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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Lead Me On

**I have to add a thank-you here, after spending the last hour writing up this post. Thank you for reading my words and following along. Blogging this experience has been almost crucial to the processing of all these events. I’ve sat down at this keyboard uncertain, and through honestly confessing on-screen and in my heart before The Lord, I am going to walk away emboldened by the freedom that can only be found in Christ. Praying that He will use these words to relieve you of the regret, guilt, control, anxiety that you’ve been clinging to tonight. Thank you, readers. Now read on!

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Drawing by my incredibly talented friend, Lauren Zook. Instagram: @laurenzook

Since we’ve been home I’ve really struggled. Mainly with these things:

1. I don’t know how to, in every day mundane life,  maintain the intimacy I felt with Christ while we were at St. Jude. I am frustrated beyond belief with this. I feel down. The closest thing I can compare it to is coming back home after working a summer at Doe River Gorge. It makes sense…the past few weeks definitely can’t be described as a mountain-top experience, but spiritually, in our desperation, we were lit up and bonded with The Lord in almost every moment. We had to be to get through it. So now what? We get good news and get sent home and then just…forget? Wouldn’t you think God would just get so frustrated with us for proving Himself over and over only to have us continuously choose countless idols over Him? We desperately need the Gospel. BUT MAN! I just want to finally get it. And stop forgetting that in every season I am desperate for Him. It is my state. My glorious state that propels me ever onward into the arms of grace. Whether in progress or poverty…always desperation.

2. I feel like we abandoned families that didn’t go home when we did. There are so many children with disease, in situations that seem incredibly hopeless, and parents that have been pleading for good news for a.long.time. We get the scare of a lifetime, hop over to St. Jude, have Dr. Wilson pop out an eye and then high-tail it back on home. Or, that’s what it feels like. What about everyone else, Lord? What am I supposed to do with this overbearing feeling of needing to help them? How can I fully relax in your miraculous work in our daughter, but also continue on in heartbreak for the other faces I passed at St. Jude? The countless faces I studied, hours on end, marked with #childhoodcancer. It seems almost oxymoronic or cruel. And deep down I know that it truly isn’t and that one day I will have clarity, but tonight, I am so heavy and confused.

3. I miss the bond we shared between each person at St. Jude. Sometimes, being back home, I feel like people have elevated us, or maybe displaced us a little, like we’re a little bit foreign because we’re going through something most people won’t experience. But the truth is, I’m just as clueless. I was never one to have the right words to say to someone in hard seasons. I still don’t have the right words. I don’t even know what I would tell myself. I miss the freedom we had in knowing that the couple sitting next to us has a child battling disease too. You get to skip all the obligatory or awkward steps, and cut right to it. It’s just understood. And it’s not that our community hasn’t been amazing. Everyone during this season has increased my faith in the body of Christ tenfold. I just miss the unspoken familiarity that came with St. Jude families.

4. Tonight I am more scared of cancer than ever before. Maybe it’s because it’s so real now. I can’t deny any longer the problem our humanity has with disease and sickness. I can’t protect myself, my husband, or my kids from falling victim to its brutality.

5. I am experiencing incredible levels of regret and guilt. I want to jump into Mr. Peabody’s time machine and rewind the clock to January, to the moment I decided to stop trying to nurse Willa. I had just gotten mastitis and with two other young children, I felt like I just couldn’t do it. I had no idea there was a tumor in her sweet little eye. I HAD NO IDEA! And if I had just waited, just pushed through, a few more weeks and I would’ve known that my baby was sick. I don’t have a lot of regrets…usually with time I am able to make sense of every situation. I’m not there yet. I want to take that back so badly, with every fiber of my being. I want to give her what every mother was created to give their baby. I want to nurture her and provide for her. And I can’t. I keep hearing these stories of people and children who were diagnosed with cancer and then switched to an incredibly healthy lifestyle only to be declared cancer free not long after. All I want to do is juice as many leafy greens and good things I can get my hands on, down 32 ounces of it every hour and then breastfeed my baby all day long.

6. I still think I can control cancer. I still think I can control my circumstances. Just read numbers 4 and 5 on this list. I’m scared of cancer because I’m trying to control it. I’m holding onto regret and allowing guilt to batter my heart because I honestly think that if I could nurse Willa then cancer won’t ever be able to harm her again. God proved His goodness to us in miraculous ways last week, and it only took four days being home for me to try to take the reins again.

 

I feel exposed and beat-up. You entertain fear and then Satan doesn’t waste a second of opportunity to snag you. I feel snagged. Anxiety is tripping me up, guilt is weighing me down. I’m exhausted. I’m sprinting circles in my mind: Kale! Chia seeds! How can I get the kids to eat better? I have to toss out the clorox wipes, like right now. What’s better than peanut butter? GMO. Non-GMO. Stomach aches, why does Finn always have a stomach ache? What about fluoride? Plastics, crap! Plastic is everywhere! I need glass baby bottles. Hydrogenated oil. What the heck is soy lecithin? Sunbutter. Almond butter. Whole wheat is bad? Bread is sugar. Sugar is bad. Sugar causes cancer. Thank God I haven’t had a coke in weeks. Coke. How is coke regulated by the FDA and still allowed. FDA. They allow too much. Cheetos? Toxins in everything. FDA approved. Approved to make you sick. Or fat. Or both. Maybe they want us to die in mass numbers. The U.S. has the highest rate of cancer. Other countries have banned food that our government says is okay. Let’s sell our house. Yes, let’s start a homestead. Grow everything. Everything from scratch. Beets. Goats.

STOP! Stop! You can’t continue like this. You’re losing it. Stop and meditate on these words…

Oh how I love You! How I love You! You have not forsaken me!!!

He has not forsaken me. He has not forsaken Willa. He has not forsaken you. I don’t know about numbers 1-6. I just don’t. But, I don’t have to know. I just have to know my God and King. See His steadfast love. Live into His faithfulness. Oh, what a brilliant thought! To stop and only know one thing. The one thing.

Oh Lord, keep us from stumbling. Good Shepherd of my soul….take my hand and lead me on.

(Lyrics taken from Shepherd by Bethel Music)

It’s Gonna be OK

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A few hours after her eye enucleation and in observation.

 

Willa’s surgery went almost as well as expected yesterday morning. Leaving her in that operating room was so hard to do.  She was awake in my arms when I walked her in. She didn’t like the gas mask much, but she must’ve liked the way it smelled, because she started licking the gas.

Everything went as smoothly as anticipated, except that they had the hardest time starting an IV. Dr. Wilson said they called almost every doctor that was available to come try to find a vein. After an hour and a half and tons of pokes, they gave up and came out to tell us. We thought the surgery was complete when they asked us to speak with them. Ha! Dr. Wilson hadn’t even begun yet!

They ended up having to put in a temporary central line since finding a vein was virtually impossible. Dr. Wilson said he hasn’t seen that in 15 years! After another 45 minutes or so, he was able to finally begin the enucleation.

While in the waiting room, we were blessed to have another couple to talk to who’s daughter was in surgery as well. This helped pass the time for sure. Their daughter fought lymphoma two years ago and treatment was successful. It was nice to talk to someone who really understands what you’re going through and where you’re coming from. And it was a great change of pace to here Steven and them talk about Tennessee football!

When we were called back to see Willa she looked so tiny on her little bed. She had a bandage over her right eye, but her left eye was open and she was looking at everything, taking it all in. She was pretty pitiful for most of the day yesterday. She hardly ate, and any time she was coherent it seemed she was uncomfortable. She didn’t really cry, just kept making sweet little moaning sounds. I think it was more just trying to wake from being under anesthesia for the past three days. Not to mention, 2.5 hours of it just for this surgery alone.

This morning she got her bandage off. Here eye is swollen, and the sutures are a tad bit startling just at first, but overall it really seems like a piece of cake when you’re talking about getting rid of cancer.

We thought we would be headed home on Sunday or Monday, but now that she has a central line in place we have to stay the whole week. Hopefully we will hear from pathology in a handful of days. If the results come back positive and the cancer has spread, she will have a spinal tap to make sure and then start chemo treatment. If the results come back negative we will get to head home!!!!!!!

So in the meantime, we are resting and waiting. We also have to get Finn and Johnnie June examined, and that might happen as soon as this week while we’re already here.

You all….yesterday, I was an emotional wreck, wrought with anxiety, because there’s so much we still don’t know. All of the genetic talk just totally overwhelms me and I hate that getting our other children checked out is even something we have to consider. I was exhausted and Willa wasn’t very happy. Every time she tried to cry I didn’t know what was wrong. Gas? Her eye? Nausea? The central line? The tape on her face? Her neck? Her chest????

Today, I’m hopeful and on fire! Willa’s eye (or lack thereof) looks incredible. Her nurse practitioner was thrilled with her recovery so far. She is resting and happy today. Even gave us a few smiles!

I’m also just so in awe of St. Jude. I haven’t had much time, up until recently, to process how blessed we are to have been referred here. Willa’s treatment is impeccable. Her nurses, especially Emily in the Medicine Room, have been OUTSTANDING. The nurses here cry with you. They don’t just care for your child, they love your child. The sight and sound of Willa fighting and screaming when they were drawing blood during her labs on the first day here was too much for me; one nurse held me while I struggled to pull it together. She just held me and told me I didn’t have to be strong, that it was okay to cry, that God had a plan for even this. They’re like angels, these nurses!

The doctors explain everything to us without the slightest hint of arrogance. They are some of the most humble professionals I have ever encountered. Extremely intelligent in their specific field, and extremely humble…making so sure that parents truly understand what’s going on with their child. Pray for the St. Jude staff. I have no doubt that billions of prayers are said for these beautiful people. They are strong enough to get their work done, and still be personally invested in each patient. Their hearts are open, leaving them vulnerable to the pain and suffering they see everyday, but also open to developing a deep relationship with patients and their parents. There’s no way they could do that without the Holy Spirit strengthening them and filling them with hope.

All of the extra things St. Jude does for patients in their Child Life department are amazing. Every day at lunch there is some type of live music being played. Some players from the LA Lakers were here the other day signing autographs. …..tons of employees are cancer survivors. I am forever changed. Forever motivated to no longer ignore childhood cancer, but to embrace the battle and be a small part of it, whatever that looks like.

On the TV in our housing lobby this morning I saw that St. Jude was just named one of the top places to work by Forbes. Duh! It is incredible. If I ever went back to school to work full-time, I would get a degree to be a Child Life Specialist at this hospital….that’s how much of an impact it’s left on me. I’m even slightly excited to have Finn and Johnnie here, because they are going to LOVE it! I mean……red wagons to ride in?? Even just that is enough to make them squeal and that’s just two steps inside the front doors.

I think a lot of this is me coming to terms with Willa having cancer. Now when I walk the halls, holding little Willa in my arms, I feel like we are part of the club. We get it. I’m not nervous anymore to see these kids’ faces. I’m fighting, Steven’s fighting, Willa’s fighting, we’re fighting with them.

It’s obviously not “cloud nine” all the time. I get hit with waves of fear. I hear a child crying out in pain in the room next door. I still want to suck cancer out of every little body here. I get angry. But, there’s something about this place, and these awesome kids, that reassures me: It’s gonna be OK.

 

Halfway There

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Hotel bed is Willa approved.

As I’m lying in this enormous bed awake in the dark, encouragement constantly streams from the words of so many through texts, letters, emails, and comments. I have to stop right now and just say thank you! And thank the Lord for how, not only does He never leave us or forsake us, but He continually reminds us with tangible evidence of His grace when we begin to doubt. Support hasn’t stopped since the moment we were given Willa’s diagnosis. And Christ’s love truly is never-failing and has not and will not cease. I am thankful that He is patient with my anxious heart, and reminds me through your words of hope that He is right beside me, closer than my skin, and feeling the weight of all of it.

There are moments I begin to believe that we are being punished, or that our situation is laughable, or deserved….but that is worldly grief. And worldly grief produces death. I want a godly grief, the kind that reminds me that I am alive, that I am a living daughter of The King. The kind that leads to salvation without regret.

For see what earnestness this godly grief has produced in you, but also what eagerness to clear yourselves, what indignation, what fear, what longing, what zeal, what punishment!

2 Corinthians 7:10-11

As Michael Scott from The Office says: “There’s grief….and then there’s good grief.” There’s my comedic relief for the moment.

When we arrive at St. Jude later this evening, I am praying that The Lord will grant me eyes to see each child and their families as another chance to lead us all to repentance. Rather than look on each patient’s situation with pity or worldly grief, I pray that I am reminded that God is revealing His goodness to and through those children and babies and teenagers too. Lord grant us a godly grief!

Look to the One who does not avoid our suffering but enters in, who does not despise our brokenness but redeems it.

May our tears of grief lead us to repentance, and may we receive refreshment for our souls. Amen.

Amanda Bible Williams, She Reads Truth

Now to check out Nashville’s best in yarn boutiques to buy us some time, err buy us some yarn…..poor Steven!

Yea, though I walk through the valley

This is a fair warning to all you readers…this blog just got real personal & vulnerable real fast. What was initially meant to primarily be a blog to promote my handmade business with tidbits of our life has quickly become a means to update everyone following along with our journey after being told yesterday that our youngest daughter, Willa(2 months), has Retinoblastoma (eye cancer of the retina). This is also the easiest way for me to document this season to look back on and show Willa how strong she was and how much the Lord used her to sanctify us all and make us more like Him.


We had noticed from very early on that Willa’s eyes weren’t focusing together as they should. I called them “wonky” eyes because one was always wandering off to the outside. We thought she would be diagnosed with strabismus and after eye-patching or glasses her eyes would be totally normal. We got a referral from our Pediatrician and great family friend, Dr. Gill, to go see Johnson City’s only Pediatric Ophthalmologist, Dr Carlson.

But, our appointment wasn’t scheduled until the end of March. In the meantime,  I began to notice that her right pupil had an odd color to it that I couldn’t even really describe. It was just an unsettling feeling of something not being quite right.

Yesterday, by providential events, we were able to get Willa in to see Dr. Carlson. Thank you Lord for snow storms and cancelled appointments.

At that appointment, Dr. Carlson found that Willa’s left eye was perfect, however, the retina was detached in her right eye and she had no sight in that eye. He told us that with multiple surgeries and treatments, she would possibly be able to see with her right eye. Or, there was a chance that she would be blind in that eye indefinitely.  We needed to find out the cause of the detached retina, so he referred us to the Med Center for a CT Scan.

The CT Scan was very hard to experience. The nurses couldn’t find any good veins, so an IV was inserted into a vein in her scalp. As you can imagine, that’s a lot to endure for a 2 month old.

Willa before her CT Scan with IV. You can see the odd coloring of her right pupil-the affected eye.

They bundled her up under lots of warm blankets, strapped her to the table and then I stepped out….just in case I was miraculously pregnant.

Being in the hallway and hearing her cry left me feeling completely hopeless as a mama bear. But, we survived it. And after waiting for about an hour a lifetime we still didn’t have results. We were sent home and weren’t sure when we would hear something.

Later that night, as I was feeding Johnnie June goldfish and blackberries, Chris Gill and Dr. Gill walked through the door and my heart sank. I think I remember Chris saying “It isn’t good Steve”. And then I grabbed Willa and lost it.

Retinoblastoma occurs in about 1 out of every 20,000 children. It’s a rare from of cancer, but it is the most common form of eye cancer in children. The tumor in Willa’s eye has begun to cause enough pressure to detach the retina. She will more than likely lose her right eye to get rid of the tumor and might need chemotherapy and radiation treatment as well.

Dr. Cook at Nisewonger is incredible and I feel a lot more empowered for the trip ahead after meeting with her. We are headed to St. Jude’s in Memphis on Sunday to arrive no later than Monday evening. Willa will be seeing a world renowned retinoblastoma specialist and surgeon, Dr. Matthew Wilson.

Today at the Med Center, it felt bizarre and surreal to pull up right next door to the Birthing Center where Willa was brought into this world. So many people commented on how beautiful she is and how much hair she had and I wanted to scream “She has cancer!!!!!” I’ve screamed it over and over in my head countless times already.

One of the hardest things to think about as we prepare to leave for Memphis is leaving Finn and Johnnie behind. We might be there as little as two weeks, but more than likely longer. I’m watching Johnnie prance around the living room with her juice tucked up under her arm as I’m typing this. I don’t want to leave. I don’t want to endure this. I don’t want to see her in pain again. I don’t want my daughter to lose her eye and grow up with self-image issues just like every girl, but with the added hurdle of having only one eye. I don’t want to await more results after Willa’s MRI on Thursday. I don’t want to admit that my baby daughter has cancer. CANCER. In my honest and real and selfish heart, I don’t want any of this.

But, we have been called to endure this. And we are not alone. There are moments for each of us that God designs to stretch our faith and further His kingdom and this is definitely one of those for not just me and Steven, but all of us. Reality is reality and I can either press ahead with my fists closed tightly, or with hands open.