The last time Chase was in Craig’s care, Chase had a fever of 104 and his blood pressure wouldn’t stabilize.
I rode in the cab of the Lurie transport with the driver while Craig and the rest of the team sat and cared for Chase in the back. Want a crazy experience? Buckle into a transport moving “sirens and lights” as fast as safely possible down the side of one of the city’s biggest roads at the height of rush hour traffic. It has the feel of racing time itself.
That day, the last moment we saw Craig was when he delivered Chase to his hospital room, and on hearing of another child who needed to be “brought home”, he looked out at the October lake whipped in the wind and said “I wonder if they’ll let us fly…let’s go.”
Craig is one of the many incredible, every-day heroes of the hospital and we had the great pleasure of seeing him this last weekend at a Christmas concert. No transports, no medical supplies, no nothing of sickness… Just holiday smiles. And Chase remembered him! A blessed moment.
“Mom? Are you awake?” The quiet voice came into the dark room from the silhouette of a fuzzy head in the hall light. “Mom? It’s me. I just came to tell you it’s my birthday. I’m five today and I’m going to open presents and…and…what am I going to do today?”
Some days, he might need to be reminded of what you do on a birthday as the scars present their challenges, but he didn’t need help remembering that he’s here and he’s five. And neither do I.
December 12, 2012
As I watch him open presents and I frost his cake, I find myself wanting to savor every second lest I never have graduations, weddings, and all those things that come with living long years.
Yet, as the fuzzy head tucked under my chin and the downy quilt early in the dark morning hours, I could hear his smile in the shadows and that colors the canvas of the day. The smile sounds spoke to my heart again: Chase chooses joy. Always joy.
December 12, 2013
“Mom?” His voice across the breakfast table; “why are you crying, Mom? I didn’t die of the cancer. I’m five!” And I wonder in my heart how such an old soul can be only five years young. Always joy.
“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 five…” The doctor’s words always remind on this twelfth day of the last month. Five. The highest number listed in that year-by-year hope around the first conference table and diagnosis.
Today, I walked into a huge medical facility bay and stared down a gigantic white truck structure. The MRI.
Today, I watched my loving husband carry my darling son up into the structure as he spoke calmly and quietly, and Chase, red-faced and teary, clung to him and cried that he couldn’t…just couldn’t…do this right now.
Today, I stood in the bay as only one parent could go inside with Chase, and my heart ripped just a tiny bit at the sound of his screams and then it was silent but for the pounding of the machine. And I would learn later that though he screamed in the room, the minute the scan started, he became peaceful and still and stayed still for the whole test.
Today, as I held my breath and prayed for Chase in the sound of the machine, a man came up and introduced himself – the husband of a beloved proton radiation nurse who had cared for Chase nearly two years prior – what a small, beautiful world it is some days.
Today, I watched Chun, the camera man (because yes, we have a camera crew here with us now – so much more on that some day soon) peer around the corner of the machine and flash me the “thumbs up” – Chase was okay and he was done. He did it!
Today, Chase descended out of the gigantic white structure, held his arms out to me and shouted “Mom! You came back to me! I did it and I was SO brave!!”
Today, we – Bob, Chase, the camera crew, a friend from the hospital, and me – we all waited in quiet anticipation to talk to the neurosurgeon.
Today, we all stood in the small exam room to hear that the growths, though changed and grown a little more, are considered stable.
Today, we talked of movies, and keeping up with small children and their energy as Chase went through the paces of touching his nose and myriad of other normal things that may not always come easily to him and Dr. Alden knows this and watches out for him.
Today, we heard that we get to wait to look again until January and enjoy our holidays and that we don’t need to think about biopsies or treatments right now.
Today, we heard that January is most certainly a necessity and that at least one of the growing places on the MRI is still a concern.
Today, we talked about nobody having all the answers and how frustrating it is when we ask and the doctors long to reassure with decades of concrete research and can’t.
Today, we were reminded that if we see any, absolutely any changes in Chase, we need to report them immediately.
Today, we chafed against the wait again and found our spirits wanting.
Today, we were given the day, and we’ll take it…
…moment by moment.
“We were made to run through fields of forever, singing songs to our Savior and King. So let us remember this life we’re living is just the beginning of this glorious unfolding. We will watch and see and we will be amazed if we just keep on believing the story is so far from over and hold on to every promise God has made to us… We’ll see the glorious unfolding.”
Steven Curtis Chapman
Waiting for the neurosurgeon and mildly questioning Dad’s ability to assemble a Transformer…
“I’m afraid, Mom. It’s going to be really loud, isn’t it?” Chase, cuddled on the couch this chill December afternoon, voices his worries…
Three quarters of a century ago today, terrible things happened half a world away and boats sank and people died and the country went to war again. December 7.
Six years ago, late in the evening, as the sounds of the Christmas music barely faded in the halls of the church, I rushed to the hospital and Aidan was born and there was joy and a new baby son. December 7.
And now, we sit on the couch under the shadow of the almost-winter clouds and there’s another shadow too. Tomorrow comes the MRI and we sit and talk because today, on December 7 – day of all sorts of remembrance – we sit and look ahead and not back because tomorrow they’ll peer inside his white head again and see if there’s been any change in six weeks.
It’s poetic and strange how life weaves the beauty and pain in every memory of each moment and they’re all mixed together in a life symphony that requires unending grace.
Chase is scared and rightfully so. Tomorrow will mark his first “awake” MRI in two years. It’ll be mercifully short, but for 5-10 minutes, he will have to face one of his worst fears. The noise. It will surround him and he knows it and he’s frightened. He can’t escape it and this child who is never still must lay perfectly quiet in his terror for 5-10 minutes or an eternity – whichever comes first – yet another time in his little cancer life when the only way out is through. And how our hearts wish to cover him from this, but we cannot. So, through it, he goes. And he says “Jesus will be with me…and Daddy too.”
As you think of Chase tonight and tomorrow, will you please pray for him? Pray for peace to surround him as he goes into this very hard place and does this very hard thing? …and then, pray for us as our challenge comes moments after the MRI when we speak and decide over the pictures with his neurosurgeon.
Moment by moment…
“You keep him in perfect peace whose mind is stayed on you, because he trusts in you.” Isaiah 26:3
Last year and this year too, we take a moment to reflect…
This Wednesday in 2012, Chase was deep into radiation in addition to his chemo therapy and was staying in the hospital. He was weak and his counts were very low, but he was stable and so, late in the afternoon of this Wednesday, I held his weak and white body by the window and stared out at the lake, shielding his face – his eyelids covered in scabs from where daily anesthesia tape had ripped the tender skin – and prayed that they would let us go home for Thanksgiving. And then Dr. Goldman entered the room (as only he can enter a room) and told us to go. And we went.
Two years later, we are thankful for so many things and our darling Chase is still with us to celebrate.
Giving thanks… Moment by moment.
“My heart is filled with thankfulness To Him who walks beside; Who floods my weaknesses with strength And causes fears to fly; Whose ev’ry promise is enough For ev’ry step I take, Sustaining me with arms of love And crowning me with grace.” [Getty, Townend]
