Down With the Peth’s

Meet John August. The boy who made me a mama and let our family officially join “The Lucky Few”. For those of you who cannot tell, he has Down Syndrome (AKA Trisomy 21). He sports a full extra copy of his 21st chromosome. Scott and I had a prenatal (before birth) diagnosis after early screening showed “high risk” for trisomy 21. We met with specialists and his growth was followed closely by University of Iowa Children’s Hospital.

His diagnosis was surprising to us. We were young and had no risk factors for genetic abnormalities with our pregnancy. We really were just lucky, even if we did not see it that way at first. We did our research and did our best to prepare for our new lives as parents to a child with unknown disabilities.

He was born in July 2019 after we chose to be induced. An entire team of medical specialists were present, ready for whatever was to come. John was born with AVSD (AV canal defect), a congenital heart defect that made him be born “blue”. He needed some extra help medically but did really well. He would later have open heart surgery to repair his defect at 4 months old on Halloween. We literally had to wait for him to go into heart failure and grow enough to make surgery more successful. He was hospitalized several times preparing for that day. He also spent his first 25 days in the NICU as he was born with a duodenal atresia (GI congenital defect) and had surgery for that the day after he was born.

John is now thriving. He is spunky, sassy, wild, loving and full of joy. He keeps us on our toes. He is attending 3-year-old preschool and has amazing play skills. He tries to keep up with his neurotypical peers. His biggest struggle is communication. He has speech delay but definitely is able to let us know how he is feeling and mostly what he wants. He uses some sign language and can answer “yes or no” questions.

John is a blessing. He teaches us to enjoy the little things. I am excited to see what he will teach us as time goes on, and what he can teach others as well.