My wife, K’Anna, and I are parents to Bren, Asher and Ella. Asher has Down syndrome, a diagnosis that has changed how we see special needs. That diagnosis has done nothing to slow down our little boy. As I write this, he is dancing to the music from Moana with his sister’s shoes on his head and trying to sword fight the bird on there with a light saber. He has definitely changed the way we look at our lives.
Early in the pregnancy, we were told about markers indicating a possible DS diagnosis. The OB doctor noticed shorter proximal long bones and a calcium deposit on his heart during a routine sonogram. After that, we did numerous sonograms with multiple specialists, and the experts told us that we had around a 1 in 8 chance of our child being born with Trisomy 21. We were worried and scared, but we thought that 12.5% was a really good chance of “beating the odds.” We prayed and had everyone around us praying that Asher would be born as a “typical” child. I wanted Asher to be a normal son. I personally prayed for him to be born with no health issues. Even though I prayed for him to have no issues, I prayed for God’s will to be the outcome above all else. We had no idea what we would do with a child with special needs or the magnitude of the blessing God would give us when he was born.
He is all boy and everything you would expect from a boy.
When Asher and his twin sister, Ella, were born, they spent three weeks in the NICU. After they were stable, we wanted to know if Asher had “Downs.” The doctor told us that it appeared he did. We still weren’t convinced, and the staff did a chromosomal test for confirmation. One of the nurses that worked in the NICU came into the room to tell us that everything would be okay and she had a son with Down syndrome. We were appreciative, but it still hadn’t “registered” that we had a child with special needs. So, we kind of rejected anything she said. Then, the doctors told us that he would need open-heart surgery for an AV Canal defect. We were floored, but the NICU staff at River Oaks Hospital did a great job at getting us the resources we needed for our journey.
After we left the hospital, my wife and the nurse became friends. She told us about The Little Lighthouse, and the Central MS Down Syndrome Society. My wife did an incredible job to get him on the list for “The Lighthouse,” becoming involved in the CMDSS and beginning early intervention therapy. Also, we began preparing for his open-heart surgery. During a meeting with the surgeon, he told us that he had been praying about this case from the time he got it. He told us that he was very confident in his skills, but he was not God. It was another time that we would have to wholly trust in the Lord with the outcome of our lives. All of the glory is to God, the surgery was a complete success. After the surgery, Asher grew stronger and stronger, and his personality began to blossom into the child we know today.
He started school at The Little Lighthouse in 2015. Since then, he has become a social butterfly. The teachers and therapists at the school have done an awesome job at loving him like their own. They go to great lengths to teach and love him, especially when he is in full “Asher mode.” Between the therapists at “The Lighthouse,” and his other therapists, he has made incredible strides in his physical, speech and occupational skills. Asher comes home daily showing us his new signs and songs that he learned at school. He’s accomplishing many milestones that are largely in part to our family at The Little Lighthouse.
The only limitations he has on his life are the ones that we place on him.
Asher is the greatest blessing that we wouldn’t have asked for, but we wouldn’t change him for the world. His vibrant personality has changed our lives and the lives of many around him in just a few short years. He loves to love people and puts a smile on everyone’s face with his enthusiasm. Likewise, he loves to worship the Lord, dance anytime a beat drops, and if he gets a platform (an open spot in circle time or an opportunity), he’ll preach with the best of them. His favorite pastimes are eating dirt, running from us and knocking the folded clothes off of the table. He is all boy and everything you would expect from a boy. He’s my little buddy. I look forward to the things we get to do in the future (hunting, walking through the woods, playing on the tractor, sports, anything he wants to do.) The only limitations he has on his life are the ones that we place on him. We are extremely blessed to have been given him as our son.