak to us on January about humor. She sure got a lot of laughs out of us.

Make sure and mark your calendars for our next meeting. Someone from Raising Special Kids will be talking to us about the different service agencies that we deal with, and try and shed some light in the tangle of who is responsible for what. Which for most of us, specially the ones new to this, is a big mystery. I hope the more seasoned parents also attend, so they can share their experiences and expertise with us new ones.

Martha C. Vance

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"If"

If I knew it would be the last time
That I'd see you fall asleep,
I would tuck you in more tightly
And pray the Lord, your soul to keep.

If I knew it would be the last time
That I see you walk out the door,
I would give you a hug and kiss
And call you back for one more.

If I knew it would be the last time
I'd hear your voice lifted up in praise,
I would videotape each action and word
so I could play it back day after day.

If I knew it would be the last time
I could spare an extra minute or two,
To stop and say "I love you,"
Instead of assuming you KNOW I do.

If I knew it would be the last time
I would be there to share your day...
Well I'm sure you'll have so many more,
So I can just let this one slip away.

For surely there’s always tomorrow
To make up for an oversight,
And we always get a second chance
To make everything right.

There will always be another day
To say our "I love you's."
And certainly there's another chance
To say our "Anything I can do's?"

But just in case I might be wrong,
I'd like to say how much I love you
And I hope we never forget... (that...)

Tomorrow is not promised to anyone, Young or old alike. And today may be the last chance you get
To hold your loved one tight.

So if you're waiting for tomorrow,
Why not do it today?

For if tomorrow never comes,
You'll surely regret the day.
That you didn't take that extra time
For a smile, a hug, or a kiss.
And you were too busy to grant someone,
What turned out to be their one last wish.

So hold your loved ones close today,
And whisper in their ear,
Tell them how much you love them
And that you'll always hold them dear.
Take time to say "I'm sorry,"
"Please forgive me,"
"Thank you," or "It's okay."

And if tomorrow never comes,
You'll have no regrets about today.

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On a Sunday recently, I was going crazy, as we do as mothers, trying to get the kids all in the car and to church on time. (This is nothing short of a miracle in our home!) Now on this particular day we were actually ready. But I was frustrated because David, once again, ran back in the house to something. I got mad and knew Curt would be driving up in a few minutes so he could ride with him. I wanted to teach him a lesson, so we took off. As I sat in church I began to feel so bad. I wondered exactly what lesson was I teaching my son. I hurried to my car to run home. As I drove down the street, I saw a handsome young man in a suit and tie, pedaling like mad, on his dirt bike. Little beads of sweat were on his face.

Tears filled my eyes as I asked him if he wanted a ride. "No, fine Mom." was his response, which translates to, "Mom, if you're going to leave without me, I’ll get there one way or another."

David’s mom

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"If you live to be a hundred, I want to live to be a hundred minus one day, so I never have to live without you."
Winnie the Pooh

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"Sharing News"
is the newsletter of "Sharing Down Syndrome Arizona, Inc.".
It is produced September through May each year.
There are no subscription charges.

"Sharing Down Syndrome Arizona! Inc."
is a non-profit agency. We appreciate your support.
If you would like to make a donation to SDSA,
please send it to:

Sharing Down Syndrome Arizona! Inc.
c/o Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234

(480) 926-6500

All United Way contributions need to be earmarked with our address and phone # above.

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Here at "Sharing News", we are interested in you! If any of you have child-related items that you would like to sell, or give away to another family, post it here! We would also like to post any "wanted" items as well!

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Sharing Down Syndrome Arizona! Inc.
425 E. Tremaine Ave.
Gilbert, AZ 85234
(480)926-6500
President: Gina Johnson

e-mail:gina.j@juno.com web page:www.downsnet.com/sharingdsaz