Acute Myelitis – A Big Hairy Monster

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.”IMG_8176I 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.

10 Responses

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  1. Shirley Turner
    Shirley Turner January 15, 2015 at 8:34 pm | | Reply

    I like hearing your heart. Still praying for a complete recovery.

  2. Cindy
    Cindy January 15, 2015 at 8:36 pm | | Reply

    I admire your courage, strength and truth ! Praying for Ryder & his beautiful caring family ☺️

  3. Keri
    Keri January 15, 2015 at 8:52 pm | | Reply

    Glad you are finding a support network. Hopefully, the docs are working that way, too, and all of your collective collaboration will lead to some treatments/solutions/theories/etc.

  4. Jessica
    Jessica January 15, 2015 at 11:52 pm | | Reply

    I am glad to hear you have been able to connect with others in a similar situation as yours. I read the article after someone posted it on your Facebook page this morning and couldn’t believe the ignorance of people in the comments. People were being very hurtful and rude.

  5. Stacia
    Stacia January 16, 2015 at 6:18 am | | Reply

    It has been touching to read about Ryder’s journey and pray for him and your family. Because we have big things going on too. And need support. Things people don’t want to talk about. But it’s important to talk about Big Hairy Monsters! I’ve found support, too, for what our child is going through, and that online group has grown to over 1,300 parents. I have learned so much! I hope that this brings you closer to figuring out the underlying causes of Ryder’s condition. Awareness and advocacy for our children helps others to understand what you and I already know: That our kids are all children of God, and they simply need our love and support to feel safe and secure, and to get through challenges like this. Much love to you all!

  6. Elisabeth
    Elisabeth January 18, 2015 at 11:35 pm | | Reply

    One of my favorite things about you is exactly something you said in your post here:
    the fact that you make it a point to be open and honest about everything that’s going on so others know they are not alone. THAT is one of the most beautiful things in the world. You understand that just one of hundreds of reasons the Lord allows us to go through some of the weirdest, hardest, most confusing times is so that somewhere, someday, someone else who goes through it isn’t alone. You get that everything we go through becomes a part of our ministry later. Even for Ryder. I can only imagine the way that little warrior is going to influence his world for the rest of his life with the knowledge and bravery and insights his little head and heart are learning right now. That kid is going to blow people away. Even more than he already is. I love him. I love you. And I’m thankful for your vulnerability, honesty, and openness. I can’t imagine what you’re going through. But I can love you and pray for you every day. And I am, Beautiful Friend!!!

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