1p36 Deletion Syndrome, Coping, Faith

Everyday Miracles

For my first post, I’d like to share a brief snapshot from the past year, which explains the name of the blog. Although I’m starting on a high note, and my hope is to keep the overall content ocropped-unknown-7.jpegf the blog positive, please know that I will not white wash anything. Part of my goal in sharing these experiences is to encourage other families that they are not alone. And without honesty,  genuine connections can’t be made. Cheers to being real and looking for the best in every situation!

On July 25, 2016, Maddie was diagnosed with a genetic condition called 1p36, which is a type of chromosome deletion. It’s a fairly rare condition, and was discovered through genetic testing that we underwent after we found that she is Epileptic. She was eight months old, and up to that point we’d had no reason to think that she might have  developmental issues. But with this diagnosis came a long list of predictions for her future. Everything from eyesight and hearing loss, to physical and mental limitations. With one phone call our lives were turned upside down. I felt like I didn’t know my own baby. To say that we were devastated would be an understatement. Continue reading “Everyday Miracles”