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This is a post I’ve been hesitant to write. I’m no Max Lucado, there are plenty of amazing books out there worth way more than my thoughts. But, I’ve been there, and this is part of the story God gave us, so I guess I should probably tell it too.
When Haley got sick…correction, when we lost her to PANDAS overnight, I was brought to a place of complete devastation. We hadn’t the slightest idea what was wrong with our child. I remember asking my husband, “What if she has a brain tumor?” He said, “Don’t even go there, don’t even think that.” And I broke down. I was actually wishing it was a brain tumor. Not the kind that kills you or leaves you damaged, but a tumor that the doctors could just go in and cut it out and then she’d be fine. In my mind, it would have been better to deal with cancer than to deal with an unknown mental illness that couldn’t…wouldn’t….get better.
We had just moved, and had no support, no new pediatrician, no where to turn. I called our old pediatrician and prayer warrior friends and family and they prayed for us, and gave their advice:
“Maybe it’s because you’ve been so paranoid about germs and washing her hands and hand sanitizing.”
“Maybe she’s been sexually abused.”
“It’s just a phase she’s going through, she’ll get better / grow out of it.”
“You need to give her up to God, truly let her go, and let Him decide.” (I heard, accept this, your child may be insane from now on. Give up. Stop trying. It’s His choice, not yours.)
“You have fear in your spirit, and that fear has been passed down to your daughter.” (True, I have never been so scared in my life. If animals can really smell fear, I’m sure I reeked of it!)
And on, and on. They all meant well, and they loved us the best they knew how. But, here’s the hard part….I ended up feeling a bit like Job, when his friends came to encourage him, but left him feeling worse, blaming him for his troubles…..Come on now, Job, you must have messed up big time for God to strike you with so much trouble! (In a way, I think this is a self defense mechanism. All of our “normal” friends, with their “normal” kids, saw this happening to us and ours, and they have to rationalize it somehow. If they can put the blame somewhere, then maybe they can make sure it doesn’t happen to their kids, and it’s easier than blaming God.)
Of course, I was already blaming myself. And, yeah, Him too.
Then there were the ones who didn’t call, and left me feeling abandoned. Really, you just can’t win. It’s like giving your condolences at a funeral…they all come out sounding shallow and wrong, but you’d better show up for the funeral anyway or you’re going to be in trouble!
But there was one friend…really, not even one of my “closest” friends. She called me, when we were in it up to our eyeballs. I told her what everyone else was telling me and she said something that stuck. “Don’t let anyone tell you how you should feel, or what you should pray. You do what feels right to you, and pray what you want. God can take it!” Or something to that effect. That’s what I heard, and that’s what I needed to hear.
“God can take it.”
He can handle my anger, because, let’s face it, I was angry.
He can handle my doubt, because, I was doubting. Not doubting His existence, but doubting his love for us and our little girl.
The best part is, even when I thought I was walking this whole thing alone, He was with me. He was, and is, writing our story to help others through this journey.
Today a mom on the other side of the world shared with me how this blog has helped her and her precious kiddos. I was brought to tears. I told Haley about it, and how God was using her PANDAS to help other kids. It was bad (she knows this, but doesn’t remember a lot of that time) but God is taking our story and turning it into something good.
We recently read a book called “Amy Carmichel: Rescuer by night.” She was an amazing missionary, rescuing kids from lives of slavery. I look at her life and think, “Wow, what an amazing woman! And I’m just a mom.” But whenever my four year old sees me spending too much time on my computer during the day, she says, “Maaaammmaaa, remember, you need to rescue PANDAS kids by night!” And it makes me smile. This wasn’t part of my plan. I didn’t choose this stinking disease to be a part of our story. And, believe it or not, it’s incredibly hard for me to share any of this in person. I just don’t have the right words. I haven’t even shared this blog with family or friends. But, I need to share it with you. My momma bear friends, fighting for your children.
God is bigger than this. He will love you through it.
The same way that you love your child when she’s screaming in your face, scared to death and lashing out against you, God loves you. You are his child, even when you don’t feel like it. Even when you lose your faith in His love. When you lash out in rage against Him, kicking and screaming for all you’re worth. He can take it. Let Him hold you tight.
And when you’ve made it through the storm, share your story.
This blog is written by an anonymous mom. PANDAS disease is ugly. It’s practically unheard of, but it’s not rare. 1 in 200 kids has it. That’s right up there with childhood diabetes…but my pediatrician had never heard of it. This leads me to the question, how many kids out there are misdiagnosed, drugged for “behavioral issues”, OCD, schizophrenia, ADD, Autism, ADHD, Anorexic, or taken from their “bad” parents by well meaning doctors, teachers, and lawyers who don’t know about PANDAS. How many parents are searching for answers every night, in silent agony over losing their child, and have no one to talk to, no one who understands. This blog is for those parents. Those doctors. Those teachers. But mostly, it’s for those children. The ones with the fear in their eyes and the haunted look. The chapped and bloodied hands from washing incessantly. The lost childhood.
Lord, multiply this, share it with those who need it most. I don’t have time, or resources, or knowledge to get it into their hands. If it will bless them, let this reach them. In Jesus Name I pray for each hurting child. Amen.
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