The Courage to Feel Better

I just wanted to take a moment to reach out to all the PANDAS/PANS mamas and friends out there.

I am hoping and praying for each of you, that you too, can have a child be well enough to go away to school, or go to school, or have a dream that they can live into. And that you can live into, your own dreams, again.

I want that for each and every child and family struggling with PANDAS/PANS and I will never ever give up on treating any child, or reaching out to a mom that feels crazy and isolated, or teaching a provider how to treat, or wracking my brain to figure out the next steps. Clearly it is the work I have been made for and I am in it for the long haul.

And while I hold out tremendous hope for my child, and for Our Children - well, its not that I don't have hope somewhere for myself, but there is something wrong or let's put it this way - something I have yet to recover of myself from the damaged sustained over the years of our PANDAS journey.

PANDAS did something to me I haven't fully figured out but I will. There is still a particular vulnerability around feeling abandoned that blinds me in moments to say or do things that are not right, they are not me. let me qualify that - they are not the normal me, the right me. They are a weird aspect now of me, an odd damaged part of me, that simply feels abandoned, incredibly judged and ostracized and I can't explain it more than that. But I will. I think there is something that still needs to be revealed, that I can own about it so I can free myself of it.

The Part of me that is a PANDAS victim - it has to go. I have to find all the pieces of myself that were... I don't know, locked up? Damaged? Whatever it is and pull it back and find my power again in there. I don't know how else to say it. I don't know that its PTSD still but maybe it is. I don't know if I am permanently damaged in this way. if i am, well, I am. It will make the rest of my life hard, and loveless. I just don't know.

Its not like, when PANDAS happened, my life was a blank slate. By the time someone is 50, there is no way we have not been heart broken, raked over, had our share of drama, wrestled with the ups and downs and the meaning of life. Otherwise we simply have not lived. So I must say that the damage of PANDAS occurred upon whatever i already had going on.

Abandonment? Well, that was an issue for me since i was a little girl, and i had good reason for it. Over my life, with alot of work, i thought i had worked that out. But the massive experience of abandonment and isolation that comes with PANDAS territory, it must have triggered some old karmic or psychological or damaged part of me, and that is the piece that has yet to come back, the part where I see and accept the love and the friendship that is in front of me. what is that? why do I get into such small spaces and lose perspective like that, and feel compelled to communicate or take action from those places? how can i be so blinded? what happened to me?

Well, as a well-intentioned, intelligent, relatively evolved person with a big heart and a commitment to live life on the high road, I have to believe that this piece of me can even ever be sorted out, or healed, or understood in a way that gives me power back over it. i can only pray and hope and work towards this end, where healing happens and i am again - in my own unique way - in the experience of belonging to the human race. and that i don't have to hurt anyone, or anyone else, in the process. and anyone i have hurt, by not seeing and accepting your love and friendship at face value, I am sorry.

And meanwhile, one thing I have learned in this journey is that revelling in the bad feelings helps nothing. It only makes my thinking worse, less accurate, and less reality based. It takes courage to feel better. It takes courage to inspire myself to lift my energy.

So, I'm sharing with you a fun way I've recently been keeping myself inspired, in a moment where I feel the need to lift it up. Its so important to do whatever it takes, no matter how bad you feel - find a way to keep your spirits lifted! Your depression and isolation and fatigue are so understandable. But remember that they do nothing to help your situation or your child, or your marriage or anything else. So, if you possibly could muster up the courage and the energy it takes, to just make yourself feel better for one moment, the next moment will be better, too. Never ever give up on yourself, ever, no matter how hard it is right now, you can and will and have the right to feel better.

Need some help to lift your spirits? Click on the link below and turn up the volume:

That's Life!

In other words:
We're all up, we're all down,
and regardless of what's come before
I can be grateful for this one moment, in the Present
with its endless supply of new opportunities for healing and inspiration
and for the courage to begin again
- Because That's Life.

Any PANDAS mama's anthem. I dance around my kitchen to this song.

And OK, because I know how hard it is, I'm going to share 2 more very personal links I have treasured over the years that never fail to get me to smile and open my heart - Lance would be like, oh no are you watching those videos again?? and I would just nod my teary (in a good way) head and say, yes, yes I am, again. BUT CLICK ON THEM - have the COURAGE TO JUST FEEL BETTER FOR A MINUTE!! Fiona, a Blind Dog Living in a Trash Pile and her Amazing Rescue and sight restoration (you will watch this again and again and again believe me.

A Special Dance to GREASE It is so old its not even digital, but I just love it...

CLICK ON THEM I PROMISE YOU WILL FEEL BETTER. BE STRONG AND LIFT YOURSELF UP.

Sending you Love Strength and Courage, and a LIFT, Through the Airwaves
Amy

An American Girl, and Boy

My son, my incredible healed son, is going away to the college of his dreams in 12 days. Its hard to believe that just one year ago, we didn't know for sure that he would even be well enough to go away to school, and now, here he is. I'm just so thrilled for him, for that he has this chance at his version of the American Dream.

And its starting to hurt, too - the realization that he is actually leaving, but I'm so excited for him. And no matter how much i will miss him, i'm knowing that this is the best possible thing for him on the planet! and for me, too, to have this chance to regroup and reboot and figure out who the heck I am now, after all these years of his illness and now, his healing and moving onwards. And I couldn't be happier about that either. But I'm crying, now, too, its just now hitting me. All this time, i'm like, so excited, and so proud of him. and then today, we started packing him. And its sinking in I guess, that I am sad, and up to this point i had the idea that I might be sad, but not the feeling. Now, i'm feeling it. Who knows what this part of the journey will be like? Probably, everything. Joy and pride and sadness and missing and excitement and adventure and more missing and more sadness. And I hope just lots and lots of juicy fun, i need a juicy happy future, i need it and i need to believe its there for me, somewhere. My American personal dream.

Its amazing how as soon you start feeling bad or sad or whatever about one thing, it colors everything and it all starts to snowball. So now I'm like, immersed in that weird achy missing feeling that I get, mingled with sadness and stories about it all. BUT...NO PTSD anywhere in sight. I am simply present to the missing, grieving maybe, in a way I was not able to do before, because the grief just knocked me over and triggered all that under the surface stuff. But I don't get that anymore. This grief is just plain grief. So maybe now I'll really be able to process it, and let it go, or get over it, whatever that is and whatever that means.

And so I have been indulging it, all day, in my pajamas, and just drinking coffee and helping Lance organize his stuff. And crying on and off and listening to this song over and over a hundred times. its THE perfect breaking free song and i always knew that he wrote it about me...

Well she was an American girl
Raised on promises
She couldn't help thinkin' that there
Was a little more to life
Somewhere else
After all it was a great big world
With lots of places to run to
Yeah, and if she had to die
Tryin' she had one little promise
She was gonna keep

It was kind of cold that night
She stood alone on her balcony
She could hear the cars roll by
Out on 441
Like waves crashin' on the beach
(And for one desperate moment there
He crept back in her memory
God it's so painful
Something that's so close
And still so far out of reach...)

Oh yeah, all right
Take it easy baby
Make it last all night
She was an American girl

it just puts it right out there, doesn't it? So close, so far. But what is there to ever do?? Rock on, keep moving forward, and let it go, again and again and again. Keep believing there is a purpose to all the fucking madness and that something incredible and alive and glorious is just around the corner. And follow those instincts wherever they may lead. Reach for the highest possible thoughts. Be brazen. And keep breathing, and keep loving, even if we have to die trying. its a risk worth taking. That's all there is to do, in this great big world.

Never ever ever give up. Not on your child, not on you. And never ever ever stop loving.