"what do i do with this God?"

since my last couple of posts have dealt with the passing of my mother-in-law and her battle with cancer, i was planning my next writing to be something lighter, brighter, uplifting. something, maybe, even sweet.

except this morning i woke up to news on our friend's caringbridge and all plans for light and bright and sweet have shot right out this february window.

i sit here in the wee hours of this winter(ish) morning and feel instead the weight of their words.
the news clear. the sadness deep. the ache sharp.

and i'm sorry i can't give you anything breezy and easy in this post.
and i'm sorry it's not going to feel very uplifting -- at first. but, make no mistake there's hope.

and though the words aren't easy, there's encouragement and even evidence of something, yes something, sweet. even in this devastating news shared -- there's that. somehow.

because in this news and in this knowledge and in this very painful knowing there is still and always the Good News of Jesus.

i've written before about the myers family.

last spring their youngest daughter, kylie, was diagnosed with ewing's sarcoma. and the cancer battle began. truly you've never seen anything like it. this family has been amazing as they've rallied around their 12 year old daughter and exhausted every imaginable resource in this hideous fight. they are that kind of family. they've allowed an entire community all over the world to share in their story and have always continued to point anyone watching back to Jesus.

kylie and her family at the
make-a-wish gala this past year.

we've known them for many years. our older kids all lined up together in school ... so we've shared lots of life with them at perimeter school. they have always been a family easy to love, respect and admire ... but, oh friends, even so much more in this year of childhood cancer.

sweet kylie has been through so much. but, i'm telling you, even in this horrible diagnosis the myers family has held hard to their faith. they've inspired and encouraged and uplifted many of us -- multitudes of people -- in their hope.

kylie's hallmark, her smile. from coast to coast people know her story ...  know her struggle ... know her smile. #smiley-for-kylie!

kylie's make-a-wish trip was scheduled for this week. after finishing recent treatment, that was the plan: they'd be on their way to new york city for a broadway tour! that was the wish. that was the destination. that was the desire.

but last night kylie's dad, mark, shared this instead ...

I've never been much of a poet or poetry reader, but I have always had a favorite poem. It has resonated with me even though I never fully understood its meaning.

Nothing Gold Can Stay

by Robert Frost

Nature's first green is gold.
Her hardest hue to hold
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief.
So dawn goes down to day.
Nothing gold can stay.

I understand it now. I understand it and wish I didn't.

I never thought I would be writing this entry. I never wavered in the belief that we would be rejoicing in Kylie's complete healing. That does not appear to be the case. After we left Charlotte, we knew that she had another tumor. We assumed that meant we had more radiation treatment ahead. Things descended rather quickly from there. She started to have pain in two other locations. Very specific, sharp pain that came on suddenly. Even though we tried to tell ourselves it could be something else - the flu or a virus, I think Robin and I knew. The pain was too symptomatic of everything we've experienced to date. We made the decision to go full bore to New York on her Make-A-Wish trip because anything else would devastate Kylie.

But on Sunday, she began to get sick and feel very bad. In the late afternoon, we made that familiar trip to Scottish Rite. Our every intention was to speed healing so that we could have a blast on the trip. We got admitted and spent the night. Kylie was put on oxygen because her breathing became unsteady. In the morning, the conversations I had with doctors ripped my soul to shreds. Terms such as disease burden and incurable by standard treatment were used. I had to make decisions that I am completely incapable of and sign forms no one should ever see. The last 48 hours have been torture. The doctors were all on board with getting her in travelling shape and sending her to New York. MAW arranged oxygen there and we were set to go. We decided to let her have this trip before we burdened her with what we were learning.

This morning as I lay on the stupid, red sofabed listening to her shallow breathing, I felt a sudden and clear shift. I decided that since we have never withheld information from her, we needed to tell her everything and let her decide. I told Robin and she agreed. And so we had an awful, terrible conversation with our little girl. I watched it sink in. I watched her process it. I cried with her and answered all of the questions that I could. There are so many that are unanswerable. She decided immediately that she wanted to be at home. Home is her balm. We are not going to New York.

So here we are. What do you do with a little girl who rubs her daddy's beard and tells him it will be alright? What do you do with a baby who reaches out to console her weeping mother? I watched in awe as she accepted each of her wailing sisters into her arms and one by one stroked their hair and told them everything would be okay. How can the patient be the comforter - especially when she is 12? It's because she is Gold. She is better than me.

On a personal note, what do I do with this God? He has provided abundantly for us during this crisis in every way. We have felt loved to an embarrassing proportion. He has bound our hearts together and actually strengthened our marriage. Somehow, we have been united on each and every terrible decision we have had to make. He has given us so many evidences of himself during this time, yet for some reason He has chosen to withhold His hand of healing. I don't understand. What do I do with Him? We have some talking to do, but I have decided that I will follow Kylie in the matter. Somehow, she still holds onto her faith and hasn't given up on Him, so I won't either.

We do not know what the next few days hold. She looks perfect, speaks to us clearly and we all laugh and cry together. But inside, there is an insatiable monster eating away at everything. Our options for further treatment are very limited. We can enter clinical trials, but she has to be 14 days purged of the radiation to even start. We are exploring any option, but her body is so weary it will be a hard call. So we don't know what to do except pull together as a family and love on Kylie.

We aren't ready for an influx of visitors. We will try to respond to texts and emails as we can and will read comments and try to share them with Kylie. Soaking up every minute with Kylie is our main focus. Thank you all for praying for us and encouraging her with your smileys. We aren't giving up and continue to pray for a miracle.

friends, i'm sharing this, first and foremost, asking you to pray big for kylie and her family this week. mark's last sentence: "we aren't giving up and continue to pray for a miracle," spurs us all on.  please pray!

but i'm also sharing this knowing that some of you have asked and are asking and will ask the same question kylie's dad asks:  "on a personal note, what do i do with this God?" 

what do i do with this update on kylie?
what do i do with this issue in my own life?
what do i do with this disappointment or discouragement?
what do i do with this this struggle, this sadness, this need, this news, this no?
what do i do with this, God?

go back and re-read the paragraph with mark's answer.
read it.
read it again.
that final sentence: "somehow, she still holds onto her faith and hasn't given up on Him, so i won't either."

this week i wanted to write something of hope and beauty and life. and instead i woke up and i read this update from the myers family. and i am feeling crushed for these friends. crushed and crying out, "Lord, why? why? why?" 
how can this young girl's make-a-wish week turn into this kind of news? 
"why Lord? why?"

"what do i do with this God?"

and many times already this morning i have had to re-read that paragraph written by kylie's daddy. "somehow, she still holds onto her faith and hasn't given up on Him, so i won't either."

on this same morning, after reading mark's post and writing all that above, i had to rush out the door and attend the chapel program for our lower elementary students. bella's 1st grade class was singing "o worship the King."
i sat in our beautiful chapel waiting for the program's start and mark's words continued to play through my head. "on a personal note, what do i do with this God?"

and in the peace of that chapel, listening to these precious kids worshipping their King, i was overwhelmed with the scope of this life. this time. these years. this gift we hold sometimes too tightly ... sometimes too loosely.

we met the myers family back when our oldest girls, meredith and emily, began 1st grade together. these girls who are now in college, they were these same 1st graders once singing in a chapel program. girls in navy sweaters and khaki skirts. and we were those young parents sitting and watching and listening and loving our six year olds. our very youngest children not yet even born. our dreams all still intact and our hearts beating only to the rhythm and wonder of our oldest girls starting out. beginnings. bright futures. so many blessings.

and that seems just yesterday.

but, just like all of us, we've added some years and babies and joy and laughter and, yes, some pain and suffering.

and today i sit listening to my youngest -- another 1st grade girl.
and today all these 1st grade children stand in chapel singing "o worship the King" ... 
worship Him in the beautiful sweetness of life ...
worship Him in the heartbreaking sadness of life ...
but, worship Him.
worship Him.
w o r s h i p.

and that's what the myers family continues to do. even in the overwhelming sadness of this week. they wrestle and they weep and they cry out wild in their grief, but, they worship the King.

and that's the hope i want to point y'all to today. i can't give you easy and breezy, but i can give you real and raw ... and i can show you a tiny glimpse of a family who couldn't be dealing with deeper grief, and yet who continues to worship their King.

kylie. this girl with a beautiful smile ... this girl who placed her arms around her hurting sisters ... this brave and joyful child of God ... this girl, who her dad calls "gold," she worships her King.

last year, a "smiley-for-kylie" picture perimeter school did to show kylie their support and love!