Silence and Light

With the birth of their first son Conner, Lanya and Todd McKittrick quickly found themselves in the thick of parenting a finicky baby. Conner was a sweet baby boy but became quickly attached to bright colors, big expressive faces, and touch. It wasn't long before they realized something wasn't right-he wasn't reacting to big, startling sounds. Lanya and Todd soon brought him to their pediatrician, who downplayed the issue, but performed tests revealing that Conner was profoundly deaf.

With answers, Lanya and Todd could now pursue solutions. They found their place in the deaf and hard-of-hearing community and found every resource available to raise Conner well, giving him every advantage possible. After the birth of their second boy, Cole, they began to realize that Conner's development was not lining up with milestones listed in their baby books. Particularly concerning were his issues with balance-though he was more than two years old, he still couldn't walk. Then, to their horror, Conner began experiencing difficulties with his vision, which led to another diagnosis: Usher syndrome. Lanya and Todd were thrust into a swirl of pain and panic, now wrestling with the fact that Conner suffered from a rare disease that causes deafblindness. Already deaf, Conner would certainly go blind.

Lanya and Todd quickly founded Hear See Hope, a foundation committed to education and research with the goal of eradicating Usher syndrome. The foundation grew quickly, amassing over a million dollars to aid in the search for a cure. Over time, Lanya and Todd had two more children, Hunter and Dalton, and forged ahead on the journey to parent through adversity. Although they had undergone IVF to conceive Dalton so they could perform genetic screening of the embryo, Dalton too was diagnosed with Usher syndrome.

In this riveting memoir, Lanya McKittrick shares her journey, from diagnosis to grief and culminating in advocacy and self-discovery. She uncovers important truths about life in the face of rare disease, the unique challenges that come with this rare struggle, and the value of the dogged pursuit of quality care and effective treatments for those she loves most. Readers will learn to see past the pain to get to the positive-to continue to push when it feels like all is lost. Ultimately, readers will gain understanding of the importance of connection, collaboration, and community in the healing journey through rare degenerative disease and beyond.