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 a very influential man I met eleven years ago and he affirmed my actions to date but admitted that we may be grid-locked in the House without professional lobbying help.

After we hung up, I took a deep breath and I prayed for wisdom, for clarity, for a new idea to move people to support our efforts, because I didn’t know what else to do but seek the One who knows how it will all play out anyway.

I participated in a scheduled (and productive) call with the chair/co-chair of the PA Newborn Screening Advisory Panel this afternoon, and we came up with some action items that may help to move the bill forward. One of the things that the co-chair asked me was about the various caucuses within the legislature and if that might be a road to pursue. I told her I would do some research to see if any of them would likely support HB730 as a group.

While I was researching, I remembered something very important – something I cannot believe I had forgotten: there is a Rare Disease Caucus within the legislature! A group of people who have committed to improving life for those with rare diseases in Pennsylvania, a group of people very likely to support this bill.

I can’t believe I had forgotten about it because Tori and I were there the day it was commissioned. 

It was eleven days before Tori would go to Heaven. I wrote about it here.


Today started with defeat and ended with a renewed passion and hope. It gave me the momentum and direction I needed to continue to push for progress.

And, as of this evening, after just two days we have 4 co-sponsors to our upcoming Senate legislation (plus the author). We’re going to do this.

Thank you, Lord, for continuing to remind me that this is what I’m supposed to be doing. Thank you for never failing to provide wisdom when we ask for it.

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