Sharing Down Syndrome Header 2
July 2013
From my heart to yours2
Dearest Beloved Friends,

Do you want to know what the most fun thing is?!! It's having a child with Down syndrome! I have had 29 years to see what our kids do for us and if the world knew, they would be so jealous they don't have a child as cute as ours! Just check out Will Fritzler (Proud Parents, Brian and Kelli) and you will know why we have bragging rights!


Cute Little Will

This past Memorial Day was tender for me. My husband, Curt, and I, along with David, flew to Utah to put flowers on the grave of my angel from heaven mother-in-law, Grandma Johnson. Now of course David has to give everyone their own unique nickname so you'll never guess what he called Grams. He called her "Sugar Mama." My family laughs at how appropriate that title was. According to my understanding a "Sugar Mama" is an older woman who gives money and gifts to a young man, and, well, that was Grams! 


David at Gram's Grave

While in Utah, I was also able to connect with two dear moms who helped me when David was born, Debbie Buzianas, "RJ's Mom," and Gwen Gowans, "Trina's Mom". 

 

Now although their children had more involved disabilities than David, I saw that no matter what challenges we have, we adore our dear children. Even though their "babies" are gone, they still remember them every single day. xoxoxo

Gwen David Gina Debbie

While we were waiting in line at Southwest Airlines to come home, David talked to everyone there. It didn't matter if they were hurrying to catch a flight, lost in their own thoughts, or closing the world out by listening to headphones, as soon as they saw David, they started smiling. I love watching from a distance to see the way he disarms the world.

  

As we went through security, David made the officer laugh because he showed him a card a pilot had given him a few flights before that looked official. While showing the card with his ID he told the officer that he was with the FBI. I'm sure all the passengers felt safer already!

  

When we boarded the plane I was following David as I always do because I love seeing the astonished reaction of those he passes. As soon as we boarded and began to walk down the narrow and crowded aisle, I heard him say in a loud voice, "Hey people!! I'm back!!" I could hardly contain my delight as I saw everyone look up smiling at this young man who really thinks that life is good.

  

I was passing by one lady when our eyes met. I smiled at her and teased that I used to be shy but not since this boy came into my life. She nodded her head and smiled but I could see the most tender look on her face and I was almost certain I saw some tears welling up in her eyes. Though she was a stranger I could 'feel' something special about her. She then reached up to hug me. When she did she softly whispered, "My daughter just adopted a baby with Down syndrome."

  

Well of course you know who I had to sit by during the whole flight! I loved visiting with her but I'd noticed David had chosen to sit with a young couple who had a baby boy with them. We were in the middle of taking off when David yelled up to me to take his picture. And being the" Mamarazzi" I am, I was more than glad to.

David on Plane

I worried how the couple felt who David had selected as seat partners but the young father smiled and let me know all was well. I could hear David telling them all kinds of things, so I settled down and listened to this new grandmother named Lisa Leavitt tell me about her new grandson.

  

Lisa's story was so tender...she told me how her daughter could never get pregnant so they adopted a little boy. When he was about 6 months old, he was diagnosed with a difficult genetic medical condition that would not only leave him dependent on others, but he would also have a shortened life span.

  

Lisa shared how her daughter and her husband adored their son so they went on with life, grateful for what time they did have. They later adopted another son who is doing well. But then the daughter called one day to ask her mother if she would ask their family to pray for them as they were one of six families selected by a birth mother to possibly adopt her baby. The daughter told her she did not know the gender of the baby but she did share that the baby had Down syndrome.

  

Lisa said when she hung up the phone the most amazing thing happened. She said in her mind's eye it was as if she could see herself sitting on the couch when she saw a little boy with Down syndrome run into the room and climb up on the couch so he could hug her. She said she knew in that moment that the unborn baby was a boy and that indeed the parents would choose her daughter's family to adopt him.

  

Lisa told me that when she was growing up at school she helped students with disabilities. She said her "favorite" were children with Down syndrome and she always thought she would have her own child with Down syndrome one day. Even after having six children, none were born with this disability.

  

Listening to Lisa made me choke up. I thought about each of you and how your babies have come into your lives...a few through adoption and many others the typical way, but what a blessing beyond words we share.

Lisa and David
David and Lisa Leavitt

After we got off the plane and while waiting for our luggage to come down the conveyor belt, I saw that young couple who had been so kind to let David sit with them.

  

I went over to thank them and the father smiled and said, " I went to high school with David." I felt a most humble feeling in my heart. Just as he said that, David came over and wanted a picture with them. As they were getting ready to pose, David looked at the young mother's slightly bulging tummy and said, "You have baby?" She smiled and said, "Yes, we are having another little boy." David replied, "Just like me?" The mother's response melted my heart as she sincerely replied, "Yes, David...We would LOVE to have a son just like you!"


David Lisa and family at airport

Just before I sat down to write this to you, I opened my email and got this  picture from our daughter Emily who is serving a mission for our church in New York City. It warmed my heart.   

Emily and the twins

As Emily wrote about these twins, she made it clear she adores them. Why am I not surprised? Don't you just love the look on their faces! I want some of that attitude!

  

I feel so thankful for the great year SHARING has had. I won't list all that we've done, but I especially loved when so many of you came to hear David's former sign language teacher, Cara Ortiz, as she taught Baby Signing to us. 

I am so thankful for my dear friend, Michael Remus. He not only accepted our invitation as a guest speaker at one of our monthly support group meetings, but he also dedicated one whole Saturday to our parents by giving his presentation, "More than a Shared Classroom" where we were enlightened for sure! All who attended received a certificate for 6 CE credits as well!

Michael Remus with Brian G. and his big brother
Michael Remus with Brian G. and his big brother.
In March, we hosted our Glow Run which was so much fun. We also joined with Phoenix Children's Hospital to welcome the opening of their new Down syndrome clinic and that same night we enjoyed the World Down Syndrome Day picnic. On the following Saturday we had our Easter Egg Hunt. Whew! Do we know how to party or what?! Smiley
Michael presenting at a meeting we hosted about Inclusion.

I had the chance to go to California to help my sweet daughter-in-law who is expecting their 3rd baby and while there I found out we had 12 new babies born in the Sharing Down Syndrome community.  I love being with my grandchildren, but it was so much fun to get home and go smooch on those cute new babies!


We continue to grow all over the state of Arizona. Our new Yuma Parent Support Group is up and running! We are so thankful for all the work that Donna Smith did for our Yuma Chapter and we are equally excited to have proud mom Jessica Carranza step up to be the new chapter leader.  You can contact Jessica at jcarranza01@icloud.com.

Yuma Parent Group

Our Westside Chapter leaders, Jamie Boyett, Janie Garcia and Kerri Smith hosted our wonderful Breakfast with Santa and now cute Judy Gates (aka Cody's Mom) has joined as the monthly meetings coordinator. I will let you know as soon as dates and places are announced.

 
 Westside leaders with Santa

Our Flagstaff Leader is Lani Leonard and you can contact her at lanileorard@sharingds.org. We don't hold monthly meetings in the summer but if you want to volunteer to be a play group leader just call me (602-622-6344) or if you are near the Chandler area you can contact Chaunacy Armstrong, cdnaa@hotmail.com and Sarah Celmer, slcelmer@hotmail.com to to see what those party animals are doing.
Playgroup leaders, Chaunacy Armstrong and Sarah Celmer

Our Spanish Chapter Leaders are Jennifer O'Connel and dear Rebeca Lopez. Claudia Cota and Ramona de Castillo have now joined them as our new parent leaders. Is Sharing blessed or what?

Spanish Chapter
Our next New Parent Dessert Night won't be until August but if you have not attended and would like to be invited please call 480-926-6500 or email us at info@sharingds.org.
2011 Walk

The next big event coming up is our amazing 14th Annual SHARING DOWN SYNDROME WALK! It will be held at Tempe Diablo Stadium on Saturday, September 21, 2013. Last year not only did ABC 15 News come to see our cute kids but over 3,000 of you came to help us promote positive acceptance and inclusion for all people who have Down syndrome.It is through our WALK that we raise the funding we need to keep our good work going for another year, and remember all donations are tax deductible!

 

We are looking for sponsors for our Walk! If your business, or employer, would be interested, we'd be happy to send you a sponsorship packet. With a sponsorship, the logo will appear on our T-shirts, in our newsletter, on our website, and will flash on the score board during the event. Email us at info@sharingds.org

for more information.

  

Also you can nominate someone you feel has served your child well with our "Outstanding Service Provider" of the Year Award. Email us a one page letter telling us why you feel they deserve this honor. And if they are selected you will come up on stage to present the award to them.

  

Remember to register your SHARING TEAM at www.sharingds.org to walk in honor of someone you love who has Down syndrome. The team who raises the most donations will be the Grand Marshals and will lead the walk with the Phoenix Sun's gorilla! They will also receive the beautiful framed picture, "Gentle Heart" by Nancy Noel.

Gentle Heart

Well dear ones...thanks for having the cutest kids ever and for letting us be a part of their lives! Hope your summer is wonderful!

Love,
David's Mom (aka Gina Johnson)
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PS. Special thanks to East Valley Tribune reporter, Abel Muniz, who wrote the sweetest article about Sharing Down Syndrome Arizona. Abel came to interview me but didn't realize I had helped his mom Maria when his little sister Nancy was born. Maria is now a Yuma parent leader.

Lastly, I'm going to brag a little, but we received the US Local Business Association's Best of Gilbert Support Groups for the 5th year in a row!

Abel and David
Abel and David

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