Pain and Hope Heard Around the World

Dear PANDAS Mama, Papa, Friend, Sister, Cousin et al:

Holidays are the worst when your child is sick. The worst. Darkness. Unbearable. Loneliness on a scale that most people never get the privilege of enduring.

Holidays perfectly reflect the absolute loss of goodness and innocence that accompany a PANDAS life.

So if this is where you are, please know that I know. You are seen, you are heard. You may feel completely devastated and invisible in your devastation, but there are thousands of us out here, standing with you and holding you from afar.

I wish we could hold hands today, all of us together, around the world, in our pain and in our hope for better times to come. Or lack of hope. And anything in between.

So just know, that whether seen or not, felt or not, there are many of us out here, together and completely alone, reaching our hands around the world to find and send strength to everyone that needs it; to hold each other up for just one more day; to envision our children in a brilliant light where health and goodness and innocence are fully restored; where our incredible personal and financial losses to this illness are fully replenished; where our collective heroic journey is somehow mitigated and celebrated.

Our rage, dispelled.

Our own innocence - our lost dreams of a happy life - somehow reborn.

Our souls, redeemed.

I love and see you, all.

Happiness

Dear Friends, Yesterday the most amazing thing happened.

It was brewing all day, really, all week, kind of. And it occurred to me, while I was taking a walk last night in the very warm pitch black night, it occurred to me that I could name this bouyant feeling...dare I say it..happiness.

I'm having happiness. I'm still almost nervous to say it in the other way I'd like to say it...I feel happy.

I feel happy. For no reason.

Bouyancy. Lightness. Desire to engage. Happiness! I remember this!! Its my authentic nature, just right there, out in the open, in the black night, for no reason.

I am not promising anything. I am not promising I will stay happy. Maybe this is just a moment of grace...well, happiness is grace. Its this open connected place that is just, pleasant and present and available and open.

Thank you God and Universe for allowing me to experience this day or week or moment of grace and happiness, and to remember that I am wired to be happy. THIS IS OUR NATURE. I just had forgotten, of course. Of course I forgot, I was so so buried for so long. My brain was overcome with the breakdowns of a life in PANDAS hell.

But I'm not permanently damaged...and either are you.

Our PANDAS journey took nearly 8 entire years of life. Terrible life. I was afraid I was so physically and psychicly and emotionally damaged - especially with all the PTSD and panic attacks that flooded my brain this past spring and summer - that true recovery was beyond me. Or at the least, would take my entire rest of life.

But I'm not damaged like that. And if I'm not, you're not. The human spirit is a powerful triumphant force, the most powerful force on this earth. Directed, it can move mountains. Directed towards our child's healing - it can and will and must conquer. Directed towards our own healing - it must do the same.

My happiness coming back is not an accident. My son is better, that is the key. And I have been on a quest for it all year. I have prayed, I have wracked my brain, I have been to the desert. I've been in therapy. I have tried to take better care of my body and hormones and nutrition and diet and to honor my need to be outside. I gave myself relentlessly to my work and to the care of children with PANDAS and with lyme in a space I hold to be the space of creating miracles. I worked and focused on all the positives in my astrological reading, and in the gift of an amazing channeled message that I recieved from my mom. I chose to believe in the promise of a new life. I've been to the east coast twice and imagined myself living a new life in a happy place with people like me. I put myself in a Landmark Seminar (first one in like 10 years!!), which just has been giving me access to a great conversation with other people powerfully committed to living a high quality of life. I've seized onto every good feeling I have had and named it and blogged it and tried to expand it with gratitude and focus, lighting up better brain pathways and having faith that they will gain in strength and momentum over time.

FAITH, there it is. Faith that my true nature would be restored to me at some point and letting go of the need to know and the need to have it now, and rest assured in the signs shown to me, that it will happen and all I had to do was to take care of the moment.

Well, here I am. At least I'm in the window of happiness and I can only imagine and expect it is a sign of amazing things to come:).

I wish you, if you can't reach a moment of happiness today, which I understand is just so far when your child is so lost and so sick...then I wish you a moment of at least knowing that no matter how bad it is, you are not permanently damaged, and you can at least believe that you will come back, and your child will come back. Please be brave and be a guerilla in the war against your child's PANDAS.

I can't wait for whatever my next post is:)

LOVE AMY

Hope and Transformation; A Life Beyond PANDAS

How is Lance?

He's fine! He's great, he's happy, he's out there at school living his life. He's had a series of colds almost the entire time it seems he's been away, so like, for 8 or 10 weeks. He says everyone has them. I think it may be the smog down there. I'm sending him an amazing air purifier (thank you CARMEL) and I think it will help. Plus I just revamped his supplement program to strengthen his mucosal immune response and reduce histamine. But the main thing is - no PANDAS no ticcing no flares.

What more can I ask for? What more do you need to know about him? That's about it, really. He's amazing and he still seems well.

OK, how am I? I'm great as well. I'm changing, I'm healing and shifting from the inside out. I can't believe its been about 2 months since my last post. Its because I needed to let life work through me before knowing what else to say that would be meaningful.

One thing I can truly promise you, dear PANDAS mama and papa or whomever else is looking at this blog and praying for some hope or inspiration: There IS life beyond PANDAS. Of that I am now certain. I have dipped my toe in the waters of the future, of life outside of the prison that held me so tight and so far away from the rest of the living breathing world for far too long. I still feel like I just crawled out from under a rock, like I've missed something, alot of things, alot of living. But I'm alive. I actually feel - good. And I notice every day, the simplest things - that I'm singing to myself. That I feel more awake and clear headed. That I love the wind. That I'm going out some. That people just say hi to me again, a simple thing, like the person in Trader Joe's today, just chatted away to me. And me, playing back. Playing. That's who I am, but I forgot. I'm actually incredibly playful. Ha! Who would have known this? How could I have even remembered? For years, and even until very recently, I was completely invisible. No one ever said hi to me, because I was just, invisible. Numb. Old. Dead, really. But now, I notice that I am back to being playful with just no one in particular, just, on the street, in the store, in the airport. I'm not as afraid, and I'm not invisible.

This is HUGE!!

And I still don't know exactly my next step, but I no longer wonder IF there is a future for me, if there is love in the world for me, if there is a place for me. I only wonder, now, what it is and where it is and what its going to look like. And I do pray to God I recognize the signs and steer my ship in the right direction...

This is a gargantuan leap for me!! I was broken, bereft, destroyed on every level. So many times I had wished I was just dead. That God would just take me because the pain of living in PANDAS hell, watching my child's life be ripped from its hinges, watching him sink into this bizarre illness with no understanding of what it was or what to do for just so long, then battling our way back. Losing everything, like so many other PANDAS families - dreams, house, security, friends, marriage, sanity. UGGGHGGHGHGHGHGHGHGHGH.

My heart goes out to every single one of you out there right now and forever. IT WILL GET BETTER YOU MUST HOLD TO THIS ONE THOUGHT IT WILL GET BETTER IT WILL.

Last week I gave a presentation to over 200 school nurses on the East Coast about PANDAS. How to recognize it in students, and how to set up the kinds of accommodations and supports they might need in schools. How to case manage PANDAS. Can you believe that? There was so much enthusiasm there. Nurses, of course. It makes sense to me that nurses could be the ones to turn this disease around in the minds and hearts of the medical community. Nurses are the Heartbeat of the medical system.

Imagine if you would have gotten a call from your child's school nurse, saying hey I notice your child is having a hard time, I think maybe they have PANDAS. Here is a referral for someone who can diagnose and treat your child if they have it. And here is how the school community is going to help and support you and your child...

CAn you even imagine? But this is where things are going. There is still tremendous hard work ahead, but at least there are signs of progress and hope. Heaven knows we need it.

Also these journal articles are really a big deal, so if you haven't seen them in the Journal of Child and Adolescent Pharmacology, and printed them off for your providers, here is the link to them on PANDASNetwork.org. These are strong academic and clinical consensus papers that can help turn the medical tide: turn a non-believer pediatrician into a PANDAS provider or at least a PANDAS-friendly provider. Please, use them, print them off or better yet, purchase one of the journals through the PANDASNetwork webiste so you have all of these important documents, and pass them around to everyone you know in the medical field that may encounter a child with PANDAS - which is everyone.

At one in every 200 children, I consider PANDAS a high-incidence illness. Everyone sees them but does not recognize them. How do they stack up against the most common pediatric illnesses? Juvenile Diabetes type I is 2-3 per 1000 children, and look at the attention and resources poured into that illness and school supports. Students with severe visual impairment? One per thousand. Sickle Cell Anemia? One in 500. Cystic Fibrosis? One in 3700. Cerebral Palsy? 2-3 per thousand. These are some of the most common chronic childhood illnesses!

SO...PANDAS? One in 200 children. What are the implications of this?

Children with Mental Health Disorders? ONE IN FIVE CHILDREN in a recent CDC publication. Children with developmental disabilities - 1 in 6, including learning problems and spectrum disorders.

When did this happen to our children?

While it may be little consolation now, this is such a better time to have a child with PANDAS than say, 2006 when Lance had his big break. You could google "sudden change in my child" "overnight ocd or tics"... and PANDAS did not come up. I should know, I spent over 3 years scouring the internet, all night every night. Now, at least, PANDAS comes right up. You still have to be the one to consult Dr. Google, you have to know enough to look it up yourself. You have to know what to ask. And that also has to change. But overall, compared to how it was, there is greater awareness and greater access to information. There are way more doctors you can go to, even if you feel there is no one to go to, its many times greater than what was available just a very few years back. Or just one year back. According to the parent survey we did at the Parent Symposium earlier this year, there is a definite reduction in the time it takes for a child to recieve a PANDAS diagnosis from their symptom onset since 2012. Of course that number still has to go down to less than 3 days in my opinion. Thirty-five percent of the respondents' children still took over 3 years to be diagnosed, but there were also 31% diagnosed in under 6 months compared to a much smaller number in 2012. Still, just the fact we are measuring in increments of "less than 6 months" is a crime.

As for me, I am clearly in this for the long haul and I don't care what it takes. This week I am tackling administering IVIg to an entire family - three children, all true PANDAS. That mom? Exhausted and loving. A saint. PTSD to the max. They just sold their house so that they could afford it.

I will never stop treating PANDAS until its over. Every single day practically I am learning something new about brains or inflammation or strengthening mucosal immunity or locking down the BBB. I just need to keep my brain strong and my body healthy. I will spend whatever brain cells I have left figuring this mess out and I pray, dear God, I do it with happiness and joy, and love, and with the feeling of being home and being somewhere and with someone i know i belong with. With a healthy child whose life continues to unfold freely and openly and with resilience and knowing the future is open and bright.

Please do not give up.

There is a future for each of us. For you and for your child and family.

PLEASE, decide to make it through another day. Reach out, do whatever it takes to remember that there is truly hope, there is truly life beyond PANDAS.

The Unfolding

Yesterday an amazing PANDAS mom gifted me a session with a brilliant astologer that reads energy and life story in a chart the same way I read blood, with depth and insight and a level of integration not available to the common mortal.

She told me that my chart is just so difficult, its a karmic life. My stars have given me a soul path like Persephone, endlessly going down into Hell and back. Yeah, well I would call that difficult. But (based on this reading) my evolution, like Persephone, is redeemed by bringing the light and understanding I gain from my moments of freedom back down into the darkness to share with others, and then the Hell lessons back up to share in the light with others. That my life is this path, a healer's path, and my teaching is my personal lessons learned on my journey. And that I will share them and write them, and bring to others my ability to put into words, the depths and the lessons and the emotions and the dark narrow spaces in ways to bring help and freedom and healing to others. She told me all this without even knowing anything about me, and I would say it describes my life exactly. And that I will always teach what I have learned from my own personal Hell, and that my saving grace is this thing called a Trine, this profound watery fluid heartspace that gives me the capacity to hold the difficulty within a humongous compassionate lake of love and transformation. And that I can love with a tenacity that heals and forgives from the depths, a profound, extraordinary love. A healer's love.

She showed me where my chart is ripe and rife with the pain of abandonment and isolation issues, doing it alone, going it alone, and that i will always, when under enough pressure in what she calls a "trance" state, default by pulling into my self and feeling alone. And unsafe in the world, always looking and searching for my place, my safe belonging place. :( THIS is so true.

And that my whole life was set up to heal my child, alone, because I could, because I would, that's the likely way it would have happened. That my journey is so about healing the mother wound. My mother wound. My mother's wound. My wound as a mother. Our collective Mother wound.

She showed me where in my chart lives another of my greatest challenges, which is having any idea how to express a need in relationship with others, how blinded I am in even perceiving a need to my own self, and that by the time i can even perceive it, I am already in such dire emergency but have zero idea how to ask, either ever, or until I have already broken or left. And then, SAYS MY CHART, where I go within myself when my needs don't get met, is a tortured karmic place. THIS IS HARD WIRED by my planetary configuration!!! Or, soft wired, lets say. OK, so its not my fault. Can you believe that??? Its is a Huge Thing, right there in my stars, that I have come to transform and heal in my lifetime.

This is so true for me. Its a weakness and a problem that I have, and interestingly, something I have found I can solve to some degree, through Facebook. I ask my FB community to be there for me, because they are, and because i can voice it better in writing (oh well, just ask my ascendant ;-), in the both personal and nonpersonal way that FB is. I can still hide while asking for support, Yay Facebook, problem solved. It is about the hardest thing I can ever do to ask another person for support especially if its something I really really need. And especially to ask in person. Or if they simply offer, I have to say No No No so automatically i wouldn't even remember the person ever offering, it doesn't even register. That's a trance-state. Oh, I know, I should be beyond that, right? Safety outside of myself, not my best suit.

If you are a person in my life I have ever asked anything of, well, that says alot about who you are for me. THANK YOU for being that safe for me.

Or if you have been willing to be there for me, or contribute to me, whether I said yes or no...I thank you right here right now, for being that for me.

If I did not let you be there for me, and you were and I could not see that, I am so sorry please forgive me. You likely saw me struggle unnecessarily, or break, or I left. Either way I left you standing there, with a hand out, and I forgot to notice. I'm so sorry. Sigh.

She showed me just how wired I am for my body and senses to be exquisitely sensitive. Visceral, vibrational and kinesthetic. Everything comes into me through my body. Way before words, I feel and respond on a cellular level. I think this is why I am so sensitive to things like toxins in my body, and the vibration or energy of a place or person, or group of people. Like, my body is a vibrational hub that reads life for me. I've always known this but thought that it is just an adaptive response from growing up in an abusive household, you know, always read the energy and get out before everything erupts. But, this wiring predates that, and likely allowed me to survive the way I did. And its why I can read blood and bodies and chemistry the way I do, i can speak that cellular language in a unique way. I so get that. I can see why and where in my chart I long for and seek out resonance, and why I can spend hours or days in the wilderness, lying on a single rock or in a tree and just listening to the hum of the world, while wisdom and balance just flood into me and tune me up. I know I must trust these intuitive feelings no matter what it looks like on the outside. Well, I used to, and then I got so bogged down by this PANDAS thing, the personal resonance became a burden, so i tried to cut off the need to make it feel better. but still, this is the gift that gives me power in my exam room, and reading blood chemistry, and figuring out the metabolic monster that is PANDAS.

But wait - there's more! Here's The Best Part!!

My future is an open door. At this very moment, the heavens are conspiring to bring me healing and clarity, and for this I could not be more grateful!!! Like, the universe has literally lined up and opened up a door for me!!!! For me!! Can you believe it? I am in this transit called a second Saturn return that realigns and amplifies love and personal truth, at this very moment it is moving towards peaking in these next several months and will help me re-create a genuine life for myself. I KNOW THIS, I FEEL THIS. I have let go of so many things that were weighing me down. I often feel light and free and inspired, and its been so long since I've felt that way. The exile is over. And, there was something in it about finding PLACE. Place and HOME, my biggest unsettled issues, my greatest losses. Where is my home? and who are my people now? Where do I belong? Where is that safe place? I am so ready. Of course, I own that my exile was self imposed. Blind-self, yes, trance-self, but still, I colluded to bring myself down.

I literally said yes to moving from a home I did not want to leave, from the people I loved and did not want to leave, to travel 3000 or 3 trillion miles out here to the literal and figurative Wilderness, where my husband just had to be. I did it to save him. Because till death do you part. But now I realize its not just a physical death and then you part. No, it could be death on many levels. Emotional, psychic, energetic, financial, sexual. However much you are willing to kill off of yourself to save your marriage. Until you have suffered enough or are dead enough that you feel the world finally gives you permission to leave, if there is even anything left of you to leave.

I killed myself, by misunderstanding the signs, of what was called for in that moment. By my willingness to ignore what my deepest heart was telling me, I abandoned my life and myself as a human being. My entire body was screaming, for months, not just minutes or days or hours, but months - DONT DO THIS DO NOT SELL YOUR HOUSE DO NOT LEAVE YOUR PLACE but I did it because that was what my husband wanted and i justified it and thought, ok, I can make anything work. This was one of the most personally destructive things I have ever done. Till death.

I couldn't see what my stress and misalignment were doing to Lance. I kept trying to overcome it. I couldn't see that my longing to go home was actually an indicator telling me I could and should do that. I disempowered myself and sold out my needs and perspective to my husband's. And Lance is angry at me about that, well, not as much now as he was last year when we first talked about it. As he got better, and was able to look back and reflect on what the heck happened to us. He was mad I had been so stressed and unhappy, he was angry that I stayed with his dad who did nothing but create misery for the two of us. And I thought I was doing it FOR Lance, keeping our family together. He couldn't believe I would not follow my instincts and get us out of there. I hated it but felt so stuck, in my marriage, in this town. Trapped. And no matter how much I had tried to hide that from him there was no way. And I could not ever justify to him the part of me that sold us out like that. I could only try to explain my blindness and ask his forgiveness. And my own, that's even harder.

THERE IS NO WAY THAT YOUR CHILD DOES NOT KNOW HOW STRESSED AND ISOLATED YOU ARE.

Well, not like I didn't have a million reasons. I could justify my stuckness and my fear with reasons. We were totally broke, for one thing. Medical expenses, bankruptcy. From the nearly half a million$ I had in my personal savings when we moved here, not even including our family savings - plus the home we lost and everything else. I was absolutely exhausted most of the time. Lance's healthcare support was out here. His incredible high school, Sonoma Academy. Not like we didn't have some awesome people here. We just didn't belong here and I used every reason I had to avoid facing whatever it was I needed to face to get us out of here.

Sigh.

Here is the take-away lesson for you, dear PANDAS MAMA OR PAPA WARRIOR.

DO NOT GO DOWN WITH THE SHIP. Do anything you can to connect. ANYTHING.

Have the COURAGE TO FEEL BETTER. It is GRACE. It is deserved, and not deserved, at the same time. You will heal your child's illness AND emotional wellbeing from a place of love and balance better, than the devastation you feel right now.

REACH UP and OUT REEEACH OUT!!!!!!

I am unfolding and I am priveleged to share my journey with anyone that is helped by it in any way.

I am healing. I have had incredible insights and am willing to lean into the promise of this planetary moment for me, if that is where i can find validation and confidence and strength, to move forward and out of exile and into an unknown future that, while I believe it holds love and belonging (and something about Leadership in a huge way, she said...) for me, it still is shapeless and empty except a little glimmer of hopefulness and that's all, that's it. Its still a void, a black hole. But I have to go only by a gut feeling and let that lead me to wherever feels better, and that will be my next step. My next step may be an interim step, just to get to a place I feel better and from there, the rest will unfold without so much pressure.

If you are a PANDAS parent, please find a way, today, even for a few minutes, to put your pain away and create some joy in your home. Everyone will heal better, faster, through joy, than through pain. Including your child, and your other children, and your spouse and most certainly, yourself.

I wish you much love and success on your journey.

Holding My Breath....

OK, Lance is at school for almost 2 weeks, and he has a sinus infection. OK, that's normal, but sinus infections are not good for PANDAS kids.

Ever since Dr. Dritan Agalliu from UC Irvine presented his mouse model at the Northeast Conference last November - of how the strep actually breaks through the blood brain barrier by penetrating from the infected sinus directly into the brain - I am very suspect of and aggressive with treating sinus infections in PANDAS children.

So now he's at school, and I'm here, like 500 miles away, unable to personally assess his situation.

And it should be fine. I sent him some colloidal silver sinus spray to use which he should definitely receive by tomorrow, and he's been using salt water neti pots twice a day in the meantime, and I know that helps.

but still, it does scare me. I haven't asked him if he has any tics, I'm afraid to ask him. I think he would tell me if he's having a problem. This is likely a normal thing, a sinus infection, and it will go away, and he'll move on without anxiety or tics or any of the other related stuff. Right???

So I'm feeling some of that familiar worry, I haven't felt it in awhile. Is his blood brain barrier strong, and healed? Or is it not? I will certainly find out, soon. And i can only think, although I feel anxious about it, I have to believe that he will be fine, he's already proven that he's fine. Right???

I think as time goes by, and he gets routine illnesses like this and doesn't flare, I will simply forget to worry. Is that possible?

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.