Nolan is getting ready to celebrate his 1st birthday. His mom didn’t think she would be able to get pregnant. But she did. This baby was such a gift to his parents. Mom was asked several times if she wanted to have genetic testing. She told the doctor "no." She knew there weren’t any test results that would change her mind about completing her pregnancy.
This baby was a gift to his parents, grandparents, and the whole family.
He got his diagnosis at 5 days old. He didn’t have the typical markers for Down Syndrome (DS). In fact, a nurse who has a son with DS was the first to notice. He has Hirschsprung’s Disease, which is sometimes associated with DS. A large part of his colon had to be removed.
So far, he is doing well with no complications. He has a smile that can brighten a rainy day. He’s the delight of his family. He’ll never want for love. He’s making progress at his own pace, learning new things every day.
Now the fun begins. Well, the challenges begin. The family is learning about early-childhood education services, the program that provides in-home services for Nolan’s therapies. They started navigating the medical maze early because Nolan may have ongoing medical needs. His mom is leaving her job as a teacher to become a stay-at-home mom.
There are concerns about finding health insurance once their COBRA insurance runs out. The only specialists within several hundred miles of their home don’t take the only replacement insurance the family has found.
Nolan and his family are on an exciting journey. They look forward to all the challenges they will face. Nolan is learning and growing. He’s taking his own path and his own timeline, and his parents think that’s just fine. They look at Nolan and only see the miracle of an amazing gift.
They will meet challenges as they come and look forward to the future as they take this journey as a family.
There is helpful information about health care and waiver options in the Insurance, and Financial Help pages.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.