The Timing of Cancer

I’d say I don’t have time to write, but that’s inherently untrue. We all have the same amount of time and I could use some of it to write. My father, the professional editor, would say to write precisely what I mean. In the interest of honoring the teaching of the man who rocked my baby to sleep for me this evening, I shall.

These past two weeks a myriad of extra demands and responsibilities filled our schedules and writing wasn’t a priority.

My favorite scene from Saved By The Bell was from the very dramatic episode where Jessie Spano gets addicted to caffeine pills. Pressured by a ‘lack of time’  to study for her Geometry test and perform for talent scouts, she claims she can’t sleep and accomplish it all. In dramatic meltdown, she wails,  “I have NO time!”

Jonathan’s home and health teacher will be here for 11 more minutes. Downstairs a workman is sawing and installing baseboards so that Jonathan can re-enter his “safe room” in the basement. I’ve just ironed shirts for my husband who was called out of town yesterday for a quick trip, and Elizabeth just woke up from her quick nap.

The house is filled with half-finished tasks that demand TIME, attention, effort…

These two weeks carry the weight of this year and so much more. We have fought Jonathan’s cancer for six months and we are only on the second treatment. Another year looms, but we can’t’ just wish it away. A year holds so much in those early years. By the time we are done with treatment, Elizabeth will be one. She represents the growing and learning we are all doing- much more gracefully than the ever-increasing lines on my face and white in my hair.

The week of March 21, 2015 was a hard one. Only three years ago, William was nearly done with his treatment for leukemia. We celebrated World Down Syndrome Day… and then I went home with a raging fever. Someone in the hospital had a deadly virus called “c diff” and it was carried to William. Without an immune system, it raged in his body. We stopped using sheets. He swelled from morphine and steroids. His skin on his cheeks peeled away and bled.

A month from the finish line, I was afraid I would bring him home in a casket instead of in my arms. 

That month of recovery seemed longer than any of the previous five. Time is tricky that way.

We lost our predictable routine and our structure.

Structure is essential for our sons with disability and the consequences of disruption are evident. We have really struggled this week, so we are bringing back many of our visual aids and tools to help the boys. We press on.

It is tempting to give way to the chaos. It’s tempting to be frustrated and pitch a fit. Instead, I iron.  I watch steam rise and hear the gentle hiss from my iron as one by one, the wrinkles are ironed away from my man’s shirt. I iron and I pray. God is outside of time. He is not stressed. He is not rushing. God provides the structure as everything else gives way. I can trust Him, because he has always been trustworthy before. He is the anchor in the chaos.

Iron. Pray. Press on. Iron it out. Keep going.

So now school ends and two children are hungry. Laundry’s cheerful calls me calls me. The saw whirls and my father hands me a baby and heads to the stove. My William survived and is thriving at school. Jonathan’s visual schedule is in front of him as he sips chocolate milk and waits for a grilled cheese sandwich. The baby coos more impatiently– and so I pray for God’s presence in each moment. He’s here with me in the mundane, which is Kingdom Work. Painful forging into the image of Christ is hard work and takes all the time we have.

Now, to my children. It’s time.

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A Wonderful Family Movie Night

I could only hear muffled male voices wafting down the stairs, but something humorous had occurred. As they descended, My Man announced that Jonathan had chosen our Sunday Family Movie.

Jonathan, out of the blue: “Dad! Can we watch Wonder Woman?”

My Man: “Well, I bought it for Mommy to watch. We will have to ask her.”

Jonathan, instantly and authoritatively: “Don’t worry. Mom loves superheroes.”

True, I had not seen the new Wonder Woman movie, despite the hype. I feel like one of very few, but I was pregnant with a husband overseas when it came out.  I was too busy channeling my inner Wonder Woman to see the movie.

My Man used some extra Amazon credit to buy it for me, and Jonathan saw it in the Watchlist. As is our Sunday tradition, the family settled in and pressed play. I was fairly excited;  buying essentials on Amazon.com was about the closest I’ve felt to an Amazonian princess lately.

As the mythological origin story unfolded and the statues of the gods were displayed on the island, Jonathan chimed in with, “Um, where is Jesus?” My husband and I chuckled and exchanged a high five. Superhero stories are full of doctrine if one’s panties are not in a bunch.

As predicted, I did NOT finish family movie night. Over the course of the movie I nursed a baby, fixed a toy, put away dishes, rocked a baby to sleep, and did a bedtime routine. As all Wonder Women know, the Mission is always interrupted by other work and other missions. IMG_4023

The movie progresses with relative comfort until Will needed a bathroom break. We headed upstairs, not looking at the explosions over our shoulder. (A common occurrence for me.) Then I heard Jonathan’s unmistakable singing voice. At a climactic fight scene when things are going poorly, he sang a song we frequently use from Daniel Tiger’s Neighborhood. “When something is bad, turn it around and find something good! Jonathan’s interjections certainly improved the movie experience.

The best part of the Family Movie Night experience wasn’t the movie. It was Jonathan saying, “Look! Like Mom!” (Obviously. Clearly, we are twins.)

(This photo was taken at his insistence during a superhero-playtime in September, the week before his tumor burst. I was 7 months pregnant. Gal Gadot was 5 months pregnant during filming, but she had a green screen.)

My heart soared.  After all, I want to be a heroine as much as I need a hero. (Mandatory side bar moment to sing, “I need a heroooo!” a la Bonnie Tyler) Jonathan, for whatever reason, thought I was like Wonder Woman. It was the reminder I needed.

Jonathan didn’t see the movie crew, the hours of work outs, trainers, costume designers, green screens, and tremendous work to make the movie. He saw Wonder Woman.  During the training scenes during the movie’s beginning he asked repeatedly when Diana would turn into Wonder Woman.

Isn’t that the way with us? We don’t want to think about the effort and refining process. I just want to put on the costume, wield the weapon and BE the hero while skipping the process of becoming the hero. I want her figure without the work. I want to be strong without the strength-building trials. We want to defeat evil or end wars without the fight it requires. Heroes knows there is more work to do and how flawed they are–they aren’t comparing themselves to others.

I’ll be the first to say I am NOT Wonder Woman… but boy do I ever want to be her. While I am striving to become something, my kids see me being something.  That is how heroes are made, after all. They refuse to do nothing and instead just do something. Most the time, it turns out to be Wonderful.

The world needs heroes. May we be them. May we raise them.

 

 

When Grace Doesn’t Feel Sufficient

“I’m sorry to ask. It’s just that I’m desperate.”

Tuesday night I slept from 11pm to 1am.  The remainder was spent running between a nursing baby and trying to calm William’s restless spirit and body. Sitting in the darkness with a beloved child that is struggling depletes a mother physically, mentally and spiritually.  I was nearly in tears by dawn, when my husband left for another hard day at work. Unfortunately, William doesn’t have school on Wednesdays. I had all three kids under my wing with no ability to shake my tail feather. In those moments the most basic tasks are impossible. Milk is in the pantry, shirts are on backward, Pull-ups are launched over banisters and juice misses the sippy cup and washes across the counter.

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The autopilot kicks in and we do the routine in a stupor, just from experience.

Bible verses feel insufficient and callous in these moments of delirium.

I did not feel equipped for all good works. I did not feel like His grace was sufficient for me…except that my weakness was VERY evident. I get angry that I don’t have enough to do things on my own. Why would God not give me what I asked for…so that I don’t need to rely on Him? (Wait…that may need some reconsidering!)

By noon I was running into walls and couldn’t keep a loving tone.  I tried to force Jonathan to consume a few more calories, diapered the baby, and watched William knock over the trash can. My cheeks here hot with desperate, frustrated anger. The visceral desire to make the source of discomfort stop welled up and I breathed deeply. These are the glimpses when I understand those who do terrible things when they aren’t reasonable– they aren’t in their right minds! The human capacity for strength and depravity cannot be underestimated. This is why the people we hail as good and as heroes often say they are the worst sinners and most vulnerable to evil. We all need help, me most of all.

This is when feelings and thoughts can not be trusted. What we have imprinted on our hearts and minds before the moments of crisis will control our autopilot. Many, many nights without sleep chipping away at my self control and patience taught me valuable lessons. First, I need 4 hours of sleep a night to function. If not, an hour nap is necessary. Along with figuring out my physical needs, I know that “Jesus, help me!” is a perfectly acceptable prayer.

One of the best lessons cancer has taught me is this: Grace doesn’t have to feel sufficient to be sufficient. I must fight my very real, raw and valid feelings that tell me God is not providing, Christ’s blood isn’t enough and that it is up to me. These are lies, and being on the remission side of cancer assures me of that. When I feel like I can’t go on one more day, I know that energy to care for myself and the kids will come supernaturally. I used to have faith that it would be true, but now I have seen it.

If you are CLINGING to hope right now and secretly doubting that you can push through, you aren’t alone– but you are CORRECT. It’s daily bread for a reason. When I feel overwhelmed that chemo will take a year but side effects can last a lifetime or I wonder what adulthood with disability will look like for my sons, I am tempted to despair. I don’t have the strength for it! If I could handle it, I wouldn’t need God. His grace is sufficient.

The more we lean on Jesus and trust that He will provide, the more confidence we have after he shows up again and again. That’s the joy we get in struggling that we lack when things are good and frankly, we feel like that bit of coffee or chocolate is enough to help us over the bumps. The gospel should be the first thing I run toward, not what I cling to when I am overwhelmed by deployments, autism, Down’s, leukemia, brain tumors, laundry and baby-weight.

God cares about our needs.  I am clinging to hope, but I am also taking relief where it an be found. God is providing through others.

I desperately called one of his teachers who had seen him struggle at his very worst. It was the first sunny and warm day in months and even on her day off, she gladly scooped up William. Away from the stress of a newborn, cancer, and a depleted mother, he played with friends and laughed until exhaustion came. It allowed me 45 precious minutes to sleep on the couch while the baby napped and Jonathan played on the iPad in the next room. It blessed her to keep him, it blessed William and it certainly blessed me.

God provided for my children, just not through me.  It is humbling, but I realize that he does better with others than at home.  He has been with older kids who are gentle and patient in him, teachers who engage and praise him, and he is away from the stress of a new baby and cancer that never leaves this home. I receive pictures of my boy smiling, laughing and trying new things in situations I can’t offer. Multiple families are enjoying him and their children are positively exposed to disability and learning to love beyond appearance and ability. That’s sufficient grace.

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My little Joy loves music, but to draw out her biggest smiles one song will do. Perhaps the truth in the words are the reason, because it is what draws out my best as well.

Oh, how sweet to trust in Jesus,
Just to trust His cleansing blood
And in simple faith to plunge me
‘Neath the healing, cleansing flood!
Yes, ’tis sweet to trust in Jesus,
Just from sin and self to cease
Just from Jesus simply taking
Life and rest, and joy and peace
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His grace may not feel sufficient. It may not feel like God is providing all you need right now, but I know this– you can trust what you can’t see or feel.  Following him is easier when the path is familiar. Maybe one day you can do it in your sleep… or lack there of.