Ellie

He Is Enough

Finally, a Christmas season with no new. No new babies that leave you lucky to get completely dressed each day, let alone decorate a house for Christmas. No new and scary cancer diagnosis that sends you reeling so that you can hardly think straight, let alone prepare for the holidays.

This. This would be the year we would do. Do lights and trees and the Christmas market and start new traditions. Each day would be beautiful and weighed down and slowed down in some way to specially mark the Advent and keep the Heart of our celebration at the front of our minds. …and our adventures and travels would all look so pretty under the light of an Instagram filter.

And then everybody got sick.

And Chase’s counts dropped for two weeks in a row with no explanation.

And I found myself lying face in the snow as my bruised brain reminded me that what I’d set out to do hadn’t been a good idea.

And then came the CT scan and the ER conversation about how to treat concussions.

And then I watched the Christmas season pass me by.

The cards only half done, the Christmas market abandoned, the traditions would have to wait.

Lying flat on the couch by the tree, tears streamed down my face as I struggled to let it go. I had attached my heart to these things we would do. I would be a good parent for them; a good Christian for them. These things are what would make this time special and holy. Because we need special. You see, for any of us, healthy or not, this could be our last Christmas, but somehow, with the cancer, the dark cloud of “the last” looms greater and closer. This Christmas must count because it could be the last one we’re all here together. What if…

I have continued to wrestle against this concussion, pushing for health because we’re losing precious days.

It wasn’t until yesterday, eight days into the wrestle, as I sat under the tree, feeling bitterly disappointed to miss another Advent Sunday, that the still of my heart was stirred.

God is enough.

My worship doesn’t need anything, not even the beauty and pageantry of Christmas in my beloved church. My ability to guide my children through this season is not based on events and outings. No, He who took on our broken, wretched skin, He and He alone is enough.

This does not come easily to me. I so often want to dress Him up and observe Him in a way that makes me feel special. How silly and foolish a thing to do – and it took a concussion to strip it away and show it up.

So the Christmas cards may not get sent, but He is enough.

The new traditions may not get made, but He is enough.

The old traditions may not be kept, but He is enough.

This may well be the last Christmas…but HE IS ENOUGH.

I don’t need anything else.

Moment by moment.

Of Bears Hats And Times With Dad

Today is a big day for Chase! He has routine appointments at the hospital (not big), and he and Daddy are going by themselves!! (REALLY big!)
Bob is looking forward to some bonding time with Chase and I (laid up with a concussion at home – a story for another time) am trying not to call them every few minutes. 🙂

Two things to note…
1) Chase is a Chicago Bears fan and wanted me to point out that he’s wearing his Bears hat.
2) Look at Chase’s face! I know this picture isn’t the best, but he’s visibly filling out! I love it!

Moment by moment.

12.12.13

I still remember the final push and the rush of pain and relief as the doctor held up the tiny, red child and proclaimed him a boy…and then, as they laid him on my chest, he marveled aloud to the room that the seconds-old child was holding his head by himself. Strength.

In that moment, I held my Chase Stratton Elliot for the first time. Named after his grandmothers, his great-uncle Jim, and the burden prayer that he would run after God, this child of great struggle and the unexpected came; the news of his life shocking us only three months after Aidan.

I still remember walking down the hall of the radiation center and stepping into the room on that last day, my arms full with a too white child too light for his long bones. The anesthesiologist stepped to my side and as the milky syringe emptied into the central line, my baby chanted “I’m so brave, I’m so brave, I’m so brave…” until he sighed and collapsed in a deep sleep on my shoulder. Strength.

In that moment, I held my Chase Stratton Elliot for yet another time – still my child of great struggle and the unexpected. I held him and wondered if this would be the last December 12th that he’d be in my arms.

Now it’s December 12th again and my darling child of struggle is still in my arms! Joy.

He struggles with the world even now, but his stubborn, tenacious, beat-the-odds, stare-it-down, never-say-die, don’t-mess, you-and-what-army spirit is what makes him our precious Chase.

The first time we sat across the table and heard the awfulness of this disease, I asked the doctors what was ahead and one smiled with great sympathy and said: “Let’s just start this fight, and then we’ll get him through radiation, and then we’ll hopefully get him to age three, and then four, and then…”

He saw age three, he conquered age three, and now he’s FOUR.

Moment by moment.

I believe that I shall look upon the goodness of the Lord in the land of the living! Psalm 27:13

Do You Hear What I Hear?

I’ve written about Chase’s lack of hearing before.

The tiny room…

The sounds I can hear that he doesn’t…

The frustration in our home as he calls and calls desperately across the house, never once hearing us answer…

Since his doctors surgically cleaned out his ears, the intense frustration has seemed to improve a little. Now, he seems to be able to hear a voice from across the room, but perhaps that’s just wishful thinking on our parts. After all, we know the collateral damage we signed on for when we started this journey.

Stimulating his hearing through his skull - fearful and wonderful — Stimulating his hearing through his skull – fearful and wonderful

And yet…

Today, as we wrapped up the audiology exam, she sat down and smiled: “I don’t usually get to tell people this, as it often goes in the other direction, but…his hearing has actually improved!” The procedure performed in November (when he was under anesthesia for his MRI) was successful and his hearing is within normal ranges in several areas. His high frequency hearing is still classified as “poor“, but even that has improved from the “unresponsive” conclusion on his last test.

Even as we both celebrate these results and wonder about the results in six months time, I am reminded again of these words…

Chase doesn’t need perfect hearing to hear the voice of God.

Thankful.

Moment by moment.

He feared the giant headphones and we told him that he looked like an airplane pilot :) — He feared the giant headphones and we told him that he looked like an airplane pilot 🙂

Touch Your Nose

Because Chase’s cancer was in his brain, he goes through a series of “games” with almost every doctor he sees…
“Touch your nose”…
“Touch my finger”…
“Squeeze my hands”…
“Push me as hard as you can”…
All small exercises in game form to help understand his cognitive function.
Yesterday, Chase had an appointment with his neurosurgeon and it was apparent from the first moments of interaction that Chase was in rare form (even for Chase).
He solidly refused to even think about playing any games until the doctor -an amazingly sweet man who seems to understand Chase’s energy- said “I bet you can’t…”. Ah, Chase’s motivational love-language: The Dare.
When asked to play “Touch my finger“, he insisted on alternating his hands so that he’d touch his nose with his left hand and the doctor’s finger with his right hand (foiling the attempted exam intent of using the same hand for both nose and finger). When his doctor kindly suggested that he switch hands (thereby participating in the one handed goal of the game), Chase simply switched hands and the right hand went to the nose while the left went to the finger.
(How I wish I had a video of the entire exchange… It was hysterical!)
That any cognitive neurological conclusions were reached yesterday is a miracle to me, but it was apparent that Chase had no lack of stubborn ingenuity and the doctor, no lack of humor. One needs that sort of perspective when confronted with a bald three year old who, when asked to touch his own nose, calmly retorts: “No, you touch your nose!”

The final word on the MRI continues to be good. We did discuss some spots on the images which are small leaks – another side effect of Chase’s many treatments. If the veins continue to leak and bleed in his brain, there may someday be complications (more seizures, surgery to remove), but for now, Chase is fine and his doctors will just continue to watch the areas in question.

Never a dull… Moment by moment.