”NEVER GIVE UP!”
Dear Sharing Families,
Every Thanksgiving, I think about all the blessings of my life. I’ve been married to a really good guy (Curt Johnson) for the past 49 years, and God has blessed us with seven wonderful kids and thirteen grandkids.
When our David came along, in my sadness of hearing his diagnosis, I thought there was a rule in the unwritten handbook for parents of children with disabilities that said I would never smile or laugh again.
Boy, was I wrong! Looking back on all the joy and craziness he’s brought to us as a family, I sometimes wonder where we would be without him. And recently, when our son, Seth, sent me this quote, ” HAVING A WEIRD MOM BUILDS CHARACTER. (trust me, I know)” made me laugh out loud, knowing I have done a good job teaching my children to always tell the truth! ?
I’m thankful for what I’ve learned from the families I’ve met along the way in my journey of being David’s Mom.
I met Chase Baird and his parents, Tom and Sharon, almost 21 years ago when he was a new baby. Over the years, they have become not only dear friends, but they have helped me more than they know. Tom served on my board of directors for years, and for the last seven of his commitment, he served as my board chair. He was always so good to support whatever I wanted to do for our Sharing families.
I have loved watching Chase and others grow up to be incredible people. I’ve loved watching their parents grow as well as they became the voice speaking up for their children’s rights.
Chase graduated from high school alongside his typical peers. He also was on the school’s swim team for all four years, and to this day, he still competes in competitive swimming.
After high school, Chase and his best friend, Matthew Adams, attended and then graduated from Grand Canyon University in their Lopes program. You can find them every morning working out at the gym, and they’ve got the six-pack to prove it. ?
They both work as greeters for the Phoenix Suns and the Phoenix Coyotes. The best part is seeing how excited the fans get as greeters, and even more excited when they perform with the Hip Hop Homies at halftime shows. They’ve done that for the Phoenix Suns, Phoenix Mercury, and Special Olympics.
My friend Carol Tingey is a unique person. She sees in our kids in a way the world does not. She loves them with all her heart. But she also lets them see the strengths each one of them possesses.
She said she was talking with Chase one night on Facetime and noticed just behind him on the wall was a display of all of the medals he had won over the years. She loved seeing the medals, knowing they represented a lot of hard work on his part, but it was the quote above the medals that touched her even more. It said simply, “NEVER GIVE UP.”
She said that is a beautiful message for Chase to think about every morning, but she added that it is something we, as parents, should think about as well.
I know as David’s mom, I sometimes just know the best thing to do for my son, but other times, I feel unsure of the path I should take. It feels as if I am flying on a wing and a prayer. Her words remind me that even if I don’t have all the answers, I must Never Give Up as well.
Last month, my dear coworker, Reyna Melendez, thought of a great way to Celebrate Down Syndrome Month. She suggested we have Ezra, the cute son of Chelsea and Taylor Cotter, hand out the superhero gift boxes his parents had donated a month before.
That day was so much fun, but to me, the best part was Reyna did not tell Ezra that she had also invited his favorite superhero, Spiderman, to help him. ?️
There is an innocence and a type of magic within our children. I wish you could have been there to see Ezra’s reaction to seeing Spiderman. Just to be sure, he went over and gently touched Spiderman’s eyes, ears, neck, chin, face, and mouth…just to be sure it was the real Spiderman. Luckily, he was. (see video clip)
In 1989, a few years after we had moved to Arizona, I was invited along with some other parents of children with disabilities and some other medical professionals to hear a presentation where scientists were going to inform us about their upcoming “Human Genome Project.”
The purpose of that gathering was to help us understand how important this project was, and they wanted the public’s support.
As they spoke, they explained when completed, if it was successful, this new technology could help detect diseases, so patients could be offered appropriate treatments. When they said they thought one day it might be able to cure things like cancer, that sounded amazing.
I knew a little boy who had cystic fibrosis and another Sharing toddler who was fighting leukemia. (3% of our kids can get that.) I also knew a sweet little 11-year-old boy who was one of my Sharing friends. He passed away because though he had type one diabetes, he was asymptomatic, so his parents didn’t even know he had it until he passed away.
The cost to the public was mind-boggling. They thought it would cost 5 Billion dollars to achieve their goal. Ultimately, it ended up costing only 2.1 Billion, but still, that’s a lot of money.
As I thought about all we’d been told, I thought if this technology could save children’s lives, I would love it. But a sinking feeling came to my stomach. I thought it might also be used for earlier detection of disabilities like Down syndrome, and due to that, more babies would be aborted. Sadly, that became a reality.
As I thought about all we’d been told, I thought if this technology could save children’s lives, I would love it. But a sinking feeling came to my stomach. I thought it might also be used for earlier detection of disabilities like Down syndrome, and due to that, more babies would be aborted. Sadly, that became a reality.
When it was my turn to go up to the microphone to voice my concerns, I did. They listened to my worries but said nothing. Then, the high cost of doing this began a heated discussion.
But then, out of the blue, an OB who was not sitting far from me said in a loud voice, “Who cares how much it costs, as long as we eliminate ALL disabilities from our world?!” Hearing her words made me hold my breath. I couldn’t believe anyone, especially someone who delivers babies, could ever say anything so awful. I was speechless.
E
ight years later, my dear friend Lisa Case (proud mom of Andrew) told me about her experience with the geneticist she’d been referred to.
She was standing in the room waiting for the geneticist to come in. She stood there holding her four-month-old Andrew in her arms when he entered. He didn’t even say hello when he looked at Andrew and said, “If you had come to us sooner, we could have taken care of this whole problem.” I can only imagine how wounded her heart had to feel to hear his cruel remark. I wish I knew who that Phoenix geneticist was. I wish he could meet Andrew and his family today. If he did, I think he would be ashamed of what he said.
On October 24, 2023, Dr. Katherine Hunt Brendish, from Mayo Clinic, invited me and some friends to share their experiences with her genetic counseling students.
Holly Montgomery, the mother of three small boys, spoke first. Her son Elijah is two. She shared what it was like bringing her newborn home and having to learn how to insert his G-tube.
She talked about the heart surgery he had as a five-month-old. She was grateful for the way she had told of her prenatal diagnosis. She praised the therapists he’d been given.
Next was Eric Gardner, who talked about his life, and it was darling, and the students loved him. He told of traveling to Israel, Costa Rica, California, and many other places. He told of the many cruises he’s been on. He talked about working for 21 years at Fry’s. He has Mosiac Down syndrome and can express himself well.
Carol Tingey shared such powerful insights about what she feels for her many friends who have Down syndrome. She told of meeting Chad Rades, whom she affectionately calls “Chaddie Boy” when they were 15.
She was on the student council when a new teacher came and said they were trying a pilot program introducing students with disabilities into the school. That teacher said if they wanted to come to meet them or help in the classroom, they were welcome. Carol went down thinking she could help and serve them. Tears came to her eyes as she said when she walked into that classroom, she realized it was she who was helped and served.”
Although some of those friends are now gone, she still is close to those who are left now 40 years later. Chaddie Boy and Kelly were the best men at her wedding.
She spoke about Hitler wanting to create the perfect race. She asked, “Who gets to decide whose life is worth living?” She created the Hip Hop Homies so others could see the worth of a soul. If you want to know more or donate, just go to @TheHipHopHomies.
Shawnie spoke about when she and Kevin were told their firstborn son, Braxton, not only did he have Down syndrome but he was born without his esophagus being connected. But, being a nurse, Shawnie didn’t miss a beat. At one new parent gathering at my home, just as easily as you or I might wipe a drop of milk from a baby’s face, she sat suctioning her baby boy as she talked with us. He passed at 13 months when he passed away. He would have turned 23 on this coming December 6th.
Shawnie and Kevin loved each other, and after speaking to geneticists, they were told the odds of having a second baby with Down syndrome were 1 in 100. So imagine their surprise when their daughter Tia (21) was born! ?
They loved her, but after going through more genetic testing, they were told they were not carriers (non-disjunction). They would not have a third baby with DS. Drum roll, please…and yes, you guessed it, Tyler (19) made his entrance.
A few years later, Shawnie felt a prompting that they should adopt, so they flew to Serbia to adopt their youngest son, Max. ❤️ On Christmas day, Max will turn 17.
Shawnie said some things that made us fight back the tears but also said things that made us all bust up laughing. Tyler is very articulate, and as she was telling the story of him insisting that he has a house full of friends who are always there, he interrupted her, telling her they are real. Shawnie explained that those are just “imaginary friends” and are not real.
It was then that the conversation turned into some playful banter as Tyler insisted his friends were real. Finally, in exasperation, Shawnie said, “Tyler, if your friends are real, then why can’t I see them?!” Without missing a beat and with a twinkle in his eye, he smiled and replied, “They don’t like you, so that’s why they don’t let you see them!” ?
We laughed even more when Shawnie confessed her only worry is that what if one day she goes to heaven and meets all of his friends? She said she would then have to apologize after realizing they were real after all.?
Tyler has another unique gift. If you tell him your birthday, he can tell you immediately which famous person or movie star shares your birthday. I learned mine is Elvis Presley.
Shawnie joked with us that she thinks the ringtone on her phone should be that sound you think of when you think of a three-ring circus because that’s what her life is. ?
Barb Wilkins spoke about what it was like to have Eric 53 years ago. She talked about the joys and unique challenges she faces having a highly intelligent son who has Mosaic Down syndrome, as she tries to navigate for what he wants and also what is possible.
It can feel harder when what he wants, to move out, be married, and have a family, are just not a possibility right now.
So thank you, dear friends, for always holding and for remembering we must Never Give Up. And for knowing that our children have the gift to teach our world what it truly means to love unconditionally.
With much love, David’s Mom
“Embrace every new day with gratitude, hope, and love. “~Lailah Gifty Akita
