Even just two weeks ago I was seriously questioning the outcome of SB983. I felt so uncertain after it seemingly became a partisan issue in the Human Services committee, and I was mentally preparing myself for the reality that we may have to start over again with a fourth bill during the next session.
We really did not know what to expect going into the floor vote today. We knew that the proposed amendments had been withdrawn yesterday (which was good), but we still weren’t sure if it would pass on party lines or be bipartisan.
I did not expect it to be UNANIMOUS.
This means that every single legislator in the Pennsylvania General Assembly supported our efforts to make Newborn Screening equal from hospital to hospital and to make Krabbe mandatory.
I told Brennan the other day that God must be setting this up to take all the credit because it has felt like we were living in a movie with all of the drama and unexpected twists and turns. From the delays from DOH earlier this year that set us back, to the unexpected partisanship, to running out of session days, we really did not expect to get this done.
But we did it. He did it. Tori did it. And it only took ten months and four days from introduction to final passage this time.
And because of all of the session delays today, Brennan was home for the vote. That made the waiting worth it.
Though it feels strange to say/type this, I am so proud of my work. I never gave up – though I certainly had my moments in the past four and a half years. I learned everything I could about the process and definitely lobbied this like a true lobbyist. I called hundreds of times, I emailed even more than that. I had in-person meetings (pre-pandemic, of course). I did everything I could think to do to try to move HB1081, HB730, and now SB983 to the finish line (including using the media whenever possible). I learned valuable lessons about partisanship and am forever changed by what I observed.
I built relationships (God definitely led me to the right people) and created an informal “team” of advisors. While it appeared that I was the only one working on this, that’s only because I’m the only one who really could be openly working on it. Everyone else answered my questions, taught me, encouraged me, supported me, and got SB983 to the finish line behind the scenes.
I absolutely would not have accomplished this without my team. And I’m admittedly a bit sad that those days with my team are done.
Jonathan, Greg, Adam, Janelle, John, Rachel, Ashley – THANK YOU. Thank you for hearing my story and deciding that this was worth your time and energy. Thank you for educating me, encouraging me, inspiring me. Thank you for finishing what Hannah’s family started in 2013. Thank you for helping so many families avoid the pain and heartbreak that we endured. I know that so much of what you do is “thankless” and unseen, but you’ve just accomplished something so much greater than any of us. I wish we could celebrate together!
We never did any of this for the accolades. We did this in honor of our precious Tori. Her life will save many lives and that’s an amazing legacy. We couldn’t ask for anything more.
Now we wait for the Governor to sign it, and it will be effective 180 days after that. Unfortunately, I’m not sure they are doing public signings because of COVID, so I likely won’t get to see it signed, but that’s okay. Just knowing that it is finished is enough for this mama’s heart.
And now I’m ready to go back into retirement from lobbying and enjoy this sweet, incredible victory.