Life May Never Be the Same. And That’s Okay.

Like many of us, I’m realizing that there is no date in the near future when we will “go back to normal” because the truth of the matter is, normal is forever changed.  And that’s okay.

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It’s easy to spin into a dark place when you realize life is taking you way off the course you imagined.  It’s scary to go someplace new without a road map.  It’s hard.  And yet, if there is anything life has taught me in the last several years, it is that we can do hard things.  Even more, when we do, something deepens in us, and the life we create from those challenges is deeper too.  

When my middle daughter, Eliza, was in the NICU, my focus of hope was on the day we walked out of Room 8 and back into real life.  In my mind, the discharge to home somehow felt like it would be a great return, as though we could check the box, finish the course, and graduate.  When doctors started testing for incurable, terminal conditions, my focus of hope transitioned to survival.  I just wanted my baby to live.  And when we got the diagnosis, my focus of hope turned to finding a treatment, longing for the day when she could be cured of the debilitating effects, like insatiable hunger, that come with Prader-Willi Syndrome.  I cycled through it all.  I grieved the loss of the life I had imagined and grieved again when I realized finally that there was no finish line to cross in this new course.  

I still remember with clarity the waves of questions that relentlessly came at night.  Would she be happy?  Would I be happy?  What happens if she never leaves our house for one of her own?  And what happens when we’re no longer here to care for her?  The grief wrapped itself around me like an uncomfortable blanket I couldn’t shake.  I truly questioned if I would ever again feel light…if I would ever again have days that weren’t consumed with thoughts and fears about her life and my ability to handle it well.  

More than five years later, I find myself feeling much the same way.  When COVID hit, my first thought (like so many others) was, how soon can we get to the other side of this?  Fourteen days?  Three months?  Give me a finish line to see, so that I know I can cross it.  That changed to fear.  Will we make it?  Between Eliza’s underlying medical issues and my husband’s job as a doctor at one of the largest public hospitals in Seattle, I became obsessed with the thought of mere survival.  That’s still a real fear of mine.  And like everyone else, I want there to be a vaccine…some kind of cure or treatment that can take it all away.  But I learned the hard way through our efforts to fund research for a PWS treatment that it is a long, slow process to get there.  I have faith that both will come, but I can’t wait for that to happen before I start living in the world I have right now.  

The parallels between these unexpected journeys give me some perspective that I hope is helpful, which is that not only can we do hard things, it will be in and from those seasons that we fully live our best lives.  Grief and suffering dig channels where love can enter, and when we are open to it, that love will transform us.  All the extra baggage we get so preoccupied with falls away in crisis, leaving only the true and essential.  

Sitting in the NICU, holding a baby covered in wires and tubes, I wondered if life would ever be the same again.  And I can tell you, it hasn’t been.  For that, I am so grateful.  That’s not to say I’d choose PWS for Eliza any more than it is to say I’d choose COVID for our world.  They’re both painful and unfair and terrifying.  But I know this: from great suffering comes great transformation.  Our faith grew deeper.  Our love grew stronger.  And our joys became rooted in the things that circumstance could not shake.  We have walked through fire with that girl, but we learned we could rise from the ashes.  

May we acknowledge our collective experience of grief and fear and struggle and find ways to lean into the love and lessons it brings with it.  May we stop waiting for the finish line and start opening our eyes to the wonders of this season.  Normal may never be the same.  We may never be the same.  And one day, if we’re lucky, we may just be grateful for that too.

Love Shows Up

“Do your little bit of good where you are; it is those little bits of good put all together that overwhelm the world.” – Desmond Tutu

We are now almost a week past race day, and I’m still blown away by the love and support that made this Thanksgiving event possible.  What started four years ago in the freezing cold with nearly 500 participants grew to over 2,000 this year!  It is astounding.

I know Eliza doesn’t yet understand the way her community showed up for her and the thousands of others living with Prader-Willi Syndrome.  Right now, all she knows is that her mom was really busy…and it probably felt a little bit like an unwanted sacrifice.  I saw all of my kids struggle with the abrupt change in our family’s schedule in the month of November, and it is hard to know that I wasn’t able to be there for the kindergarten feast or to rub the backs of my sick kiddos when a cold and then a stomach bug traveled through our house recently.  But in those moments of guilt, I was thankful to hear Derrick’s reminders that this was a choice – a sacrifice – worth making.  That it would change the futures for all of them.  And that someday, they would understand.

Throughout this year’s journey, we raised over $100,000 for the Foundation for Prader-Willi Research. And the best part is that it came from so many sources…race registrations were huge, but so were the generous donations from local restaurants, gyms, salons, and many, many small businesses in our community.  And then you add in the generosity of our village…$20 from an old friend, $100 from a cousin who has only met Eliza once.  It all adds up.  And it brings me to tears in gratitude.

We forget sometimes how much it means to show up for each other.  To send an encouraging text or offer to volunteer last-minute instead of relaxing on the holiday morning in your PJs watching the parade.  Derrick and I would go to bed marveling at the support from our tribes, and it’s hard to put that in words on a thank you note because it means more than words can say.

There are so many hard things going on in the world today that sometimes it seems to cast a shadow on all the good.  Acknowledging both is important.  And I know our little turkey trot is just a small slice of the bigger picture, but it is a powerful reminder that good is still there, and it’s literally all around us. That generosity and community and joy are still alive and strong…still ready to show up.  It is, as Desmond Tutu said, those little bits of good that overwhelm the world.  I know they overwhelm me.

I Hope You Dance

“Everyone longs to be loved.  And the greatest thing we can do is to let people know that they are loved and capable of loving.” – Fred Rogers

I have been working on a post about last month’s Foundation for Prader-Willi Research conference since the day I got home.  It was such an intense weekend for me that it’s been hard to capture it, so I went searching for a picture to inspire the post this morning and ended up revising it completely.  What I saw brought out a whole different set of reflections, which seem equally hard to put into words.

To make a long story short, the FPWR conference was incredible!  ALL the feels came out that weekend.  I felt hope and fear and connection and determination.  I am unspeakably grateful for the village of warriors fighting alongside me who have taken the charge and put themselves and their young ones in the path of uncertainty through clinical trials, surgeries, and countless different therapies.  I am thankful too for all the researchers who have made PWS and all its complexities a little clearer, even when that clarity brings with it renewed panic at just how likely Eliza is to struggle with making meaningful friendships or suffering from mental illness.  New studies show a stronger connection to those challenges with her specific subtype of PWS, and what I had once thought could wait until adolescence when they more fully manifest, I now know can be identified, predicted, and hopefully helped in this three to six-year-old age range.

Eliza can obsess over things more than most kids and has significant struggles with changes over routine, especially if food is involved.  She also wants desperately to have friends but doesn’t always connect with her peers, who have essentially developed twice as quickly.  At school drop off this morning, I witnessed two kids laughing at her attempt to create a pattern with leaves, a class project displayed in the hallway that shows her random cluster alongside her classmates’ neat lines.  She was standing behind them but totally oblivious to the joke.  It was such a minor thing, but it was the fourth time this year that I’ve left that hallway to cry in my car.  It’s not that I’m sad that she’s different or even that she’s a little behind.  In some ways, watching her learn in slow motion has brought more wonder and awe than I have found witnessing the same milestones with my other daughters.  What I cry for most is the day that she realizes that her differences may bring with them pain, exclusion, and ridicule.  So far, in those moments when she is told that she doesn’t know how to stand in a line correctly or that she talks funny, Eliza persists.  She dances to the side of the line and continues to tell her story, unaware.

I want so much to preserve her innocence and to somehow guarantee that she will be spared from feeling the “otherness” that so many kids (typically-developing included) feel.  She is four. I know it will probably get worse before it gets better, and I know that these kids are good kids who are also only four.  I also know that for every potentially hurtful thing said, there are probably a dozen kind ones.  But oh my goodness, it still breaks my heart.  And then I look through these pictures, and I think of her smile.  I remind myself that right now, she doesn’t know that she is any different from her peers.  Right now, she still stops what she is doing and dances to any music playing nearby. Right now, she still smiles and waves to strangers in the grocery store like she is in a parade.

Right now, all I can do is what I can do.  I can keep learning more about ways to help her, and I can keep working hard to plan a race that will hopefully bring more awareness to our community and more funds to change her future.  I can keep repeating to her (and to myself) that it may be hard, but that we can do hard things.  And I can hope and pray that even when she does someday realize the ways in which she is different, she will marvel in it half as much as I do.  That she will keep shining brilliantly exactly as she is, fearfully and wonderfully made by a God who is crazy about her and loved by a family that has her back always, forever, and no matter what.

Afraid but Not Alone

“He is love itself, grace embodied, holding the fullness of who we are – strong, weak, good, bad, wild, fearful, brave, silliy – in His hands.  He can be trusted with every part of it, the silly and the enormous.” – Shauna Niequist

Today is Eliza’s follow-up with the orthopedic surgeon…the day we will find out whether her hips have continued to regress and whether we will be faced with another surgery and another spica cast. As much as I try to let the future unfold as it will without imagining all the possible scenarios, I just can’t seem to do that today. I am already sick over the thought of anesthesia and its many complications for Eliza and heartbroken for the moment she would wake up to find herself trapped in what is essentially a full-body cast.  I’m thinking about how we’ll manage a wheelchair in our car and what this will mean for her gross motor skills, for her potty training, for her friendships, and for her independence.  She was a baby the last time we were faced with this.  She wasn’t walking or talking yet.  She wasn’t displaying obsessive compulsive behaviors that would be exaggerated by such a huge loss of control in her body.  And it was still crazy hard.  So I can’t imagine what this next round of surgeries and casts would be like, and yet it’s all I can imagine.

I feel heavy with fear and wound up in my worry.  I don’t want to get bad news.  I don’t feel capable of looking on the bright side if we do.  I moved through that journey already.  It was brutal and beautiful and full of lessons, but I don’t want to learn them again.  I don’t want to find beauty in the pain.  I don’t even know for sure what the doctor will say, but I already think it’s unfair. PWS is unfair.

I’m sorry if this feels more like a vent than an uplifting post, but it is my truth today.  I used to think that I needed to look only at the positive…that if I could just show how great Eliza was doing at this or that, the hard parts would fade into the background.  But the truth is, they never really faded.  And what’s more, they don’t diminish the good in the least.  They are both there.  Both valid.  So today, I’m going to allow myself this fear and this sadness, trusting that God is okay sitting with me here too…that He can hold the enormity of it in His hands, and that He can hold us there too.

Overcoming

“It was so risky and so scary, and yet at the same time, so beautiful.  Maybe the truth was, it shouldn’t be easy to be amazing.  Then everything would be.  It’s the things you fight for and struggle with before earning that have the greatest worth.”  – Sarah Dessen

 

We did it!  The first week of school is over and done, and I’m unspeakably excited by the prospect of the next two days being wide open and free. No packing snacks and lunches, no setting an alarm or rushing the kids through the morning routine so that they can leave on time and “stress free.”  I feel like I can take a big breath, relieved that the girls were (for the most part) excited to go to school each day.  I know it’s exhausting for them and a huge shift for all of us, but they handled it like champs, even managing to do most of the morning routine on their own.  Amelia and Eliza share a room, and each day when their alarm went off, they got up, got dressed, made their beds, and brushed their teeth before coming downstairs for breakfast.  Eliza’s bed-making skills are still emerging as they say, and Lord only knows what kind of job she did brushing her teeth solo, but the point is, she did it.  I’m sort of astounded that it worked, to be honest, but so, so grateful that at least for week one, it did.

This whole week has left the advice of Eliza’s PWS specialist, Dr. Miller, refreshed in my mind. She told me at our last appointment that I should expect Eliza can do anything, encouraging me to only make accommodations when she shows it’s needed.  That’s hard advice to follow, mostly because I want so desperately to protect her from failure and keep her spirits and excitement up.  As I said before, once Eliza has decided she can’t (or doesn’t want to) do something, she generally digs into that belief pretty hard. And I want to ensure I have everything in place to give her success.  But then I wonder whether I’m doing just that…giving it to her instead of letting her figure it out on her own.  Finding that balance between protecting our kids and allowing them to fall and fail is constant, isn’t it?  I don’t know the answer.  I think it’s one of those things that specialists and parents alike see differently, and I don’t think there is one right answer. But I will say that this week, I might just send Dr. Miller an email and say thank you.  Thank you for believing in Eliza.  Thank you for reminding me that yes, it is harder for her, but that she can do hard things.

This world is not an easy one to navigate for anyone, and that is certainly true for Eliza, who is challenged by simple things like balance and self-regulation that we generally take for granted.  But what better time to practice spreading her wings than now when she has a village of teachers and paras and parents and friends looking out for her?  Right now, her world has her back, and I’m so very thankful for that.  Was week one hard?  Absolutely.  Did Eliza cry nearly every afternoon within ten minutes of leaving her classroom?  Yep.  There were more struggles and more tears than we normally have, but there were also more adventures and more lessons and more friends.  We are going into this weekend ready to celebrate…celebrate this week of firsts and the kids who navigated them with a little grit and a lot of grace.  What a ride.  What a blessing.

Off to School

“One morning you’ll wake up to find you are grown and the bells that you’ve rung and the whistles you’ve blown will say to the world that the story you told was clever and brave and daring and bold – and I’ll be prouder than words can tell of every chapter and every bell.” – Nancy Tillman

 

It is the first day of school, and I am a bit overwhelmed by all the emotions that have come along with this milestone.  For both girls, this year is filled with firsts as they move into full-day school, but the transition will be most extreme for Eliza.  Her new program sounds amazing, and we are thrilled for her, but there are some very big changes from last year.  She is surrounded almost exclusively by typically-developing peers, she has no full-time therapist in the classroom, she has no morning snack, she is expected to be potty trained (which is still a struggle), and her day lasts seven hours (opposed to last year’s three) with only a 40-minute rest time.  The girl is going to be tired.  Scratch that.  The girl is going to be totally exhausted.

And yet I’m so excited for all the ways I know she will rise to this challenge.  It may not be smooth or predictable or even pretty, but Eliza has grit, and she constantly amazes and surprises me.  After scribbling random lines for her name at check-in this morning, she hugged me goodbye with no tears and no hesitation, ready for the next adventure.  My hope and prayer is not that she learns to write her name or recognize numbers and letters (although that would be amazing).  My hope and prayer is that she sinks more deeply into a love of community and rises more confidently in her awareness of all the gifts she brings to this world.  The sky is the limit for all she can do!

But none of that changes the fact that I am afraid…afraid that she won’t be able to hold it together when morning comes and goes without a snack, afraid that she will feel embarrassed to have a Pull-up on when everyone else has long outgrown that stage, afraid that her exhaustion will translate as meltdowns or falls.  I am afraid that she will feel truly different for the first time.  I want so much for school to be a safe and happy place for her to grow, and the thought that she could see it as anything else terrifies me.  Her independence and determination can swing both ways, and I know how hard the battles can be to get her to do anything she doesn’t want to. The struggle is real, and the stakes are high.

I don’t know what she’s doing at this moment or even how she’s feeling, but when my mind spirals down every potential scenario and panic creeps in, I remind myself of all I do know.  I know God is with her.  I know that He created her exactly as she is meant to be and that she is surrounded by a fierce and unconditional love.  And I know Eliza.  She is already everything Nancy Tillman writes about in the children’s book I read the girls last night – “clever and brave and daring and bold,” and no matter what the day brings, I’m already “prouder than words can tell of every chapter and every bell.”

I Wish I’d Known

“You can lose it all – all the things you thought mattered most – and rise up to tell a better story yet. Turn it loose.”  – Jen Hatmaker

Eliza turned four last month, and nearly every morning since her birthday, Facebook has popped up a memory from that time on my personal page.  It’s hard to explain just how quickly I am transported to that room and to those days and weeks of fear.  It still feels prickly and raw all over again to see a picture of her tiny body with a captioned update on the latest tests or prayers requests, remembering how I felt when they were taken.  Four years ago today was our first full day with Eliza at home, so yesterday’s picture showed us parading her out of the NICU without any wires or monitors attached for the very first time.  This seems unbelievable to me.

Fast forward to today. Eliza is halfway through a weeklong Zoo Camp with her sister.  Other than her special snack, there are no real modifications for her.  I drop her off in her matching oversized safari t-shirt and pick her up three hours later, knowing that when I do, she and Amelia will tell me all about the animals they got to pet or the special shows they got to see.  Yesterday, we met her physical therapist after camp to do a little session in the zoo.  She was walking along narrow beams and jumping off sidewalk ledges, trying to land on both feet together (a challenge) but excited to be “leading” her younger sister through the obstacles.  It was one of those ordinary moments that takes your breath away because you get a glimpse of just how much has changed…how far you’ve all come.

Days can feel normal and full and just about perfect even when what that looks like has changed, and I wish I had known that.  I wish the me in the NICU, hearing about the devastating diagnosis, could have glimpsed us out together in the sunshine.  It would have calmed that anxious, sad mama’s heart.  If you are there, in the space where everything feels so crushing and huge that you fear life will never be light and fun again, hang tight.  Take a deep breath.  Trust that this too shall pass, and that even when the diagnosis doesn’t change, you will.  You will change in wonderful ways, with eyes more open to the laughter and the blessings. You will look with more awe at your children – all of them – and feel closer to your spouse than ever before.  Your rawness will translate to a deeper, more sensitive perception of the world around you and especially of those closest to you on the journey.  Breathe. Trust.  Surrender.  The pain is real, but so is the joy.  And there is so much joy just around the bend.  I promise.

 

First Day of School!

“You’re off to great places!  Today is your day!  Your mountain is waiting, so…Get on your way!” – Dr. Seuss

It has been ages since I posted, but even with the lapse of time, it doesn’t seem possible to land where we are today with my sweet Eliza heading off to school. It was so much more than a first day…it was a first launch of many that I know will come.  She is three years old, but with very few exceptions, she has been with me or a family member for her entire life.  The preschool is only four mornings a week, but the magnitude of that shift stuns me.  How is it possible that the years of her being home and with me day in and day out are suddenly behind us?  That was too quick.  I don’t feel ready to entrust another tribe to whisper all the reassurances, hug away all the fears, and cheer on all the brave new firsts.  And yet, I am thrilled for her!  Let’s just say I had all the feels at drop-off today.

This morning, I opened the door to Eliza’s room to find her already dressed (a full hour earlier than we usually get up).  Amelia must have helped her choose her special outfit and change out of her pajamas, and the kindness in that small act of sisterhood fills me with such joy!  I love to imagine what their conversation was like in those early morning moments together, but I know her encouragement as they said goodbye and her excitement as we picked her up later was enough to melt my heart.  She wouldn’t leave without reminding the teacher about Eliza’s special diet, a fierce advocate for her sister so many times and in so many ways.  And then, we turned together and looked one last time at our preschooler, sitting between two new friends and working to assemble a set of Lincoln Logs…so happy, so present.  Again, all the feels.

Eliza is ready.  She is so brave, so eager to go out and experience a life that she clearly believes is out to delight her.  And with an attitude like that, how can it not?

Evaluations

“Above all, watch with glittering eyes the whole world around you, because the greatest secrets are always hidden in the most unlikely places.” – Roald Dahl

We have been in the thick of evaluations for our little Eliza…the beginning of a long transition away from her weekly in-home therapies and into the public school system.  It is a scary change, partially because it is entering an unknown and partially because, as a former educator myself, I know all too well the strained resources of our public schools for all kids – but especially for those who struggle.  And I know Eliza will be counted among the struggling for the length of her 14-year journey there.

At her final qualification meeting this week, I sat around a table with six therapists and educators and listened to all the challenges, the concerns, the goals, and the accommodations.  It was good and important and hard and heartbreaking.  In some ways, the evaluation process puts Eliza in a stark black-and-white contrast with her peers, measuring her skills in month increments that are often a full year behind with delays reaching 27%.  But when you look up from that seven-page document, you see a person, one whose gifts simply cannot be quantified.  And I am thankful that she is surrounded by a village that gives voice to that too.  Even the clinicians in Thursday’s meeting commented on her contagious smile, and her home therapist spoke of Eliza’s remarkable determination to stick with a task even, and sometimes especially, when it is difficult for her.  That trait is especially inspiring to me.

There are so many things I don’t know about Eliza’s future, but after this week, I know where she will be at school next year.  For now, that seems like enough.  At least now, I can picture it.  And I like to picture it.  I like to imagine her in that classroom, exploring the play kitchen and turning the pages of new books.  I can see her laughing with friends I know will come, and I’m already looking forward to hearing about her adventures as we walk home.  Is it a little terrifying?  Yes…more than a little, actually.  But when I think about it, most of parenting is.  And I wouldn’t trade it for anything.

Like all hard and scary things, the evaluation process has shaken away the clutter and forced me to reconsider what I value most, which is never something that can be measured on a report or kept in a bank.  Uncertainty and fear carry with them an invitation to intimacy with the Lord in a way that very few things do, and that spills over into everything else.  I am again awestruck at the kindness of friends and strangers who go out of their way to support my daughter and our family.  I am again overwhelmed with thankfulness by the simplest of moments…snuggled on the couch with Derrick and the girls or even cutting up vegetables for dinner and marveling at the vibrant red of a pepper or the the fresh fragrance of a basil leaf.  It is all in the journey, but even more, it is all in the eyes with which we see this glittering world around us.  That is the truest evaluation, it seems.  It is gratitude.  It is grace.  And it is an abundance that has no measure.

Sitting with Uncertainty

“God is our refuge and strength, an ever-present help in times of trouble.  Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging…He says, ‘Be still and know that I am God.  I will be exalted among the nations, I will be exalted in the earth.’  The Lord Almighty is with us; the God of Jabob is our fortress.” – Psalm 46

Tomorrow is our fourth Prader-Willi Clinic…a series of appointments that takes most of the day and all of my energy.  It is an extraordinary blessing to have a clinic devoted to such a rare disorder less than five miles from my door, and I am thankful for the multitude of specialists who make it possible, but I would be lying if I said I was excited to sit in a room and wait through eight back-to-back appointments with a two-year-old.  I get tired just thinking about it.  And yet as I write this on the eve of clinic, what I feel most is fear.

In Eliza’s first year of life, the hits seemed to come one after another, culminating with the unexpected news that she had hip dysplasia and needed two surgeries and severe casting. But in the time since that last cast came off (just before her first birthday), we’ve been in a pretty good groove.  Sure we’ve walked through some minor setbacks, but I feel like overall, we hit a sweet spot with her weight, her motor planning, even her speech.  We have had no hospital stays in over a year, and while last summer’s orthopedic appointment wasn’t quite as good as we had hoped, it was enough to stop the talk of further surgeries for months.  But months have passed, and tomorrow will come with answers I don’t know if I’m ready to hear.

I am scared that our sweet spot is ending.  And while I’m definitely afraid that the x-rays will reveal a regression in her hip dysplasia and scoliosis that I cannot see, what terrifies me the most is what I can.  I see my baby girl transitioning towards the next stage of ceaseless hunger, and I want desperately to reverse it or at least stop it from progressing.

Hyperphagia (excessive huger) is the hallmark symptom of PWS and one that usually creeps in between ages 3 and 8.  Eliza is 2 but is exhibiting signs that we are heading to this next phase early.  For many months, she has had an increased interest in food, but recently that has spiraled into new behaviors: asking to eat the moment she wakes up and sometimes less than an hour after finishing a meal, throwing tantrums when she can’t eat when she wants, sneaking food from the cabinet if it’s ever left open, and even pulling food out of the trash.  I cannot begin to describe the heartbreak I felt when I first noticed her crouching on the floor under our kitchen table to eat the crumbs that had fallen.

This disease is so unfair and so multifaceted that the thought of receiving even a morsel of bad news tomorrow at clinic makes me feel panicked and shaky.  On the crest of so much uncertainty in our world, I want desperately to protect my girls…to shield them from all that is scary and sad and unjust.  But not only is that not possible, it’s not productive.  Hiding my head in the sand and wishing for another outcome will not change the reality awaiting me on the surface, but it might keep me from taking the steps that will help.

So instead, I am praying though Psalm 46, the words of which hang in our stairwell surrounded by family pictures.  I just passed it on my way to the nursery where I was headed with a sleepy but happy Eliza in my arms.  She was squeezing my neck in one of her famous hugs, reminding me that while she may have struggles, she is overwhelmingly defined by her joy, her love, and her persistence.  I was reminded of something else too…that while God does not promise an easy path (I mean, the earth gives way and the mountains fall into the sea in verse 2), He does promise to be with us.  I don’t need to know what will happen tomorrow or next month or 50 years from now.  But I can rest in the faith that even if it turns out that our journey is leaving the sweet spot and heading for some rocky terrain, the creator of the universe is with me…is with Eliza, whispering gently in the storm (or the calm before it): Be still.