A Fascinating Craftsman

photo-200I wanted to share details about ocular implants and prosthesis because  when I first heard in February that Willa would have her right eye removed, my mind flashed back to scenes from Pirates of the Caribbean…wooden round eyeballs or glass eyes rolling around on the floor or pirate patches for life.

This is the true story: Ocular Implants and Prostheses.  (If you’re squeamish about eye stuff, better to not continue on!)

So, after they enucleated (fancy for removed) Willa’s eye, they then sent it off to be frozen indefinitely and used for cancer research. You’re welcome! Kind of feels neat (and freaky) that her eye is sitting in a dark walk-in cooler somewhere. 2010112295410261

Next, an ocular coral implant (porous coral ball the size of a small marble) was placed where her eye used to be and then muscles and tissue were connected around that implant.

Steep-Radius-3-sizes-6X3-72dpi(1)After those muscles and tissues were all surgically connected, a clear conformer was then placed on top of everything to sort of…hold it all in. This is what has been in Willa’s eye socket making it look super shiny. It also helped her eyelids stay open, rather than drooping shut.

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This diagram shows how modern artificial eyes work.

The conformer has been in place for the last six weeks, ever since her enucleation. During her EUA Wednesday, Dr. Wilson removed her lasting sutures, but the conformer stayed in place behind her eyelids until today when our super awesome Ocularist, Rob Thomas, took it out.

photo-201When Mr. Thomas told us he was first going to take the conformer out, I had this fear that everything would just…fall out. Ah! But, it didn’t. He took the conformer out (with a cute little suction cup!) pretty easily and Willa didn’t like it, but she took it like a champ.

IMG_5750Then, he put another conformer-type thing on her socket, but this time, it had a tube sticking out of it. So, poor little Willa looked like something out of The Terminator for a few minutes. He used a syringe (without a needle) to squirt this liquid into the tube that ran over her eye socket and as it hardened it created a mold for her prosthesis. Amazing, right?! It was kind of like wax.

He molded it and used this flame to heat these tools to keep molding and shaping it just right. Add a little here, shave a little off there…it was really fascinating. Every now and then he’d have to put it back in, and then Willa just had this yellow/white eye with a few sharpie marks on it staring back at us.

IMG_5755There was a lot of screaming and holding baby hands away from baby eyeballs and lots of crying. I kept looking up at the ceiling and holding my breath and Steven watched every single second of it! But then we got to take a break and I had a margarita at lunch…that helped.

FullSizeRenderWhen we went back, Mr. Thomas picked an “iris button” that matched Willa’s left eye the best. He had a treasure trove of these iris buttons in all colors. He fitted that to the prosthesis and then he hand painted on tiny details while holding it up every once and again next to her left eye for comparison. This part was so incredible!

A couple more screams and adjustments later and we were done! Now Willa sleeps with one eye open….but not for long. After the swelling and puffiness goes down, the prosthesis should fit better and kind-of settle in a little more. Then her eyelids will be able to open and close more easily. I will be fantastic until I have to take it out, or put it back in. Ugh. But really, I am so in awe of all of it!

eyeWe had lots of conversations with Rob about lots of things, but mostly artificial eyes. He followed in his father’s footsteps and after college he completed a five year ocularist apprenticeship under his teaching. Rob explained that it truly is a trade. His passion and skill for this trade was remarkable.

alandwillaOn the drive home from Thomas Ocular, Steven said that he had been thinking all day about the parallels between the Gospel and Willa’s experience with enucleation and prosthesis. We are all sick with Sin. Jesus takes us in, removes our old, sick and dying hearts/spirits and creates in us a clean heart. Renews a right spirit within us. Willa’s eye was sick, ridden with cancer, and completely removed. And then today….. today, all day, Rob poured himself over this intricate work. He so delicately crafted this prosthetic for Willa that could one day mean the difference between her being rejected or accepted. He was confident, yet gentle and he worked so skillfully to give Willa this gift. To replace her sick eye with his workmanship. Scripture says that we are God’s workmanship. Throughout our lives, Jesus is sanctifying us, He is bent over us day in and day out, delicately forming our hearts to be more like His. He brushes us with His grace, His love, patience, and gentleness. No one is exactly alike…He molds us each in our own singular way with our own unique experiences. He is the ultimate craftsman, entrusted with the trade of making us new. And that…that is pretty fascinating.

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Perpetual Beauty

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A few weeks ago, two days before Easter Sunday, the day that so many parents feel the pressure to dress their children up in the best of clothes, making sure hair is pull back just so, shirts stay unstained and every photo shared is close to flawless…two days before, one of Willa’s eye sutures fell out and God grounded me, once more, in His truths.

Since her right eye loosed itself of that suture, I’ve felt like she’s been exposed. Exposed to what? I don’t know. I just know that it made me uncomfortable. I kept wondering “how do people feel when they see her eye like this?” We’ve been out places with her, and we hear peoples’ hushed conversations. You know the ones. The ones you’ve been a part of when you see someone who looks “different” and you come up with the story that you think fits their image the best. “I bet they were just born that way.”  “I wonder what happened.” “I wonder if they feel bad or different.” “It’s probably a delay of some sort.” “Birth deformity.” “Gosh, that’s so awful.” “That’d be so hard.” “Don’t look over there right now, but…” You stare over your shoulder, just long enough to catch a glimpse that’ll give you an idea of how they got that way.  I’m not pointing the finger. This is me, too. As much as I hate to admit it, we see someone different and we linger there a moment. We weigh their “offensive” physical traits and make a decision to accept them or not.  And I get it. People need to do that with Willa too. I can be patient with that, with people’s ignorance to her situation, the human race’s obsession with outward appearance.  But I don’t have to accept it. Because when paired against Jesus’ perfect love, what we do to one another, and to ourselves, while obsessing over fleeting beauty, is absolutely repulsive.

It’s repulsive that I, as Willa’s mother, would explain to a stranger in haste why her eye is missing so that they would accept her. It’s almost unspeakable that I would feel the need to coddle anyone because they’re taken back by a baby with one eye.

When Jesus looks at us, covered in all our sinful bents and deformities, He doesn’t need a moment to figure it out before He accepts us. He doesn’t need us to explain ourselves to Him. Explain how we got where we are, why our hearts are so hardened, bitter, shameful, full of regret. How we got our scars, our wrinkles, stretch marks, permanent frowns. He’s not taken back by our appearance and He sees it all….our faces and our hearts, our gnarled figures and our souls. He accepts it all. He wants it all.

Our resurrected King, when appearing before Thomas, still had His wounds. The living, resurrected Christ, fresh from conquering sin and death, wore His scars. I imagine that if asked, Thomas would tell you that to lay eyes upon the Risen Christ was the most beautiful thing he had witnessed in his whole existence. In all his Glory and perfection, Jesus was marked by pain and suffering. Pain and suffering that led to freedom. What beauty. A mark of vindication! Of Completion!

In a few days we leave to go back to St. Jude. Willa will be fitted for a prosthetic eye. So…before that happens, I want to dwell here and soak up her tiny face with her wound, a reminder of her pain and suffering…..pain and suffering that has led to freedom. Freedom not only of her cancer, but freedom for her parents and for anyone else who has been touched by her story, freedom to rid ourselves of the doubt that God isn’t for us. A reminder that we have all been set free, each one of us with our own wounds and scars….many that we will wear for the rest of our existence. Reminders of true beauty. Sacrificial, unconditional love. Given for us. A conqueror for us.

Oh, give us a thirst for that beauty….mark us with that beauty….raw, bloody, real, perpetual beauty.

….And Willa……golly, are you ever beautiful!

 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.     2 Corinthians 4:16

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Because HE Lives

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A week before we knew Willa had a tumor growing in her right eye, I was asked to lead our women’s group at the start of April. At the time, I had no idea what I would focus the evening on. This blog and all of its readers has been such a part of what I’ve experienced and how I’ve grown that I realized there was no way I wasn’t going to share our time this evening here on the blog for everyone to take part.


As we enter into Good Friday tomorrow and anticipate celebrating the resurrection of Christ this Easter Sunday, I need to hear other people boast in the cross. I want to know and see how God has proven Himself in other people’s lives and stories. I just went through a month of time where the Lord has been more real and evident and intimately closer to my heart than I’ve felt in my whole life. Try as I might, I could not deny the reality of the Gospel and the hope we all have in the cross. But, there is a war in my heart-a tug to pull me away from this truth and towards my own strength…to doubt that God truly loves me, to doubt that there even is a reason or a hope, to doubt that there is meaning in the suffering, to doubt that He won’t forsake us or abandon us. So, what better way to remind us of His faithfulness to us than to each take a moment to boast in the cross of Christ by asking ourselves “What have I gained because He lives?”  My hope in entering into Easter weekend, is that I would hear this scripture

For as the rain and the snow come down from heaven, And do not return there without watering the earth And making it bear and sprout, And furnishing seed to the sower and bread to the eater; So will My word be which goes forth from My mouth; It will not return to Me empty, Without accomplishing what I desire, And without succeeding in the matter for which I sent it. Isaiah 55:10-11

that I would hear it and I would know it and trust in it with my whole being. Trust that He will not abandon me. He will accomplish what He began. “He who began a good work in me will carry it on to completion until the day of Christ Jesus.” Philippians 1:6. So let’s share together the hope that we have and remind one another of who it is we boast in and why.

Most of you are aware of the events that have taken place in recent weeks with our daughter Willa, but for those who don’t….our 3 month old daughter was diagnosed with Retinoblastoma-an eye cancer of the retina. After the tumor was found in her eye, everything moved very quickly and we were rushed to St. Jude. Two weeks later we took our baby home, with one less eye and lots more unknowns, but with a restored knowledge of who God is, not only in the midst of suffering, but all of the time. He proved Himself, not by circumstances, because although He answered very specific prayers in very specific ways that met our deepest longings (Willa’s cancer had not spread anywhere else outside of her eye and therefore she didn’t have to undergo chemotherapy), the proof of His faithfulness was found in how He entered into our suffering with us, met us there and carried us through. He gave us the strength and hope to endure. He grabbed our hearts and clung to them, ensuring that our fears would not steal His joy. Even when logic would say “God has forgotten these children, He’s not in this place” while we walked the halls of St. Jude and witnessed large masses of pain-filled hearts…even then He would reassure us of His presence in providential ways like this:

A father was comforted by a stranger-a teenage St. Jude patient undergoing chemotherapy treatment. During the bustle of the lunch hour at the hospital cafeteria, this young teenager put his arm around the father who was in obvious shock over the recent Neuroblastoma diagnosis of his 8 month old son, and in purposed tone stated “Don’t worry. Your son is going to be okay, he’s going to make it.”

We received countless incredible letters from friends and people in our community and from past seasons of our lives….these words from a great friend really stood out:

“I can’t help but think that I’m equally as cancerous, likely much more, than little Willa, yet I’m not aware of it, or worse I’m ashamed to admit it. Praise Jesus, who knows each of our cancers and even still gave his life for us.”

We’re all sick. The only difference setting us apart from Willa is that her sickness is easier to see. But we’re all sick, our hearts are all diseased. we’ve all fallen short of the glory of God. We are a desperate people in a broken world. We all deserve death and judgment. As John Piper says:

All we deserve from him(God) is judgment. Therefore every breath we take, every time our heart beats, every day that the sun rises, every moment we see with our eyes or hear with our ears or speak with our mouths or walk with our legs is free and undeserved gift to sinners who deserve only judgment.

One of the reasons we are not as Christ-centered and cross-saturated as we should be is that we have not realized that everything – everything good and every thing bad that God turns for the good of his redeemed children was purchased by the death of Christ for us. We simply take life and breath and health and friends and everything for granted. We think it is ours by right. But the fact is that it is not ours by right.

We are doubly undeserving of it.

1) We are creatures and our Creator was not bound or obligated to give us anything – not life or health and anything. He gives, he takes, and he does us no injustice.

2) And besides being creatures with no claim on our Creator, we are sinners. We have fallen short of his glory. We have ignored him and disobeyed him and failed to love him and trust him. The wrath of his justice is kindled against us. All we deserve from him is judgment. Therefore every breath we take, every time our heart beats, every day that the sun rises, every moment we see with our eyes or hear with our ears or speak with our mouths or walk with our legs is free and undeserved gift to sinners who deserve only judgment.

And who bought these gifts for us? Jesus Christ. And how did he purchase them? By his blood.

(read the whole article here)

It might sound crazy to hear/read those words…..as I watched Willa screaming while 5 nurses held her down to try to get an IV needle started over and over again, as I witnessed tiny little limp bodies lying in gigantic hospital beds, clutching stuffed animals and mothers and fathers kneeling at their bedside, gently coaxing them awake from anesthesia, as I watched frail teenagers being wheeled by their parents through the hospital…..those words, that confess that all we deserve is judgment, are the only way I can make sense of the suffering….that me and Steven and Willa and every being on this earth are doubly undeserving..that to even exist is an extravagant grace. An extravagant grace that our Heavenly Father lavishes upon us even while we are still sinners! It’s the moment when I’m blissfully lost in this truth that I can boast in the cross of Christ, in Jesus’ death and resurrection. It’s in those moments that I feel like this boasting was all I was ever created to do. It’s all I’ll ever want to do. It’s worth eternities of praise! It’s my whole life, my whole being.

Oh! That those moments lingered. But, the struggle is real and my heart is faint. That’s why reminders are so precious. Because we’re all walking different roads and while one is pressing ahead, full of grace, another is dragging behind, weighted down with apathy. So we pass the baton of remembrance, we raise our Ebenezers…thus far the Lord has helped us! Look and see and remember. BECAUSE HE LIVES! My (and your) Ebenezer this Easter weekend.

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Because HE lives….I joyfully endure the reality of childhood cancer.

So, fill in the blank: Because HE lives…..

What has the death and resurrection of christ secured for you?

Raise it high! Be reminded that everything was obtained for us by the cross of Christ and that you are alive only because HE lives.

Here I raise my Ebenezer, Here by Thy great help I’ve come!


If you’re interested in stitching your own “Because HE lives” embroidery hoop as an Ebenezer/reminder of His help, you can use the pattern below.  It was originally create for a 4″ hoop, but you can tweak the size of the image to fit whatever size you’d like. Use different stitches and/or colors if you’d like to give it your own unique twist.

Because He Lives patternHappy Easter….He is risen!