Tag: peace

Dear Sister-Mama

Dear Sister-Mama,

Welcome to the trenches.

I know I’ve said a lot of this before, but today, it needs to be said again: Each despairing, awful pit looks slightly different, but we’re all down here, in here together.

Your emotional and physical survival of everything from the next breath to the next decade will be almost as trial-and-error-ridden as your sweet baby’s treatment journey – just know that right now and know it’s okay too. It’s normal. Well, more “normal” really. Life circumstances just tried to cut you into tiny pieces with words alone – words like “cancer” – and continuing to breathe in these days is a victory not to be discounted.

Self-care when your baby’s in the ICU seems wrong and even selfish, but it’s not, I assure you. No matter how your inner voice wants to condemn you for anything short of laying yourself out next to them in the same pain they’re experiencing, please, please remember that your darling child’s care is only as strong as you are. You are the advocate and the voice, and 99 times out of 100, the responsibility of medications, schedules, feedings, sterilizations, etc, will fall to you. I’ve found it’s much easier to deal with it when I can see straight.

So, with that in mind…

Rest when you can. Trust me, there’s a reason sleep deprivation is used as an alternative questioning tactic in military protocol. When Chase was in treatment, I would have confessed to anything and actually had to stop driving because I was seeing wavy lines and shadows in the corners of my vision. Having a pediatric cancer patient is not unlike having a brand new baby in this way – please try and sleep when they sleep. You’ll need it.

Walk out of the hospital. For real. Even just down to the sidewalk in front of the building and then back. It sounds like the tiniest thing, but if you don’t make a conscious effort to incorporate the outside world in even minuscule ways, it will shrink and then go away entirely – leaving you with nothing but the cancer – which isn’t mentally healthy. And, let’s face it: who among us wants to give this awful terrorist of a disease that kind of credence in our lives? [hint: not me]

Seek a community. Church, friends, family, other cancer patients. Get involved on some level. Don’t let cancer take up all your mental and emotional energy. It doesn’t deserve that much from you. See also: my previous point on world-shrinkage.

See your dentist. Yes, I said it and meant it too. There’s a reason I don’t like to smile with my lips open. When you spend days being shuffled from room to room for appointments and rushing to emergency rooms, you’re just trying to remember to breathe, and maybe if you have an extra second; eat. There’s very little time for thoughts of flossing. So, from me to you: treatment will take it out of you on so many levels, but if at all possible, remember you have a dentist.

Have a mental safety net. Whether you see a counselor, talk to your spouse, or sit down with a dear friend, have someone there to keep you from feeling like you’re going crazy. Cancer is truly a war of it’s own kind. Your body responses will become conditioned to incredible long-term, high-stress scenarios and evidence points to this type of emotional and physical toll not being healthy for the brain. Some universities and medical institutions are even starting to pick up study links between traumatic pediatric care-giving situations and high rates of post traumatic stress – the same thing soldiers who’ve been to war face. This area is no joke, dear sister-mamas. Don’t be afraid to get help. You’re not going crazy. Your life is crazy. And no matter what you’re feeling, YOU ARE NOT ALONE.

There are so many other things I secretly want to throw out for you: go out with friends, have friends come to you, eat chocolate, read a book, cry, laugh, write, take a long walk… But the last thing you need right now is one more person telling you something you need to remember – yet one more alteration you’ll be making to your life. Psh… Chances are good you’ve already experienced enough alterations to last for three life times.

Whether you’re arms will one day be empty or atypically full, life is desperately short. No matter the kind of cancer story you’re called to, it will undoubtedly be a life-long marathon, not a sprint. So, stay the course, dear sister-mama. You are not alone.

All my love from the trenches,

Ellie

Napping in the oncology ward

When The Evening Comes

Today, Matt Redman releases his new book, “10,000 Reasons: Stories of Faith, Hope, and Thankfulness Inspired By The Worship Anthem”.

When David C. Cook sent me a copy of the book a few weeks ago, I was delighted to read this book not only because Chase’s story is featured (for real!!), but also because we have met and come to love Matt and his heart for worship and I couldn’t wait to dive into that same joy on a page. So, I mentally prepared myself to feel blessed and inspired by the stories of this light, 164-page read.

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What I wasn’t prepared for was the complete challenge and theological depth that pervaded every single page. I expected this to be a learning experience through others stories – and it is that. But it is also full of gentle soul-preaching: the act of spinning these stories out into a greater understanding of the heart of God found in the Word. Each story thread from Matt’s own life and the lives of others is tied back into the bond of who we are in Christ and who Christ is to us — making these pages anything but “light reading”, and oh, so rich!

You guys, for lack of a better metaphor in this moment (I can’t think of brilliant things when I’m super excited – which I am – about this book!), this work is like a protein shake for your soul. It will replenish you in ways you didn’t even know you were hungry.

Too often, when I hear words like what Matt and Jonas wrote into the “10,000 Reasons” song, there’s a part of me that wants to say: “Well, that’s all very well and good to want to be singing when the evening comes..but I wonder how you’d feel if your life were ever really difficult. What would you write then?”

Gauntlet = thrown. Christ = proved again and again.

For, as this book will show you both in the life of Matt and in others around him, God is found to be enough and singing is possible in the evening not because hardship has never been experienced but rather because they’re in the middle of it!  The worship is often sweeter in the suffering because our heart cry is not just wished upon the “some day” of Revelations 21, but is proved again and again in the now. He is our God and He is with us always.

I would highly encourage you to grab a copy of this book and make it a priority even in these last of the summer days. You will be refreshed and encouraged to press on –

Moment by moment.

Our scars are signs of God’s grace in our lives – signs that we’ve been through something and that we have made it to the other side. They remind us that we are not where we once were and that God has brought about a victory in our lives. Our wounds may have been dark, but the promise of God’s love has been tested and proved in our lives. When we look back, yes we see pain, but more than anything we see provision and protection, and the ways God has made us ‘fruitful in the land of our suffering’. -Redman, page 128-129

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[You guys, I need you to know that Matt’s publisher sent me a copy of the book as a gift because Chase appears in one of the chapters. There was no official expectation or request for a review. This is just me being me. 🙂 ]

Why Your Violence Offends Me

Dear Sons and Daughters with the Guns and the Hate,

Stop. 

Please stop, I beg you.

I may never understand what it’s like to be you and it breaks my heart that I can’t ever fully enter into your personal journey through whatever you face: racism, injustice, marginalization; even murder. My only right to beg for a ceasefire comes from living with a different kind of pervasive threat – in which my child has a less than 20% chance of survival and less than 4% chance of the government ever acknowledging his right to that narrow margin of life. 

I’ve stood alongside bald, gun-less fighters and weeping parents treated both justly and unjustly as they did everything possible to preserve life. And I’ve stood over hauntingly tiny coffins too.

There is very little I can do against the pervasive awful of cancer to preserve life for my baby, but there is so, so much you can do against the pervasive awful of hate-cancer spreading to someone else’s baby.

Did you hear me? You have the amazing ability to give life, not take it!

I’m not suggesting you lay down the fight. In fact, never stop fighting for what’s right and just. Just stop with the guns and the hate. Please, find another way – for the sake of the mothers, wives, and even children with empty arms, for the sake of better, greater, and more: STOP HURTING EACH OTHER.

I truly believe with all my heart that you were made for far better things than this.

Lovingly,

A Mother

Walking Through The Door That’s Been Opened

“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…

Moment by moment.

[Photo credit: Pexels]
[Photo credit: Pexels]

Do You Want To Talk About It?

We sat curled up on the bed – just her and me – the only two girls in this whole house full of boys.

“Do you want to talk about it?”

Darcy’s nearly ten-year-old voice was calm as she described almost dispassionately what it was like to discover her two-year-old brother having a seizure when she was only six. And then, her tone changed and suddenly, like a full-fledged adult, a hand came up to her face as her eyes welled up. “I’m so sorry…I don’t know what happened. Sometimes I can’t talk about this without crying…”

Oh, how I know that feeling! Even when Chase is in the next room – living, breathing, and probably getting into trouble, the flashbacks can still take my breath away in an ordinary conversation. 

Darcy and I ended up talking for a long time and crying some too, and it lead to these words… Because sometimes I forget how hard this is for her, Aidan, and Karsten.

Aidan, Chase, and Darcy [photo credit: Jan Terry]
Aidan, Chase, and Darcy
[photo credit: Jan Terry]

For the “cancer” siblings: especially the littles…

Set the tone for understanding — To a child, sickness (of any kind) is contagious. I didn’t know this until we talked, but that early Tuesday morning when Chase was taken to the ER and Darcy and Aidan cowered in the shadows of their room, Darcy kept watch over two places. She told me she’d go to the window and check to see if the paramedics had taken us out yet, and then she’d go back and check on Aidan to see if he was seizing too. She stood in the dark of the room and thought it could be all of them…all of us. It would be some time before she and Aidan fully understood that cancer could not be caught from or given to another person. 

Presence can mean peace — They say nothing is worse than whatever you imagine and I think it may be true. We couldn’t always bring siblings to the hospital because Chase was in isolation so frequently, and our gut was to keep the very worst of diagnosis and treatment from them on some level, yet, Darcy told me that the times she felt most at peace were when she could either come to the hospital and see Chase personally, or when we’d FaceTime from our room in the oncology floor to Grammie’s house. She could see the IV cords and watch him vomit, but she could also see that he was alive and that was what brought her the most joy – just seeing he lived. 

Set the paradigm — This one is kind of interesting to process because Bob and I actually didn’t have the luxury of telling our kids Chase had cancer. We were completely separated from them for a full week and their grandparents had to tell them before they found out from a third-party as loving friends surrounded them in those first days.  But that being acknowledged, we’ve found (through trial and a lot of error) that explanations whenever possible can be very helpful. Whether it’s why Chase was getting gifts and special attention or why mom and dad seem so distracted, tired, or weepy, sometimes an age-appropriate conversation provided better understanding than pretending it wasn’t happening, brushing questions aside, or simply evening out special gifts among siblings. Our family motto has become: “There’s nothing we can’t talk about”. Hard, but good. 

Help direct emotion — Chase’s siblings cannot live through all that they’ve seen and not be significantly changed. Whether it’s memories of me laying on a gurney clutching their motionless brother to my chest or listening to kids making fun of a post-treatment Chase behind his back, there is a lot of fear, hurt and anger.  A lot. We spend a significant amount of time talking through how those feelings of fear or angry protection are a completely normal human reaction to what they’ve experienced, but it’s what they do with those feelings that will define them. We pray often that these things would make them and not break them, and that they would be strengthened in compassion and prepared to defend the weak because of what they’ve lived. And then we try and find ways to apply it to the every day.

Be prepared for deep feelings — This one surprised me and still does. Somehow, I expect that a lot of what we’ve gone through went over their heads. Not so – at all. They may not understand the word “terminal”, but they can sense it. There have been times that Darcy wanted to sit and talk and then others, like when she’s at school, where she hasn’t wanted to talk about Chase’s story at all, but she’s very aware of it and who she is in it. She explained that the kids don’t understand and the teachers all want to hug her and while she appreciates the love, both of those things make her feel very vulnerable. She doesn’t want to cry at school, but sometimes she needs to come home and just have a good cry over it.

Look for seasons of rest — Having a sibling with special cancer or neurological needs is as full-time for them as it is for us as parents. Whether it’s making a concession over parental attention, curtailed family activities, partaking in extra “cancer activities”, or interacting with a neurologically, emotionally, sometimes physically demanding playmate 24/7, I sometimes don’t even realize (in my own exhaustion) how tiring living with a cancer sibling is for my other kids. But Darcy could explain it to me; sharing how sometimes she can’t handle Chase anymore, but other times, she misses him and is slowly learning to listen to him when he demands her attention because he says things like “I’m a survivor, Dars!” (his pet name for her). And like adults, the siblings can have a layer of guilt over annoyance during a stressed family dynamic – especially when it’s towards a family member with a terminal illness. The guilt alone is exhausting.

There’s just no wrapping these things up. They’re messy and the dynamics continue to unfold as the kids change and grow and Chase lives on in his complications and joy. Some days are beautiful and could be used as parenting seminar illustrations and others feel like a complete wreck in which we need a bomb shelter rather than a house, but spending time with Darcy on this subject reminded me once again how good it is to just sit, talk, and pray together. We are not alone.

Moment by moment.

“Teach us to realize the brevity of life, so that we may grow in wisdom.” Psalm 90:12

The princess and the super hero
The princess and the super hero

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