If you’re a regular visitor to Beyond The Waiting Room, then you know that October is a very special month for the Flakes family. We support and celebrate Catherine all year-round, but Down Syndrome Awareness Month gives the Down syndrome community a chance to take it to the next level.

This month is all about raising awareness and promoting advocacy for people with Down syndrome, which is why I’m so excited to have Meeka Caldwell share her journey going from a typical mother of five to becoming an author, a speaker and a fierce advocate for her sixth child, Anian, who has Down syndrome.

I hope Meeka and Anian’s story inspires you as much as it did me.

Lillian

Anian is the youngest of six and as rambunctious as any eight-year-old boy can be. Up to this point, Meeka was used to dealing with girls and Anian was a whole new ballgame.

“This is my first boy I’m raising, so all of this is so new. The whole daredevil thing, where he’s going to jump off things. So it leads to quite an adventurous time with us. But he’s wonderful. He’s in third grade. He goes to our neighborhood school. He’s been in school since he was two years old. He just loves basketball, he loves music, he loves people. He’s very inquisitive and if we give his sisters something, he wants every single thing the same.”

With Anian being her fourth pregnancy, Meeka was an expert at doctor’s visits, examinations and routine testing. So, at fifteen weeks after getting some blood work done, she left, expecting the usual results.

“Then they called me and said, ‘We think there’s some markers for Down syndrome.’ I opted to have amniocentesis because I wanted the information, I wanted to know. But I really wasn’t thinking about it like that….that’s it’s going to be yes. I think for me because I had never seen a black child with Down syndrome and it just didn’t pop into my mind. I was thinking it wasn’t possible.”

The amniocentesis confirmed Anian’s diagnosis and the next day Meeka and her husband consulted with a geneticist. They’d scoured the internet to learn more about Down syndrome and searched for a supportive community. They hoped the geneticist could offer some expertise and advice. Their hopes were sadly misplaced.

“They showed me the sonogram and told me, ‘It’s a boy. He has Down syndrome and would you like to terminate the pregnancy?’ I’m thinking I’m coming here to get more information, for them to be a support. I just want to know if he’ll be able to breastfeed. Or if I have to get anything special in my house.

This is my baby, he’s ours.

They didn’t really give that much info. They handed me a pamphlet and it was for resources for locations that terminated up to 26 weeks. They didn’t even speak about his life or challenges or anything. It was just that question. And leaving there, we were in shock.”

With no support from their medical team, Meeka and her husband leaned on their faith. They believed that if they did things on God’s terms, everything would be okay. With that in mind, they prepared for the birth of their baby boy.

And everything did turn out okay. The hole doctors found in Anian’s heart, closed enough before his birth so that it was no longer an issue and Meeka gave birth to a healthy baby boy.

Now, her issue was finding a community.

“When Anian was diagnosed, I was looking for resources and I noticed then that I honestly hadn’t seen a black person with Down syndrome. Then when he was two, we were very active in the community. I remember there were no books. You had a book about a particular disability, but it wasn’t Down syndrome. Or you had a book that could have been about Down syndrome or any other intellectual disability, but the character didn’t look like it. They didn’t have any representation. Then, I had an idea to write a book. And my idea was, ‘It’s just for Anian. So he can see himself in a book.'”

Meeka reached out to a network of authors and connected with a publicist who loved her mission and wanted to help. Together they published Meeka’s first children’s book, A Friend Like Anian. Everyone loved it.

“When I put it out, people were like, ‘Oh my gosh! We were looking for this.’ And I got a lot of opportunities to speak about the book and the representation that’s necessary and to speak about why it’s important in our community.

And then I wrote the second book, The First Day of School, because the first day of school is always a challenge. Anian has to overcome a lot of hurdles before he even gets into the building. So, when he gets there, I want it be somewhere he can learn and wants to come back, but where he’s also included and respected.”

And the books kept coming.

“I don’t know when it’s going to stop, but these aren’t hard to write because they’re his life. The French Fries and Blue, that’s one of Anian’s favorite things. He’s limited verbally, but he communicates well. We would go through the drive-through and ask the girls, ‘Hey, what do you want?’

Anian has emerging language and it comes out at different times because most of the time if he hasn’t said anything, we’re not asking him what he wants. And that was wrong. So, he’s in the backseat and no-one had asked him what he wanted. So he was yelling, ‘Hey, I’m still here.’ I said, ‘I’m sorry, Anian, what would you like?’ And that’s the first time he said French fries and blue.”

Anian’s books and Meeka’s popularity has grown and she’s now branching out into speaking engagements — speaking with doctors, geneticists and special needs caretakers. But A Friend Like Anian will always be her “baby” and she has big dreams for the future of the series.

“I’m hoping to move from awareness to more acceptance and inclusion because we’re here, our babies are here, our loved ones are here. So, now let’s figure out how to include them in everything and truly accept them and truly give them opportunities that they deserve. Hopefully, my book can just be a part of people changing their minds and looking at people with Down syndrome a little bit different. And their kids, especially, too. They can do that together. I hope to share it with anyone who wants to read. It’s always fun seeing kids’ faces and hearing their questions. And it’s also fun seeing Anian see himself in the book.

That’s the best thing.”

Written by: Tamara Devers