Monday, August 8, 2016

One Last Love Letter...

I’ve sat down to write this blog at least 10 times now. Each draft has landed in the trash bin of my desk top. I’m determined that this will be the one.

As a special needs mother, I used to feel so isolated. I know so many of you can relate. You can have the most incredibly supportive and loving family, yet, you find that you feel so completely and utterly disconnected. Sometimes your family feels it right there with you. Vacations aren’t vacations anymore. Holidays have changed. There are, at times, dark clouds of uncertainty and frustration that can cast an insurmountable shadow over every waking moment, try as you may to smile through it.

One afternoon, my mother, knowing that I was choosing to pursue the legislative battle that was medical cannabis treatment for my daughter, called and asked, “Are you the mom that’s going to be on CBS at 6?” I laughed, confused at the question, and assured her it was not going to be me on the news. But I made sure I tuned in to see who it was. Little did I know, I would never again feel isolated.

There she was, at the beginning of something truly amazing. I was glued to the screen, watching, listening to every word. Louann Speese Stanley told the story of her daughter, Diana, 16 at that time. She had suffered from intractable epilepsy since she was 9 days old. Louann, like so many of us, had seen the CNN documentary, "Weed", which I believe first aired in August of 2013. I immediately found Louann on Facebook. She lived 20 minutes from me. She then added me to an online group of parents who were ready to dive in to politics. For most of us, this was a first, but dive in we did.



Our group grew daily. We were joined by seasoned activists from several other groups. Many of them took us under their wing and were eager to see what would unfold from this rookie group of “pot moms.” Initially many of us simply wanted to get our hands on anything that would keep our children in the land of the living. But very quickly, as many adult patients joined our crusade, it became so very much more. None of us had even realized that in 2009, there was a significant push to further this cause. Many adult patients testified at a House Health Committee hearing for SB1181, Representative Mark Cohen’s medical marijuana bill. Both Cohen, and Senator Daylin Leach introduced bills that year, clearly they were ahead of their time.



Although the stories were compelling and the science present, the bill died in committee at the end of that session, much to the despair of many ill Pennsylvanians who were dialed in long before us. Every once in a while, it hits me. Had those patients really been heard, really been felt for, many of the patients that we advocate for now would never have endured such devastation. So many families would not have had to burry their loved ones. But I remind myself in those moments that none of us would have been brought together had that been the case. That’s how I cope with the heart-sickening feeling that lives were lost that should not have been. Because we wouldn’t have found each other otherwise.



Over the past few years, often over a late night phone call or a tear filled hug at the Capitol, many of us would share that we had all felt that something very mighty brought us together. I remember my sister, Jana, consoling me one day. She said, “There’s a purpose for this, Lolly. God doesn’t make kids get sick. But he sometimes allows people to become ill because this serves a greater purpose.” I have always taken great comfort in that. In the face of tragedy, in the face of illness, this community served a purpose so pure and so beautiful. Together, we have ensured a much brighter future for countless residents of the Commonwealth for years to come. We have given doctors “another weapon for their arsenal,” as our beloved Senator Folmer always says.



Over the past three years, I have fallen madly in love with so many people that I never would have had the chance to meet had my daughter not been sick. She really took one for the team, huh? Not a day goes by that I don’t stop and reflect on the impact this journey has had on each of us. We’ve shared so many emotions from rage to heartache to joy. With each moment, we grew stronger. We gained patience as we gained momentum and we grew wiser as we perfected our strategies. I have never been more proud of any effort, by any group.



But, to get to the point of all of this sappy reminiscing, our cause must continue to evolve. And at this very juncture, it is time for me to take a different turn. As of today, I am making a very difficult choice to resign as team leader of Campaign4Compassion. It’s not because of anything crazy going on. I promise. No drama for these mamas. It’s just time. I promise I’ll never be far away, and I promise at every step I take forward, this community will always be on my mind. And I am truly excited to see the work of C4C continue with the guidance of an amazing team.

So I’ve narrowly avoided crying all over my keyboard while writing this so I’m going to wrap it up. I need to share a few nuggets of advice that have helped me immensely on this journey…

Take no bull. Never. Seriously. Pound down doors, familiarize yourself with “redial”, and keep your finger on the pulse. There will always be an injustice that we need to overcome. Fight. Fight at every waking moment. If you are ever told to “trust the process,” don’t! Don’t trust the process, BE the process! Conversely, there’s never a bad time to write out a thank you card to a legislator that has had your back. Bake a staffer some cookies. Give hugs! Lots and lots of hugs. And when your heart is bursting with love for your fellow man, it will no longer fit in your chest, so you’re going to need to wear it on your sleeve. Don’t be afraid to cry. Don’t be afraid to feel. Be raw. Be real. Be a bad ass. But more important than any of this, be realistic. You can’t always get what you want, but don’t let that stop you from being grateful. “Because you just might find you get what you need”. (Sorry, I can’t say it better than the Rolling Stones.)

With a heart that overflows with love for each of you, Cheers.

-Lolly