“I want to rip out my brain mama! I cant bear this anymore. Please help me. I hate living, I just want to die.”

The sudden punch to the gut feels harder this time and you weren’t prepared.

You had almost forgotten what this pain felt like, but here you are again. Another flare, another season of grief. You lay sobbing on the floor of your bathroom, sniffling quietly because you don’t want to wake anyone up with your crying, so you hold your breath and cover your mouth in between sobs. Why God, why my child?

Your kid is being tortured once more, by an immune system that got the wrong memo. “Where the heck is the HR department in this joint, I want to complain about discrimination and improper treatment.” You laugh amidst tears, trying to make light of of this immense suffering.

But there is nothing you can physically do to make this stop. There is nothing your doctors can do because most of them don’t understand how to treat this beast. Instead, some write it off as something else. “Maybe its a mental illness, maybe its attention seeking behavior, maybe its long COVID. We just don’t know.”

“I mean even if they did know, my insurance doesn’t cover anything that will help treat and stabilize my child.”

And here comes the second punch to your gut. This one actually hurts more than the last one. You stare blankly at the wall wondering how is it that you live in a developed nation with all of the resources in the world, but there is nothing for you. Nothing to help stop the misery that your beautiful child is experiencing. You might as well be living in a developing nation without access to any medical care, because in reality you don’t have access to the care you need. You just don’t.

“Oh but there is available care mama, you just cant afford it, so sorry for you.”
Your brain’s snarky comment makes you cry angry tears.

Yes, you know that there are a handful of MD’s across the country who specialize in these autoimmune inflammatory brain conditions but they are just as far away from your access as is a vacation in Norway. You recount every single phone call made in the last few weeks. Call after call, asking about appointment availability and cost. The seasoned doctors all want around $2000 or more just for the first appointment, and they don’t have an opening for months. The cost by the way doesn’t include anything other than 1.5 hours of their time. Initial labs, diagnostic imaging, medication, and or supplements are estimated at $3000 to $5000 or more.

You’re like most families. You have an income but you are not Rockefeller. The Bengamins are scarce. “Where on earth am I supposed to find a minimum of $5000 to see a doctor who can help? And should I even be able to get those funds how are we supposed to wait so long for an opening? What happens in the meantime? Who do I go to for help? The ER did what they could and sent us home. Both the neurologist and immunologist don’t believe in my child’s condition and so they refuse to order testing or prescribe medication. The pediatrician was honest in saying he couldn’t help.”

Frustration, sadness, grief, and anger wash over you in waves. “I have to stay strong, we will get through this. No season lasts forever. God please help me. I can’t do this alone”

——————————————————————————————

This brief post is written in honor of the dozens of families and children that have crossed my path over the years. Families I’ve mentored, prayed with and sought to help. Here, I’ve only managed to gather a few quiet words, a small fragment of all I have seen, all I have stood before, all I have witnessed with my own eyes time and time again.

To all of the P/P, BGE, AE, Lyme, and Mold Toxicity mamas, I see you. I am sorry for your pain and the suffering your children have to endure because of a broken, system.
I wish I could do more for you, for our children, for their present suffering, and for their future.

A few lines from the song Hands, by Jewel came to mind as I typed the last lines of this post:

“In the end only kindness matters…
“I will get down on my knees and I will pray.
I will get down on my knees and I will pray…
We are God’s hands.
We are God’s hands”

May we be kind to those who are suffering. May we actively seek to help those who cannot help themselves, and pray for the needs of those around us, as we seek to be the hands and feet of our Heavenly father.

With Love,
CFG

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