I’ve been struggling lately with a strong desire/compulsion to finish things, to have resolution, to have less on my plate. I need to be able to breathe. I need margin. … Continue reading Learning to Live in the Dissonance
Press Release for SB 983
Senator DiSanto’s office issued a press release today about SB 983 – our Senate companion bill to HB 730. We are thankful that he was willing to help us improve … Continue reading Press Release for SB 983
Explaining the Current Newborn Screening System in Pennsylvania
Below is the text of a document I created and have been distributing to legislators to explain (as simply as possible) the way that Newborn Screening works in Pennsylvania currently … Continue reading Explaining the Current Newborn Screening System in Pennsylvania
Unexpected Loss – Kailee Seal
Ever since Tori went to Heaven I have held the belief that, if you are going to lose a child, we had it the “better” way because we had time … Continue reading Unexpected Loss – Kailee Seal
Travel With Toddlers
I knew that this trip to California would be the most challenging yet with our 20-month old twin toddlers, so I scoured the Internet for ideas of how to entertain … Continue reading Travel With Toddlers
Nineteen Months & Twenty-Eight Days
Sometimes I just don’t know what to say. I’ve had nearly twenty months to prepare and yet I’m still not sure what to write. I’ve felt some self-imposed pressure to … Continue reading Nineteen Months & Twenty-Eight Days
From Feelings of Defeat to Knowledge and Hope
I began the day feeling somewhat defeated, feeling as though there is nothing more I can do to help HB730 get to the floor. I had a phone call with … Continue reading From Feelings of Defeat to Knowledge and Hope
