[Brain Dump]

This post may go ’round and ’round a bit… but I feel like that’s what my brain is doing nowadays anyhow.  So if you’re actually gonna read this, please bear with my rambling and rabbit trails.

About a week and a half ago, I wrote a post in which I expressed the relief I felt when I learned we weren’t alone in this whole thing.  (Read that post HERE.)  Of course it’s terrible knowing there are so many other children out there whose lives have been suddenly altered, but I was glad to find community with other parents trudging through the same muddy waters, and it boosted my morale a bit to be able to walk alongside them.  It felt good to run toward these new friends with my arms outstretched as if to say, “We’re in this together.  Let’s share our information and experiences, and be each other’s biggest cheerleaders!”

Fast forward a few days, and it began to feel as though my outstretched arms were being filled with a heavy load of burdens too great for me to bear.  My heart aches for the other families, most of whom are far worse off than we are.  Each time a new family joins the Facebook group and shares their story, it transports me straight back to those middle-of-the-night moments filled with exhaustion and fear and uncertainty.  I can hear the desperation in each new post, probing for answers, grasping for anything that might help.  Some of these parents have flown their children all over the country, subjected them to countless tests, spoken with teams of the best doctors in the country… and yet they’re left waiting, and wondering, and working hard.  Sometimes that “work” feels kinda like a hamster in its wheel.  And sometimes I can feel the panic creep in, and a little voice in the back of my head whispers, “Could we have prevented this?  Should we be seeking second/third/fourth/opinions?  Are we doing enough? 

But through the fog, I hear my husband’s advice loud and clear:  “Don’t get lost in it.”

There’s so much wisdom in such a simple statement.  It’s too easy to get swept away by all the stuff… to become strangled by the heartache and sucker-punched by the realities of this kind of condition.  We have more than our fill of all that without taking on the pain of other families too.  So for my own sanity, I turned off the notifications, and I don’t check in to see what’s new.  I have to choose to turn down the noise… the outside influences… the what-ifs.

Instead, I’m choosing real fellowship, which I’m currently learning about at Women’s Bible Study.  We’re digging into 1st, 2nd, and 3rd John via Kelly Minter’s “What Love Is” and this week we chatted about how valuable it is to have face-to-face time with real life friends who can hug you and laugh with you and let you ugly-cry.  And I’m grateful for the kind of friends who will wrap me in a bear hug and whisper a prayer in my ear.  Or show up at my house with armloads of “love in the form of butter and sugar” and forgive me for my scattered thoughts.  And also for those whom we don’t even know, who feel connected to our story in one way or another, who intercede on our behalf… we may not have anything in common, except for Jesus.  And that’s enough.

Ryan discovered this card pinned to our church's prayer wall while preparing for rehearsal last week.

Ryan discovered this card pinned to our church’s prayer wall while preparing for rehearsal last week.

My friends, whom I can see and hear and touch just the way John saw and felt and touched Jesus (1 John 1:1-4), fill my life with color and texture and joy during a time that is often flat and grey and miserable.

The people-pleaser in me is afraid that I’m abandoning these other ATM/AFM families… that somehow my absence will let them down.  And the “fixer” in me is afraid that I’ll miss out on some amazing breakthrough that will boost Ryder’s recovery or even heal him completely.  BUT…

Be still, and know that I am God.  (Psalm 46:10)

One translation says “Cease striving, and know that I am God.”  So we rest in the knowledge that we are listening intently to, and heeding the prompting of the Holy Spirit.  We’re confident in the team we’ve assembled.  We’re confident in each other.  We’re confident in our God to see us through… to make the best use of this horrible situation, and we continue to pray for a miracle.  Thanks for praying with us!

One Response

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  1. Susan
    Susan January 23, 2015 at 4:54 pm | | Reply

    Your words speak right from my heart and mind. I am exactly where you are it is almost a sort of survivors guilt the Evan is doing so well. I tuned out also it is painful and while thankful I know the AFM family we have created is there when we need them they understand. Evan is back playing baseball and basketball trying to fit in pushing himself and amazing me every day. Could we do more of course should we do more our children will lead us to that decision based off of what their bodies are telling us. For now we stay strong pray for total recovery and strength for all of those who are enduring this test
    “Be still, and know that I am God” Is one of my favorite things to repeat tousrlf in times big trouble or anxiety
    Praying for you all Megan

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