(NEW YORK) — An Illinois mom is opening up about the moment she found out her son had Down syndrome, a pivotal turning point that she said has brought more purpose and joy to her life and family.
Approximately 6,000 babies born in the U.S. each year have Down syndrome, according to the Centers for Disease Control and Prevention, and Monday marked World Down Syndrome Day, an initiative that aims to raise awareness about the genetic condition.
For Kati Martinez of Aurora, Illinois, she celebrated March 21 with her son, Micah, who has an extra Trisomy 21 chromosome.
She didn’t learn he had Down syndrome until after she gave birth to him on Oct. 21, 2019, and she decided to share the personal moment she and her husband, Abe Martinez, discovered Micah’s diagnosis in an effort to raise more awareness.
Martinez, 29, shared a video clip inside the hospital operating room on Instagram and TikTok that shows her husband breaking the news to her.
“My first reaction was, ‘What? Like, there’s no way because nothing was out of the ordinary. They would have probably seen that in ultrasounds,'” Martinez recalled in an interview with ABC News’ Good Morning America.
“He noticed, because Micah, he was so swollen, because from birth — the features of Down syndrome are more accentuated, like the almond-shaped eyes, the no nose bridge, they have a neck fold — so things like that were just kind of more accentuated, and Abe noticed right away,” she said.
A Down syndrome diagnosis may sound devastating or scary for some at first, but after the initial shock, Martinez said she felt calm.
“The nurse kind of nodded and confirmed that she also agreed that he looked like he had Down syndrome. And then I was just kind of quiet just waiting for them to bring me him, and Abe was quiet as well. And then when he came over, he was just like, I don’t even know the words that he said, but I just remember telling him, ‘He’s gonna be fine. It’s gonna be OK,'” Martinez continued.
Martinez, a former special education teacher, is now a Down syndrome advocate.
“I think when I became Micah’s mom, I became an advocate,” she reflected.
“I just chose to share those clips because I thought it was helpful and I thought there’s a lot of people probably going through the same thing that we did,” Martinez explained.
“And in that video, I just said, ‘Your feelings are valid,’ because I don’t know if it could really be shown in like a 30-second clip, but we had an array of emotions. It was like, surprise, confusion, happiness, peace, but you know, like sadness for him also, because we knew he had a long journey ahead of him,” she said.
But despite the lifelong journey ahead for Micah, Martinez said she and her husband are excited for their son, who is also now an older brother to 8-month-old Mackenzie.
“His outlook looks great. We expect him to do everything that our daughter would do. Like, we are not gonna treat him differently,” Martinez said. “We’re definitely not going to ignore that he has Down syndrome, and we’re going to celebrate that, but we expect the same things from him that we would expect from Mackenzie. We expect him to go to school and to learn, to do his best and we expect him to go to college and to get a career and to work for a living.”
Micah, now 2, is active and energetic, despite having hypotonia, or low muscle tone, according to his mom.
“He’s a ball of fire. He has a lot of energy. He definitely keeps me on my toes,” Martinez said. “He loves when we dance and sing, and he loves when we read books to him. He says hi to everyone in the grocery store. So he’s very social.”
“Micah brings so much blessing to our life. He’s an integral part of our family. We absolutely love him,” she added.
While sharing Micah’s and their family’s experience has been fulfilling and positive for her, Martinez said she believes more awareness is needed surrounding Down syndrome.
“We don’t get offended by any of [the negative comments] because we understand there’s always going to be people out there that are going to say what they say. And they come from a place of like anger and hate, and so my goal is to spread positivity,” Martinez said.
“Normally I wouldn’t respond to hate comments, but when it’s directed toward a people group and my child, I feel like I need to speak up and say something. So I do say something but in a positive light,” she added.
“He is more alike than different and up until recently, [people with Down syndrome] haven’t had the same opportunities that everyone else do,” she said.
“They have so much more ahead of them, and they have so much more that they can do because of the rights now for them. So I think, just moving forward, we’re just going to get better and we’re going to see more people with Down syndrome be more independent, driving, going to work, that kind of thing, things that you maybe wouldn’t have thought earlier,” she said.
Martinez said she’s still learning herself as she follows Micah along his unique journey.
“I underestimate Micah on accident all the time,” she said. “The other day, I bought him a puzzle and I brought it home, and I was second-guessing it because I’m like this puzzle is too complicated for him. And I just kind of had it out, and I emptied out all the puzzle pieces, and he just knew where they went, and he put them all in, and I didn’t even have to teach him that, and I was like, I’ve been holding back.”
“I think society, we have held a lot of people back with Down syndrome because we haven’t given them the opportunity to have an education, to learn how to drive and to have a relationship, get married, and they can do all these things, and we definitely think, ‘I don’t think so because they have Down syndrome.’ And that’s really not the case,” she said.
Martinez added that she has a special message for her son and anyone touched by Down syndrome.
“Micah. I wouldn’t change you for the world. But for you, I will change the world,” she said. “And today we celebrate you. We celebrate every person with Down syndrome.”
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