Ever since I left the incredible NorthEast PANS/PANDAS Conference (http://nepandasparents.com/home.html) I have been sobbing. From the moment I stepped foot in the airport. From the moment I felt even slightly separated from all of my sisters and brothers who gathered from around the universe to meet on all things PANS/PANDAS.
What is up with these tears?? With this lump in my throat and chest??
Am I crying with sheer exhaustion from simply channeling all of the incredibly intense energy that comes from a gathering of hundreds of PANDAS moms (and a very few dads) in a single room, sharing our journeys? How that hotel's roof didn't blow off, is beyond me.
Am I crying with heartbreak for all the suffering children and families that are stretched beyond capacity in so many dimensions that all i wanted to do all weekend is meet every single person and hold them and see them and be seen by them? to remind them (and myself) that we are not only in this together, but we are, after all, mere mortals on this supernatural road??
Or am I crying for myself and my own child's rough road in PANDAS land?
Am I crying with relief because there were over 100 providers at this conference, innovators and thinkers and researchers and ground floor therapy givers that can take this conversation out to new places and children and possibilities??
And presenters with their unique perspectives and also sometimes limited perspectives as they present their many possible PANDAS algorithms and try to make definitive connections that I'm afraid are still missing something and they might not realize it and then they publish something important and its wrong??????? Or right????
Am I crying because it was just so rich and incredible to rub elbows and share a moment in time with some of the most courageous and persistent and intuitive people in the world, and then there I stood in the airport and I remembered that once again, its just me??
Am I crying because my PTSD got so reactivated with pain and then, with hope? that for a moment I could accept the possibility of a future that included a real life, and then....what? What are the chances of that, really?
I reached out to two other PANDAS moms that were on their way home from the conference as well, and I was somewhat relieved to hear that they also found themselves feeling shockingly alone, and down, in that same moment. So at least I knew I wasn't just losing my mind. Our collective PTSD was simply resonating through the airwaves to an overwhelming extent. We are all feeling it.
But you know, I am sure that while I am broken, while my heart is in millions of pieces, that the future looks bright for PANDS/PANS children. But how about for me, Amy, the person? Gosh, I haven't thought about her in a very long time.
This weekend really had me wondering, what is actually left of me? Beyond PANDAS, beyond bankruptcy, beyond those years of fear, and lost dreams, and broken marriage, and isolation? As a human, as a woman?
Is there any way to take back those 7 lost years? SEVEN YEARS of my life, of my child's life, gone. No trips to the Grand Canyon. No ski holidays in Utah or Tahoe. No fun moments in the family fold. No, for us, our life was more like a trip into exile. Not really living, not real life, just time going to by, trying to get well, to keep it together. Solitary and nervewracking.
Not only is he now 17 and please please God in continued health, ready and able to embark on his own greater journey. But I look in the mirror and I am older as well. This journey has definitely aged me. Although I have to admit, I'm younger now than I was last year, and two years ago, and especially than I was 3 or 4 or 5 or 6 years ago. Because, right now, my son is better. And that, i can also see when i look in the mirror.
Can my heart heal? That's like asking, is there really a God? I have no idea. I'm so afraid that even a little crack in the armor of my heart will send me to my knees. I'm so afraid to feel the depths of what's in there, although I do believe, that in the long run, the only way through the kind of PTSD that we moms have is to do just that. In our own time, and maybe with a little help and alot of loving support, to reopen our hearts. And I'm certain that in addition to all the pain in there, there is also alot of love and joy and courage and the memory of goodness and happiness, and hope. Beauty. Self-esteem. And our trusting place. Our humanity. Tucked away in a safe place for some future moment.
The future looks bright for PANS/PANDAS children.
Let's cling to that.
Let's support the people who are in the position to make that happen.
Pandas NETWORK.org - omg Diana and Vickie, and the Board. www.pandasnetwork.org.
This organization is the hub of the dialogue, the connections and the collective voice of parents.
The presenters and PANDAS providers - all of you, out there willing to sacrifice your reputation for doing the right thing. I know what that's like.
Lance's Fund - link on this page. All donations go towards treatment (IVIg) and testing (Cunningham Panel) for PANS/PANDAS children at Hill Park Medical Center.
We need to think about legislative organizing, to find the energy and the tools to articulate the needs of our children in such a way that the difference gets made through policies from the top-down.
And to heal our collective PTSD, which for the time being, serves by keeping us just disconnected enough to function every day.
So much to say. From total exhaustion, I send my love and strongest possible regards and support to all things PANDAS in the world.
Thank you to whomever may be reading this blog.
Love Amy
