Giving What You Have

Photo credit: Tracey Rees

The bald one forgot his age again, insisting that he was barely five – even though he’s nearly half way through six.

The oldest brother wants everything perfect and keeps losing his glasses.

The sister is worried for the election and significant things like human injustice, but she only ever wants to talk about it late at night.

The baby who isn’t a baby anymore only wants to wrestle and get in trouble.

And somehow we’re out of spoons again.

The days come and go with the monumental tucked in-between little fights and insignificant things that seem huge in the moment. Homework to be done, medicines to be taken, clean up the basement… again

How do we find significance in our mess and busy?

Photo credit: Tracey Rees
Photo credit: Tracey Rees

It was four years ago and a Good Friday. The house was cleaned, the children were cleaned, and dinner was almost prepared.

Those were the days in the condo and I feared having people over to the house because we had no storage and what you saw was what you got – everything was out on the surface. And with children ranging in ages from 5 years to 8 months, there always seemed to be stuff on every surface, half of it being decidedly gross. (those were in the days when Aid and Chase licked everything)

I was doubly afraid because my third-born was a wild card and didn’t fear the parental glare over bad behavior the way the others did. He was known for smiling, waving, and/or thumbing his nose in the general direction of manners and sanity.

Photo credit: Tracey Rees
Photo credit: Tracey Rees

And then Bob called and said he was running late and wouldn’t be home for dinner.

Great, just great.

I was making a desperate stab at hospitality and someone I didn’t know all that well was coming to dinner. Then we were going to have to try and make it out the door for the Tenebrae service – all the littles with only me to direct them. I was to be the herder of those with more energy than sense, those who were easily distracted by anything shiny. I could feel myself sweating.

And on top of that, what would this guest and I talk about? Having a conversation at dinner was an attempt at best and the chance of it being intelligible was severely lowered with only one parent at the table. I could just imagine the ensuing chaos. Ugh… People will post warnings about our family and our house. I’m just sure of it.

Then came the knock on the door and Tracey stepped into our lives.

She was already dressed up for the church service and I feared what would become of her beautiful light-colored outfit in my home. I could tell she was tentative and I was sure she probably thought we were crazy as I rushed around putting dinner on the table and the kids tried to be entertaining by putting together a series of banned activities for her amusement. “Miss Tracey! Watch me jump off this table!”, “Miss Tracey! Watch me stand on the chair!”

And then, as Tracey and I stood in the kitchen and made those first attempts at conversation between two people who don’t know each other yet, laying on a blanket near my feet; baby Karsten decided he would roll over.  

Photo credit: Tracey Rees
Photo credit: Tracey Rees

And that’s the moment everything changed. Suddenly, even though we didn’t know each other and the dinner was late and the kids were crazy, we were doing life together.

And then, as we sat down to our adventurous dinner, Chase leaned on Tracey’s shoulder and told her “I love you. I miss you.” And he repeated it throughout dinner, often leaning over to put his head on her shoulder. In those minutes, she became “his Miss Tracey” and to this day, both Tracey and I remember that time as one of blessing and also as one of his last more normal weekends before strange symptoms would indicate a brain tumor.

There is much to be said for the joy of shared experience in the knitting together of lives. I didn’t know Tracey before that day, but she was with me the first time my baby rolled over and one of the last times before Chase’s tumor started presenting itself. It’s taken a long time, but I’m slowly learning that these life-knitting connections are one of the most precious parts of opening my home or my life. What I have is yours (even the broken and battered stories) because all that I have is a gracious gift from God. I often hesitate and want to shrink from being around others because I want things perfect and neat before I invite someone in, and my life is rarely that way. So often, I seek to impress rather than to connect. But as I go through it all, I’m gently taught and re-taught that life and the living of it is a great gift and that I am most blessed in authenticity.

Never underestimate His beautiful plans for your broken life as you share it…

Moment by moment.

“What do you have that God has not given you?” 1 Corinthians 4:7a

(In addition to being a dear part of our family, Tracey is a gifted artist and photographer and has blessed our family with some of its most beautiful memories.)

Photo credit: Tracey Rees
Photo credit: Tracey Rees

Waiting For The Ship

I can tell you many things, but there is one thing I absolutely cannot even begin to describe.

There is a road I’ve thought I might see from a distance just a few times, but it is one I’ve never yet been asked to walk. However, one of the dear “cancer mama sisters of my heart”, Christina – she was asked to walk this road as her darling Noah went from her arms into Jesus’ on September 27, 2015 at 5:46PM. Just over six months ago now, and if you were to ask her, she might be able to tell you the days and maybe even the hours that have passed too. For Noah was just three when he stopped suffering and his family started anew.

Throughout this time, I have so admired Christina’s strength and faith and so when she opened up her hurting heart just recently, I asked her permission to share her gorgeous, raw words with you. Take a minute and hold her up in prayer as you hold up her honest, heartbroken words, and please, oh, please, let them change you as we live and move among the grieving.

Time sucks.

I am struggling with the fact that as it passes I am moving farther from the time I last held my son. Last held his hand, kissed his cheek, felt him breathe, fed him, heard his voice, and the list goes on. I know with each day that passes I am technically getting closer to the time we are reunited. But being in this middle is hard.
It kind of feels like I am swimming away from an island where life wasn’t perfect but was good, towards a ship that I cannot see but know will be coming to rescue me. The island is moving farther away as I keep swimming forward, but I don’t know when I’ll reach the ship. And in the mean time I’m struggling just to keep my head above water. I know how to swim. And I know I’ll be rescued. But this period of time in the middle is so hard.

[stock photo credit: Pexels]
[stock photo credit: Pexels]

I’ve been given little rafts along the way, breaks in the pain, but eventually have to keep swimming. I’m trying to see the blessings God is providing. And there are many. Some days I see them more clearly. And other days it gets clouded.
As life moves forward I have moments of feeling so alone.
Around here it’s not commonplace to have a child die. We don’t see it happen on a regular basis in our neighborhoods, schools, groups of friends… I know it is in many other parts of the world. But our friends, family, coworkers, and classmates get to look forward to celebrating their kids/friends/siblings next birthday. Or look forward to summer with bike rides, pool passes, vacations. We do too, but with one member of our family missing. It’s raw, and devastatingly hard. Winter has been a way to hide from a lot of what I’m scared to face. The sandbox that’s not being played in, Noahs truck sitting in the garage, his bike that he never really got the chance to ride, other little brothers running around outside with their big sisters.


Tonight has been a lot of hard. Really since we came to the year of diagnosis it’s been hard. A lot of emotion and grief overflows. Life is moving forward and I feel like I’m ready for another raft to be thrown. In the beginning there are many, and now I feel like they’re farther apart. Mostly because I’m getting better at swimming. But when I tire it comes out of nowhere and I struggle.

Noah feels farther away, I don’t see a ship, and tonight I’m tired of trying to see the positive in everything. So I’m going to allow myself to feel, to be a little angry, and pray for some relief.

Moment by moment.

[stock photo credit: Pexels]
[stock photo credit: Pexels]

Beautifully Interwoven

“You’re welcome to play in here until the nurse comes to get you.” The woman from the front desk wore a big smile and her eyes were understanding as we stood overwhelmed on that first day.

Radiation. The decisions had been irrevocably made. Chase needed further intervention to survive, and so we stood in this place and prayed against all odds and all side effects that it would work and work well. Oh, but my heart still hurt. Because some decisions still hurt even when you know they’re right just because they’re so crazy big.

It’s a good thing God knows all the things that I do not.

The play room was a small rectangular space with a fancy plastic kitchen set on one wall, a crafting center and school area against another, several shelves filled with toys, books, and games, and on the last wall was an entertainment center with a TV and several gaming systems – all of which Chase wanted to play and none of which he knew how.

But my interest was immediately drawn higher to the top of the center, where several poster boards and papers were propped. They were mostly thank you cards covered in children’s handwriting and colorful pictures, each one expressing heart-wrenching messages of thanks for life-saving treatments. But there was one piece in particular that held my attention. 

It was a large, bright poster display with row after row of pictures. In each one was a beautiful little boy with dark eyes and a magnetic smile. In most of the pictures, he was accompanied by an equally beautiful woman whose perfect smile and weary eyes spoke volumes of cancer motherhood. I knew that look. In other pictures, there were people who appeared to be family members and sometimes even medical staff. The one constant other than the small boy in the center of each, was what they were doing. For, in every single picture, they held up hands and fingers (however many it took on the given day) in a gesture of marking time: day 1, day 10, day 22, etc… On that one bright board, they had wonderfully documented and counted each day of his treatment in the center. 

And then as my white and weary Chase busied himself with trucks on the plush carpet at my feet, I studied the progression of the days and treatments – from the beginning with hopeful smiles and lots of hair to the end with joy, weariness, and what looked like lots of burns and bald.

And with the pictures was one strong thought that crossed my mind: “If this is as bad as it gets – we can do it too.”

So I held the image of the beautiful boy and his mama in my heart and every day as we went back for another treatment, and Chase grew increasingly weak, I’d quietly look to the corresponding day on the poster board and then look at Chase and remind myself that we could keep going because they’d survived too.

I now know that the boy’s name is Isaac and his life changed with a headache when Chase was only a one-year-old playing in the backyard. Isaac would finish his road through radiation a little over a year before Chase ever started. And as Chase’s 2015 ambassador year came to a close, we learned that Isaac would number among the new five who stood for 2016. 

The label on Chase’s chart reads Atypical Teratoid Rhabdoid Tumor, and Isaac’s reads Medulloblastoma, and they have yet to meet face-to-face, but most days, I just marvel at how their lives have intertwined and mirrored and how Isaac’s story has encouraged us so much.

And isn’t this why we share our stories – even the hard ones? So that someone, somewhere, can remind their own heart “If they did this, then so can I.” As we share our experiences with each other and seek to encourage each other, we pass a baton. I have run and now it’s your turn. I cannot run with you, but I will stand and cheer you on because I know the course you’re taking. 

Yes! ThisI know I say it all the time, but I don’t think we can ever hear it enough: There is beauty and wonder in our broken, interwoven lives and even cancer can be used for far greater, far better purposes as we run.

Moment by moment.

April and Isaac in the play room - Day #23 [photo credit: April Adamo Schippers]
April and Isaac in the play room – Day #23
[photo credit: April Adamo Schippers]

Tomorrow, Brave Isaac will shave his head for kids with cancer. For more on this great event, click here.

Isaac and his mom, April have taken their own experience and turned it into a great gift for others! Today, you can visit Camp Out From Cancer – their organization that provides care packages to kids with cancer (Including a tent! Our family was thrilled!)

And as always, for more on Isaac, the other 2016 ambassadors and the amazing work done by St. Baldrick’s, click here.

Need

This.
I heard it in a sermon once and for the life of me, I can’t remember who or where (or for sure, I’d give the speaker credit), but this: these words are my live preservation today.
We’re three days into the week and it’s THE week culminating in our ultimate celebration. Yet, there are deadlines, and stressors, and there’s been at least one child out of school every day with various germs and bugs, and I confess to feeling completely overwhelmed before my head ever leaves my pillow in the morning.
I wrote this down on a paper scrap while Chase was in treatment and it rings as true this moment as it did then.
We never stop needing moment by moment grace.
We never stop needing Jesus.
~MbM~IMG_2713

Take Off The Bag

I first wrote these words on March 3, 2013 in the height of treatment and I marvel at some of the ways the awful cancer shows the goodness of God. His way are not ours…

A reminder for your day: whatever burdens you is not too big or great for The One who loves you.


 

Sixteen of Chase’s every twenty-four hours are spent attached to an IV bag. This bag, its carrying case and the pump weigh about as much as he does (when the bag is full) and he must drag it behind him everywhere he goes. In addition to the weight, the cord has a short range, so he can only walk about two feet before it pulls and strains; reminding him to pick up the burdensome piece again. The moment it beeps (a notification that the cycle is complete) is the happiest moment of his day and as soon as he’s detached, he immediately starts running and jumping…two things he really can’t do without causing harm when the bag is on.

However, there was a day last week when the IV pump notified it’s completion, and instead of the jubilant “My baggy’s done!!” that I usually hear, there was silence. I went to him and said “Chase, your bag is done! Do you want me to take it off for you?” He sighed and said “Not right now, Mom. I’m playing…maybe later.” He had become so engrossed in his play that he was no longer energized to remove that awful shackle of a bag.

And I suddenly saw myself in this encounter…

How often I struggle with fear and sin that -with God’s help- I could lay aside! I could find peace, find rest, and be free of whatever burden holds me. He comes to me, much as I came to Chase and says “It is finished, this can be removed…will you let me do that for you?” …yet in my foolishness, I am content to play while my worry and fear is attached to my very life vein because I am too preoccupied to see that He stands there -more able than I will ever be- ready to remove it.

“…let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.” Hebrews 12:1b-2

Take off the bag. It is finished.

Moment by moment.

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