Thursday, January 16, 2020

Welcome to the Thunderdome

My mind split open the other day with some thoughts I need to unpack and an urgent need to write it all out.  I sort a lot of things out at the keyboard, and even if I don’t unravel all the ish I’ve mentally wrestled with, I do feel a bit less burdened when it’s done.

But, ha ha, these aren’t those thoughts.  Those thoughts, with any luck, will have a beginning, middle, and an end.

Welcome to the Thunderdome, because this is actually my never-ending internal narrative.  Well - one of them.  I have several you know (as I’m sure you do, too).  But this particular storyline finds itself at a pivotal moment tomorrow and so I am hoping I can clear the buffered dialogue tonight so I might, maybe, find sleep before tomorrow.

Maybe you remember a tale or two our sweet girl, Rebecca?  It’s possible that I may have mentioned her before. 


Becca, and her kid sister, Libby, have their kindergarten assessment tomorrow morning.  I really don’t even know what it means or entails, but I do know that it is consequential.  And friends, sitting here this evening thinking back on 6 years of so much hard work and facing tomorrow without any way to really advocate for her in the moment…  it feels like her whole life is riding on the outcome.

Let me stop you right there: I know this isn’t true.  This is just a flexion point.  Whatever comes from tomorrow is an arrow pointing us in a particular direction.  We have a sense of where one of those arrows will lead us, and it’s a path we hope to follow.

But we are in the weeds without a compass if we are met with an alternate outcome.

I have a small, trusted circle of friends and we all take our turns at the cliff of fear and uncertainty.  As we have all reminded each other, time and again, all we can do is the Next Right Thing.  Doesn’t really matter what we’re talking about, at the end of the day all any of us can do is take stock of where things are, consider our choices, and do the Next Right Thing.

So tomorrow morning will set us up for another choice.  I know what outcome I’m praying for - and if you are the praying kind, I’ll share some specific prayer requests below.  But if the outcome isn’t what we believe is best, I think the Next Right Thing is for my heart to find peace in the finality that will usher in uncertainty.

Uncertainty, by the way, is not where I thrive.

Two housekeeping items:

First, there are probably a few readers here who know exactly which school we are working with.  We are huge advocates of this place - we drank all the Kool-Aid and went back for more.  I will always believe that it is a setting where children can thrive because they are secure in knowing that they are loved and viewed as capable learners.  But no school is perfect, and we understand that, too.  There are some trappings in this process that are hard to navigate and there is fierce tension between my Mama Bear need to protect and advocate for my child and my parental need to trust these people and this place that we have known and supported for so long.  But the tension is indeed fierce.

Which brings me to the second item of business.  Namely - how you can pray for our family and most especially our squishy little warrior.

This feels selfishly long, but I’ll ask without shame:

  • That we would all sleep well tonight and begin tomorrow rested and refreshed.
  • That I would keep space in my heart for peace rather than fear.
  • That I would trust the people and the process, specifically:
    • that they would have eyes to see what is a strength and not just what is a challenge; 
    • that they would look for and pursue opportunities to support; 
    • that they would extend grace to Becca and to us; 
    • that they would feel confident talking to us before, during or after the assessment if it helps them to walk away with a better understanding of who this amazing and complicated little Image-Bearer really is.
  • That I would have the courage to say these things to them.
  • That Becca would simply be Becca.  That she would do her best work, no more or less.
  • That we would wait with quiet spirits until we have a determination, and that no matter what we learn we would have ears to hear what is the Next Right Thing.

Friends, even if you think I’m not talking about you, please know that you (YES, YOU) are all such a support for us.  Some of you pray, some of you don’t.  Some of you are concerned, others merely curious.  But if you’ve made it this far I am confident that the one thing you all have in common is that you care.  And that care you've shown has sustained us so many times already.  I know it will do it again.

I hope you know how much our family cares about you, and that when you find yourself in need that we can help sustain you, too.

Wednesday, March 13, 2019

Multiple personalities

Having a kid with additional needs has turned me into a different kind of parent. I feel like I'm part bloodhound: I follow every lead, even when it takes me down the wrong path sometimes. I am relentless in the search. I am driven by something I can't see but that I know is there. I have no idea where we'll wind up but I know we are headed somewhere. There is no getting tired, no giving up, no stopping. There is a single-mindedness to the way I spend a great deal of my time, although I don't know what awaits me at the end of the journey.

I'm part bloodhound, and I'm part two year old. I have a million questions. I ask everyone I can, all the time, if they know about this or that. If they've tried something. If they've seen something. If they've heard of this treatment and is it real? or is it garbage? There is no end to the questions I have, nor a lack of energy to ask them.

What's left of me is the mama bear. The one who isn't worried about making friends at IEP meetings. The one who shines a light on someone's BS. The one who calls, and writes, and calls and writes again. The one who looks up research before she makes her argument and doesn't care who gets mad when the fight ensues. I'm the one - we are the ones - who know our kid better than you, better than your PhD, better than your 20 or 30 or 40 years of experience. We are the ones who won't dare let you sell our girl short. Not for a second.

I am all of these things. And I'm imperfect. So imperfect, when I'm tired or scared and my patience runs out. When I demonstrate behavior I won't tolerate. When I put so much energy into the one who needs more that I short change the ones who get by. I don't try hard enough sometimes. I relent to fear sometimes. I check out.

Mostly, I'm a parent who loves my kids, all of them, and is doing the best that I can. I'm a parent just like you, putting one tired foot in front of the other.

And so it goes.

Saturday, December 15, 2018

Cheer Up

Well, despite all my internal childlike protestations that it didn't actually happen, our friend Bill really is gone. Today we sat in a room filled - overflowing - with his friends and family that will have to be proof enough of the truth.

When I found out he was sick I knew I'd never see him again. I'm a coward, as it happens, and I knew all that would come of that visit would be Bill expending precious energy on counseling me - about death, and faith, and grief, probably. But I guess even cowards have the capacity to understand how selfish that would be. That doesn't mean that I didn't say my goodbyes. Instead of facing him with my throat choking out a word salad of gratitude, I did the one thing that I can always count on. I wrote to him.

Bill was a lot of things in his life - musician, a theologian, a veteran, a father - but in my life he was a pastor and friend. To borrow an overused but entirely appropriate metaphor, Bill was a gentle giant. And he was funny, and thoughtful, and really smart. He was honest but not cruel. He liked really spicy food and really good coffee. And he always had a good book to lend when you needed it.

Bill was a person I knew I could turn to for wise counsel. He helped me navigate hard relationships and ugly emotions and never made me feel bad about being the flawed sinner I am. But what I'm most grateful for is that Bill, whether he meant to or not, helped me find a faith I could live with. I'm pretty sure he wouldn't like the sound of that but it's true.

This is the last thing I told my friend.

"It's sad how life takes everyone in different directions and you so easily lose track of those relationships that really matter. Or maybe that's just one of my failings. But I'm thankful that I get to count you as a friend. You've always been one of the most genuine people I've known. You have the best smile in the world. You've offered counsel I always knew I could trust. And you said something to me when I was losing Mom that I have carried with me to this very day; to be honest, it changed the way I think about life and death and where God is in the middle of it all.  
So, you know - no big deal."

Bill said goodbye today with this song, a pastor and friend to the end.

We will miss you so, so much.