Thursday, May 21, 2015

WHERE DID I GO?

I've been waiting to post something until I have something worth saying. Each word on this blog is holy and precious and integral to the story and the unfolding of Lance and of myself back into our lives in a post-PANDAS world.

I'm changing. I'm changed. I'm on the threshold of a new life. Its the right time and the right place and the right thing but its scary today.

But before I get into that I all, let me tell you about my son. My son who just completed his freshman of college. My son who is awesome and brilliant and loving and called me adorable the other day.

My son who is HEALTHY. Healthy. And his health continues to improve.

Two nights ago he told me HE NEVER EVEN THINKS ABOUT HAVING TICS ANYMORE. Shocking. He no longer takes anti-inflammatory herbs at bedtime, just in case, or feels the need to pop a few ibuprofen from the massive bottle he carried around in his back pack for years - JUST in case a tic MIGHT come. He's off of melatonin after all these years, for the most part. He goes to sleep like a normal person, now, at 19, nine years after the big PANDAS break, after 7 unbelievably sleepless exhausting years, he goes to sleep like a normal person, without wondering if the tics will come and torture him and drive him crazy before the morning comes.

My son who is HEALTHY. How about that? Believe me I say this with profound awe and humility and daily gratitude.

Every single challenge he has had this year, however big or small, I am aware of the grace of having a normal child with Normal Kid Problems. What a completely different existence, just to have Normal Kid Problems.

But when will i declare him healed? When will I stop watching watching watching, wondering and thinking about his tics? Someone just asked me this the other night. The answer is, I don't know. How can any of us know? If you ask me I will tell you, I see him as healed. All the evidence is there. But what does life look like for healthy post-PANDAS 19 year olds? 29 year olds? Will I ever not even think about PANDAS for a single day? The way he has stopped worrying about PANDAS, and stopped worrying that the tics are coming back, tonight?

I just don't know. I don't know, but I'm willing. That much, I can say.

Its hard to believe that just one year ago, exactly, last Memorial Day weekend, I had my first PTSD panic attack. (See I'm Coming Out, Part I, II and III, June 2014). Now, one year later, I am well. I am GOOD. I am evolving. And although I will never be the same - my innocence was absolutely ripped from me - I am leading with my happiness, and miracles are unfolding for me like crazy, every day.

There is a line from a psalm, I don't know which one it is, but it says something so simple - God, the soul you gave to me is pure. I wasn't sure about that for a long time. Because PANDAS infected me, it infected my soul. It sucked the life out and my faith, right out of my soul, and in its place it planted a zillion filthy black jagged shards of glass. And pus. It left me in a broken bloody heap by the side of the road. But I see and own that I have purged that level of PANDAS from me. At the level of my soul,I am fully restored. I do feel like my connection to the earth and to my God and to my deepest nature are fully realigned. I am so grateful every day. This was not an accident. If you have read these pages, you know my journey. I scraped and clawed my way back from PANDAS hell one day at a time, one hour at a time, and often one minute at a time. I know you have done and are doing the same. I have no doubt that it is our journey, our collective PANDAS journey, that I am living, with its downs and ups. And I am lucky, so lucky and willing to hold a space for YOU to find some healing; to disinfect your fractured purulent PANDAS soul and find your way back to goodness, to purity, to wholeness. When you are lucky enough to get back to having Normal Child Problems.

But tonight I'm scared. I'm scared of all this changing. I'm scared of picking myself up from my little house in this little town, this house that has been my refuge and my hell and my home and my prison. This house that watched our family shatter into pieces. This house that knows the darkest secrets of the darkest nights of PANDAS hell. I'm leaving it. And I'm afraid. And relieved, and interested, and blessed, and insecure, and solid, and successful, and scared. And I'm not invisible. I'm not invisible any more.

At the level of my soul, I am restored. The rest will come.

So, looking ahead, I know that the question of Where Did I Go is not nearly as important as the question Where Am I Going? Where can I go? How can my life look as a healthy, social, balanced person with pure soul? A woman with a healthy child and a second chance? No money, no credit, but a huge heart and relentless dedication to the cause.

More to Come on that one.

Much Love to YOU, And whatever you do...
DO NOT GIVE UP.

NEVER EVER EVER GIVE UP ON YOUR CHILD OR ON YOURSELF.
Amy