My PANDAS and PANS Awareness Day Speech at the Capitol
This was my speech at the Capitol...in case you missed it. That photo? That's not me. That's Dr. Shimasaki, CEO of Moleculera Labs, creators of The Cunningham Panel, one of the only tests for PANDAS in the world...and it happens to be right here in Oklahoma. His speech was amazing. But, you had to be there. Since you missed it, you just get the Donkey Milk Lady's speech...
When I was asked to speak today, I had no idea what to talk about. I thought about sharing our story of PANDAS and donkey milk, but you’ve all heard it before, and if you haven’t, you can google it…later. I could quote current donkey milk research, bore you with talk of immunoglobulins and lysozymes, and share stories of the incredible things we’ve seen happen with donkey milk. Or I could talk about our upcoming “Hee Haw for Health” event at our Donkey Dairy for families affected by PANDAS, Autism, and autoimmune disease.
But maybe, since we’re here for PANDAS Awareness, I should attempt to stick to the theme.
We all know there is a serious lack of Awareness where this disease is concerned. Five years ago, when our daughter drastically changed overnight, we heard it all. No one had an answer for this, but everyone had a reason for it. One told me this happened to my child because I fed her too much junk food (and I was the mom who ground my own wheat flour.) Another thought it was because she must have been vaccinated (ask me her vaccine history, I’ll gladly tell you, off the record.) Obviously, this happened because of trauma from moving too often, giving too many antibiotics, or, my personal favorite…she had obviously been abused (we homeschooled and never let her out of our sight.)
No one thought the real reason could be a case of strep throat.
Sadly, we can talk about this disease until we’re blue in the face. We can be on billboards and every TV news station in the State, explaining this disease and what it does to our children. We can blog, and share on Social Media, and speak at the Capitol, and make documentaries, and write bestselling books. And it will never, ever be enough.
We can shout from the rooftops until all the teachers, doctors, counselors, and politicians know all the symptoms, acronyms, and the current recommended treatments and protocols. But they will never be AWARE.
It’s impossible. I hate to break it to you all, but it’s not happening. Not today. Not tomorrow. Not next year…or the next.
Because no one can be really AWARE of what it means to live with PANDAS. They can’t possibly be AWARE of what it’s like to hold your child while she rages with superhuman strength. They will never be AWARE of how it feels to actually hope that your baby might JUST have a brain tumor, because it would be easier than this. They will never be AWARE of the absolute mental, physical, emotional, and financial exhaustion you feel in the depths of your soul after researching every spare moment and trying anything and everything, spending all you have and then some, because everyone has all the answers, but no one really knows how to bring your baby back.
Five years ago, our pediatrician had never even heard of this disease. We sat in his office and googled together as I explained PANDAS and went over current treatment protocols with him. He listened, and he prescribed all the right things… but they didn’t cut it for our little girl.
It was then that my sweet doctor understood something that most don’t. He said, “I don’t know what else to do, but can I pray for you.”
Because, at that moment, he understood.
He will never be AWARE.
There is only One who is truly PANDAS AWARE.
He was the One who was with us when we held our daughter in the night, praying over a terrified little girl who saw spiders all over the walls.
He was the One with us when we got in to see the psychiatrist who diagnosed her with PANDAS the day after we had called, the doctor who normally had a wait list of months.
He was the One with us out in the field that day when we were trying to save a momma donkey and losing her fast, so he sent a stranger to get donkey milk for his grandson with PANDAS. A stranger who just happened to be one of the best equine Veterinarians in the country, who saved our donkey that day, recognized this family was in way over their heads and needed some help, and adopted a struggling donkey dairy.
He was the One who took us to the brink of financial ruin so that we would understand rather than judge, when parents show up for their free jar of milk and then need donations to help make sure their child never has to go without “the one thing that’s helping them.”
He was the One who broke our hearts and overwhelmed us with hundreds of emails from desperate parents, and gave us this impossible vision to have a free health event for hurting PANDAS, Autism, and autoimmune families on our farm.
He was the One who knew we had absolutely NO idea how to go about having a free health event, and no resources to make it happen, so he sent a bunch of amazing volunteers and donors along the way.
He was the One who sent a gluten free, toxin free food truck all the way from Arkansas, to donate amazing food for the families at the event, because a Grandma of a child with PANDAS had a doctor who prescribed donkey milk for her baby…and that Grandma happened to have a healthy food truck and a heart for our children.
He was the one who sent doctors, and homeopaths, and researchers, and nutritionists from all over the world, who agreed to come to Oklahoma to give our children their time and their knowledge, for free, for one day on a Donkey Dairy.
He was the One who used the anguish we were going through five years ago to help so many other families facing the same terrible journey today.
Honestly, if He had told us what was ahead and given us a choice in the matter, we probably would have said no.
But He didn’t.
Instead, He used our pain and our anger to bring us to our knees…only, in this case, it was on one knee, at the hind end of a donkey.
Maybe you think He doesn’t see you. That He doesn’t care. That He’s punishing your child for your past mistakes. You’re done believing in a God that would let this happen to his children.
I was there. I was angry. I was bitter. And I was done trusting in God to save my little girl. I thought He had abandoned us and it was up to me to save her.
But now I look back and see His hand in all of this, and I believe the opposite is true.
Maybe you don’t believe in donkey milk. Maybe you think we’re a little bit looney. You’re wrong. We’re absolutely crazy….crazy about our daughters. Crazy enough to buy mammoth donkeys and milk them. Crazy enough to believe that this might just help more children be well.
And we aren’t the only crazy parents out there.
A few years ago, a very special little boy was born. Unfortunately, there were a few too many baby boys back then, and he was scheduled to be killed along with the rest of his future football team. But this little boy’s momma was a fighter. She googled the best reeds in Egypt. She wove basket prototypes while the other moms slept. She researched all the best basket designs and skipped her Starbucks and spent her savings on the best pitch in town. And then she put her baby in a basket, and she sent him down the river. Because she was exactly the kind of crazy momma that baby Moses needed to give him a chance to survive.
I look at each of you here today, and I see a bunch of warriors, crazy enough to believe their child deserves a chance to live the life they were meant to live, and willing to do whatever it takes to make sure they have that chance.
Because ALL of our children, like baby Moses, are special.
They are especially loved and vitally important. They have a purpose. They have a mission. And it’s our job to make sure they grow up so they can take their place in this fight.
When the stakes are the highest and the battle is the thickest, they send in the Marines. The best of the best. Because too much is at stake, and we can’t lose this battle.
You all? You are the Marines.
You are exactly the basket weaving warrior that your child needs. You are the mother. You are the father. You are the Grandma. You are the Grandpa.
As awful as this disease is, God chose you for this fight, because it’s thick, and it’s desperate. And the stakes have never been higher.
You have what your child needs to survive this trip down the river.
Your basket may not be milking donkeys for your baby. (Probably not.)
Your basket may be IVIG. Or antibiotics. Or plasmapheresis. Or homeopathy. Or herbs. Or some ridiculously strict diet. Or a miraculous healing. Or some awesome new Twinkie therapy that will change the world.
Whatever it is, know that you are not alone while you weave.
Because sometimes we forget the rest of the story. The part they left out. The part about that crazy momma bear who sent her son down the crocodile infested river. Because as far as we know, Moses’s momma never got to see her baby boy grow up to be a superhero and save the day. She probably died with a broken heart, thinking her son was just a raging, murdering fugitive with a serious personality disorder. (I’m pretty sure the conversations around their dinner table involved Moses’s mother ranting about how all that Egyptian junk food ruined her baby boy’s gut flora and sent him off the deep end…) but we know the rest of the story. That runaway bad boy eventually came home after his stint with the sheep in the desert. And it turns out, he wasn’t so crazy after all. He was loved. He was important. And he had a mission to accomplish.
The Israelites were living in misery, they were slaves, and, like many of our children, they were forced to do things and be things they never wanted to do.
They thought they were forgotten, but God always had a rescue plan. Moses was coming back to set them free.
Someday, we’ll all get to know the rest of our story. We’ll get to see how it all works out for good. And we’ll understand why. I hope for our sakes that it’s sooner, rather than later.
The thing is, I don’t know how your chapter ends, but I know how this book ends.
I don’t know how your child will be set free from this disease, but I do know we have a warrior better than 007, better than the Rangers, better than the Green Berets, and He has a rescue plan. He came in peace on a donkey the first time, but this time, he’s coming on a war horse, and he’s not leaving one of his children behind.
Our God is fully AWARE, and He is always there.
And when Jesus wins this war, ALL our babies will be set free.
Until then, keep building your basket, and know that you’re not alone in this fight.
So, weave on, warrior Momma, warrior Daddy, and warrior Grandma and warrior Grandpa.
And never, ever give up on your baby.
Because this story isn’t finished yet.
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