Why We Weep (according to a 6 yr old)

There are some things parents do, no matter how many times we swear we won’t do it. We ask ridiculous questions and say ridiculous things. Today I fell prey to one of the basic blunders. No, it wasn’t challenging a Sicilian to a battle of wits when death was on the line… ( a reference from The Princess Bride)

I asked a question that has sparked outstanding answers over generations. Why do we weep? Ah, the glimpses of our greatest pains and triumphs? The joys of wedding days, the sorrow of death, the release of endorphins after a near death experience. Why do we weep in this house? The inspiring answers could be endless…

WHY are you CRYING, Jonathan?

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  1. I want a family movie night! (5 minutes before bedtime) Make time go slower!

I can do MANY amazing things, but controlling time is above my pay-grade, Son. I shall now pause for 10 seconds to emphatically sing the chorus of “If I Could Turn Back Time”.

2. Elizabeth is crying

Well, I suppose a brother is born for adversity.  As Dolly Parton said in Steel Magnolias, “I have a strict policy. Nobody cries alone in my presence.”Yet it was only last week that Jonathan comforted his baby sister with, “No, no Elizabeff. There is NO crying in baseball!” How short our memories can be. 

3. I don’t want to eat my quesadilla or the crust!

(He ate it…and they don’t have a crust.)

4. Why does the Green Lantern have to be GREEEEEN?

5. The shower water is too hot, too cold, too warm, and too wet.

Right-o. isma

That was just the last three hours. The other two were equally emotionally stable. I say, “Row well and live”, they drive us straight into an iceberg.

This week has been one for the record books, my friends. Tears may be no more in Heaven, but there is weeping and gnashing of teeth in Hell. Right now, this house looks…less than heavenly. There are more indiscernible explanations through sobs happening in the kitchen than in a girls’ bathroom at a middle school dance.

 

This week was a breaking point for all of us. Schedules are filled to the brim with doctor’s appointments and new strains. There has been weeping from teething, weeping from over-exhaustion, weeping from deep pain, weeping for the joy of prayers answered and sleep finally coming to those who need it most…

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Crying doesn’t have to make sense. It doesn’t have to be logical. At least, it certainly doesn’t in this house. I am confident that before long, we will be laughing until we cry once more.

“Laughter through tears is my favorite emotion”… even if the Green Lantern has to be green.

 

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Suffering For The Lord, and other things that happened at Fort Belvoir

I am now accepting applications for a personal press secretary.

Perhaps I am just used to translating toddler-talk and reading between the grace-filled gaps with sleep-deprived mothers. Perhaps I just assume people will know what I mean, or will just smile and nod. Perhaps one day I will remember how to speak coherently without interjections of “Get that out of your mouth!”  in every other sentence. Unfortunately, today was not that day. Worse, I was holding a microphone.

It’s a powerful thing to be able to say “Hi. I have a son with Autism and a brain tumor. I have another son with Down Syndrome whose leukemia is in remission. Won’t you hold my baby?”  Did I say those exact words, as I intended? No. No, I did not.

Pro tip: When asked to give a testimony on joy through suffering, be sure not to garble the testimony about the suffering. Specifically, don’t be so concerned to talk about Jesus glory more than your personal story that you forget to explain how horrible the circumstances are than you faced– so that you can explain how Jesus worked through it.

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I haven’t spoken to a group in quite some time, unless all three kids gathered in the bathroom watching me tinkle counts. (It doesn’t.) Rusty though I am, I wouldn’t have missed today for the world. The alarm went off at 5:00am so that Elizabeth and I could make it to Fort Belvior, Virginia to speak to the Protestant Women of the Chapel.

Three months ago, I met the most amazing mom over social media. This momma has two gorgeous young boys and one on the way– and this baby boy is extra special. Like William, he has Down Syndrome. Despite having lots of amazing moms in my DS tribe, this is the first time I got to meet someone face to face after befriending them! It was a thrill.

Just seeing her was a confirmation of all God has done through William’s life and the testimony that has been built by the therapies, surgeries, cancer treatments and daily celebrations. Her gorgeous mother was there wielding the grandma-touch; Elizabeth promptly fell asleep in her arms.

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The morning was full of mishaps and challenges for all involved, but the worship was genuine and praised God through our mess. The first handful of women I met had stories full of mothering through medical disability, of surgeries and chemotherapy, of freedom from addiction and potty training!  Is there anything as wonderful as walking into a room of strangers and knowing they are family? After all, crock pots of grits and taco soup awaited. These were Jesus- loving women.

There were technical mishaps, taco soup was spilled off a motorcycle, a chaplain’s assistant risked electrical shock, and Elizabeth was her fussiest to date. If Satan had ever tried to distract or dismay a group of ladies, this was it.

Then we began to worship anyway. The songs, the testimony in dance, the poem and the worship all echoed the same message– God gave each woman a melody but when we all came together we made a harmony in a resounding message– God was better, bigger, and mighty in suffering.

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Everything was in line and powerful…and then it was my turn.

Photogenic and polished at all times, as always.

I promise that I was speaking an encouraging word and NOT yelling or passing gas. Truly.

God was there and working. After conversing with so many women with powerful testimonies and great attitudes, meeting them felt like an encouraging homecoming. They gave me grace and heard the message through my mess.  (I will post the video link soon!)

Hearing the stories of how God has worked in these women and clearly seeing their resolve to endure in Christ through trial  gave me a glorious morning. We reminded each other that we aren’t running alone. When we spur each other on and help each other focus on Christ, the rest grows dim.

In the back of my mind I knew Jonathan was receiving chemotherapy, that William’s “witching hour” would be fierce after his 2am wake-up, and that traffic and a forgotten dinner plan awaited. Then God showed up. When God shows up…clutch your Crock-pot and brace for impact, Ladies.

Again, I’m in need of a press secretary. I can pay you in grilled cheese sandwiches and hugs. Until then, I’ll just keep trying to tell what Christ is doing in our lives and hope others can hear Christ through my mess.

 

Silent Battlefields… (Sorry for the silence)

They never heeded the warning. The sign at the entrance was clear, but only one ever decided to keep walking. I walked with several who later wished they had.

All of the life-like exhibits at the National Infantry Museum impress, but the glass- encased recreation of the Vietnam jungle was startling. It was my job to walk silently, backward and in heels, listening to the sound track. The sounds of rain, animals, and stillness was eerie. No one ever spoke, unless it was to whisper how real it felt. That silence would suddenly be shattered by the sound of gunfire, simulating an ambush.

Some veterans have shielded me, some have grabbed my arms, some have rushed out, and some have started crying sudden, anxious tears.  Soon we completed the winding 15 foot walk out of the glass doors, back to the sound track of a Huey overhead.

Those who speak loudly or exclaim how magnificent a place is can respect and admire its significance, but often they aren’t the ones who made it significant. Watch the quiet ones. When they speak, you will want to listen.

“I don’t know what happened. All of a sudden, I was just there again.”  We would walk in silence for a while. When you walk past your battlegrounds you have to fight twice- the past and present join like two sides of a coin.

That’s where I am this week. Three years ago, William’s body was in the worst shape of his life. We had that night where I was hurriedly escorted out of the room as my baby shrieked himself hoarse and everyone came running. His skin peeled from his face and bled. My Facebook statuses begged for prayers. Swollen, infected, suffering– my two year old didn’t get released from the hospital cancer-free until a month after it was expected. Every day was a matter of life and death. I knew it would be one of the most important times of my life. I never wanted to experience it again.

 

I’ve looked back for writing to I can remember the words that match the images I have burned in my mind. There are none. There is only quiet and a few paragraphs that simply say things like,

” The greatest lesson I am learning from this season of sacrifice and struggle is that when we feel most forsaken by God, he is actually the most present and loving. Great struggles yield great victories. The battle is in believing it, and it is something I am still wrestling with. When we are most broken, God gets the greatest glory. If you are struggling against God’s Will today, fear not– you are in good company along with me…and Jesus. Great faith starts with obedience “.

I strained to hear God’s voice, knowing he could hear the screaming of my spirit. There was so much to hear that there was little I could say.

Jonathan has chemo on Thursday. He will have a new cycle of drugs he hasn’t had before, and the hospital stay will be longer. We know what to expect but then there could be more difficulty that is new to us.

Jonathan turns 7 this month. I started thinking about how to celebrate a birthday restricted by cancer. Then I realized William turned two the week he began chemotherapy, only three short years ago. Even small things… so I gave up planning and ate chocolate cake. It’s what the people who love me recommend.

I’m walking the battlefield. I’m quietly counting the losses and the victories as I prepare for battle again. Distractions are plentiful (thank you, children) but my soul needs quiet. After all, as I fought the first time, the Spirit was surprisingly quiet. Jesus was just present.

Here is to the Spirit, quieting the soul…and chocolate cake.

 

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 just rocked my baby to sleep for me, 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.

When Movie Night turns Wonder-ful

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 heroin 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.

Sleep and Trauma-Drama

Sleep deprivation– a common characteristic of the tortured, the afflicted and the parents.  I’d like to take a moment of silence to remember sleep…but I have three kids so silence and sleep ran away together.

God doesn’t sleep, nor does he slumber, so I tell myself I am becoming more Godly. It remains to be seen.

Everyone I know needs more rest. We love sleep and are eager for bedtime. The darkness of night should be a time of restoration, but the sad truth is, night is RARELY peaceful, restorative or joyful. Things keep us up at night- aches, pains, nightmares, anxieties…children. This week I finally made the obvious connection between William’s uncontrollable and frustrating behaviors and why William can’t sleep.  Half of the behaviors were exactly what Jonathan did while William was in the hospital. We are back in our place of trauma. 

Our sleep struggles intensified around October. William would wake once or twice a night over the summer as we moved and readjusted, but now it increased drastically.  We have seen doctors, done sleep studies, and tried EVERY solution. We know 13 things that are NOT causing the sleep issues.  We’ve researched, tried everything again, and sat crying and praying as he thrashed and head-butted us. He would jump, bang doors and worst of all, hit his head on the floor.  We slept in his room, pinned him in with soft surfaces, and tried medication. We couldn’t leave him alone, so we took turns. I’d nurse and change Elizabeth’s diaper that then switch off, staying with William so my sweet husband could sleep the 3-5am shift before work.  Around 2-3am, Jonathan would wake up and want water and to be held. Four months later, we are finally in a routine. We have a new medication and a specialty appointment coming, but this is just life.

The waking times were exactly on William’s cancer/vitals schedule. He would sleep 9-12. Then he would wake at 2am for the pumps, 4am for the blood draw and chemo switch, 6am for doctor’s rounds. It is imprinted on us both. It took us both 9 months to stop waking up at those intervals.  How did I not figure this out sooner?!

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Trauma demonstrates itself in the body, especially in sleep. The articles that warn parents about the importance of sleep to development and end with dozens of well-meaning suggestions and product endorsements make me sob. My best falls short.

You can’t fix trauma for someone else. It’s not our job to fix it. You can only stay with them through it.

The thing about cancer and other trauma is that surviving it isn’t the hardest part. The aftermath is often worse and lasts much longer. It is as if we ran a marathon with a rock in our left shoe, walked a mile with it removed, and now are running another marathon with the rock in our right shoe. We are limping, but we are moving forward.

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At 3am I was snuggled in the bottom bunk with William, covering him with my arms and a weighted blanket. For weeks I had laid in bed mentally listing all the things I should be thankful for relating to William. In my frustration and exhaustion, it is a discipline rather than a joy, which is why it works. Night after night I would be so frustrated, so ANGRY, so tired of it all.

Worst of all, God wasn’t answering prayers for sleep. It is very hard to tell people who are fervently praying for a child to sleep that no one slept more than two hour stretches that week- again. It feels like failing at faith. Prayer is a great weapon, but it felt ineffective– this is a great deceit of the Enemy.

Finally, the Spirit broke my spirit. I listed differently.

I am thankful I can be at home in a bed with him rather than standing over a cold, metal crib. I am thankful there are no tubes to be caught in or pumps to beep all night. I am thankful he no longer pushes me away, but wants me to hold him. I am thankful the vomiting is over. I am thankful he knows we will be there when he cries. I am thankful he is MINE to fight for, in a world where many would have orphaned or aborted him. I am thankful cancer is out of his body. I am thankful for his life, even though we struggle daily.  I am thankful that he can rest, even a little.

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The kid is fighting, and it isn’t against me. It’s my job to climb into the ring- or the bed- and fight with him when I’d rather be sleeping or fighting my own battles. Love gets up. Love keeps fighting.

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The war in the darkness is won in the light of the morning.

I was once given a beautiful ceramic cup that read, “His mercies are new every morning”. I loved it. I thoroughly enjoyed it for the two mornings I used it before a son pushed it from the stroller’s cup-holder and I watched it shatter on the unforgiving sidewalk. It was when sleepless nights were becoming very common, and I began to cling to the hope of renewal in mornings.

There is something glorious about daybreak, especially after a sleepless night. There is a victory in it, no matter how exhausted I feel. It’s mercy.The cavalry comes in the morning. Daily Bread was dropped from the sky in the morning. Coffee is made (for most of you- I’m an outlier) in the morning.  We look up from our bed, couch, or trench and see hope when we see Light.  Our flag is still there. Our God is still alive and working. In Him there may not be sleep, but there is rest. That is enough until morning.