Thank you, Team Liam!
Dearest Beloved Friends,
Thank you, dear friends, for all each of you did to make our 24th Annual Sharing Down Syndrome Walk on April 20, 2024 such a success! The team who raised the most donations came all the way from Duncan, Arizona, TEAM LIAM! Oh, how we love Liam’s (age 10) and his proud parents, Kaylee and Daniel Rodriguez. And his siblings, and big sister, Dusty Rose (13) and little brother, Noah (5). As you can see by this picture, I think about half of their town came the four-hour drive to Celebrate Down Syndrome with us! We love you!
Team Liam raised $5,335 for us. For over 33 years, all the parents support programs we provide have been FREE to families and it is generous donations like these that help us keep this good work going. 😊
Thank you, Merrie Angel Ellsworth, for singing our National Anthem and for Allysa Barreras for saying our pledge of allegiance. When I saw the Gilbert Cologuard present the flag, I feel thankful for the country we live in, but when I realized the third person in that procession is a young man with Down syndrome, it touched my heart deeply.
“A true hero isn’t measured by the size of his strength, but by the strength of his heart.”
As I saw how happy the children (of all ages) were to be with the Superheroes Teresa Adair had invited to our April 20, 2024 Sharing Walk, it brought the sweetest memory to me.
When I was a little girl, my favorite TV show was Superman! We had an old black and white TV, but I loved seeing this amazing superhero for two reasons; one because he could fly (something I always wished I could do) and two because he was the good guy who kept the bad guys away.
Each week the announcer said he was, “Faster than a speeding bullet, more powerful than a locomotive, able to leap tall buildings at a single bound- look up there in the sky, It’s SUPERMAN!” ~Jerry Siegel
Not to mention, he could use his x-ray vision, and to see through walls! No wonder he was my Superhero!
Yes, when I was a child, Superman was my superhero, but today my superheroes are different. My Superheroes today do not fly through the air, wearing a red cape with a big red letter “S” on the front of their shirt. But if you look closely, you will be able to discover who they are.
One tale-tell sign is they have the most beautiful almond shaped eyes. Though they cannot see through walls with their x-ray vision, they use their x-ray vision to see right through the protective walls we sometimes place around our hearts. But the only thing they can see is goodness.
And with that excellent vision, they do not see or even care to notice the difference in colors of one’s skin or the shape of their body, whether it is bigger or smaller, tall, or short. Those outer appearances do not matter to them. They only see beauty. Also, they do not judge others. They do not know how to be phony or insincere because they have no guile. (*guile: the ability to be deceitful or cunning.) Instead, they have the childlike quality of innocence that I love. They do not compare themselves to others. A scripture I love says, “Man looketh upon the outer appearance, but God looketh upon the heart.” That perfectly describes how people with Down syndrome view others.
You may notice they are also smaller, low-set, but through those ears they only hear what matters most. They often seem oblivious to gossip because that does not matter to them.
Carol Tingey is near and dear to my heart. What I love about her is that she has the same uncanny ability to only see goodness in others, and she also truly loves all people who have Down syndrome.
This began over 40 years ago as a student council member when she met those first friends, and still to this day she has kept in contact with them and have included them in her life.
Chaddie Boy and Kelly Leavitt were even the best men at her wedding, which was 36 years ago on May 20th. Her own six children do not know life without these dear friends being in their home and a part of their lives.
It is because of friends, like Chaddie boy and Kelly Leavitt, that she felt inspired to create the Hip Hop Homies with Extra Chromies. (@TheHipHoopHomies)
Carol does not know it, but she continues to teach me by how she sees my son. She has commented that people with Down syndrome “Dance like no one is watching” and encourage us to do the same. To do what we love, not because we are the best at it, but because we love it.
David brings me much joy but I would be lying if I did not tell you there are times, he makes me crazy! One thing that has always frustrated me is I cannot get him to hurry, no matter how much of a “hurry” I am in. I have seen that is a common thread with most of our kids.
But Carol put that into perspective for me as well. She told me that people with Down syndrome are trying to teach us to slow down and be present in the moment. That we do not have to multitask and put so many self-imposed pressures on ourselves. She reminds me of that time treasure. She has noticed that her friends with Down syndrome do it right… they will take the time if there is one more hug to be given or one more “I love you” to be spoken.
Some people think that people with Down syndrome are always happy, but that is not true. They are just like you and me, they feel all the emotions that we feel. They can feel happy or sad, silly, funny, lonely, or depressed. But one of their superpowers is they are able to forgive quickly. They do not hold on to hurt like I sometimes do. I wish I had that gift.
For many years, I have been a guest speaker at ASU and Mayo Clinic. The purpose is so the medical students can better understand what it means to have Down syndrome. I have read the chapter in their medical book about Down syndrome, but those words can never truly explain who my son is. So, after a while I started to invite friends of mine and their parents to talk to the students.
A couple of years ago I was heading to ASU to do a presentation and I had invited David’s dearest friend, Jackson Hassell to come with us. I met him as a newborn 21 years ago and it amazes me how now he is a grown-up young man who is funny, insightful, and playful. David and he always have so much fun together. David loves Jackson’s family and often tries to tell me his real name is not David Johnson but rather, “DJ Hassell!” What am I going to do with this kid? LOL
On the day I picked him up it was so cute to see how happy both David and Jackson were to see each other. Jackson asked me to play a song he and David love to sing called, “Bye, Bye, Bye” by the Backstreet Boys. He wanted me to play it through the radio in my van. I was embarrassed to tell Jackson I did not know how to do that.
He seemed surprised but then said he would do it for me, which he did. And before you knew it that song was blasting through my radio and both of those handsome young men were rocking out and singing to their heart’s content as they sat directly behind me.
Hearing them laugh and have so much fun made me want to see them. So just a moment I took my eyes off the road and glanced in the rearview mirror. And what I saw was priceless! There they were linked arm in arms and joyfully singing together as they rocked back and forth to the music.
At that moment, I was wishing I could have had the capability to video record that magical moment. I wanted it, so I could show others the magical moment that I alone was privileged enough to witness. The name of Jackson’s team name for our walk came to my mind, “Jackson Dean the Love Machine” and indeed he was.
As I drove. I could feel warm tears begin to well up in my eyes, along with that all-too-common tightness in my throat that happens when there are no words to describe the joy I feel inside.
That feeling reminded me of how lucky I was to have David in my life and all that comes with it. But as I was feeling those tender feelings I realized something had changed. I looked back in the rearview mirror to see what was wrong.
What I saw took me by surprise. I saw Jackson’s beautiful brown eyes looking directly at mine. The expression on his face showed confusion. In a sad, concerned tone, he then said, “Gina, are you crying?”
I felt embarrassed, not knowing how to respond to him. I knew my David did not understand the difference between tears of sorrow and tears of joy and I was not sure if Jackson did. I awkwardly tried to explain but felt as if I was stumbling over my words.
Jackson seemed content with my explanation and soon he was back to being his old playful, jovial, playful self. He began to tease me about something and I teased back saying, “Jackson, when I stop this car, I’m going to get you!” Without missing a beat, Jackson just laughed and responded by taunting me saying, “I’d like to see you try!” Jackson taking me out of my old serious self that I often am and reminded me to be playful. Thank you, Jackson.
So that is why these kids I know with Down syndrome are truly my superheroes! But you parents are as well. One of those families are my dear friends,
Shawnie and Kevin Huff. I presented the Nicholas Hall Legacy Award to them at our Sharing Walk to honor Nicholas Hall, the beloved son of Betsy and Speedy Hall Nicholas passed away unexpectedly at age 13.
I met Nicholas when his mom was expecting him. Nicholas, like Jackson, was joyful and playful. He loved playing sports and all water activities, including going wakeboarding behind his grandparent’s boat. He loved his family, his friend, especially love all things orange, including his favorite, Orange Gatorade. He brought only joy to our world.
I gave this award to Shawnie and Kevin because of who they are. I met them 27 years ago when they had Braxton, their first baby, who was born in December of 1998. Sadly, Braxton passed away at just 13 months old on January 19, 2000.
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Braxton was born with many medical complications, including being born without his esophagus connected. But Shawnie, being a registered nurse, was not about to let that get her down! I will never forget how she used to have to use a machine to suction his little mouth to clear it out.
The first time I saw her do it was when she was talking about her with him at our New Parent Support meeting in my home. She suctioned her baby as naturally as you or I would wipe milk from a baby’s face. I knew Braxton had chosen well when he picked out his parents.
From the moment Braxton was born both Shawnie and Kevin were an active part of the leadership of Sharing by serving on our Executive Board. And after Braxton passed away, they served by being the leaders for our “Sharing Good Grief” bereavement support group.
The night before he passed, they had taken him to the emergency room and were told it was just the flu and took him home. They never imagined they would lose him that night.
Shawnie called to tell me, I asked if I would come to see her and she said yes. I remember looking at him in his crib. He just looked like he was sleeping peacefully. I remember had a Winnie the Pooh mobile in his crib and a sweet Winnie the Pooh tapestry hanging nearby. He looked perfect.
I cannot imagine how heartbreaking it would be to lose your child. And it was hard for Shawnie and Kevin, but they knew they loved each other and wanted more children. They went to genetic counseling and were told Braxton being born with Down syndrome was a random thing of nature and it would not happen again. I told Shawnie that she had to tell me as soon as she knew she was pregnant. She promised she would.
Sometime later, I was at Banner Desert Hospital visiting an old friend, who also was the mom of a son with Down syndrome. My friend was there for some hand surgery. We were visiting when Shawnie walked into the room. I was surprised to see her and said, “Shawnie, what are you doing here?!” In a playful tone, she quipped, “I work here! What are you doing here?” We laughed, and then I introduced her to my friend Maria.
When Shawnie entered the room, I noticed that her tummy did seem to be building but I have learned not to ask. She must have seen by the look on my face and she confirmed my suspicions by saying “Yes, Gina, I’m pregnant!” I was so happy for her and gave her a big hug! But then I acted slightly offended and said, “Shawnie, you promised me that you would tell me when you were pregnant!”
Without missing a beat Shawnie replied, “Gina, I knew that unless I could promise you that this baby would have Down syndrome, you would be so disappointed!” Oh, she knows me so well!
A few months later she delivered her beautiful daughter, Tia, and to everyone’s surprise Tia was born with Down syndrome! They loved their baby girl but they returned to the geneticists and again went through more testing. And again, the test showed it was not genetically passed on. They were assured if they decided to have another child that baby would not have Down syndrome.
Two years later their handsome son, Tyler, was born and yes, you guessed it, he too has Down syndrome! The Huff family is incredible and I wish you could know them like I do.
It probably will not surprise you to learn that a few years ago they felt inspired to fly to Serbia to adopt their last child, their youngest son, Max, who also has Down syndrome!
Some years ago, we hosted a Winter Wonderland formal and when I saw Tia and Tyler there it melted my heart. But as if that wasn’t bad enough, Tyler, being the perfect gentleman that he is, came over to me, took my hand and said, “May I have this dance?” again those darn pesky tears began to fill my eyes
So next year, when you come to our 25th Annual Sharing Down Syndrome Walk (on Saturday, March 29, 2025) and you see a happy family wearing red ANGELS shirts, look on the back of it and will say, “FOUR WILD ANGELS.” Then you will know you have met my dear friends, the Huff family.
God bless you, dear friends,
With much love,
Gina Johnson
(aka David’s Mom)
