It was early, the sun yet to peak over the horizon. The air was cool and crisp and there was the light aroma of the leaves that scattered the ground. I was working my way through our school day routine on autopilot. Wake Finley, lift her out of bed, change her, dress her, brush her teeth, fix her hair, put on her glasses, put on her shoes, lift her into her wheelchair, feed her breakfast, wheel her out the door and get her on the bus. But somewhere between lifting Finley out of bed and getting her dressed, my five-year-old daughter had a thought that she proudly shared with me. …

The time was around one in the afternoon. I answered a call from a number I didn’t recognize. It was the genetics clinic. And even though they had told us it would take 4-6 weeks, they had gotten results on Finley’s genetic testing. They found a small deletion on her 18th chromosome that affected the TCF4 gene. That finding was consistent with Pitt Hopkins Syndrome. “Ok. So what does that mean for her?” ” Well first let me tell you that kids with this syndrome have a normal life expectancy. But…children will exhibit significant developmental and cognitive delay. It is unknown whether she will be able to walk in her…

When I dream, I hear your voice. The sweet song that will be snatched away by the light of day and eyes awake. You tell me stories of your life, a life that I have never known and will never know outside of eyes closed. You sing tenderly to me as we walk hand in hand. Your body moves like velvet falling over a keyboard. Smooth. Gentle. Quiet. You point to fascinations and exclaim delight. All the words that you require are no longer lost. You are no longer lost. You are freed. We are freed. There are no shackles, no barriers to break. There is just you and me,…

Getting a life altering diagnosis for you child is one of the most heart wrenching experiences a parent can endure. Our family was lucky in some ways for receiving our diagnosis when Finley was still a baby. We didn’t have to spend years searching for answers, doing test after test and appointment after appointment, wondering what the future would like, or if she would have a future at all. In other ways we weren’t so lucky. We were deprived some of that ignorant bliss, the time when we believed she would catch up with her peers and we could just enjoy her. We were in a fog of grief, denial, and…

Five years ago we bought this house with the dream that it would be our forever home. A place with enough space for our family to grow and stretch out. We had hopes of our daughters running and playing in the backyard. We imagined teaching Presley and Finley and our future Hadley to ride their bikes in the cul de sac. Finley would run down the stairs to tattle on her older sister. The girls would congregate around the table to drink hot chocolate after an afternoon of building snowmen. As they got older, they would watch movies in the basement with their friends and have bonfires in the backyard. …