The first thing I saw when I opened my Facebook feed this morning was this article posted by People Magazine entitled “Acute Flaccid Myelitis: Mysterious Disease has Sickened 103 Children Since August.” My own personal mojo has kinda been missing the last few days, so I scanned past it, not wanting to ruin my mood even more.
And then the emails started…
“Have you heard of this?!”
“Have they tested Ryder for this?”
“Is this what Ryder has?”
“Thought you’d be interested to learn about this…”
And so I read it.
Here’s the thing: Acute Flaccid Myelitis (or Acute Transverse Myelitis) is NOT a disease of any kind. It’s more like a symptom of, or a response to something else. This medical term is simply a way to label Ryder’s current physical condition.
Myelitis = inflammation of the spinal cord
Flaccid refers to the fact that the myelitis causes paralysis of one or more parts of the body that hang limply
Transverse means that the myelitis occurs across both sides of the spinal cord
Acute = rapid onset
The problem is that no one knows the cause. THIS is why it’s such a big, hairy monster! Without knowing how it happens, there’s nothing to predict it, nothing to prevent it, and no true indication of prognosis for the kids who are stricken with it. (Are we having fun yet?!) When faced with a situation like this, especially when it relates to children, people tend to panic a bit.
Reading the article made my heart race a little, but the thing that got me really fired up was reading the comments afterward. Conspiracy theories and judgement are being handed out like candy on Halloween. But they’re not helping any of these kids get better!
After my first miscarriage (in 2005), I was flabbergasted as more and more women greeted me with a hug and then whispered in my ear, “I had one too.” and walked away. I couldn’t understand why people knew about this big hairy monster and didn’t warn me, or why these women seemed to carry the memory around in secret as if they were ashamed… and it made me angry. From then on, I vowed to be open (and even outspoken) about my experiences so that others would know they weren’t alone. Little did I know, God would give me plenty of experiences to be open about!
For I know the plans I have for you, says the LORD. They are plans for good and not for disaster, to give you a future and a hope. Jeremiah 20:11 (NLT)
I decided to put a face to the issue for those who were slinging ridiculous statements around from behind the protection of their computer, so I posted a comment rebuking all their crazy arguments and included a photo. What I wrote was pretty tame, but I really wanted to say something like, “This is Ryder. He’s 6, and until December 22, 2014 he was perfectly healthy and athletic. He’s fully vaccinated, although he hasn’t had a vaccination in over a year. We don’t do the flu shot. He eats (mostly) clean foods, gets plenty of exercise, and has no pre-existing immune deficiencies. He’s not being punished by God, and he’s not being overdramatic. He did not injure himself playing sports, and he has never been abused. He’s stronger and braver than most adults I know, and he will conquer this.”I expected a few passing offers for prayer from strangers. What I didn’t expect was to be private-messaged by four other moms of kids with AFM/ATM within five minutes of my post. Every single one of them said, “We feel so alone. It’s so nice to see there are others out there just like us.”
We know that all things work together for the good for those who love God… Romans 8:28 (GWT)
Within an hour, someone created a community group where all of us can get together and compare notes. See, this is still pretty unprecedented, and no two kids have been affected in exactly the same way. It’s a place to put an arm around a “neighbor” and say, “We’re in this together, pal!” It’s a chance to celebrate victories with those who understand just how special the tiniest flicker of movement from a pinky finger can be. Conversations have been started. Questions are being asked and answered (for once!). Families are being supported by other families all over the nation.
And suddenly it doesn’t feel like such a big hairy monster. It’s still scary, and there are still more questions than answers. We’re still facing a long uphill climb. But at least we’re not alone.
Do not be afraid or discouraged, for the LORD will personally go ahead of you. He will be with you; he will never fail you or abandon you. Deuteronomy 31:8 (NLT)
***Disclaimer: I realize this post has an undertone of irritation. Please don’t take it personally, it’s just part of the process. Please feel free to ask questions. We will always do our best to be as open and honest as possible, and we are indescribably grateful for the love, support, and prayers we’ve received thus far.