In the Blankets

"How did you get writing on your neck?" Daddy asks Jane.

"Oh, it's probably because I had a pen under my pillow last night, and it wouldn't write on my arm."






The days page by and we play. Blankets and forts.






"Hey, I have cowboy underwear on, and I'm wearing a cowboy hat!" Jack strides in. Sweats and a dress tie complete the look.

Later, I notice a red waistband, "Your unders are on backwards the tag's in front."

"I'll fix 'em tomorrow," he says and faces the day with a smile.





Lulie's only lost a couple of contacts. One was tucked up in her eyelid above the iris. Apparently, she sports quite an acreage up there. At least it wasn't dried and crunchy when we found it. :) Speaking of crunchy, any of you contact people ever re-hydrated a dried up contact and used it? It looks fine.






And every day the children smile, laugh, test the boundaries, and rebound with ease. Resilient. I take note. Days pass like tides washing in and out. I'm more tired and worry less.






Miracles.

"Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see." - C.S. Lewis

The Management

"I don't know where it came from," she says, "but I put it on my face like make-up." Glitter, it's good for almost anything.

In other news, dilating drops smell like violets AND so do my hands. You'd think I'd be a pro after a modest 47 drops of various sorts in the last five days, haha. I also placed and removed Lulie's new contact lens four times today. Yay! It's clumsy but hey, we're doin' it! :) Since I'm on a roll as amateur med student I also super-glued my left index finger after a bad encounter with the bread knife. Worked GREAT.

{sigh}

Another good day.

Sunglasses

Dilated pupils do have benefits.






Momma and Dad buy you SUNGLASSES!






Think she likes them? They'll be dilated for six weeks.





Now, tomorrow we get a contact lens and this precious eye will be fully operational. Hard to believe it's totally blind right now!





Patching will be a breeze after this!

***

Jack grabs Lulie's hands, "Are you singing for joy for me, Lulie?" She giggles. He off. She sings a jumble of ABC's and runs after him.

The world is still simple.

The OR

"Jesus love me, this I know," I sing the words.

A nurse with white skin and pink cheeks administers sleeping gas. It's a mask, but Lucy doesn't mind. Her eyes flutter. She waves an arm. I hold her small pudgy hand and lean close. "Yes, Jesus loves me - - yes," the chorus encircles us. She's asleep and still I sing out the last words.

So many blue gowns and each one waits. And still I sing. All the perfection of a surgeon's team, the intersection of man and science, microscopes and scalpels that make 1mm incisions, precision, and still, they wait for my song's end. An unexpected reverence.

"Can I kiss her cheek?"

"Yes, you may."

Another nurse whisks me away. I feel as though we walk on water.

Post-Op

Before surgery.





Waiting to leave.





Relatively un-phased by the whole thing.





Sweetie.




Waking up. Slow. Post-op.




Ready for food again.


{Sigh} Thank-you, LORD!

First thing, our surgeon said the cataract was much bigger than expected once he opened the eye. It's amazing she could see so well. The Lord is good. Thank-you for your love and prayers. Now contacts and patching and grace. Day by day. Thanks.

Surgery

So, it's a go.

Tomorrow. Wednesday.

Check-in 7:15 am. Surgery 9:00.





Would ya'll mind praying?





Lord, if you are willing, I know you can heal me.





A grand request.

A grand God.





Here we go.

Change of Plans

The surgeon's office called. His favorite assistant for cataract removal is GONE this Wednesday. Sooo, surgery is canceled. We're waiting a week. Now, the big day is January 20. Don't you just love a surgeon who makes everything perfect for a delicate procedure? AND, turns out he performs this particular surgery almost every week. A practiced hand, what a gift.

So, what sort of questions should I make sure to ask before the big day? I feel like I should know, but haven't got a clue. I guess there are the obvious, like when she can last eat or drink, but other than that I sort of floundering. Any friendly advice?

Surgery

January 13. Surgery. A pinpoint incision in the new year. Each day closer. A long tether of faith pulls me, encircles the fear I expect. Cataract surgery. On Lulie.

"The hearing ear and the seeing eye
the LORD has made them both."

I'm finding submission more and more like the deep breath of an athlete.


Ready or not





here we come.

Janie pats my shoulder, "Momma." I'm half-listening. "Momma, I'm trying to be patient with you." She's on tip-toe, "Momma, I'm trying to be patient with you. I don't know if I can, but I'm trying to." She circles me like a tether ball.

"Momma?"

Janie grabs my hand, "Can you read me a story?" A pile of books at the bottom of the stairs. A hand to hold.

A leash of love.

Surgery

The Children's Hospital. They have fish everywhere. Murals, sculptures, aquariums, floor tiles. Fish. Every room has fish. Except the testing room. A vision test, a VEP brain test, computers, electrodes, one major breakdown-fit, and a lot of data.

At a time like that don't you just love graphs? I do. Plot the points and trace the curve. There's not a lot of guess work. The bad eye can't keep up. There's really only one answer.

Surgery. In January or February one of the best surgeons in our nation will remove the lens of a tiny eye, Lulie's. He won't replace it. Her eye is too small, still growing. In the months after we will teach a one-and-a-half-year-old to wear a contact lens. She'll patch until she's eight.

And then, perhaps perfect vision.





And after all isn't that what He's offering? Vision. What a gift.

Lulie

Little sweet. We've patched 6 hours a day for months now. A few weeks and we head for another check. May the Lord bless our trip.






Thanks for your prayers.

Patching

I found one of Janie's babies faithfully patching away. Do you think this counts for double time?

Okay, I had to put a silly picture up so I wouldn't feel so glum. Lucy's cataract eye is lagging behind. {Sigh} It's not A LOT, just an octave. It's actually called an octave. That is, Lucy could decipher a certain interval of finer detail with the strong eye. In this case, an octave. Maybe it's just a fluke. Then again, maybe it will lag more next time... or less.

In any case, it's on to patching for six hours a day on into November. {Sigh} I shouldn't feel sad. She's happy and healthy and spirited. Just wasn't really what I expected. Maybe it will be fodder for something extraordinary.

Eye Exam

Tomorrow: Children's Hospital. Some of our country's best doctors continue to monitor and document Lucy's vision development. We thank the Lord for His provision. Please pray for favorable results on the vision test.

Whorls

So here we go embarking on the task, the privilege, the mystery of patching a perfectly good eye until the child is eight or so. Who knew our elegant brain takes eight years to learn the expanse and breadth of the eye? I wonder what splash this obedience of patching will make in our path.

4 Hours a Day

Four hours. That's how long we paste a patch over little Lucy's eye each day. It's hard and easy all at once. It's an offering. Here, God, we'll patch like eyes were made for patches. I always feel sort of like I'm putting a band-aid on the whole affair. Sometimes I wonder if God gave me this tiny hand hold of control just to feel like I'm helping. It's sort of like the way I let Janie stir the cookie dough.

Our appointment was yesterday. Small black plots on a graph, so unimpressive, and yet so startling. Her bad eye scored 20/47, the tippy top of the developmental curve! The good eye scored 20/90. Her GOOD eye actually lags slightly behind the BAD eye (though still well within the range of normal).

So when something miraculous happens, what do you do? I have no praise grand enough, no heart pure enough. I guess in a way I fear the Lord more that he can so matter of factly give vision to my child. Even writing it sounds funny. Give vision?! Who does that? Nah, let's not bring flowers this time; let's just pluck a few stems of sight to bring instead. All the while the cataract planted in the middle of her glassy lens worships God. Who knew the very imperfection would be the glory of glories. Sight in the face of all odds. Oh to be so imperfect.


A Journey of Eight Years

Partial

Dr. Snow. His name doesn't capture the years of schooling, research, and excellence of his practice. He speaks with the precision of a scalpel. I respect the formal manner. The room is all gray and clean.

"Yes. It's a cataract," long pause and unbroken gaze into the portal of Lucy's eye. He doesn't flinch, "A partial." Emotionless and grounded all at once, he looks up, "It's nothing you could have done."

The next weeks littered with appointments and smudged with fear, his words echo back to me, nothing you could've done, a small mercy. I could also mention how he stilled the busy office to offer a prayer for us, but then it might seem God was only there for a moment.

In a few minutes now we head to another appointment far from home. Lucy sucks her thumb with the devotion of a practiced athlete and I wonder if it will be enough. Devotion is like that thumb never offering strength until the very moment we need it. I wonder what we will need today.

The hearing ear and the seeing eye, the LORD has made them both.

Congenital Cataract

Those first four months she seemed so normal. She cooed; she smiled. Her big blue eyes made my heart swim.

Then the tear ducts were blocked for weeks until one September day they spontaneously burst and unplugged. A swamp of goo the color of sprouted wheat disappeared from all around Lucy's eyes. I wanted to sing and kiss the morning air. I jogged instead for miles crisp and fresh as an apple. Each wrangled tree branch tightened into focus as I ran and sucked in smoky tangles of fall air.

October, I almost didn't go. The appointment was to examine her plugged ducts. No slime or swampy fluids pooled up around her lakes of eyes any more. Cured I thought.

Somehow though, I went to the appointment anyway. No reason, I just went. And then there it was: the cataract. A smudge the shape of a sail warbled over the tiny lens of her eye. Congenital, there from birth.

We patched it, the good eye that is. They call it ocular seclusion. It forces the brain to strengthen neurons associated with the bad eye.

















So, there we are last October waiting to see if our baby will need eye surgery. It's not the sort of thing you plan for really. You know, wondering if they will give her a plastic implant or just go with contacts on a five month old, well, after ultrasonically shattering her original lens and sucking it out through an itty bitty straw. Eye surgery?!

Thank-You, God

Good news everyone. Doc says the patching is working!














Hooray, yippie, ya-hoooo!




















Another visit to the Children's Hospital. Vision has improved!! Both eyes are now well within the range of normal for a six month old. Next course of action: hold steady with patching every other day, return in four months for re-evaluation.














Hopefully, we will continue to see vision development according to her age.

(Also, if you click on the first picture you can get a better look at the cataract. We magnified it a bunch for our doctor who was super impressed with the picture clarity. He used the pic to measure the cataract opacity ~opaque part~ and asked Craig to e-mail the photo to him. The opacity is 1.2mm x 1.8mm. As long as Lulu can learn to see through the scattering that surrounds it, the opacity should be visually insignificant. Amazing huh?)

Goliath

The other night Janie said her prayers, and out of the blue, "God, help Momma to be strong and courageous and not be afraid at Lulu's doctor appointment."

This afternoon I confessed, yes, I was afraid. "Mom, let me pray for you," and all the confidence and courage of four years old, she prayed. She included part of David's address to Goliath before nailing him with the sling-shot. Shoulders back, legs slightly apart, she was poised for victory, her stance straight and fresh as a blade of grass.

Before we left, I told her, watch what I do when I am afraid, how I still smile, and take care of you kids, how I say, "Hi," to our doctor and visit with him, how I still do the right things I know to do. I want her to understand that we turn and face fear, that courage is strength when we are afraid.

Fear reminds us that now is the moment of courage.

Patch Day

Today is a patch day. I sure miss getting to see both of those big blue eyes blinking back at me.













Love that baby.

Lucy's Patch

So, I guess you're all probably wondering what Lulu looks like with a patch on.















Isn't shee cute?! I plan on smiling like this the next time I sneeze and accidentally let a little toot. Why is it that kids always think that's so funny? Okay, I do too.



















When Jack isn't poking Lulu in the eye trying to re-adhere the patch, he is covering her with stickers. Sometimes when she cries I say, "I know, I know, I know, honey." Jack has picked this up and yells, "I know that, I know that, Lulu," any time she makes a slightly distressed coo. His other public displays of affection include climbing into Lulu's cradle on top of her, picking her nose, sucking on her fingers, and giving her lots of kisses.



















Lulu handles it pretty well.