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.

 

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“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.

 

 

 

 

The Ugly Side of Suffering

 

Suffering brings out my worst, leaves me alone in a room with it and locks the door. Cancer makes me ugly.  Presently, I am horrified by my behavior. I was ugly to…my mother. Yes, “Your Momma Said You’re Ugly.”

My mother was offering wisdom and money in a moment I was utterly unprepared for— and I snapped at her with a death glare. I didn’t realize I had done it. Who does that?!!! She took time off of work to fly here. She has done hours of housework and errands, gotten up multiple times a night and missed  events at home because her child was suffering and I acted like an ungrateful, spoiled brat.No, it is NOT understandable to be impatient and lose your ever loving mind and use the excuse of stress and both my sons enduring  cancer. That’s what Satan wants you to think.

My young kids often behave that way as I supply wisdom and green veggies. Frankly, it hacks me off. I should know better.  Like a good mother, she did NOT let it ride. I apologized and she forgave me.

 

She modeled grace and beauty in the face of something ugly. Then she fixed it. She helped me clean up my act and regroup. She gave me an hour to go from this…

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to this.

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(Me: Okay! Hair is clean! Mom: Go dry it nicely. Me: My face is washed! Mom: Lotion. Don’t forget your neck.  )

 

I can clean up and put on a brave face, but no amount of any self-care or product is going to fix the fact that what is on the inside is always the same. We can cover up ugly with a lot to disguise it, but it remains. Frankly, it doesn’t take more than 18 hours to return to my natural state. It can get “ugly as sin”.

Trials and challenges are not an excuse or cause. They simply strip away the good I have to offer. When patience from sleep is gone, comfort of ease is lacking and I am lonely- the true self shows.  There is no barrier or buffer to hold my sharp tongue and selfishness at bay. It is a hard task to keep purging the ugliness and sin that is revealed. It is hard work to destroy the sin within me.

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Presently, all the fear, sadness, frustration, and hurt is coming out as anger. “In your anger, do not sin” isn’t easy on 3 hours of sleep across three months.

For every person with an “inspirational success story” from a major crisis, there are as   many who are bitter, angry and broken. They become defined by it.   You can’t pick yourself up by the bootstraps forever. There is no ‘fake it until you make it” with Jesus.  I need Jesus to save us and the Holy Spirit to help us put sin to death daily, even when it rares its ugly head. When suffering people have increased unity with Christ, they see greater sin in themselves.

To become beautiful we must be cleaned and put on Christ. To quote Dolly Parton in Steel Magnolias, “It takes some effort to look like this!” Effort indeed.

The skill that one must master during this Great Clash is the art of the apology.  Sadly, I’ve had a LOT of practice…especially with my kids.

Step 1: Never put a but in your apology. An apology with an excuse is a defense.

Step 2: Ask for FORGIVENESS.  I’m sorry is not enough.”I’m sorry” and “It’s okay” doesn’t fly in this house. It’s “Please forgive me” and “I forgive you”.

Step 3: As VeggieTales classic “King George and the Ducky” teaches us:

“Ask God to forgive you. Ask Thomas to forgive you…and then make it right.”

Make changes. Ask for help. Serve the one you offended. Clean the brother’s toys. Help with the chores when you neglected someone all day. Speak kindly after a harsh word. Confess to others who will help you become more holy, not tell you why you were right. Wronging someone else IS NOT right.

Then repeat, repeat, repeat.

Makeover shows are more entertaining when the transformation is more dramatic. The wonderful thing is that beauty stands out against a backdrop of ugliness. Thank the Lord for a perfectly exquisite Savior who makes us beautiful by making us look like Him. After all, people who look like Jesus are darn good-looking.

 

Chemo Day 1: An Ode to Sarah

The proverbial “they” say that we are to consider others’ perspectives, “walk a mile in their shoes” and consider that we never know the full story of another. On this first day of Jonathan receiving chemotherapy, I am responsible for the home-front while my husband takes the hospital shift. He has to drive, park, wait, prepare a crying and non-compliant child for port access, keep the IV pole close for the infusion, and feed and entertain Jonathan. Then he must transfer to a room and keep watch all night as the rough things begin. He has to keep the IV line clear and replace it when pulled, help Jonathan make it to the bathroom on time, and sleep with one eye open on a short, hard, plastic bed.

I know, because with William it was my job- I became good at it. Now I have to turn that over and switch places.

I must step back from it all and wait to hear what happened.  If any woman understands that, I imagine it is Sarah, Abraham’s wife. She is one complicated and amazing woman- an ideal character for an amazing play. However, in one of the greatest scenes, our Best Supporting Actress remains silent and unseen. Many great jokes, sermons and commentaries surround one of the most profound tests ever given to parents who serve God.

I have read this slowly, picturing the scene over and over. Curtain, please!

Some time later God tested Abraham. He said to him, “Abraham!”“Here I am,” he replied. Then God said, “Take your son, your only son, whom you love—Isaac—and go to the region of Moriah. Sacrifice him there as a burnt offering on a mountain I will show you.” Early the next morning Abraham got up and loaded his donkey. He took with him two of his servants and his son Isaac. When he had cut enough wood for the burnt offering, he set out for the place God had told him about....When they reached the place God had told him about, Abraham built an altar there and arranged the wood on it. He bound his son Isaac and laid him on the altar, on top of the wood. 10 Then he reached out his hand and took the knife to slay his son. 11 But the angel of the Lord called out to him from heaven, “Abraham! Abraham!”“Here I am,” he replied.12 “Do not lay a hand on the boy,” he said. “Do not do anything to him. Now I know that you fear God, because you have not withheld from me your son, your only son.”…

BUT THEN

15 The angel of the Lord called to Abraham from heaven a second time 16 and said, “I swear by myself, declares the Lord, that because you have done this and have not withheld your son, your only son, 17 I will surely bless you and make your descendants as numerous as the stars in the sky and as the sand on the seashore. Your descendants will take possession of the cities of their enemies, 18 and through your offspring[b] all nations on earth will be blessed,[c] because you have obeyed me.”

 

Let’s go off-stage. SURELY Abraham didn’t tell Sarah…right? If she had chosen to wait in obedience at home without protest I imagine it would have warranted a verse. Imagine that homecoming dinner table conversation. No marriage conference can handle that communication lapse. (Shudder) No WONDER Abraham went to Beersheba instead of heading home.19 Then Abraham returned to his servants, and they set off together for Beersheba. And Abraham stayed in Beersheba. See? The Bible is full of humor.

When Sarah finally heard what happened, knowing God had been faithful, I imagine Sarah clung to her Son of Promise. If she had sent her husband and her son away with provisions for six days knowing that Isaac may not return, I imagine she wrestled with The Difficult Things.

If God takes my son, is God still enough? If I am stripped bare from what God promised in this life, can I wait until Eternity to claim them without distrusting and becoming bitter? What if I fail God’s test for me?

Can I truly savor every moment I had with him and let that be enough? Why did God ask for my son?  How can I stop from wanting to control everything and watch him every moment?

I apologize to those who hate rhetorical questions. To me, these are NOT rhetorical questions. They were my constant companions and will continue to be until Jonathan is healed from cancer, one way or another.

It would be ideal to have Sarah’s example to follow, but the bible leaves it to the imagination. Dad gummit. I suppose it is for the best. Sarah isn’t the star. Abraham and Isaac aren’t the stars either. GOD is the star and this is HIS story of a sacrifice redeemed for something beyond comprehension.

That’s the point, after all. We must make Christ the star, no matter what cross we bear and what we sacrifice to receive what God has for us.

I will send my husband and my son up to the hospital over and over for a year. We will sacrifice each time- his school year with amazing teachers. Play-dates, vacations, leaving the house, nights together… but we gain promises and rewards far beyond what we see and can comprehend. Although our sacrifice and the way God will provide is very different, our God is unchanging. We can trust him, even when it knocks us flat, because God sacrificed his Son too.

Have faith.