Say hello to my friend, Tyler!

My Dearest Sharing Families,

I don’t feel old, but when I look at these pictures, I must confess I may have changed a bit from the day I met Tyler 18 years ago or when I started this nonprofit over 33 years ago.

September Newsletter Sharing Down Syndrome Arizona

This past June, when I was opening graduations announcements, one hit me powerfully. It was from Tyler Huff, who I’ve known since the day he was born. I don’t know how his 18 years passed by when I wasn’t looking.

September Newsletter Sharing Down Syndrome ArizonaHis parents, Shawnie and Kevin, are dear friends of mine. I met them when their son Braxton was born 25 years before. When Braxton was born with Down syndrome and with his esophagus not connected, he had to go through many surgeries to try to correct it.

Without a doubt, Braxton chose his parents well. Shawnie is a registered nurse and Kevin is a dedicated husband and father who works hard to provide for his family. They were so happy. There was no way they could have known how their story would end. Sadly, when Braxton was 13-months-old, he passed away unexpectedly and it broke all our hearts. I knew he had been sick for about two weeks, but the doctors assured them that he just had the flu and would get better. The morning Shawnie called me to tell me the news, and as soon as I heard her voice, I had a sinking feeling and I knew what she was about to say. (Sniff)

Thankfully, the detectives and police could tell that Kevin and Shawnie had done nothing wrong. They were kind and respectful of them. I asked Shawnie if I could come over and she said yes. When I arrived, Shawnie and I were alone with Braxton in his room. He was still in his crib. He looked so peaceful; it was as if he were just sleeping. I asked Shawnie if I could hold him, she said yes. But when I picked him up, my heart melted with sadness but with gratitude that God allowed them to have Braxton for those 13 months.September Newsletter Sharing Down Syndrome Arizona

The grief they felt was powerful, but they knew two things: that they loved each other and that they always wanted a family. So, they went forward with faith. After going through genetic testing, and being told they were not carriers, they were excited when they found out she was expecting again. To their surprise, little Miss Tia came with Down syndrome, but they fell in love the moment they saw her. After another trip to the genetic counselors for testing, they were again told that would not happen again. That when handsome Tyler decided it was his time to join his family. Talk about winning the lottery!

And just to make their family complete, Shawnie and Kevin felt impressed that they should adopt little Max from Serbia. (And yes, Max also has Down syndrome.) I believe that God sends our children to us, whether we give birth to them or if we are lucky enough to adopt them.

September Newsletter Sharing Down Syndrome ArizonaIn 2018, we hosted a wonderful dance called, “Winter Wonderland Prom.” Tia and Tyler were both there. They were beautiful. As I was watching the magic happen, Tyler, who is taller than I am, walked over to me and reached for my hand. Then so politely he said, “May I have this dance.” Okay, steal my heart all over again. As we danced, he smiled and said, “Gina, I have a big brother in heaven named Braxton. He had Down syndrome, just like me.” Oh my gosh. I remember tying to keep my composer as I told him that I knew his big brother.

A short time after I sent Tyler his graduation card telling him how proud I was of him, I included a picture from when he was little. Days later, a thank-you note came to me from Tyler. He included a picture his mom took of me when I held him on the day he was born. This is what he wrote…

“Thanks for the pictures that you took of me when I was little. I remember when we started having our Sharing Down Syndrome together. Thank you for my graduation gift. I really appreciate it. Love, Tyler”

Yes, I am the lucky one to know these dear children. Dancing with Tyler reminded me…

“The journey between who you once were, and who you are now becoming, is where the dance of life really takes place.”

Love, David’s Mom

September Newsletter Sharing Down Syndrome Arizona September Newsletter Sharing Down Syndrome Arizona

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