Nicole K. Twedt

Being Brave When Life Is Hard

Hope, Always Hope

by //

All day I’ve been wanting to write about tomorrow, and what’s going to happen.  As it turns out, Greg and I are in the middle of a painting project and, although everything in me wants to sit at the keyboard and type, it wouldn’t exactly be the kindest of choices.

I’m going to spare you the details of our home improvement project.  This isn’t one of those blogs.  Nope, I’m not into writing about finding the perfect gray paint at Sherwin-Williams.  The perfect gray is a lie.  We have ten to twelve sample shades of gray ranging from Nebulous White to Krypton on the walls of our small rambler to prove it.  We decided on a lovely shade of blue-gray called Passive which is the less complicated choice, prettier too.  My life is complicated enough without factoring in the hunt for the perfect gray.

Kate did find the perfect gray.  I remembered reading about it after the fact.  So did my neighbor and my friend Sarah who came by yesterday to get our old piano, as did the Frontier guy who hooked up our Fios connection.

I’m hardly a DIY kind of writer, but I could easily get behind writing about feelings regarding home improvement, and how I felt about each choice we’ve made.  I’m a feeler through and through.  You know that by now.

But I won’t. No one wants to read about it, not even me.   Instead, I’m going to spend five or so minutes copying and pasting old Christmas letters to give you a picture of tomorrow morning and why I’m feeling (more than) a little anxious.  I realize this method is a bit disjointed.  My apologies.  It’s all I have time for.

The beginning of Lauren’s hearing story, 2013.

“I’m learning that faith is of the mustard seed variety. The unexpected happened this spring when our tiniest tiny was suspected of having the same type of hearing loss originating in the same ear at the same age as mine. How we wrestled with this one.

Our fears were confirmed in May. Lauren was diagnosed with a high-frequency hearing loss in her right ear not present at birth. Since the pediatric audiologist was unable to complete testing due to the sleepiness of our little one, she ordered us back in July, three days after Lauren’s second birthday. Until then we could only guess where Lauren’s hearing fell on the mild to moderate hearing loss spectrum.

We prayed and prayed, but our prayers were the half-hearted kind. Frankly, I didn’t believe God would heal Lauren’s hearing loss because he hadn’t healed mine. On this side of heaven we will never know why some prayers are answered and others aren’t, at least in the way we anticipate.

But he knows our wildest hopes and deepest hurts, for us in the area of hearing loss and deafness. He knows our fragile faith, tiny as the mustard seed, almost too delicate and afraid to voice. He held these in his tender hands and said Yes. On July 16, Tympanometry for both ears showed perfect curves where once there was none in the right, indicating normal middle ear function, followed by a perfect Audiologic Evaluation for both ears. Repeat tests in October yielded similar results. Thank you Jesus, thank you. And thank you those who came around us during our season of darkness. Your faith encouraged us and your prayers reached the throne room of heaven. Amen and Amen.”

And then came 2015.  I wrote about learning how to be brave and holding onto hope.

“A heartache worth sharing has to do with hearing. It always does. I took Lauren in for her annual hearing check in October. On the way to Children’s Bellevue my phone was stuck on You Make Me Brave by Amanda Cook and Bethel Music, which is my current favorite since Courtney sang it last spring. I didn’t realize I had it on repeat. I guess the technical term is loop. I didn’t even know my phone looped or that it could get stuck on loop or that I had a loop icon to begin with. Come to think of it, it might not be called looping.  All I know is that I just completed an iOS update and everything was wonky with iTunes. You Make Me Brave filled our van over and over, at least 7-10 times on our way to Bellevue because Lauren and I took the backroads to avoid 405 tolls.

As your love

In wave after wave

Crashes over me,

Crashes over me

For you are for us

You are not against us

Champion of Heaven

You made a way for all to enter in.

I’m pretty sure God wanted me to know that his love for Lauren crashes over her in wave after wave. He is for her, not against her. You see, the Tiniest Tiny has lost hearing again, this time in her left ear. This is not the same ear that hearing was lost and restored when she was little. Her loss is conductive (mine is neurosensory or sensory-neuro) and is borderline normal. Although she isn’t technically hard-of-hearing at this point, Lauren’s hearing is not what it once was in that ear. We made an appointment for another hearing evaluation in 3 months. Until then I was told to have her pediatrician clean out her waxy ear because one of the tubes is out but stuck in ear wax. The audiologist is certain that a damaged eardrum will be revealed under all of the lovely wax. My heart broke.

I remember looking at my phone when we left Children’s. The loop icon, if it’s even called that, was not showing. Yet the whole way back You Make Me Brave repeated over and over.

You make me brave

You make me brave

No fear can hinder now the promises you made.

It makes absolutely no sense. It really doesn’t. It’s really hard to be brave when there is something wrong with your child. Despite all that, maybe even because of it, I think being brave means having the courage to believe that God is who he says he is and trust that he will do what he says he will do. And if we’re not sure how to pray and what these promises are, we should ask him. The Bible is pretty clear about them. I’m sensing in the deepest places of my heart that it is not the time for wishy-washy “heal her if it’s your will” prayers. It’s time to call on God to do what he promised even when it doesn’t make sense. He healed her once before. Why not again? It’s time to be brave.

When I look back over these 12 months, and back further over the last two-and-a-half years, I have to remember the promise he gave me about Lauren during her first hearing crisis before he healed her. In my deep place of hurt I wasn’t sure he was for us, but he led me to discover these words about himself, “He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection (Psalm 91:4).”

It didn’t make sense at the time, and it doesn’t always make sense now but I know him, I know him well. This potential hearing disorder, it isn’t from him.

I risk ending this note with a faith story equivalent to a cheesy After School Special. Yet I kind of have to. I have to end in hope because what else is there? It’s December and we are hopeful.

I took Lauren to the pediatrician to have her ears cleaned, to see if the tube could be removed. Under all that wax was a perfect ear drum. Perfect. The pediatrician strongly believes that a combination of one very waxy ear and a tube stuck in wax resulted in a less than normal hearing test. She believes that February’s evaluation will reveal perfect hearing once again. It scares me to write this. Not that I don’t believe Lauren’s hearing has been spared once again. I don’t doubt it for a minute. I’m a little worried that I will write about her healing and then it won’t happen and people will think I’m a nutcase. More so, I’m deeply worried that someone will read this and think God loves Lauren or us more than he loves them. Nothing is further from the truth.”

I’m sorry for rambling on and on.  But Lauren’s story got a little dicey as it unfolded in 2016.

“As for Lauren, I think we’re a little shell-shocked by her story. It knocks the wind out of me, even now. I wrote last year about waiting for February for the follow-up with the pediatric ENT and audiologist to learn more about her hearing loss. How we prayed in the months between visits, many of you prayed, too. I could almost taste the good news that we hoped to get at the upcoming visit to Children’s Hospital. After all, a few years ago Lauren had lost hearing in her other ear and it was fully restored. And we knew from Lauren’s pediatrician that her eardrum had been spared.

Lauren’s story, however, ended up being a story with a twist. We didn’t get the answer we wanted when we wanted it. Something was wrong with the Tiniest Tiny. Lauren had lost more of her hearing.

In the darkness of night we had to abandon our victory dance and learn instead to simply cling to God. We had to learn to let him hold us as he whispered that he is good, always good, that he’s never going to let us down, the whole time feeling that he is.

And then we received the news we dared to hope for.  At another follow-up at Children’s, a specialist assured us that Lauren’s ear could indeed repair itself over time, as ears sometimes do after trauma. When summer came to an end, the same specialist broke the news that hearing in Lauren’s left ear, the one that was lost and lost again, was practically normal, with the potential for more healing to come.

I could have saved time and just skipped to the good news about Steven and Lauren (Steven had a story of his own in 2016). Or I could have ignored it all together and just wrote the typical family Christmas letter. It’s what normal people do and would have been kinder to my sensitive heart. I most definitely should have included more details about Em. She’s an absolute doll, and she’s thriving by the way.

But it’s kind of hard to truly rejoice with us unless you know where we’ve come from, what we’ve been through. Because for us, and many of you, it’s been a year of camping out in the middle of the story, with all the uncertainty that comes when victory is out of sight and the days are long and hard.

Yet hope and uncertainty go hand-in-hand, with hope winning out every time. I desperately want to shout this message to the world, or at least write about it more. I’m sensing in my bones and in the deepest part of my soul that now is the time to write.”

And now tomorrow.

I’m going to quickly wrap up so I can get back to paining my house Passive gray.  The reason I did all that copying and pasting nonsense is because tomorrow is the day of Lauren’s annual appointment with the audiologist at Children’s Hospital.  I’m feeling all the feels.   It doesn’t help that one of my audiologist friends recently pointed out that, since my mom and I have a genetic hearing loss, Lauren most likely does too.  It means the Tiniest Tiny could loose hearing again.  I hadn’t connected the dots.

Please pray for us, for Lauren particularly.  I’m holding onto hope, praising God.  I will always praise him.  Not matter what, I will praise him.  But I’m scared.

At the same time, I was reminded this morning at church that God still heals the deaf.  That wasn’t the point of the sermon, but what I needed to hear.  Oh, how I needed the powerful reminder, the encouragement.  God is for Lauren.  God is not against her.  God is able to accomplish infinitely more than what we dare hope for.

That is all.  I’ve got to publish this and get back to all things paint-related.  And quickly too.  I can hear Steven in the other room pestering Greg with a million questions about painting.  Oh dear, I think Greg’s letting him paint.

I love you, dear readers.  All two or three of you.  Thank you for praying for my girl.  Thank you for hoping and praying along with me when life is uncertain and kind of hard.  Thank you for trusting with me in the Name of Jesus.

Edited to add: In the spirit of keeping it real, I should add that in the short span of time it took to publish this little essay-of-sorts and post it to Facebook, Lauren wandered into the living room and splattered herself in fresh paint.  At least she’ll never have to search for the perfect gray.  While hunting down the paint stain remover to treat Lauren’s Hanna Andersson sundress, I managed to knock over and shatter a new bottle of Opi light blue nail polish over the toilet, tile, baseboard and wall of the master bath.  

The moral of this story is that good things never come from blue nail polish.  And always watch your kid instead of sharing your blog post with Facebook Land when your husband is painting the living room’s walls Passive Gray.

Undoing, Rebuilding

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This summer is clearly not the time for me to devote myself to writing.  And that’s okay, except when it isn’t.  What I lack in writing time is made up for under under the Seattle summer sky with the Twedtlings.  Summer vacation has also been a time to work on Chloe’s Behavior Modification Plan For Anxiety.  That’s right, my little dog has a Behavior Modification Plan For Anxiety.  I won’t bore you with the details of why we even need a Behavior Modification Plan For Anxiety in the first place.  You’re welcome.

Actually, it’s a comfort to known that our dog, who hasn’t a care in the world other than wondering if she’ll be fed sometime around  7 a.m. and again at 5, struggles with anxiety.  So do I.  It’s freeing to say it out loud, and for certain, that Chloe’s anxiety is hardly an issue of not trusting God with life’s worries.  Not enough faith is hardly the point when you’re covered in fur, or silky hair if you are of the Havanese-variety like Chloe.

In the end, all it took was a stroll or two around our neighborhood with Chloe and a snack-size Ziplock baggie of carrot pieces, allotted every few houses or whenever we encountered a walker, biker, car or animal.  It’s a scary world out there, but our little dog is overcoming.  Greg rolls his eyes every time I turn to Chloe and say, “Chloe, you are a brave, brave doggie.”  But it’s enough to somewhat bring her through her funk.  There’s hope for us all.

I’m enjoying my time outside with the dog.  The Twedtlings are not.  Almost everyday during the school year we walked to and from our neighborhood elementary school, about a half-mile distance one way, with minimal complaining.  Or is it a quarter-mile?  I’m really not sure.  Distance has never been one of my strong points.  Yet our brief walks around the neighborhood are torture to them now. With our grey-blue rambler still in sight, you can hear from our little band of walkers: “Are we there yet?  Do we really have to do this?  It’s too hot?  Mom, is this what you’d call a scorcher?”  Spoken like true Seattleites.  We don’t know what to do with ourselves when outside temps finally hit the seventy-five degree mark.  No matter the weather or distance, Steven’s rants revolve around the iPhone I won’t let him have.  “Can I get a phone?  Why can’t I have a phone?  Everyone has a phone.  How about when I’m ten? thirteen?” This is the typical soundtrack of our kinda-sorta daily to twice-daily walks.

Chloe’s carrot-on-a-stick comes in a baggie, but the kids’ promised carrot is a stop at the Little Free Library two streets away and perfectly timed near the end of our walks to cheer them on and keep them going.  I’d walk for books, free or not, and so will they.

I’m not sure what’s up with walking, but something about it removes the fog in my mind and leads to reflection, stirring something deep within me. The splendid concoction of exercise and fresh air?  Probably.  Usually my deepest of deep thoughts are born out of a session of writing.  I’m sure you’ve picked up on the theme of my life: I write to discover what I’m thinking, feeling, learning. Yada yada.  I’m learning that walking, being outside, even playing the piano, all these activities, well, they also quiet my soul and help me make sense of God, myself and the world around me.  This summer has been lacking in writing time, but the thinking, the deep pondering, it’s happening anyway, especially during summer walks with the kids and Chloe.

I didn’t realize I was making a point but it’s clear to me now that God cannot be limited in how he chooses to speak to his children, even if he has worked a certain way in the past.  He has a knack for showing up whenever and wherever.  This revelation shouldn’t come as a surprise to me.  He’s God, after all.

This summer has also been the Summer of Reading, even book launches. You’ll hear more about these yet-to-be released-titles and how God is using them to speak to me when it’s time for me to write more about them.

Speaking of books, back in late May or early June, I met Lindsey in Bellevue.  Over chips and salsa and frozen fruity drinks, she told me about Sara Hagartey’s Every Bitter Thing is Sweet.  I don’t remember if I had the self-control to wait until the next morning to reserve Sara’s book from our local library, or if the book-junky side of me won out and put a hold on the book right then and there via Sno-Isle’s online library system.  I’d like to think I’m socially aware enough to wait, but once a book nerd, always a book nerd.  Either way, after a few day’s time, a text banner flashed across my iPhone screen announcing that Lindsey’s book recommendation was waiting for me on the hold shelf at the Mill Creek branch of our local library.

But I couldn’t read Every Bitter Thing is Sweet.  In fact, I waited the duration of three renew cycles before I picked it up, knowing deep down that something hidden in the words of the little blue book with the vintage bottle of honey on the cover would change me.  I’m a change-resister through and through. That or just plain stubborn.

Which brings me to a delicious summer morning in July, just after the Tiniest Tiny’s sixth birthday.  Emily and I were lounging around the family room in our PJs, my big girl on the love seat, I, curled up at the end of the matching burnt red-colored couch that used to be trendy but now is not, kind of like the entire decade of the 90s.  The other two played at the oak farm table in the dining room with their construction paper and Scotch tape creations.  Starbuck’s coffee tumbler of Tony’s French Royale Dark Roast in my right hand, book in my left, cream-colored throw blanket that’s unraveling (compliments of Steven) covered my morning-chilled body, little dog on lap, tears flowing.

You see, God always has something to say, to remind us of his presence, even when his presence seems to come out of nowhere.  Tears cascading down my cheeks, I’m reminded once again in Sara’s book that God is here and has a lot to say about undoing and rebuilding.  Sara writes about her early marriage but my mind makes a connection to another time and another place.

It’s an evening in early spring, not long ago.  I’m at Emily’s house in North Seattle for our Writer’s Connection Group. It’s just past 9 p.m.  I know the time because Kimberlee and Meagan had to leave by nine.  Emily is telling Kate and me about her project, Kindred Mom, and how motherhood is the place where she found herself.  I joke that motherhood has been my undoing. I’m trying my hand at comedic timing, but my statement is a confession all the same. Every day, the parenting struggle is real.  Each day, while mercies are new, so are opportunities fall short of my expectations, to fall on my face.  Like when I lose it in front of my children, especially my child who has special needs.  Parenting is not what I thought it would be.  I’m not who I thought I would be.

Undoing.  Rebuilding.

Random connections in the form of ADHD is a rare gift, and the message my heart is desperate for, as sappy as it sounds, breaks through like a radiant sunrise, the dawning of a new day.  And just like that, God gently or not-so-gently sweeps in and whispers to my soul that what I see as failure, what I view as my undoing, he sees a radical rebuilding.  What appears to be a disaster is simply the ongoing story of rebirth, of being brave when life is hard, a showcase of a life being transformed in real time by his grace and his great, great love.  Once again, his kingdom is an upside down kingdom.

This summer is clearly not a summer devoted to writing.  It’s going to be okay.

Writing Anyway

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Photo by Tetsuya Tomomatsu, Unsplash

I used to check email regularly.  When an email first appeared in my inbox, it was promptly read, replied to, and deleted.  An email was saved only if it were extremely important, like my correspondence with Seattle photographer Elke Vandevelde.  There’s nothing pretty about my inbox these days.   I don’t know why, but it actually feels like the walls are closing in on me when my emails won’t fit on the same screen, a silly response to a first-world problem.

Email isn’t the only thing I’ve let slide.  This blog, I’m sorry to say, has sat neglected like the cardboard carton of Thai Jasmine rice in the back of our fridge from the last time we had take-out.

You see, it’s been a few months since the morning I met Jody at the Panera at Renton Landing and nicolektwedt.com went live.  I knew then (and I know now) that having a place to write is more important than having a pretty blog.  Even so, I assumed that I would have this blog-thing figured out by now.

Dear friend, I still don’t have my act together.  Perhaps you’ve noticed.  There’s no way to leave comments on this blog.  There’s not even a way for you to contact me.  I still haven’t subscribed to Mail Chimp or Tiny Letter so you can’t read posts when I actually write them.    I wonder at times if I have what it takes to be brave and make this writing place happen.

Ah well, baby steps.

Perhaps being brave in this situation means to keep writing anyway.

There’s more  We’re going through something with our middle guy, Steven.  I’m optimistic about his situation, honestly I am.  All the same, at the end of a long day of parenting a unique child and his sisters, I’m done.  The last thing I want to do is work behind the scenes on this blog.   I just want to write.  Or binge-watch a series on Netflix with Greg.   Our read a few chapters of Yaa Gyasi’s Homegoing while he watches yet another episode of Heartland.

And that’s okay.

This little online place will come together in time.  Thanks for being patient with me.

N.

Edited to add: I don’t know how I did it, but there’s a comment section following this post!