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November 2011


  

Dearest Beloved Friends,

 

 

     I can't believe that it's November already and Christmas is only 6 weeks away!  Sharing has a lot of things going on in the next few weeks and I hope to see you at one of them including our Parent Support Meetings in November and our annual holiday party in December!  Read below for more information about upcoming events as well as a short little "From My Heart" from me to you.

 

I am thankful for you.  

David's Mom

(Aka Gina Johnson)
 

 

PS.  Don't forget to RSVP for our upcoming Parent Support Meetings and Holiday Events so that we can ready for you.   

 

 Muddy David

"I know God will not give me more than I can bear, I just wish he didn't trust me so much. " - Mother Teresa

 

UPCOMING MEETING/SOCIAL EVENTS

 

EAST CHAPTER

 

Building Relationships with Schools

 

Patrick Hanzuk
Patrick Hanzuk at the Pumpkin Patch


 Thursday, 

November 17th, 2011

 

7pm - 9pm

 

Mesa Student Service Bldg: 

1025 N Country Club Rd, Mesa 85201

 

Our monthly parent support meeting will be presented by Eric Putnam, MA LAC.  He is founder and owner of Independence Behavioral Coaching of Scottsdale.  He will come and teach us basic communication skills, how to build relationships with school staff, and encourage a supportive alliance in order to better guide the student's success and growth.

 

CHILDCARE IS AVAILABLE

PLEASE RSVP:   info@sharingds.org

 

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Santa and ElfAnnual Holiday Party with Santa

 

Saturday,

December 3rd, 2011  

9am- 11am 

 

Rockin' R Ranch

 6136 East Baseline Road

Mesa, AZ 85206

 

Join us and our fabulous volunteers as we dance, make crafts, eat yummy holiday treats and complete this wonderful morning with a visit from Santa and his Elf.  We will have a few awesome holiday themed gift baskets to raffle off so be sure to purchase your tickets upon arrival (cash only).  Don't forget your smile and a camera!

 

RSVP is REQUIRED for this event: info@sharingds.org.

 

INCLUDE with your RSVP; your name, the number of adults and the number of children (include their ages and sex).

 

 

 

Halloween picture of Caleb Boyette with big brothers, Zach and Brandon
Caleb Boyett with big brothers, Zach and Brandon

 

WEST CHAPTER

 

Special Needs Trusts and Wills; by Kent Phelps

Thursday, Nov. 10th, 2011  

 

6:30-8:30 p.m.

  

Horizons Community Church

 14120 N 79th Avenue

Peoria, AZ 85381

 

A lot of us do not realize that preparing a Special Needs Trust/Will is an important thing to do or that before our adorable children turn 18, we need to have their guardianship in place, which should also be included in their IEP's. 

  

Please join us as attorney Kent Phelps informs us of these important documents and answers any other legal questions you might have.

  

RSVP: Jamie@sharingds.org

Kent Phelps(
Kent Phelps

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Christmas with Santa 2009 

Christmas Party with Santa

     

 Saturday, December 10th, 2011


 10 a.m. - 12pm 

 

Where: TBA (Peoria area)
 
               
 Ho, Ho, Ho!! Santa and his favorite Elf are coming to town and would like to celebrate the holiday season with all of you. Join us as we enjoy crafts and games for all ages, music, refreshments and great company. Please remember to bring your camera and your smile!

 

RSVP is required: Jamie@sharingds.org

 

INCLUDE with your RSVP; your name, the number of adults and the number of children (include their ages and sex).

 

 

 

 

  

FLAGSTAFF

 

 

eme2
Eme and her siblings

  Creating Scrapbooks for New Families

 

Thursday,

November 17th, 2011  

6:00pm- 8:00pm 

  

St. Pius X Center

 (Catholic Church)

2257 E Cedar Ave

       Flagstaff, AZ  86004

 

We will be compiling a scrapbook of pictures and short stories from our families to keep in the Flagstaff Special Care Nursery. These will be a resource the hospital medical staff can share with the new parents until Sharing Down Syndrome Arizona can get to their bedside to share even more!  Please bring a variety of photos of your sweet angel child (with Down syndrome) having fun, living life!

 

RSVP: Lanistevens@sharingds.org

 

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2009 Christmas Rachel2nd Annual Christmas Party

 

Thursday, December 15th, 2011  

 
6:00pm- 8:00pm
 

 

St. Pius X Center (Catholic Church)

2257 E Cedar Ave

Flagstaff, AZ  86004

 

 

 

When you feel the chill in the air this could only mean that the holidays are here!  Share this special time of the year with us and your friends at our 2nd Annual Christmas Party.  We will have cookie decorating, small craft for the kids, music for dancing, yummy treats to eat and a visit from Santa!!  Bring your camera and a smile!

 

RSVP is a MUST:  Lanistevens@sharingds.org

INCLUDE with your RSVP; your name, the number of adults and the number of children (include their ages and sex).

 


 
From my heart to yours2
Dearest Beloved Friends,

 

     Each November I can't help but feel thankful. One because it is my son David's birthday (11/11/11) and this year he turns 28.  The other is because Thanksgiving always reminds me to remember how I have been blessed. 

 

     In October I love that David got to go with his good friend Rey Valdez to a fun Halloween Dance that incredible Chandler Parks and Rec hosted. (Thank you Collette!)

     

This great dance is thanks to Collette Prather who is Recreation Coordinator for Chandler Parks and Rec. You don't have to live in Chandler to attend their activities. Her contact information is Collette.Prather@chandleraz.gov

 

 

David and Rey Halloween
David and Rey Halloween

     I also loved seeing the cute Trick-or-Treater including our 3 year-old grandson Finley and I realized being a Super Hero can wear you out. 

Spiderman 

     I saw pictures of Buzz Lightyear (grandson Ryan) and in my mind I could hear him say, "To infinity and beyond!" I saw our newest grandson (Brayden dressed like a skeleton), who at only 6 days old knew he should join the festivities!

 

 Ryan Johnson HalloweenBaby Brayden.j

     

     But something else that was fun was going on was that just after Halloween I went to visit my sweet friend, AJ Medina at St. Joseph's Hospital. I know those darling nurses adore our babies but they had outdone themselves this time by dressing AJ up as a kissable Halloween pumpkin. When AJ's parents (Armando and Joanna) came into the NICU that morning they were delighted.  

 

Aj Medina Happy...umpkin
Aj Medina "Pumpkin"

     But AJ's dad Armando had a question for those nurses. Why did they choose a "pumpkin" as his costume? They said they didn't know, but they just thought he'd look cute.  AJ's parents smiled knowing that only they knew the affectionate nickname Joanna had given her son the moment she delivered her tiny 1 pound 9 miracle baby, was "Pumpkin!"  Without a doubt, "A coincidence is God's way of remaining anonymous."

 

     I am thankful for a thoughtful OB doctor who after AJ was delivered by emergency C-section pulled the surgical drape to tell his mother, "He's tiny, but he's feisty!"

 

     Those words gave Joanna just enough hope to hold on until her husband could board the military plane that would carry him the 24-hour journey from Africa to Arizona so he could see their firstborn newborn son. 

 

Armando and family
David, Armando & Joanna Medina & Joanna's sister Vealka

     I have discovered there are three things that will happen when you give birth to a baby with Down syndrome:

 

1.  The first is that you will feel afraid to love your baby, for fear holds you back. But as soon as that fear dissipates (and I promise it does) you will find your heart over-flowing with love and gratitude for this baby that has been entrusted to you. 

 

2.  The second is that many wonderful "Angels" will be placed in your path to help you.

 

     For AJ, and his mom, their first "Angel" is AJ's favorite nurse, Trina who has gone out of the way to care for AJ.  Trina adores AJ as do all those cute nurses at St. Joe's so please don't tell them that Trina is AJ's favorite for I know he loves them all!

 

Nurse Trina
Nurse Trina and AJ's Mom

     My first "Angel" was my wild and crazy friend Kris Holladay, whose little girl Kari had Trisomy 18. When Kari was born in 1978 things were handled differently than they are today. Kris and her husband were told that Kari would not live through the weekend, so they should just take her home and love her. Well that amazing little girl defied all medical predictions and lived until she was 10 years old. 

 

Kris Hollady
Me and Kris Holladay

     I met Kris when we both lived in the small town of Tooele, Utah. When Kris called to wish me congratulations it felt so good to hear her enthusiastic words of, "Oh Gina! I hear you have a beautiful new baby boy!" I knew that news (good and bad) travels fast in a small town and I was certain she didn't know of David's disability. But still it felt so good to hear that instead of the usual, "I'm so sorry", which is what everyone else said when they called.

 

     But I knew I had to tell Kris the truth so through my tears I sobbed, "I do Kris...but he handicapped!"  To my surprise her reply was in a half whisper as if she were sharing a guarded secret that only she and I knew... "I know! Isn't that WONDERFUL!"

 

     All I could think of was that Kris was one sick puppy if she thought having a baby with a disability was a good thing for he was too new for me to have learned the truth; that he was one of the sweetest gifts God could give me.

 

     My second "angel" was my friend Toni Brown. I was still so grief-stricken as I tried to figure out how I was going to be the mom of a child with a disability. Toni suggested we should go on a "date" to see David and then have dinner. I certainly did not feel much like going out but I did want to see my baby.

 

Kris and Hal Holladay and family
Kris and Hal Holladay and family

    As we drove the 45 minute-ride on that cold November night to LDS Hospital in Salt Lake City, our husbands chatted in the front seat about sports and we sat in the back trying our best to exchange small talk but it was not working. Toni could see my sadness though I tried to hide it and in a gentle voice she asked, "Gina, how are you doing?" I knew I was a wreck but I lied as I numbly replied, "I'm fine."  But Toni knew better. She probed further... "No... I mean, 'How are you really"?

 

     Her words took me off guard and before I could stop myself, I started to cry as I blurted out, "Toni, it feels as if my heart is breaking!"  Toni looked at me, not with a look of pity, but rather one of obvious excited revelation.  "Gina! Didn't you ever read, "How the Grinch Stole Christmas"? 

 How_the_G

     When she said that I wondered what in the world that had to do with what I was going through. When I said that I had read the book she continued, "In that book, the Grinch's heart had to break... so it could grow bigger and hold more love. That's what's happening to you!"  A rush of healing comfort washed over my heart telling me her words were true.

 

3. The third thing that will happen is that you will see how wishes come true and you will find moments of unexpected laughter sprinkled along your way to remind you, "Life is Good!"

 

     I thought of these things a few years ago when Luke, one of David's brothers, invited him to go with the brothers and some friends to their first "Boy's Trip" to California.  David was thrilled to go and when they returned that trip was all that David talked about.  Even months later when his beloved (late) Grandma Johnson (aka Sugar Mama & Grams) came to visit him, he and Luke made us laugh with all that happened on that trip.

 

Grams
David and Grams

 

     Then Luke announced they wanted to do another "Boy's Trip" the following year and while putting his arm around David said that they wanted David to come with them. David cheered, "Yeah Mom! Boy's Trip...No Girls Allowed!" How could my answer be anything but a resounding, "Yes?"

 

     But then I asked where they were going and he said, "Vegas Baby!" In that moment, I was so mad. I was angry with Luke for not telling me in the first place, and I was mad at myself for not asking.  I immediately said David was not going to Vegas!

  

     Both boys began to argue with me hoping their words would change my mind. Luke talked about all the fun they'd had when they had taken David to California and said he knew David would have even more fun in Vegas, but I was just not buying it!  

 

     Yet in my heart I was struggling, wanting David to be included but not have him exposed to the racy advertisements on billboards and taxicabs. David tried to help adding, "Yeah, Mom! Vegas Baby! Beautiful girls!!!" And last but not least, "Gambo" (gamble) while signing "machine" and then pantomiming pulling down the handle of an invisible slot machine with the sound effects of "Cha Ching"!

 

     I held my ground but those two boys hounded me every chance they got for months.  As time passed, I saw Luke using this "Vegas Boy's Trip" to his advantage encouraging David to "eat less he so could get skinny for all those beautiful Vegas girls." I could feel myself weakening when a time or two I even used the leverage of a Vegas trip to get David to do his chores. Yes poor parenting skills, I know but it worked. 

 

     Slowly my boys could see that they were wearing their old mother down. But it was one night when Luke said something that touched my heart. He said that David was their brother and it wouldn't be much of a" Boy's trip" without him.

 

     I knew Luke was being sincere but I said, "Luke, if I had my way I wouldn't even let you go to Vegas!" Still trying to convince me he playfully added, "But Mom, David has a FREE TICKET into heaven!  I countered with, "Yeah Luke... but you don't!

 

    Well long story short, I did let David go with the guys but of course sent them off with instructions to take good care of David and not to let him gamble. (Why did I have the sneaking suspicion they might not heed all of my motherly advice?)

      

     When David returned he was so happy and I realized both of our wishes had been granted.   Mine was that David would be safe and have fun and David's was to see beautiful girls, ride in a "limo", and "gambo."  

 

     When they returned Luke showed me the pictures. I saw how David was brave (well, sort of) as he rode the "Big Shot", a ride that boasts of catapulting its riders 160 feet high in the air at 45 miles per hour while using words like "G Force" and "gut-wrenching" to describe the experience. 

 

David on Vegas Ride
Friend, "Russ Dog"; brother Brad; David and brother Luke

     On the first night there they let him play one slot machine and I thought, well, at least he learned gambling is bad because you lose all your money, but instead David won $125 at this first try (which he proudly kept.)

 

     And about those pretty girls?  Well, as they say, "A picture's worth a thousand words and so I guess for sure, for David..."Life is Good!"

Girls
"Life is good." -David

 

All my love, 

 

 

David's Mom

(aka Gina Johnson)

 

 

 
Photos!
 

Reece
Reece the Tiger!

Fults3
Joshua Fults

 

 

 

 

 

 

 

 

 

 

 

fults2
Lizzy Fults

 

 

 

Gina 16
Gina in costume at age 16

 

 

 

 

 

 

 

 

Farm fun
Farm fun











eme smile
Eme's Smile.
vanity the skunk
Vanity the skunk
The Joker
The Joker
Gage
Gage
abby and elise
Abby and Elise Prosnier, as Dorothy and Glinda

Quick Links

Fun Stuff!!

 

Meet Sarah Gordy, a passionate and experienced actor with Down syndrome. She played Pamela in a PBS drama called "Upstairs Downstairs."  

 

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Cute Abby and her BFF Christine (both Girl Scouts) are featured in the newest Girl Scout Music Video:  

 

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Shifting Perspectives at the Dublin Arts Council

 

An expansive photography exhibition from the United Kingdom aims to change the way people see Down Syndrome 

 

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City of Chandler Therapeutic Recreation Program- Events

 

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City of Mesa Adaptive Program Fall Events

 

Holiday Light Tour

Mistletoe Magic Dance

 Click Here for More Info

 

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 City of Gilbert Adaptive Programs- Fall Events
 
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City of Glendale Adaptive Programs-Fall Events

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Adaptive Skiing Lessons and Programs at Arizona Snowbowl

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Free Photo With Santa at Santa's Winterwonderland at Bass Pro Shops

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Special Olympics Arizona