New Gear

Lydia has some new gear to help make her life easier and to make us feel like we are able to do something for her. She has a new chair that reclines with… Continue reading

4 – Undiagnosed

Lydia has many specialists looking into her case but no conclusive diagnosis as of yet. The doctors appear confident it is some form of genetic disorder and agree that her case is severe… Continue reading


The one relief/joy/release I have is that she smiles. It lets me know she’s in there, and that she’s feeling fine. Luckily she started smiling at around three months, right at the peak… Continue reading

Our girl

3 – Shock

Mark was spending the night away for a work meeting. I called him and said, “She has an EEG in the morning. This is the beginning of finding out what’s going on with… Continue reading