Dearest Sharing Families,

Last week, one of our sons and his family (Luke, Annie, Finley, Shep, and Campbell) surprised us by driving down from Utah to spend their Spring Break with us. It was wonderful to have them here. We are a totally normal family as you can tell by our picture! 😊 

We love spending time with them, but one night their little daughter, Campbell, had a double ear infection and was in so much pain. They ended up having to take her to the Emergency Room. 

It had been a tough night and by the time they got home it was well after midnight, and soon we were all asleep. But then at about 2:00 am we were all suddenly awakened by the loudest noise I have ever heard. I jumped out of bed to discover it was our fire alarm going off!  All of Luke’s family came running upstairs, and my grandchildren were understandably terrified. The loud noise was almost unbearable.  I called 911, and within minutes, the Gilbert firefighters were at our door.

They quickly searched the house and determined that there was no fire.  They decided that there was dust in one of the smoke detectors, and soon one firefighter was up on a ladder blowing air into our smoke alarm to clear the dust away.

As they were working, I noticed the woman firefighter in the entryway. I saw that she was looking at a picture I have on the small table.  What caught my eye was the look on her face as she studied the picture. She had the biggest smile on her face.

It was a picture of our son David and his friends when the Hip Hop Homies first began now more than six years ago.

I felt I owed her an explanation.  I told her that all the kids in the picture have Down syndrome. I said that Curt and I have seven, now grown, children, but that our fifth child was born with and diagnosed with Down syndrome. I felt like my world had come shattering down around me.  I told her that was why I started my Sharing Down Syndrome non-profit.  I told her I never wanted another mother (or father) to feel as heartbroken as I felt when my David was born.

I told her I have the greatest job in the whole wide world. I get to go visit new parents. I understand their initial sadness, but I have had 40 years to see the incredible impact our kids with Down syndrome have on us and on our world.

I explained that the name of their dance troupe was “Hip Hop Homies with Extra Chromies.”  When the other firefighters heard me say that, they all smiled and laughed out loud

The firefighter I was talking to looked at the picture again and pointed to one young man (the boy in the middle) and said, “Is his name Chase?” 

I about fell over! I said yes it was.  I was so taken aback! I could not believe she knew Chase! I said, “Yes, it is!” 

I told her I met Chase when he was a newborn. I began to tell her all about the amazing young man Chase is. 

I said that he swam for all four years on his high school swim team, and he still swims competitively.  I said he has an older sister, McKenzie, and a younger sister, Reagan, who are swimmers as well and even earned scholarships from swimming to attend college. I told her that Chase just found out he had been selected to swim for the National Down Syndrome Special Olympics swim team to compete for this year. I found out her name is Haley Gordon. She told me before she became a firefighter, she was Chase and Reagan’s competitive swim coach.  She coached them from 2014 to 2017!

I could feel that this amazing woman had such a good heart. She spoke with such love and genuine admiration for Chase and his family.

I learned that she grew up swimming competitively as well. I could not resist hugging her. She talked about how much she thought of Chase. She told me he could hold his breath underwater longer than anyone she knew.  She said he would go down to the bottom of the pool and just lay there.  Soon she would go over to make sure he was doing okay, and he would be there lying at the bottom of the pool with his eyes wide open.  When he saw her, he would smile and wave. Yep, that sounds like Chase! 

At each Hip Hop performance, Carol takes time to have the kids talk about themselves.  She shared that one time when she was talking to him over FaceTime, she could see his bedroom wall. On that wall was a display where he hung all the metals he had won in competitions over the years.  Carol loves all our kids, but she said what stood out to her was what it said on that display. On it were written the words, “NEVER GIVE UP!” 

After the firefighters left, I lay in my bed thinking about all that had happened that night.  

Even though at first the experience of being afraid, even for a small moment in time that my house might be on fire scared me, the overwhelming feeling I gained that night was of gratitude. 

The firefighter I was speaking with told me that she swam competitively since she was a child and when she moved here, that was why she started coaching kids.

As we were getting ready to say our goodbyes, she said something that brought tears to this old mother’s eyes.  I made her repeat it because her words felt so powerful to me.  And so truthful. Haley understands our children better than most people.  I took a video clip of it, so I hope we can add it to this newsletter. This is what she said, “The lens in which you see life, I think more people should do.”

Well, thanks for letting me share a little bit of my life with you. The Hip Hop Homies will perform at our Sharing Walk. Come to meet them!

I cannot wait to see you all at our Sharing Down Syndrome walk on April 20, 2024, at Tempe, Diablo Stadium. There’s still time to register and create a team in your child’s honor. For this is the day we use to truly CELEBRATE DOWN SYNDROME! 

Remember, the team who raises the most donations will lead our walk around the stadium.  They will also be presented an award on stage with their team.  They will receive an amazing gift basket filled with amazing gifts you will love!  Also, the second and third-place teams will receive a wonderful gift basket. It is your donations that help us provide our parent support programs and always FREE to families!  

Do not forget we also qualify for the Arizona Tax Credit. You can donate up until the day you file your taxes and get 100% tax credit to you. Our QCO code is 20543. (Up to $441 for an individual and up to $841.00 for a couple.) xoxo

My dear friend, Teresa Adair, has come back to work for Sharing, and she oversees this 24th Annual Sharing Down Syndrome Walk. She is making it beyond wonderful! You just wait and see! I cannot wait to see you all there. PS, There is a rumor that Fox News may be there to do a story on our families. 😊 

With so much love,

Gina Johnson

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