When he says it, he is quiet and centered, strangely introspective – unlike his usual energy-filled self and it means his heart hurts. It means he understands separation and he wants to stay together. But in typical childhood fashion and typical outside-the-box Chase fashion, the words come out differently.
He clutched my hand, fighting the drugged sleep threatening to take over his conscious thought and whisper these words to me – “I will always be with you” – as he went in for his MRI last Monday. But it was the night before that the words first stuck to him and he asked if I would write them out, not for him, but for his siblings. Then he put his head in his hands and sat cross-legged on the kitchen counter, just staring at the part of his heart that they’d discover in his absence the following morning.
The kids fight and squabble, and a good eight out of ten times, this bald boy is the instigator, but in the tense times, they rest in each others arms and love and they write out their love for each other because, well because “I will always be with you”. Somehow, reassurance of presence is, in itself a comfort. And somehow, the not quite sense-making words of his hurting heart are the ones that make the most sense – because he dares to stop, breath deep, and say them aloud.
Don’t miss the opportunities you’ve been given to connect with the ones you love.
ENCOURAGEMENT: /noun/ the action of giving someone support, confidence, or hope.
Giving support to others not only requires mental and emotional energy, but also and often a shade of vulnerability. I have to open myself up to help someone else. And this aspect of living in community, well, it can get complicated when I’m heartsick and weary. How can I possibly care for someone else when I feel in shreds…when my family feels shredded and resourceless? I suppose I expect to care and serve others out of my own excess of peace or joy. So how do I give joy when I don’t feel it in my life…when there is seemingly no excess? And how on earth do I teach my kids joy in the atypical?
I worry for the other three all the time: how will Chase’s cancer diagnosis harm them? How has all of this defined them or broken them? …perhaps even in ways we can’t see or won’t know until they’re adults themselves? (2:00AM thoughts that push the ‘panic’ button)
Will they struggle with what to believe? …with who and how to love? …with their life purpose? And how many of these struggles will they be able to pinpoint the birth of in a sibling’s terminal illness, subsequent struggles, and the too-often mentally, emotionally, or physically absent parents who should have been at their sides.
I want to fix all of these things before I even confirm their brokenness. I want to pre-empt all the pain and cushion it. And I acknowledge in my heart and even as I see with my own eyes that it often isn’t the big moment kicking in the teeth of their precious hearts, but the little one. If L-O-V-E is truly T-I-M-E, then it really is a moment by moment fight for the good to win through all the pain and craziness.
And here’s what I’ve found: there is so much I can’t take away from them, but there are things I can give them – almost like tools to build or weapons to war. Because life may be atypical, but it can still be incredible – it may not always be “good”, but it can still be right.
“Share each other’s burdens, and in this way obey the law of Christ.” Galations 6:2 NLT
Share.
Obey.
We were created for this. Despite the vulnerability and pain, we survive as we share the ups and downs of life with each other.
What does this concept look like in a feet-on-the-ground, eyes-open-wide way ? And what does it especially look like when the burden is a life shadowed by complicated illness and the burden carriers are little children?
FaceTime in the hospital
Notice Others: A huge part of developing encouragers is fostering awareness of those around you. Go around the dinner table and have each person say something they like or appreciate about the person to their left. This makes us have to consciously consider the good in others, and as we see this, we often see their hard things to comfort too.
Seek To Relate: “Do to others as you would like them to do to you. (Luke 6:31 NLT) This goes one step deeper than just seeing the person next to you. Actually try and put yourself into someone else’s shoes. Try to feel what they feel. This can be complex and even offensive in painful moments, but painfully easy and wonderful in life’s joy moments. And perhaps, there will be a fantastic and interesting discussion as you tie what your kids know and feel to what someone else close to them might know and feel.
Be Authentic: There are few things that can’t be worked through by talking to each other honestly and openly. If we genuinely don’t know what to say, I believe it’s okay to express that inept or powerless feeling and talk it through. This is often the most vulnerable moment, but also the most rewarding for in opening my heart, I invite the other person to open their heart as well.
Celebrate Victories: Some victories will look like winning and others will be simply refusing to let the darkness, weariness, stress, or anger in. To feel the pull of pain, to deny it, and to choose joy or hope instead is a staggering victory and should be celebrated as such. (These moments aren’t always deep and nuanced. For some people in our family, this is as simple as forcing themselves out of bed the morning after a long day in the hospital.)
Just Stop: Sometimes I just have to stop and sit. Gather up my precious babies onto my lap, or under my arm, kiss their heads and tell them I love them. We cover ourselves with a blanket and just snuggle for a bit. Then, I breathe deep and say it aloud: “You guys, let’s just take a minute.” Because nothing tears at the heart and mind like constant, unabated stress and sometimes, miraculously, the petty fights and little hurts resolve themselves as we breathe deeply and remember love, not hate.
Just Go: Yes, sometimes we need to stop and breathe. However, other times, we need to get up and go. Hang the schedule and the clean house or the project that’s still not done… just go for a walk together, go to the park together. Or, even better, go check in on a neighbor, take popsicles to someone who just had surgery, take coffee to Daddy at work… These small things, especially the things that allow us to serve others are a constant, tangible reminder that we were not created to function in a void and that our personal pain, stress and hardships do not comprise the only story in the world. Breaking down the boundaries, meshing with others, reaching out – all of it – is like water on the tender growth of sensitivity.
Orchestra concert cheerleader
And dear ones, I hate writing list points because it feels like accomplishments checked off and won. The truth is: we are broken. We fail at these ALL the time, scratching each others’ eyes out with our words and our selfish hearts just as often as we hug and bind with joy. But I’m writing these things down all the same because I need to remember, and maybe, just maybe, you’ll find something encouraging here too. You are loved.
Moment by moment.
“All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort.He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” 2 Corinthians 1:4
The vase crashed to the floor, shattering the fragile glass. Water and greens tumbling off the wooden table and onto the freshly cleaned carpet as the rolling, tussling boys reversed direction, their war cries drowning out any attempts to arrest their attention.
And the irony was this: as my blood pressure escalated with their fight, I wanted to laugh because I was supposed to be writing about godly contentment.
“Jesus… What am I doing?”
Hannah and Chase
How do I possibly write about something that seems to be disappearing even as I reach for it? No, not even reach…just consider it. The more I tried to put trust in God and the contentment He brings, the more I tried to put that down on a glowing computer screen, the more it seemed to allude me.
And then short days later, we were driving through the dark hills of Pennsylvania with the DVD player blaring Holiday Inn and the unpolished, unfinished words had yet to be fully written and that’s when the panic set in.
“Jesus… What am I doing?”
Karsten and Benjamin25-year-long friends
And then it was suddenly the morning of getting up and saying all the words – speaking them to people who needed to hear. How do you give help and answers when you’re the weak one?
“Jesus… What am I doing?”
And then the answer; quiet and true. I’m doing nothing. I open my mouth, but it’s up to Jesus to open ears and hearts. And isn’t that just like Jesus…like his written promises stuffed throughout the Bible?
Strength when you need it.
Strength only and best when you recognize your weakness.
Strength to your own heart when you try to help others – so much blessing in service.
It was in laying down the stress of finding the right words, laying down the pressure to be the right person, that God made it right – made it light.
God uses the broken.
Moment by moment.
It’s far easier to practice contentment if I don’t think about any of it, but that isn’t true peace. At times, it’s almost easier to accept that parts of our stories are random than that the painful chapters could actually hold great beauty and purpose. Don’t be afraid to lean into Him for the hope he’s promised. ~ a brief quote from my time with the ladies of Bethel Baptist Church in Wilmington, Delaware
For the full transcript of the December 3rd Christmas tea talk: “The Gift Of Godly Contentment” (wherein I share what it has looked like to wait for God in our silent and desolate times) – click here.
“On my way to ER. Stopped at cross street for her ambulance…”
The sound of my father’s heart breaking through the text was almost palpable.
Back in the middle of the day, before my mom’s heart started beating like it wanted to come out of her chest, I glanced at the clock on the dust-marked dashboard of the van and saw I was late…again.
Chase had been able to go back to school a few days after the eye surgery. However, there could be no recess, no gym, and I had to come to the school and do his eye drops every day as the duration of the week required medicine to be administered every four hours.
As I headed into the left turn and the familiar road across town to his school, I felt the grumble rising in my heart. I’d had to stop what I was doing and negotiate a stubborn four-year-old into the van at his lunch time just to go cajole the bald, six-year-old patient into letting me do eye drops…again.
And then I started thinking about how most days, the hardest part of having a child like Chase post-treatment isn’t the threat of relapse. It’s the day-to-day giving of my time in extraordinary amounts. That would make a good blog post… I thought; Ten Things I Wish You Understood About Life With A Special Child…yes. It’d be trending-ly epic.
I know the dislike of sacrifice sounds a little crazy because as parents, as lovers of Jesus, and as human beings, we are constantly called to lay ourselves out for those around us in extraordinary and unusual ways, but wow, I fight it when it comes to Chase at times and I know it often boils down to secret, shameful, comparison. I look at other families around me and what they’re doing with their four kids or their six-year-olds and I suddenly chafe at my life and my “normal”.
I continued to fight and struggle through the day, mentally laying an inordinate amount of blame on the mid-day eye drops that had seriously taken less than 30 minutes of my time. But of course, I didn’t feel like being serious or literal. I felt like being sorry for myself and how hard things are when life gets interrupted by the constant call of the unusual.
Somehow, the day passed. After hearing about school, administering snacks, shepherding homework, completing another round of eye drops, and having a video conference for the book trailer, I called Bob to tell him my day had gone off the rails and dinner would be super late (again). And just as we were about to head out the door and pick up dollar tacos with friends, the text came from my dad.
The doctors use the words “atrial fibrillation” and then hyphenate it to “A-Fib” and it sounds like a medical drama show, but it really just means that the heart is at war with the body and nobody is quite sure why it starts, but my mom, she lay white as a sheet with her heart rate up at 200, feeling like something wanted to burst out of her chest and finally, when her arms and legs went numb, the ambulance came. In our vapor-short lives, things can change just as fast as a call to emergency response.
And suddenly the eye drops and dollar tacos and all of it disappeared and our kids ended up at another friend’s house so Bob and I could both go to the ER.
We were given the directions to the room, and as I turned the corner onto the A unit, my own heart nearly exploded out of my chest as I stood in front of the room I had not seen since I irrevocably followed the Lurie transport team out the door with my Chase on Tuesday, July 31st, 2012. The first cancer day.
Feeling physically faint as I had to pass the memory, we entered the sliding glass doors to my mom’s ER bay where my dad, his eyes filled with worry and love, was light-heartedly explaining to the humorless nurse how “You see, when I come into the room, Leslie’s heart goes all aflutter…haha…ha…” My whole life, this has been how he chooses hope and I love him for it.
By the end of the evening, the medicines had done their job, the color was back in her cheeks, and they talked about her “normal sinus rhythms” and used the neon green lines on the monitor as an example of her ability to go sleep in her own bed that night. And she hugged me very close and said “I’m so very glad you came.”
I carried those words and the joy-feelings of fellowship and prayer around her ER bed with me into the next day of crazy and eye drops and general life and it made me think: My mother’s heart is at war with her body and my life is still getting interrupted by little bodies on the regular, and I may yet write that post about living with special children, but I felt fulfilled despite the piles of undone things standing out in every corner of the house. And it was in this week of eye drops and hospital visits and dollar tacos that never came to be, I realized (again) that what I want for my life and what I need for my life are almost never the same things.
I want stability and normal and quiet days where my average moments could litter a home and garden magazine with their poetic beauty. God knows I need eye drops, special children, ER trips, and facing my hardest memories to keep me real and draw me closer to Him. Sometimes, you just have to walk through the door that’s been opened for you…
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
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
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
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: Pexels]](https://i0.wp.com/www.chaseawaycancer.com/wp-content/uploads/2016/04/red-school-blur-factory-1024x682.jpg?resize=760%2C506)
