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.

 

 

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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.

 

“How’s Your Hair?” and other important questions to ask me

Ask me about my hair. Really, I mean it. If you want to know how I am really holding up under the weight of sleep deprivation, a newborn, a wild child with Down’s Syndrome (who is still not sleeping well), appointments, a second child with cancer, and a rock of a husband who is leading at work and at home… ask me about my hair.

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Truly, after I laugh a bit– which I desperately need to do– when I answer, you can decipher it.

If my hair has been dirty for three days and is in a wild ponytail, SOS. It means I haven’t had a break to do more than a 5 minute pit-scrub.

Is it at least in a cute ponytail?I’m cruising.  Is there spit-up, peanut butter, snot, or some evidence of children in my hair? I’m crashing.

Then, on the glorious days, I may answer that my hair was washed AND dried that day. It means I hit the trifecta– a sleeping baby, Jonathan watching tv or playing with Legos, and William at school. JOY UNSPEAKABLE.

This is tongue in cheek, but we all have outward evidences of our inward state.

I always appreciate people asking how we are, what can be done, etc. The answers can feel fairly large and abstract, though. I decided to give some other options that may help.

Other options: (Which people have asked and done. A thousand thanks!)

1.How messy is your desk?  The desk is the outward display of my brain. Judge the order accordingly.

2.How did everyone sleep last night? Did we sleep? No, but it can tell you how full my tank is.

3.Do you need anything from the grocery store? (This has saved me MANY times.)

4. What errands need to be run? I may be planning and able to accomplish these on a weekend, but running to the post office or pharmacy for me helps keep Jonathan and Elizabeth safe from illness. It is an enormous blessing for me. I’d never think to ask and add it to someone’s day, but if someone is already doing or it is on the way, it saves me a LOT of work. Bonus: I get to SEE someone!

5. When can I take William? For the love. Middle child syndrome is REAL. He is an extrovert who is struggling to cope with Jonathan and Elizabeth needing attention and not being able to play with either one. Josh and I have to switch off ‘William shifts’ to get things done on weekends because he is desperate for attention. Play dates help teach him and are great for ‘typical’ kids to learn, so this is an enormous help.

6. What is on your shopping list? If you ask what we need, my mind goes blank. It is overfilled. However, I have lists. Jonathan needed new socks and shoes this month. I never would think to give than answer…but Amazon gift cards that many of you sent let him choose some great police and ambulance themed socks. Shopping makes him feel independent and lets him await the arrival of a package.

*Perishable or consumable things are best. Things like snacks, detergent, diapers, tp, etc. that many of you sent back in September were SOLID GOLD and saved us trips out, giving us time as a family.

All parents know the struggle of Legos, tiny accessories, etc. and we are no exception. Legos and toys with pieces are rotated so we aren’t overwhelmed but can still enjoy them.  You don’t know true dread until you realize someone threw up into the Lego bin and then spilled it.

Just letting me know you are out there and care helps. You aren’t nagging or in the way. If I can’t answer, I will get to you when I can, but it lets me know I have people who care about us. I’m a trapped extrovert who rarely sees people, and I NEED my people!

As for today, I showered. My hair is washed, dried, and brushed, thanks for asking.

 

 

 

This Isn’t Us

Aside from the squeaky wheel and the tall, blue barriers that obstruct the view, the hospital bed looks normal. Four men in yellow and navy uniform roll it down the hallway silently. It wouldn’t be noticeable if it hadn’t been the fourth time that month.

The next morning, no one turned on the hallway lights. The nurses were quieter. We parents who usually checked in on how the night went had all retreated into our rooms. No matter- we had no words to say. We knew that the winter and extra illnesses would bring this risk, but knowing it was coming didn’t make it better.

That made eight. Eight children had died within 30 days. Four on my floor. I knew two of them.

Needing a break, I flipped open my trusty PC and scrolled to Facebook. The next 27 posts read like the book of Lamentations. I desperately tried to decipher what had happened.

“I’m devastated. I can’t stop crying.”

“If only the doctor had been better!”

“It won’t be the same now. That’s it. I’m done.”

“Nooo! Why? Why did he have to die?!
 McDreamy had died. The beloved Grey’s Anatomy character Derek Shepherd had been killed in a dramatic episode.

I stared, numb and blank. In my trauma, it was hard to separate the very real emotions over a fictional character from the EXACT SAME comments said in the hallway.

Fictional deaths are supposed to render us emotional and blubbering. It helps us deal with the sting of the inevitable. Old Yeller, Bambi’s Mom, half the Grey’s Anatomy cast, whoever died on the Walking Dead, Forrest Gump’s Jenny… most of us had a death that brought our heart to death’s door without bringing our bodies. That’s okay. It’s good, even.

The solidarity of those grieving over these characters, especially with the advent of all these highly dramatic shows, is an interesting phenomenon.

The death of fictional Jack Pearson has viewers of This Is Us in an emotional limbo. He is both dead and in the process of dying; a full season of episodes has ensured this heart-wrench. ”

It’s just an absolute soul-crushing event. Once you figure out the moment where it’s going to happen, you may get some hope and then it’s all going to go away. I think the best thing I can say-or the worst thing I can say- is it’s going to be f-ing painful.”  -Milo Ventimiglia, Entertainment Weekly.

The writers have successfully brought out the Deep Hurts through the Pearsons. Adoption, fostering, racial prejudices, parenting, adjusting expectations in marriage, miscarriage, alcoholism, mental illnesses, weight loss and image problems, secrecy, not dealing with family issues– it’s all there. Thousands of comments afterward show that they strike a nerve with people who are dealing with those same issues. It’s a kind of therapy more than entertainment, I believe. The collective grieving is actually helpful.

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More grown men are admitting to crying at This Is Us than the Superbowl and World Series combined.

If everyone took every trauma, injustice, horrible illness and death to heart every moment, we’d all go crazy. It isn’t healthy. We all walk through the Valley of the Shadow of Death. If you are like us, you have a time-share there.

Now that I am out of the season of William’s cancer, I can realize that I was in a pit of trauma. It was typical to want to scream “It’s not real! My kid could die because someone brought illness into this hospital and I’ve never seen anything like this, even during our worst deployment! Get a GRIP!” It felt like a “first world problem” version of grief.

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It took a few weeks, but I realized most people just weren’t in my valley. These were friends who would be much more devastated by the death of my very real child than fictional McDreamy. These people would be at my house faster than people would bring back Jack.

Grief isn’t an either/or. It’s a both/and. You can grieve Jack and be heartbroken for Jonathan at the same time.  Right now…I can’t.

By all means, watch it.  Post, tweet, and grieve however you must. This is not intended to make you feel guilty or to ask you to refrain. I can’t be bitter that the world keeps going.  It’s one of those things I learned from having a kid with cancer the first time.

I won’t be watching This Is Us. I’ll even be off of the internet for a day or two afterward while everyone recovers. My emotional energy is tapped out. The “soul crushing” pain can wait until making it through another day doesn’t feel like a major accomplishment.

All I’ll ask is that you look around for those in your sphere who are experiencing grief they wish they could turn off like a television. Love them and just sit and cry with them as if they just lost a Pearson. Maybe Milo’s advice on dealing with sorrow and death is good, after all.

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My 80 New Pen Pals

Today has been a 2/3 day, so I will be quick about this. Oh, a 2/3 day? It’s when only 2/3 plates can spin successfully at once. Overall, we are doing better than a 66.66%, however. School and potty-training went well, the new grocery pick-up at Wal-Mart is LIFE ALTERING, and I showered, dressed in real clothes AND wore earrings today. I’m at a solid 90%…kinda. We’ll call the average at 81% today. Math was never my strong suit.

This blog is simply to declare that I am one of the most incredibly blessed women of all time, and not in a #blessed way. After yesterday’s blog post about needing an 80 Year Old Pen Pal, I received numerous messages, most of which began, “I’m not 80 but…”

In short, I now have 80 pen pals, which is much better than one 80 year old one.  Women age 29 (a REAL 29, not the 29 I keep turning) all the way to actually 80 (and proudly wearing leopard print shoes) are present and connected. We are doing this life thing, y’all.  These are women who are in one another’s lives, homes and communities.

We are taking the storms and poop of life, declaring them to be fertilizer and making some gorgeous, thriving gardens. The older are teaching the younger, the younger are listening and treasuring the mature and all the babies are being loved.  This is Church. This is family. This is how we survive dinner to bedtime.

As we lament the loss of community, playing outside until dark, disconnection and social media issues, we are lifting up each other. In short, we are writing our stories and coloring the stories of others. We’re obeying the call to love one another, to bear each other’s burdens, and to live rightly before God.

Ask and ye shall receive. Y’all are 3/3.

I Need An 80 Year Old Pen Pal

It may be the sleep deprivation. It may be that I am just outnumbered and have lost my ability to stand up against peer pressure. I have been worn down. When women I love insist I should write a book- “Not right now, but when things calm down”–(Give me a moment to laugh until I snort)– I started to contemplate it.  There are many obstacles of course, but there is one PAINFULLY obvious setback to literary success. I’m SURE you’ve thought of it.

I can’t write a book- even a life memoir-  until I have an older Pen Pal.

I know. OBVIOUS, logical conclusion.

To survive this stage of Cancer Round Deux, I need a pen pal. I’m surviving off of the support of many amazing friends my age. The support is felt daily and goodness, we need you people like oxygen and chocolate.  However, there is a new need.

Y’all. I don’t know what I’m doing. I honestly and truly don’t expect things to EVER calm down. This was SUPPOSED to be the calm year.  Two years ago I told my friend Jen that I honestly don’t expect things to be wildly easier once Will’s cancer treatment ended. I expected it to be training for something harder. I was right. DANG IT. Dang, drattity drat drat.

I looked through my recent call list last week in search for a hospital number. I realized that most of my texts were from women my age and life stage. However, the phone calls, e-mails and Facebook messages were mostly from women who are my mother’s age. These are women who knew me as a teenager. They saw me in awkward stages and gave me graduation gifts. They believed in me and served spaghetti with me at Teen Community Bible Study every Tuesday. One called me monthly as her husband and my son underwent the same chemotherapy. I NEED THESE WOMEN.

I want to ask the 70 year olds how to care-give with a grateful heart when I feel like I can’t go on another day. I need their recipes for that pork tenderloin, strawberry jam, brisket and those addictive cookies. I need to ask the STUNNING women how to look so gorgeous at 80 when I regularly forget to moisturize my neck. I need to ask these women how to cope with people they love forgetting who they are so I can have a path to follow if/when Alzheimer’s symptoms begin in William, as they do for over 40% of adults with Down’s Syndrome. I need to ask my mother in law how to raise a strong Man of God when I’m not sure my five year old will survive if he throws his cup one.more.time.

Look, it is lovely to read a book on a successful, Christ honoring marriage but Y’ALL. Women who have been married for longer than I’ve been alive get down in the nitty gritty and teach you how to love your husband when the laundry may bury you alive.  These women are all around us, especially in our churches. I desperately want to be in Sunday School with them rather than with people ‘my own age’ who are ‘in a similar walk of life’. NO! I want to be with women who have LIVED and can point out the pitfalls. I want to cry with them and remind them that their pain wasn’t wasted because they can speak into my life. Older women are GEMS.

I need training. I need these women to hold my baby and kick me in the rear when I need it. I need them to refuse the invitation to my pity party, to eat my cake, and then circle back for me once I’ve come to my senses. The great news is I HAVE these women because they were around me as I lived. I didn’t have to seek them out because they were already there.

In this ongoing saga I call ‘my life’ with shocking events I like to call “Tuesday”, I’m busy reading through the life stories of these amazing women who are walking with me and giving me something to strive toward. If I can learn to be as wise, funny, compassionate, trustworthy, patient and crown-rocking as these warrior-women, maybe– maybe– God will lead me toward book writing.

Until then, find the women a generation before or behind you and become part of their stories.