Sadie

How did you feel when your child was first diagnosed?

We felt a mix of relief, fear, and uncertainty. It had taken so long to finally get answers about why things were so difficult with Sadie. Receiving a diagnosis brought a sense of clarity and gratitude. It gave us a starting point to move forward. But the same time, it felt like we grieved the loss of the life we had imagined for her. Now we have found peace in accepting and taking things one step at a time. We focus on the joy and light of our cheerful little girl.

What does your KdVS individual love the most?

Books, walks, and swings!!

How does KdVS affect your child?

Hypotonia and physical delay: She has been in Early Childhood Intervention since she was 10 months old because she started to fall behind with milestones. She started army crawling at around 14 months and was a pro by the time she was 18 months. She started to stand up to surfaces and cruise shortly after and then took some of her first steps with a walker came at around 19 months. She uses AFO braces paired with her walker now and walks all over the house. She just turned 2 and we are still trying to help her work on her balance since she has yet to take any meaningful steps without a support. Speech delay: Sadie has never been much of a babbler and early on in speech therapy we began incorporating sign language as a means of communication. She is now 2 years old and has a repertoire of around 40 signs! We focus on repeating the signs along with verbal cues constantly throughout the day. You can tell she is very proud of herself when she successfully communicates her thought to us. Heart defect: Sadie has a very large atrial septal defect. This hasn't caused any issues thankfully, but the cardiologist recommended that we get it taken care of once she turned 2. She is scheduled to have it repaired by way of a ministernotomy when she is 26 months old.

What is the hardest part about being a KdVS parent?

The hardest part is facing the uncertainty of how our child will develop over time. It can also be incredibly isolating, since it is difficult to find others who truly understand what we are going through. On top of that, learning how to connect and communicate with our Kool Kid in meaningful ways takes constant patience, creativity, and love.