Nicole K. Twedt

It’s the afternoon of June 13, my thirty-first birthday.  I’m not a fan of tank tops but I’m wearing one.  It’s white, ribbed and has lace across the bodice. The weather outside is intense for the Pacific Northwest, intense by anyone’s standards I think.

Our family of four (two adults, one surly toddler and infant son), seek sanctuary from the soaring heat in a crowded but air conditioned optical shop in Woodinville, a small town east of us.

K. slips the lime frames on my not quite six-month-old’s round face.  He looks at me and smiles.

“He’s seeing your face for the first time,” K. gently tells me.

I hadn’t realized his vision was that bad.

***

Steven is our sensitive yet larger-than-life middle child. He’s now eight-and-a-half, going into third grade in a few weeks time.  We guessed something was up with his eyes after my mom uploaded a photo of baby Steven from her tiny camera screen to her computer.  On the large monitor, it was easy to see that Steven’s eyes weren’t quite right.   One eye, the right eye, drifted quite a bit.

I don’t have time (or the attention span) to go into it all.  In a nutshell: Steven is a kid with extreme vision impairment.  Without corrective lenses, he’s significantly farsighted, lacks depth perception, peripheral vision and other vision essentials.  I’m not going to get into the Morning Glory junk.  Morning Glory Syndrome is the birth defect Steven has in his right optic nerve.  It’s complicated and Steven has a rare form of it.  I won’t explain MGS but I’ll talk about it a bit later on.  You can google it if you’d like.  Or read about it here.

I’m going to be proactive and save myself time (and sanity) by copying and pasting old Christmas letters to tell the tale of Steven’s vision, much like I did a few weeks ago when I shared the hope and heartbreak of  Lauren’s hearing loss journey.  How you rallied around us and prayed for our girl.  Thank you.

I never let you know how her appointment turned out.  Basically, hearing is as it was at the last check.  Stable, but not quite right in the left.  Not bad enough to qualify as hearing loss.  But not what it once was in that ear.  Friends, please continue to pray.

But this is Steven’s story.  Back to him.

The only Christmas letter I’m missing is the one from just before Steven’s first birthday.  My old computer crashed, you see. I have a hard copy somewhere.  Unfortunately, it hasn’t showed itself yet.  The tidiness factor of our house is so-so.  I pretty much run out of steam before I get to my bedroom.  2009’s Christmas letter is in there somewhere, I’m sure of it.

I do know we met Dr. P, Steven’s pediatric optometrist, in June of 2009.  Steven was diagnosed with albinism.  We were told that Steven was albino and had “blonde eyes.”  I don’t even remember what that means because the albinism diagnosis didn’t stick.  I don’t think albino is the politically correct term anyway.  I don’t know what is.

Nevertheless, our little guy was fitted for glasses and we met K. for the first time at the little optical shop in Woodinville. For many years K. was Steven’s beloved optician.   I wrote already that Steven was fitted for glasses.  I’ll mention it again because this was one of the best gifts I’ve ever received: my baby seeing my face clearly for the very first time, on my birthday to boot.

As stated, Morning Glory Syndrome was the next diagnosis.  I’m not entirely convinced Steven has Morning Glory.  We’ve had three opinions, and they disagree.  Anyway, in 2009 we met the head of ophthalmology at Seattle Children’s Hospital.  Around the same time patching began, and so did contacts, maybe around thanksgiving.  Don’t get me started on infants and contacts!

I seriously wanted to move to the eastside to be closer to Dr. P’s office.  We were in her office multiple times a week.  You see, just about every time he cried, Steven lost a contact.  As his sensitive spirit emerged I didn’t really let Steven cry it out.  It was the worse thing I could have done for him.  But even if he wasn’t crying much, babies cry.  And when he lost a contact we had to see Dr. P, as it was more than a two-person job, at least for us.

Now the copying and pasting begins.  I’m not above plagiarizing myself and those Christmas letters from Steven’s early childhood.

2010

What if Steven is healed?  What if his vision is fully restored and eye muscles stabilize?  What if?  These are the dreams dearest to our hearts, what we’re hoping for, praying for and waiting for.  My heart hurts thinking of the last year and a half and all we’ve been through with Steven.  In January we received a 3rd opinion, which we were certain would be positive, only to find that Steven really does have Morning Glory Syndrome.  Less than 1 in 5 million folks in the US have MGS, and our little guy has a rare form of it.  Nice.  Then around the beginning of the year, a spot on Steven’s optic nerve was discovered.  Now the word cancer was never spoken aloud, but after loosing my dad to cancer that’s exactly where my mind went.  Turns out everything is fine, and we’re praising God for it, but under doctor’s orders we had to put our boy under anesthesia for a MRI to make sure nothing was wrong with his brain, which happens with MGS.

The latest is that Steven’s right optic nerve is normalizing.  We were told this happens with MGS but it always goes back.  It’s not gone back.

Do I dare say miracle?

I’m trusting that God fearfully and wonderfully made Steven’s eyes.  He’s a loving Father who has amazing plans for them, plans to display his glory, splendor and majesty, along with his goodness, compassion and love.

Back to my question:  What if Steven is healed?  Well then, God will certainly be glorified because it wouldn’t be for Steven’s effort!  Our lively one fully mastered the ability to remove contacts, constantly warps the frames of his glasses beyond recognition, and damages lenses from chewing on them.  Though I must say, Steven’s specialty happens to be ripping off patches with a vengeance  It’s all supposed to get easier as he gets older.  Frankly at just shy of two, Steven is stronger and more determined not to cooperate than he was a year ago.  Let’s just say we are hoping for the day when we only have to take Steven in for annual eye exams, like Emily.

2011

Steven’s eyes are constantly changing.  The right eye, the one touched by Morning Glory Syndrome, is getting better and better with each visit.  And the left is starting to catch up.  There’s been only the slightest change in that eye, but it’s enough improvement to need a new lens.   All praise and glory to Steven’s Healer!  We’re thankful for all of Dr. P.’s help, too.  We press on, not knowing what’s ahead, claiming victory and hope for the day when Steven’s eyes are perfect in structure, strength and vision.

2012 was less about vision, more about Steven’s puppy dog antics.

We have another little one in school this year.  We were blessed to find a preschool for Steven that is literally 5 minutes from our home.  We are so thankful to God,  and Tonya, the mom-friend from ballet who told me about the new preschool.  I love how God puts people in our life at just the right moment.  I also love that our son’s teacher totally gets him.  After all, she is the mother of 8-year-old twin boys.

The bad news is Steven still turns into a dog.  He even has names for his alter egos: Buster, Chocolate Chip Mint and Woof-Woof.

“Where’s Woof-Woof going today?” Steven constantly asks.

“I don’t know about Woof-Woof, but Steven is going to preschool,” is my firm response.

Goodness child, this is getting old!  However, just last week I was encouraged by some of my girlfriends to embrace Steven’s inner doggy and now we are using it to our advantage.

Heard around our home: “Be a good little doggy and pick up all of the dog bones (toys) in your dog house (room).”

Never in a million years did we think we’d parent like this.  But really, how else do we train a kid who thinks he’s a dog? Obedience school?  Clearly we need something.  Just yesterday I caught our naughty little puppy dog under his beloved train table, naked, sneaking the last of daddy’s Christmas sugar cookies.

2013

“Miracles are happening.”  To hear Dr. P. say in October that Steven’s optic nerve is “more normal than ever,” and that we are “witnessing a miracle,” is beyond exciting.  He still needs plenty of prayer and much is unknown regarding his eye structure and vision.  Yet we’re thankful for the good work continuing in our sweet boy’s eyes.   We keep on praying and trusting Jesus until the day Steven’s healing is complete.”

2014

Again, not really about Steven’s vision.  This update has everything to do with Steven’s #1 love: dogs.

Today is October 31 and I am writing our family’s Christmas letter.  This is a new record even for me.  Greg would tease me mercilessly if he knew I was at the computer writing about Christmas on Halloween.  But in a little over 24 hours life as we know it will forever change.  Tomorrow we are getting a puppy.

Let me back up a bit.  There has been a striking similarity in the last three years between Steven and Skippyjon Jones from the children’s book of the same name by Judy Schachner about a Siamese cat-boy who imagines himself part of the Chihuahua world.  But instead of a cat we had a five-and-a-half-year-old man-child whose antics parallel all things canine.  All the growling, all the barking, all the time.  Until last spring…

(Last spring)

Mom: “Steven, you must stop acting like a dog.  Seriously, Buddy, if you ever want a dog you’ve got to stop being a dog.”

Steven: (Silence, golden silence.)

And just like that his dog days were over.  Which brings me back to tomorrow.  In the name of positive reinforcement, we will drive an hour-and-a-half north to Ferndale to bring our Havanese puppy home.  Her name is Chloe.  She’s teeny tiny, hypoallergenic, and just about the sweetest non-human creature we have ever met.

2015

As for the first-grader, it turns out that Steven-in-the-middle is an awesome soccer player.  We’re not sure if it’s good or bad, but our boy was christened with the nickname The Beast by his assistant coach.

The Beast has a gift.  The Beast didn’t get his soccer moves from his parents.

It’s trilling, watching Steven play.  I cried a bit during soccer season, at how little his vision impairment affects his life (like not at all).  I never thought I’d thank God for sports, but I did. Every single game.

We’re still praying for healing for his eyes but until then, God has shown over and over that he goes before and after Steven in all his crazy kid endeavors.

2016

It’s been a year of setbacks and a year of great rejoicing.  I hardly know where to start.  Steven lost vision over the summer, you see.  It was truly alarming.  Our little boy had to do an extremely hard thing for a little boy to do.  He wore an eyepatch six hours a day over his strong eye, mostly during elementary school hours.  It was a small setback, compared to how far he’s come, vision-wise.  And his suffering pales in comparison to the story of a young lady at our school who will go blind after complications from a kidney transplant.

But heartache is heartache.

Patching for six hours is quite the ordeal for a little kid acutely aware that he is different than his peers, though we promise he’s loved all the same.  I gathered Steven in my arms several times during the summer and into fall, all seven plus years of him.  Over and over and over again, I declared one of God’s promises.  The promise that Steven is deeply loved and not alone when he does the hard work of patching.

And then, about a month ago we learned that Steven’s hard work paid off.  He has regained sight, thank God, and patching was reduced to three hours a day outside of school.  We breathed a sigh of relief and offered up trembling hands in praise and thanksgiving.

The Newest News.  The appropriate word is latest, but whatever. Alliteration. 

February 11, 2017

Copying and pasting my Facebook status after Steven’s appointment:

To all of my friends familiar with Steven’s vision story: we received the best news from his pediatric optometrist yesterday.  For the next three months we only have to patch two, yes two, hours a day!  In almost eight years, minus the times we’ve had to use eye drops to blur vision or left a contact out to act like patching during infancy and toddlerhood, we have never, ever had to patch for only two hours!

You guys, this news is the best news ever!  I’m so thankful and excited and absolutely feeling every single feeling in between, and you all know I have big feelings.

Not only that, Steven’s behavior was nothing short of amazing during the exam!  He even held the door open for me several times.  He was polite and conversed well with Dr. P.  For those who know my out-of-the-box child, you know this was a day of double miracles.

The heart of this mama was dreading Steven’s appointment.  We’ve received such good news, but also much bad news during our visits with the pediatric optometrist.  I will praise God after each type of visit, but oh, what a relief!

In response to our good news, the Presbyterian girl in me can’t help thinking of the Doxology.  My voice is shot from this cold and I can’t breathe well enough to sing it, but I’ll write it here for you, after all, writing is my jam.

Praise God, from whom all blessings flow;

praise him, all creatures here below;

praise him above, ye heavenly host;

Praise Father, Son, and Holy Ghost.

Amen.

Last winter after Steven’s glasses broke.  Again.

I would need to be calm and cool.  Our favorite technician, K. could tell Steven’s glasses didn’t accidentally break.  Sigh.  The Holy Spirit and mama intuition is telling me he’s angry that he’s different.  Little Nicole hated her hearing aids for the same reason.  Grown up Nicole knows it really doesn’t matter.  You have to do what you have to do to see or hear.  Now is the time to wear glasses, anyway, the bigger and bolder the better.

It’s hard to explain these truths to an eight-year-old.  He’s still learning that God loves him and doesn’t want him to be the same.  In fact, God sets us apart on purpose.  We are uniquely made and he calls us his own.  It hurts watching my son learn this one, but learn it he must.  We all need to be reminded of this painful yet life-giving lesson from time to time.  I know I do.

We went back to see Dr. P. in May.

We were told to continue patching for two hours daily.  Steven got new glasses.  His first big kid frames, not the bendy little kid kind.  Dr. P promised he could give up patching on his ninth birthday.  Before you get too excited, at a certain point eye muscles aren’t going to respond to patching.  It’s exciting all the same.  Just think of it, no more patching in merely six to seven months!

I went with Steven and the second grade class to the Pacific Science Center in Seattle in late May or early June.  I just explained to my friend and fellow chaperone that Steven can’t see 3-D.  We were at an IMAX movie for part of the field trip.  During the film, Steven grabbed at the air around him.  Does this mean he can see 3-D?

Which leads to this Monday, Greg’s birthday, solar eclipse day.  It’s been three months.  It’s time to trek to the eastside to see Dr. P. (Edited to add: Steven’s appointment is actually Tuesday the 22, I found out later.  But wouldn’t it have been awesome to have his appointment the same time as the solar eclipse?)

Tribe of friends, family, prayer warriors, please pray.  I would love it if you took a moment or more to pray for Steven’s eye exam.  It would be great if Steven’s eyes improved, and patching for less hours hasn’t negatively impacted his vision or eye structure.  My mama heart can’t handle the thought of retina detachment, which sometimes happens with Morning Glory.  Always pray against that.

To him be the glory either way.  Though I confess, my heart is set on good news.  We will be brave no matter what because he is here, never far off from the brokenhearted.

Steven’s vision has come a long way since that June afternoon in Woodinville.  Through the years God has used Steven and his eyesight as a divine avenue.  Through it, he’s teaching me to be brave when life is hard.  I don’t mean without fear or anxiety.  I have plenty of that.  No, being brave means charging ahead only because I’m clinging to God and letting him hold me through the sea of unknowns.  And as I cling to him, I’m learning just how scary and exhilarating, even satisfying, it is to praise him in such times.  It hurts to acknowledge that he cares for Steven even more than I do.  It seems impossible to this mama, but true all the same.

There are worse things than being far-sighted, I know.  There are worse things that can happen to a child than Morning Glory Syndrome.  Definitely. Still, it would be awesome if there’s major improvement in our little boy’s eyesight tomorrow.  We are holding onto hope, clinging to the truth that God is our loving Father, never far off.  He hears each and every prayer.

Edited to add: The appointment went fabulously.  I haven’t the chance to write about it, properly at least.  This is what Dr. P said at the end of our time together: 

“You’re going to write about this, right?”

And, “You should probably include this in next year’s Christmas letter.”

You know me well, Dr. P.  You know me well.