Ho Ho Humbug... or Emmanuel Still Comes

It's been hard to get in the Christmas spirit this year.  I can't possibly imagine why.  OH wait.  Maybe it's the other big C (cancer) word that's been dogging our steps - or the 6 days in the hospital that we just got home from.  We're getting honest here tonight, my filter fell off about 3 months ago.

Sure, Christmas cards have been written, gifts have been purchased and wrapped (and then unwrapped by our enthusiastic 14 month old).  Menus have been made, the tree decked, the stocking stuffers bought, and advent readings have been done - we even made paper snowflakes, including a very vividly purple one [because three year olds].

But in many ways, all those things have felt very mechanical with only splashes of color.  A lot of going through the motions without a lot of depth of feeling behind it.  I've been told this is normal when one is going through trauma, so I'm giving myself lots of grace in it and doing what we need to do to make it through this season.  If this is you as well this season, much grace, friend.  Give yourself grace.

Today [when I started writing this, now yesterday] the kids and I set out to bake Christmas cookies - because it's three [now two] days before Christmas, and we hadn't yet.  So we pulled out ingredients for Greek Cookies and Nut balls, Kahlua Chocolate cookies, and rolled Sugar cookies - and were up to our elbrows* in flour and butter within seconds.  *that was a typo, but it's totally an accurate description for how floury the kids were, so I'm leaving it!

Frank Sinatra was crooning Christmas songs on the radio, and snow was gently falling outside - and the boys had a rare moment of delightedly creating moose-shaped cookies and not wrestling/fighting/spitting on things/whining about wanting to eat dough - and I thought to myself, wow, Christmas is almost here.  It's actually almost here.

And for five brief seconds, it felt like Christmas.  Like really and truly, felt like Christmas.  With joy and childlike delight, anticipation of laughter and sweet memories - the season fully upon us.

And then I heard Jon on the phone in the other room, talking to his oncologist, because he's been under with a bad cold all week and he'd just taken his temperature and, sure enough, had a fever.  Any fever at all is an emergency, when you're mid-chemo cycle - so thus began our still ongoing evening of back and forth to doctors, tired kids in tow, scrambles for childcare, and now culminating in a return to the unfortunately familiar ER.

So here we sit.  Waiting on test results and x-rays and praying it's nothing and maybe we'll get to go home in the wee hours of the morning [we didn't].  With that old familiar sense of dread and worry - is it serious? Is it nothing?  Are we going to be okay? Oh my gosh, I'm so tired.  Ho ho humbug.  Nothing says Christmas joy like the cold sterile floors of the ER.

I don't know what your situation is - but I'm guessing some of you know that struggle - wanting to find the joy and delight of Christmas, but finding it elusive.

As I drove the kids home after seeing the doctor, to drop them off with a dear friend, snow spitting in the headlights - the car was silent.  I couldn't handle another round of Holly Jolly Christmas or Santa Baby, and so the radio sat cold and neglected.  But eventually the silence got too oppressive and the kids a little too whiny, so I started singing instead - favorite old carols, the ones with minor chords and words that mean something in the hard times as well as the happy.

"Mom, what song are you playing?"

"I'm singing Oh Holy Night and O Come O Come Emmanuel."

"Mommy, what does Emmanuel mean?"

"Emmanuel means 'God with us'.  It's a name we use for Jesus, because He was God, but not a God who was far away, or unseen, but God who came down and was right there with His people - who could be seen, and touched and hugged.  Jesus is God who came close and was with us."  ... truly He taught us to love one another... chains shall He break, for the slave is our brother... and in His name, all oppression shall cease.

As I drove back to the hospital 30 minutes later, those same words kept running through my head.

O Come O Come Emmanuel - God be with us.  In the *midst of* oppression... in the *midst of* sickness.  In the middle of the ER, as we sit in the hospital room.  As we long for and wait for chains of cancer to be broken.  As we anticipate (maybe) spending Christmas apart from our kids, in this same hospital room.

Then the Grinch thought of something (s)he hadn't before. What if Christmas, (s)he thought, doesn't come from feeling merry?  What if it isn't about food and friends and family and being home?  What if it doesn't matter whether you're in a beautiful Christmas Eve service, or the hospital?  What if it doesn't matter if you're angry at God or life or cancer?  What if it doesn't matter if you're worn thin and are struggling to even try to find joy?  What if Christmas, perhaps, means a little bit more.

What if it simply is about recognizing that God has come?  Or *not* recognizing it, because He comes whether we acknowledge it or not.  Comes, into our humanity.  Comes to us in the hospital, on the 16th floor, as we wait for news of whether we celebrate here or at home?  He comes regardless of whether we feel like it or not.  He sits next to us in the hard, uncomfortable chairs and amidst the many night wake-ups, amidst sickness and discomfort [as my friend Pam says, a hospital is certainly a place where Jesus would be].  Comes amidst our anger and our sadness; our sleepless nights; our hope and our fierce love for one another; our sadness in leaving our babies at home yet again.

Comes with the promise that this is not the end of the story.  That hope wins - whether in this life or the next.  That cancer and death and disease, it does not win.  Come to proclaim, "The Spirit of the Lord is on me, because he has anointed me to proclaim good news to the poor. He has sent me to proclaim freedom for the prisoners and recovery of sight for the blind, to set the oppressed free." (Luke 4:18)  Comes to proclaim, "I AM" to all our doubts and fears and weariness.

Please do not take this post to mean that I *feel* Emmanuel, God with me, in this season - quite the opposite.  I have hit my breaking point - and I feel very little, except extremely sad and like control has completely escaped me (...and very tired).   This hospitalization is a little set-back, nothing too serious hopefully, but sometimes all it takes is a straw to break the camel's back, especially after several long months - and the thought of not being together with Jon and our kids, or not being home for Christmas, it's just too much ((✋ camel here)).

But I am clinging to the hope that whether I see Him or not - whether I feel Him or not - Christmas, when it is stripped of all its adornments and sparkle, Christmas is the same in a hospital room or a cathedral.  It is the same when you are alone or when you are surrounded by loved ones.  It is the same when you are grieving and when you are rejoicing. 

It is the simple promise, wherever you are, you are not alone.  Emmanuel, God with us, has come.

honoring their grief

Our oldest son Samuel is almost 5 (turns 5 in January).

According to him: His favorite color is green.  He loves reading, and is fascinated by how things work.  If he could talk to any famous person, it would be Thomas the Train, Tom Brady, or Isaiah P, his friend Tabitha's very cool big brother.  His favorite things to do are stay in hotels, go to the playground, and play mini-golf.

The thing he is most scared of is that his Daddy will die.

Each night before he goes to bed, he has to know, "will you be here all the way through the night, unless you have to go to the hospital?" and "is the power going to go off?"

He cries every night when I have to leave to go back to the hospital and begs and pleads for me not to leave.  And it takes him a long time, in each 21 day cycle, to trust that Jon is okay and able to be there for him.  He clings to Mommy a lot more these days because he is scared that something will (is) happen(ing) to Daddy.  He has bursts of anger, frustration, and emotions that he can't name.   Being told no by us, even in the "normal" days, sets him off in ways that are disproportionate to the situation.  He has asked more than once, "when is Daddy going to die?" even though we've reassured him that Jon's prognosis is good. 

He is grieving in his own way, this crazy situation we find ourselves in.  His little brother and sister are as well, but they understand a little bit less than he does, and they process it a little bit differently.

Throughout this process, I cannot count how many people have reassured me that children are resilient (defined: able to withstand or recover quickly from difficult situations) and that, regardless of outcome, my children will be okay.  Stronger even, for having had to go through this trial.

That might be true.

Scientifically, muscles that are used grow stronger than muscles that aren't.  Bones that are under pressure, grow stronger (Wolff's law).  My children, who are processing life and death and grief and having to push through things that children shouldn't have to - they are exercising muscles that others don't have to, and that will lead to growth and strength that they wouldn't have had otherwise.

My hope for them is that they will develop inner strength and perseverance, compassion and empathy, and a value for the sweetness of each moment of life that others might not have, as a result of this.

But in the here and now, to speak only of children's resilience - it feels hollow. 

It feels like it minimizes the very real grief and fear and loss of security that my kids are processing - all three of them, but especially the older two, who are more consciously aware of what's going on. 

A few weeks ago, November 16, 2017, was Children's Grief Awareness Day - I had never heard of it in our BC (before cancer) world, but I've found it a helpful resource and reminder in this season.  This quote from the website really resonated with me: [this day]"allows us to advocate that any child that is old enough to love is old enough to mourn... " 

Any child that is old enough to love is old enough to mourn.

Children are resilient, yes.  But they also love fiercely and grieve deeply, even at these young ages.   And I'd like to honor that for my children.

For the one who is grieving externally in obvious ways.  For the one who is internalizing everything and worries me from the things that occasionally surface from the deep.  For the one who I simultaneously rejoice won't remember much of this, and then worry that if things don't go as we hope, won't remember much of this.  All three of them feel the weight of this - even though they are all young enough that hopefully this will soon only be a small memory for them.

So please do me a favor?  Don't just tell me that children are resilient - even though it's true, and I am thankful for the encouragement behind that sentiment. 

Tell me instead that you get it that this is hard.  And that you know we'll all get through it, but that you're with us while we're in it and you know that it sucks.  Instead of telling me that kids are resilient, help me create fun moments of "normal life" for them now.  Send them a card when their daddy is in the hospital.  Give them extra snuggles (only if they know you), laugh at their jokes, and cry a little bit with me when they tell you that Daddy's favorite thing to do is go to the hospital because he's always there.  And if you've been through this with your own child, or as a child yourself - we'd welcome your wisdom.

Today at the hospital, as I pried their arms off my legs and bade them farewell as they wailed my name and begged for me to come with them, screaming and sobbing yet again - the same as every other time I've had to say goodbye in the last few days - I turned around to see a brand new mama loaded up in her transport chair, hours-old babe in her lap, clutching the bottle and pacifier as if they were lifesavers, weary but still wonder-struck.  Her wee one all bundled up to protect him from the cold world.

Me with tears in my eyes, because I can't protect them from this cold, broken world.  Her with tears in her eyes because he was so brand new and perfect and hers to care for and protect now. 

Oh mama.  That love you have for him now - it only grows.  That tiger mama heart that would do anything to protect them - it only grows fiercer. 

But some days you can't protect them.  And all you can do is grieve with them - and honor their grief and hearts and fears and feelings - and trust that somehow you're all going to make it through this, no matter how long or hard it is. 

And so I honor my children today.  This sucks for them.  There is no easy way around it.  Yes, they will make it through it, but it will not be untouched.  These scars, they will make them stronger, but they are painful in this season.  We'll lean on our friends and family, we'll find resources that are helpful, we'll keep speaking hope and finding moments of normal and fun together.  Together, we're going to push through and build those muscles of compassion and empathy, and hope, and perseverance - resilience even. 

But today, that might be through our tears, because there's a lot of love for their Daddy here, and their grief is real.

This is my body...

When you have cancer, everyone brings you food.

Lots and lots of bubbling, delicious, wonderful, nutritious, warm, tasty food.  [And some that is so deliciously not good for us, but we're kind of okay with that.]  I *guess* we'll eat it if we *have* to!

In the 60ish days since we got our initial diagnosis, we have had someone drop off a meal nearly every other day - I have cooked a little bit, as needed, but not very much, honestly.

Probably a good thing, if the days after diagnosis were any indicator - all I remember is forgetting to thaw anything for dinner, and trying to microwave-thaw a steak, sobbing as I broke off pieces of frozen styrofoam, trying to speed up the process as kids cried and tugged at every appendage.  Thank you, everyone who has fed us, for preventing this, or worse, from being our nightly spectacle.

All of those meals, they feel like love to us.

A few weekends ago, as two separate families - one, a friend from high school that I'd only recently reconnected with after a decade apart, the other, a former student from my campus ministry days that I hadn't seen in years - dropped off meals for us back to back, I had the very clear thought:

"This is my Body, broken for you."

"This is my body, broken for you.  Take and eat."  These are the words of institution, for the sacrament of Communion in the Christian church.  Jesus' words, as he ate the last supper with his disciples, and prepared them for his death to come.  Reminding them to remember his death and resurrection, and to cling to its power and humility.  Christians believe that in partaking of it, we symbolize (or, depending on your denomination, it is literally) how we are joined with Christ in his death, and thereby also, his resurrection.

Christians also say that we, as the universal Church, are called the "Body of Christ" here on earth.  Meaning, we're bound to Christ and to one another, resurrected together through his physical death and resurrection, and called to live out his purposes here on earth until He comes again.

....

Faith has never been simple for me - I am a cynic and a wrestler, even through years of ministry.  Whether the spiritual abuse I've seen, all the questions I have, the scientist or the feminist in me, or my fiercely driven-by-justice personality - my faith has very rarely been easy.  I laugh a little bit when others tell me that people turn to faith in hard times because it's the easier path - for me that has never been the case.

Crisis leads my husband to cling to Jesus more tightly.  It leads me to anger and questions.  And then clinging to Jesus - but I get there slower than Jon does.

But in the two and a half decades that I've called myself a Christian, I've come to realize that that's okay.  A God who cannot handle my questions, my anger, and my doubts, is not particularly worth following.  A God who is fully understood by my human mind and intellect, well, that's a rather small God.  As I've wrestled and sought answers, and abandoned faith, and then returned to it, I am more convinced than ever before that there has to be a God, and that the Christian God manifest through the person of Jesus, well, that is more persuasive to me than any other - logically, personally, empirically.

And yet, these past few years, I've really struggled with Christianity, and in particular, people that call themselves Christians and yet live in ways antithetical to what Jesus proclaimed.  Evangelicalism has felt politicized, judgmental, and not Christ-centered.  And I have wanted to run as far from this body as I can... which is not far, when still clinging to the God of the Bible, made known through Jesus, who loved his people to the point of giving up everything for them.

...

And yet, as I carried warm food up the stairs to my already packed refrigerator, the thought kept running through my head - this is my Body, broken for you.

This is my Body, broken for you.

...

The Body of Christ, meaning Christians, we are a messy bunch.  We can be are can often be arrogant, self-righteous, judgmental, and hypocritical (among many other positive characteristics like compassion, humility, generosity, hope, and joy, to name a few).  We fail, often, to mirror the God that we claim to follow.

And yet.  And yet, our village - this Body - it is tangibly demonstrating the love of Christ to me, every other day.  It is heart-broken and bending over backwards - breaking - for my family, loving us in this our season of pain.  And every other day, it shows up at my door proclaiming, "take and eat."

This might be sacrilegious, but this regular meal delivery, it's like communion for my body and soul.  It reminds me, you are not alone - we love you and are with you.  You are not alone, you have a hope that is greater than this any limitation or fear.  It bids me "take and eat" because this body of your people, we care about you deeply and will bring you to Christ, through our prayers and our tangible cares, in this season.

Our village is being the Body of Christ, broken for us.  It bids me take and eat, warm, delicious, nutritious food, and in so doing, remember the goodness and sacrificial love of the Lord.

For those who are not Christians, but have loved our family well in the last few weeks - I'm not trying to lump you in with anything that makes you uncomfortable - I'm simply saying that you have loved us in a way that has reflected the truest and deepest love I can imagine, and I am so deeply grateful.

...

I remember my first communion, years and years ago.  I was 10 years old, and had newly said the sinner's prayer and claimed Christianity as my own.  There was cancer involved then too - my mom's second round of breast cancer that time.  I had decided to accept Jesus because I was scared of what would happen if she died and I was left behind.  While fear is never a good motivator, and there were so many parts of Christianity that I did not understand or grasp at all, it was an authentic decision, and I remember the holy weightiness of that first communion, fully joining in with the Body of Christ for the first time.

Now decades later, my faith is far deeper and more certain - my questions, fears and doubts different - refined by years of familiarity and wrestling.  But it isn't fear that invites me into the holiness of Communion these days.  It's the tangible love of those around me.  It's homemade lasagne and baked french toast, it's takeout pizza and steaming hot bowls of pho, it's split pea soup and sourdough bread, edible arrangements and pre-sliced strawberries.

It's the tangible love of those around me, who though flawed like me, have loved extravagantly.

- KD

...

T+48 with thanksgiving in all things

In the last 48 days since our first indication that something was wrong, we have had many things to be thankful for.  And in a season where it's easy to drown in the hard parts, Jon and I are trying to make it a discipline to choose gratitude and to notice the little things (non-medical) that make life a little sweeter, easier, and funnier.  I've written about this before, but here's round 2, since it's been a while:

We are thankful...

... for our oncologist (and oncology care team) - we're really thankful for her thoroughness, straightforwardness, and willingness to answer all our questions and give us straightforward answers.  We're thankful she went the extra mile to run extra tests and ensure that we knew what we were dealing with quickly and completely, and that we were able to start chemo right away, and there wasn't a long waiting period.  Just over two weeks after our initial diagnosis, we were inpatient beginning round #1.

... for our lovely friend Amy, who took such beautiful photos of our family before chemo started - we treasure them, and our time with you, and were so thankful you fit us in before everything got started.

... for all the family members (and friends) who have rotated through to stay with our crazy (and sweet) kids so that I can be in the hospital most days and nights with Jon - it has been a labor of love and sacrifice, which they have joyfully made without hesitation, even through sleepless nights with anxious kids.  It has made a huge difference in knowing that our kids are well-loved and cared for when we're not able to be there.  We truly feel our village.

...  for the night nurse who hunted down a breast pump for me our first night inpatient, after I'd forgotten mine, so that I wasn't in pain and didn't have to leave the hospital in those first scary hours.  And grateful that while I have weaned some, I haven't had to do so abruptly as anticipated.

... for rollaway cots and nurses who go out of their way to find them - they might not be as comfy as our beds at home, but man do they beat the chair experience!

... for the friends and family members who continue to send meals, drop off groceries, bring coffee, and run errands multiple times a week - you have no idea how huge of a difference it makes not to have to worry about that amidst everything else.  Thank you.  For those of you that have come over spur of the moment or middle of the night to watch our kids when we've had to go to the hospital - you are a blessing beyond words.

... for a night of normal, trick-or-treating with our kids.  It was so fun to see them excited and adorably dressed up, hanging out with their friends.  Their normal has been chaotic lately as well, and so it was a real gift to see them so happy (albeit vastly over sugared!)!

... for the friends (and strangers) who have generously given money and gift cards to help cover parking, meals, house-cleaning, winter clothing for the kids, and hospital bills - we are blown away by your generosity - and your notes and cards have all been read as we sit in the hospital.  They make us laugh and cry, and in general, feel very loved.  Those of you who have had your kids write cards or send pictures - so sweet and special!  Thank you!

... for our squatty potty that we rescued new in-box from a dumpster years ago.  We appreciated it before, but in chemo/post-chemo/post-hospital digestion, man, does it make #2 easier.  Wish they had these standard in hospitals...

... for a nice shaped head and the advent of hat season just in time for hair loss

... for the person who offered to be a bone marrow donor, if it was needed (not the one Jon mistakenly thought had offered that when they hadn't - although that exchange was kind and humorous as well!).  We have no words - your generosity brought us to tears.

...  for the mouse that kept running back and forth across the hospital admissions waiting room, as we waited for hours to be admitted for round #2.  One never thinks that would be something we'd be thankful for, but it was funny and entertaining, and broke us out of our frustration just a little bit!  And when the room attendant was startled by it and screamed and then tried to pass it off as a sneeze so no one would know there was a mouse (even though we'd been watching it for an hour+), that brought laughter that was so needed in that particular moment.

... speaking of mice, we're thankful for the pest control company that came out quickly to block off holes in our house so that our own local mouse problem would be abetted, since my glue traps were only successful in catching our toddler.  We are also thankful for a sweet friend from church who helped me trouble shoot our freezer issues, and for a warranty that covers the repairs needed.

... for the healing garden at Dana Farber and the moments of breathing space and respite that it offers

... for the invention of Purrell.  Keeping kids not germ-y is hard enough as is, but I can't imagine doing it without that blessed little bottle. 

... for teachers (and a school) that work with us to love our kids and care for them well, and keep them as germ-free as possible - it has felt like a community and family in the midst of this crisis.

... for all the text messages, emails, letters, humorous stories, and calls of encouragement.  We might not reply to them always - my emailing was abysmal before and is even worse now - but we do read them all and appreciate the tangible reminders that we are not alone.

With Gratitude,
J&K

Caregiving: wholly, holy, holey

Caregiver.
Support Person.
Spouse.
Partner.
Teammate.

All hats that I have worn for Jon in the past decade that we've been together.  All titles which can be preceded by the word cancer now.

All terms that I feel like I should write about, in order to help me process.  But in many ways, it's all so raw and real and in process now, that I don't know that I have the perspective for this to be particularly cohesive.  But I process when I write, so here goes nothing.

Being a cancer caregiver - or really a caregiver for anyone who is diagnosed with a life-altering/life-threatening condition - is hard.  How's that for a "no duh" opening statement?

It's hard because, while your body and being remain the same, suddenly your world is taken over by your (plural) diagnosis.  While the diagnosis is not yours (singular) personally, as the primary caregiver, you bear its weight daily as well.  It defines and takes over your (singular) world as well.

All of a sudden my blood cancer vocabulary and knowledge has dramatically expanded.  My knowledge of chemotherapy drugs and cutting edge research and potential side effects went from 0 to 60 in just a few weeks.  And I now know (kind of) how to explain a tumor, cancer, and chemotherapy, to a 3 year old.  I have alarms in my phone to remember drug dosages, I am constantly texting someone to arrange coverage for something, I care far more about his digestion and bodily processes than is decent to discuss, and when he has a bad day, I bear that weight too.

We've both grieved, and still grieve, the loss of our "normal" - we've processed, and are still processing, the "what if's" both good and unthinkable - and we're both actively trying to figure out how to live life fully in the unknown period, keeping things as normal as possible for our three children, while not ignoring the trauma that we're all going through.

Cancer is never easy, but being young adults, young parents, facing cancer has its own unique challenges.  If you want to learn more about some of them, this is a helpful resource.

Add into the weight of the diagnosis, the weight of all our "normal" roles - kids, housework, finances, etc. - previously divided between the two of us, now falls almost exclusively on me - in addition to the new caregiver roles.  Plus handling our kids anger and meltdowns from the disruption to their normal.  Plus coordinating things for kids or Jon or family coming into town when all are not in the same place and I cannot be in both places simultaneously.   I fully intend to add "logistics coordination" to my resume, because it is a skill that I have had to master these days.

I am eternally grateful for the masses of friends and family who have delivered meals for us multiple times each week, run errands, picked up groceries, or watched our kids.  They might seem like little things, but they are sanity savers (and such a gift to a caregiver!) when you're stretched to capacity.

My husband bears the disease in his body, but the weight of it is on us both.

The hard part of writing this post is trying to explain that weight, without sounding like I'm complaining or trying to get attention - I'm not.  I do it gladly, and would not exchange it.  I meant "in sickness and in health" literally when I made that vow, and I am glad that I get to be the one who walks with him through this journey - most days, it is a joyful privilege because it means that I get another day with my love.  I take none of them for granted these days. But it is weighty and life-altering (and exhausting) for both the patient and the caregiver, nonetheless.

And sometimes it's really hard to explain to someone who hasn't walked this walk - of caregiver - just how difficult, and yet rich; how hard, and yet beautiful; and how overwhelming, and yet simple, this position is.

There is an intimacy that comes from sleeping in the uncomfortable hospital chair next to your spouse, and waking with every nurse that comes in.  There is a nakedness and vulnerability from coming face to face with your spouse's mortality (and your own), where you stop pretending and stop protecting, because you know that your days are not guaranteed.  There is a holy weightiness of being an advocate and defender and knowing the meds, routines, and side effects that come with hospitalization and treatment.  And there is a simplicity that comes from a life-altering diagnosis, where everything accessory falls away because you simply cannot manage more than you have to, you know what matters and you let go of what doesn't, and you have to accept help.  You say no to obligations a lot more, and yes to help more.  And you become far more aware of the little things that make this hard place easier, funnier, and more beautiful - if you let it, gratitude blossoms in a way that it cannot often otherwise.

Even a mouse in the waiting room is a humorous gift, all of a sudden.

It is a holy weight.  And yet it is a weight, nonetheless. 

Take time for yourself and make sure to practice good self-care, they say (among other wise advice).

And that's true and wise and wonderful and needs to happen - but how and when?  And how do you fight the guilt that comes from taking time for yourself when your kids need you when you're not with your husband and your husband needs you when you're not with your kids?  Even though you *know* that you need it and can care better for everyone when you're, you know, sane and have a little sleep.

I was driving home from the hospital the other night, to be with the kids for a few hours before returning to the hospital for the night, and knowing that I needed some sanity time, decided to make the 30 minutes in the car "my time."

I made it about 5 minutes before I remembered something about my husband's digestive process that I was supposed to remind him to tell the nurse, and knowing that he'd push back on asking for meds to assist with it, I stressed and worried about it and spent most of the drive trying to figure out what, where, and when I needed to act.

Self-care #fail.

I called a friend on the way back to the hospital and she let me vent, and reminded me again that I need to take space to care for myself.  She made me laugh and reminded me that I was not crazy.  We found little wins in the day, and I went back into the hospital much more sane.

Self-care #win.

I don't have a point. I'm not far enough on this journey to be able to give any sage advice.  Suffice to say, cancer (insert your own life-altering/life-threatening circumstance here) weighs on and changes more than just the person who bears it in their own body.  We caregivers, we carry it in ours as well. 

It is complex and hard and heavy and beautiful all wrapped up into one.  Don't tell us what it feels like, or what we need - ask us.

And when you pray for or seek to care for people who have cancer (insert any other malady here) - see if there are ways you can pray for and care for their caregivers as well.  Most of us are pretty tired.  Most of us need people to vent to.  People to support us and feed us and tell us to go the bleep to sleep.  People to release us from the guilt that we feel for taking care of ourselves.  People to help us laugh, see gratitude, and retain some semblance of the normal we so desperately crave. 

We cannot do it alone (and I'm so thankful that I'm not).

I will (choose to) see the goodness of God

Photo Credit: Amy Murgatroyd Photography

We're now on day 3 of inpatient chemo.  We've known about this tumor for 25 days, and our worlds have been completely turned upside down.  Our kids are melting and missing Daddy, and I am running between home and hospital, and torn between their grief and my own.  Our "normal" right now feels ill-fitting and uncomfortable - but it will be our normal for the next 5-6 months, so we have to get used to it.  

It's easy, sometimes, when your life turns upside down, and crisis hits, to feel like the world stops moving.  To feel like you're drowning under the weight of grief.  You walk past sunshine and people smiling, and it just seems rude.  Like, how can your life be so normal, you be so happy, when mine is so wrong right now. How can you not know?  How is my tsunami/earthquake/grief not rocking your world too? Other times, everything else seems like a blur outside of my tunnel vision centered on what's going on in our lives - passing by, irrelevant to our world, which has shrunk down dramatically in this post-tumor life.

I had a moment the other day, walking to get the boys from school, on a bright sunny day - way too many people smiling, me in tunnel vision mode - and I was stopped by two random people asking for money or signatures, for themselves, or for their cause.  I was polite, but frustrated - angry even.  In my mind, the dialogue was "How can you ask me to care for someone else's children/family?  I'm overwhelmed with caring for my own right now and I don't know how we'll make it through this."

Not a wrong thought.  Not an inaccurate thought, certainly an understandable thought.

But, as I kept walking, I had the very clear thought, like the voice of God gently whispering - "You have to make a choice now, whether you will be consumed by this, or whether you will lift up your head and see others, without judgment, wherever they are."

You have to make a choice.

Lift up your head.

You have to make a choice.

Here's the reality - my world right now is very small and it has to be.  I care deeply and passionately about issues of justice and compassion in the world - I love being able to care for others - but I simply don't have the bandwidth or emotional energy to invest heavily there right now.  My world is centered on caring for my husband and my kids, and occasionally myself.  And that's the way it needs to be right now, simply to make it through.  I am so thankful for the literally hundreds of people who are supporting us, praying for us, and caring for us, to enable me to do just that.  That is a debt of gratitude that I cannot ever repay.

BUT.

I have a choice on whether I am consumed by it, or whether I lift up my head to others.

Sometimes lifting up my head simply means raising tear-stained eyes to look into the face of another and receive grace and care from them, rather than drowning under the weight that we/I carry, alone.  

Other times, lifting up my head means seeing others where they are and rejoicing with them when they rejoice, and grieving with them when they grieve, without comparing sorrows or begrudging joys.  

Sorrow and joy, they are not incompatible.

In life, they both exist in the same places and spaces.   One moment, you're laughing at an 11 month olds drunken stagger walk - the next, you're awoken by the alarms from your husband's chemo drip and the panic that something is wrong.   One moment you're snickering at something your 4 year old rhymed with kitchen, the next you're wailing when he tells you out of the blue that "it will be okay if Daddy dies because you'll still be here with us, Mommy."  One moment you're laughing about how chemo is the most expensive haircut/vasectomy/couples getaway ever.  The next you're holding your 3 year old as he sobs because he misses you so much and you're undone by not being able to be everything to everyone.

It's not either or.  It never has been.  And when we are consumed by one, unable to see anyone else - our lives are simpler, but far less complexly beautiful.  And we miss so many opportunities to see the goodness of God and others.

Your joy - if you are in a season of joy - is worth celebrating, even if we are in a hard season.   Your babies are beautiful, and celebrating them, it adds to our joy.  Your accomplishments and triumphs and delights - when I look up at you - they add to my joy.

Your sorrow - no matter if it's large or small - is worth grieving, even if we are in a easier/harder season.  With tear-stained eyes, we can grieve them together.  In God's economy, grief is not weighted heavier or lighter - it is simply grief.  I might not have the bandwidth to carry you in your grief, but I can pray for you as you share, and I can weep with you as you weep.

And on days when I can bear no more weight, I always have a choice to lift up my eyes to you and make the choice to share it with you, rather than be consumed by it.  I might not share in depth - many times that's not the right decision or the right relationship to do so - but I can smile, or cry, and not simply walk by alone.  

"Ok God," I said.  "I will lift up my head.  I will make the choice not to let this consume me.  And I will trust you, that you see me in my grief and overwhelmed state."

I tell you this now as well, friend.  This cancer, chemo, and care - it will determine much of my life for the next 5-6 months.  But I will make the choice (daily, hourly, minute-ly?) not to let it suck me into a solitary pit.  I will look up, look to you, look at you, and embrace the complexity of joy and sorrow.  I will not do this alone, isolated with only what's happening to me/us in my view.

I got home that day to find three completely random checks in the mail, and a home-cooked meal from a friend who wanted to love us in our grief - more than covering all of our needs for that week.  And a message about delivering groceries for the week.

God laughed a little bit at me, and I wept with those tears of joy, knowing that my Father in Heaven sees me, and knows me - and our friends care for us, and carry us - and invites me into the complexity.

Lift up your head.  And you will see goodness [[and]] grief, and understand love.

T+13 days - thankful in the midst

To say that these last two weeks have been some of the hardest of our lives would not be an overstatement.  Our world has been turned upside down and still isn't upright.  We have no idea what comes next - although we have an inkling that it will likely not be easy - nor are we guaranteed that we will make it through it (although we are hoping, praying, and holding onto that with everything in our beings).  We are still a mess at the moment - and that's okay - cancer sucks and it knocks the ever-living wind out of you when you meet it face to face.  We're not glossing over things - we know that this is scary and a big deal - but neither are we devoid of hope in the slightest - and doctors agree that there is reason for optimism, for which we are grateful.  Even so, it feels like traversing a road that one never wished to travel.

Even in the midst of these hellish last two weeks, there are countless things that we are thankful for.  Jon suggested that we keep track of them, so here's my week 2 attempt to do so.  [I'm not writing thank you notes right now (I'm sorry!), and I'm sure I've forgotten some - but just know we are so thankful for all the love and encouragement we have received!]

We are thankful...

... that we didn't move out of area, as we thought we might this past summer.  Even though on paper it made far more sense to do so, all of our promising opportunities fell through, and so we found ourselves still here when this crisis hit.  Still here, with an easy PCP to call when minor symptoms persisted (had we moved, I doubt we would have had a PCP or even called because we'd still be in transition).  Still here with a wonderful community of friends and family who have literally fed and carried us these past two weeks.  Still here with neighbors who can and have babysat on the drop of a hat.  Still here with a job that has been incredibly gracious and basically said "do what you need to do to get well" and a full slate of vacation days and sick days - and coworkers who pray for us and feed us and pray with us.   Still here in one of the top medical epicenters in the country, with top cancer care facilities close to our home, should it prove to be cancer.   Minutes from the airport for any friends and family who fly in.  What felt like God's no - that we mourned significantly this summer - has turned into a place of profound gratitude.

...  that there was a last minute cancellation/opening for Jon to see his doctor that fateful Thursday night.  Otherwise, the next appointment would have been weeks from now in late October.

... for the countless people (including strangers) who have fed us, cried with us, sent money to us, prayed for us, held us, organized help for us, and watched our kids for us on the drop of a hat in the days since we first learned of this tumor.  Each one of you has made our load lighter and our days brighter.  Thank you from the bottom of my heart.

... for my sister-friend who has held me while I screamed, has taken time off of work to care for us and our kids, and expertly organized an army of people to feed and care for us - all while renovating her house and pregnant with her first baby.  When we decided to be roommates a decade ago, I never knew how profoundly blessed I/we would be by you - both in this crisis, and in the years prior to it.

... for the elevator doors opening at a divine moment, two weeks ago at church, so that we bumped into an oncology acquaintance who we don't see often - she has since networked us to the people who will most likely be our care team in the months to follow. For the oncologists and doctors we know who have offered to connect us to specialists and experts in the field, at the best hospitals, once we have a definite diagnosis.  Who have looked at our scans and talked us through procedures and big words and scary options and given us informed hope.

... for Jon's brother flying up here on short notice to be with us when he went in for the biopsy - and helped us as he healed and hiccuped - and the rest of our families who have also also volunteered to come any time and help in any way.  We know you want to be here, will be here on the drop of a hat, and we are so thankful for you.

... for the gregarious MFM doctor in the pre-op stall next to ours who was in for an emergency gallbladder removal.  She was enthralled by her engorged gallbladder and kept offering to show it to anyone who would look - and giggling about how she loved it so much she wanted to keep it.  She was mildly drunk on her pre-op meds and she kept us laughing through the curtains with her tales and antics - through what was a very long and anxious wait for the surgery.

...  for my friend who dropped everything and came and sat with me at the hospital while I waited for Jon to come out of surgery, and then went to pick up his meds so that I could just take him home.

... for our surgeon, Dr G, who, while no nonsense, personally took the time to answer all our questions and make sure that we were doing ok, even at the end of his long day.  He didn't have my phone number, so he walked two different floors of the building to locate me after the surgery, and then sat with me to patiently ensure that I understood and had my questions answered.

... for sunny days and cooler temperatures this past week.  They are small blessings, but they have made this week a little easier to bear.

While we have much to lament and plead for mercy in, we also have much to be thankful for.  We are not alone.  And we are so so very thankful.

T+1 week: biopsy day

Sept 29, 2017

We're at the hospital for Jon's biopsy today.

Five floors above me, they're administering general anesthesia and gently putting my husband to sleep.  Cutting a two inch wide hole in his chest and removing several square centimeters of his tumor from his chest ("don't worry, you won't miss it; you've got more than enough" quips the Resident assisting...)

You've got more than enough.

15 cms by 11 cms by 8 cms.  He's basically got a brick in his chest.

Way the hell too much.

I've never hated something so small (and so inconceivably big) so much.

I'm sitting in the lobby, drinking coffee and watching the sun sink lower into the horizon in a beautiful sunset.  Fifteen more minutes until my phone should ring and I should hear that Jon is out of surgery and heading into recovery.  The alone time that my mama heart has often longed for is mine in this moment and yet I would give anything not to have to have it.

I feel small in the wake of the past week, and scared of the tide of the future.  And yet at times, the present feels perfectly normal.  Time stands still and yet screeches by at a million miles an hour.  Waiting. Waiting.  Waiting.  Alone, yet more surrounded by friends and family than every before.  Screaming at the heavens, into space, into nothingness - yet intimately embraced by a God that has never been closer.  This whole crisis takes everything I thought I knew and throws into a blender swirling out ugly and beautiful chaos.

Too much, too big, too long, too short, too small, too little.  Enough?  Enough.

Waiting to see what comes next.

Upside Down - T+48 hours

I'm washing water bottles and refilling them.  Bleaching high chair straps and washing the grime off of them.  Changing diapers and wiping faces.  Disciplining and hugging children.

The sun is shining.  Everything feels normal.  Looks normal.

And yet.

Fabric lies uncut for projects that are now delayed.  We haven't been to work since Thursday and we're 100% okay with that.  I keep forgetting to cook dinner - tonight, I pried a completely frozen steak off of splintering styrofoam and nuked it to thaw 20 minutes before we hoped to eat - and laundry lies unfolded.  We've cried more hours in the day than ever before, and we hold each other as if today was the last, even though we don't know what the future holds yet.

Everything is wrong.  Everything is hurting.

And yet, life around us continues on, normally.

The last 48 hours have turned our lives upside down.

For most of the summer, my husband has had very minor symptoms in his chest - mild reflux, pressure on his chest, and some discomfort when he breathed deeply.  He mentioned it to his PCP in June, and they pursued antacids and a routine course of treatment - and we didn't think much of it.  He was stressed about work and we were processing some big decisions, so we figured it was anxiety and stress, or maybe some minor lingering bronchitis.  But when it didn't resolve, he scheduled a follow-up for this past Thursday evening.

His doctor ran a chest x-ray, among other tests, and called him within fifteen minutes of him leaving the office to tell him that he had a abnormal mass in his lung area.  A CAT scan the next morning confirmed that it was a large tumor - six inches by three inches - located on his thymus or lymph node near his sternum.  [For perspective, a dollar bill is 6 inches long and 2.5 inches wide.]  We have an appointment scheduled for Tuesday the 26th with a Thoracic Surgery and Pulmonary Intervention Specialist - and hopefully at that point we will know more.  We are anticipating numerous scans, tests, and biopsies to determine what the mass is, and whether it's benign or cancerous.  We are guessing, most likely, at very least, we're looking at a surgery to remove the mass.

Everything looks and feels normal on the outside.  My husband looks (and feels, for the most part) perfectly healthy. But everything else feels upside down.

Stinky, Stanky, Stunk... or, Rasputin dies once more

Every time we travel, we come home to a stinky house.

Without fail, when we walk in the door after a day or more away, weary from the road, we are greeted with that sweet, sweet aroma of home... a la dead animal.  And it reeks.

Even when we take out the trash, wash all the dishes, double flush the toilet, and leave the house impeccably clean (by our kid-house standards).  "Never leave me again," our house pleads.  Serious separation anxiety, that one.

This last time was so bad - and so inexplicable - that we panicked a bit and polled a few willing-to-be-honest, super-sniffer, regular-guest friends to ensure that we hadn't gone nose blind and it didn't smell like that *all* the time.  Assured that no, it doesn't smell like dead animal all the time - just occasionally the goes-with-the-territory odors of sour milk, poop, and kid feet - we started to dig a little deeper to figure out what might be causing the stench.  And that's when my adventures began.

The smell seemed to center around the dishwasher, trash, and toilet area, so, armed with my elbow high gloves, Clorox, a screw driver, and a wrench - and finding nothing in the trash or toilet area - I dove into the dishwasher.

Now our dishwasher is an old {old} cheap dishwasher, which is nailed into our kitchen counter - and apparently has not been moved out for about a decade.  As I un-nailed it, and pulled it out, I discovered why it was nailed in - it's not balanced.  Pull it out, un-nailed, and it tips over.  First mistake.  Also, entirely related, I discovered just how much water remains in the dishwasher, after it has finished washing and drying the dishes.

As I waded through the rising waters in the kitchen, to begin cleaning out the decades' worth of dust bunnies behind the dishwasher, I found remnants of another life - specifically a small mouse life - so far gone that he was nothing more than a skeleton on a glue trap that we had not placed [i.e. more than 7 years old].

I also found catnip (we've never had a cat), multiple mouse poison packs, and several large holes by the pipes with "WELCOME MICE" signs draped across their entrances, as small trumpets welcomed the hordes of mice entering the land of the free with smiles and cheers.  One of the dust bunnies was so mature that he actually greeted me in proper French.  [Some liberties might have been taken in this description.]  And don't worry, Port Authority shut down those holes with steel wool, pronto.

Also, despite the chaos behind the dishwasher, I promise I do clean my house.  Please don't revoke my membership in the Good Housewives club just yet...

But amazingly, no stench was found.

So into the dishwasher I dove.

Now, the food trap in the back has been stuck since we moved in - meaning, I clean it out fairly often, but have not been able to remove it to clean under it.  But the stench was vaguely emanating from that location, so my screw-driver, wrench and I dove in.

It was stuck, and it was stuck down good.  But it wasn't my first war against the house.

A few broken segments later, plus lots of elbow grease, and I won the battle.

As I lifted up the trap, I discovered what, on first glance, appeared to be strands of disgusting, disintegrating hair or stringy meat - the anchor that had held down the grate.  And also, by all olfactory signs, the source of the stench.

As I unwound it, strand by slimy strand, pulling solid portions out of the pipes, it soon became apparent that this was not what it had initially appeared, but rather...

a rotting,
liquefied,
decomposing

*mouse*

... the innards of which had woven their way around my dishwasher trap after his unfortunate demise, apparently several months ago.

EWW to the double EWWW.  EWW. EWWW.  EWW.  And in case you missed it, EWWW.

Thank the Lord for Clorox and elbow length gloves.

And while it's not my first time touching a decaying rodent [now you really will revoke my Decently Clean Human Beings membership] man, I hope it's my last.  Also, everything in my house has now been cloroxed, so you really have no worries.

It appears that the water that remains in the dishwasher had covered the decomposing mouse, diminishing the scent.  Until, of course, we were out of town for a few days and some of the water evaporated, releasing our smelly little friend's signature odor.

Also, EWW.

As I related this story to a few friends, my friend Jenn said, "You should blog about this!  I'm sure there's some deeper metaphor or lesson in it."

Well, friends, here's my pearl of wisdom for you:

"Don't let mice die in your dishwasher" and "Invest in Clorox" - because following this experience, I will be increasing the value of their stock exponentially.

KD out.

Offended, Woke, Working on it

I remember the first time I "woke up" just the tiniest bit.

It was 2005 or 2006, and I was at an conference called "Race Matters." I was in a small group - half white, half black - of peers from my college and neighboring schools.

We were discussing why we were there, and our backgrounds and experience with race coming in.  And I said (minority friends, can you guess?):

I don't really have a problem with race so I'm not really sure why I'm here.  I might have even thrown in an "I have black friends" for good measure  ... blah blah blah (I don't remember the rest).  Something sterilized and positive sounding.

And for the first time in my life, at 20-21 years old, the people around me didn't just smile and nod.  Instead they gently pushed back against my statement and challenged me to look deeper.

I was offended.  Angry even.

I was a "good" person.  I did have minority friends - not just periphery, but very dear.  I was intentional about learning about other cultures and appreciating them.  My family didn't have a lot of (read: any) wealth, so clearly I couldn't be privileged.  I didn't say overtly racist things and I didn't actively think white people were better than others.  Besides, racism was over, right?

But I had never really thought about race, racism, and the experiences of others of a different race than my own.  I had never asked my black or brown friends.  And I observed cultures, but my listening skills were only beginning to develop.  I had never considered the ways in which my culture and my race shaped my experience or my benefits.  Privilege meant only one thing to me - money - and I didn't have it, so I didn't dig any deeper.  If you had asked me what my culture was, I couldn't have given you an answer.  And I had never been under the leadership of someone who wasn't white and didn't see a problem with that.

I was offended, but I stayed.  I begrudgingly listened.  And in listening, I *heard* little bits of other peoples stories.  And even though I didn't fully think I needed to at that point, I committed to continue to learn and listen - a journey which I am still actively on.

That was 12 or 13 years ago.

In the years since then, I have bumbled through a lot of different experiences with race, racism, and culture.  I've done it poorly many times.  I've been apathetic and unengaged many more [that's one of my places of privileges, btw].  I'm guilty of being vague, safe, savior-esque, ignorant, and "holier than thou."

But I've also listened a lot.  Been intentional with learning more about other people's experiences, and [all more of] my own history.  And tried to learn the fine balance of speaking up and speaking out, and shutting up to make room for others to speak and empowering their voices.

Because I am convinced that race does matter.  That our cultures, our races, they matter deeply to the heart of the Christian God - and are beautiful to him for their reflections of different aspects of His heart.  And pursuit of Him means pursuit of racial justice and reconciliation.

Because I am convinced that racism is alive and well in our country, within our infrastructure, our justice system, our culture and our hearts.  Last weekend's events in #Charlottesville are nothing new - it's just the brooding subsurface-level white supremacy that's been there since our founding, unhooded and laid bare.  It's easier to judge neo-Nazi's with torches than the micro-aggressions that occur daily, but they are no more significant.  This is not a political post in the slightest - while I personally align left, and I think the left acknowledges some of the issues more - racism is not a partisan problem, despite what both sides say.

I haven't arrived and I don't know what I'm doing.  I have to apologize and repent more often than not.  But I'm committed to this journey of listening, learning, heeding the corrections of friends who are wiser than I, speaking up against racism, teaching my kids about power, race and true justice, and seeking to empower minority voices.

I'm a stay-at-home mom right now.  My days are made up of trying to keep my daughter from swimming in the toilet and my sons from ninja jumping off or onto tall things [I failed one of those today].  I don't go to rallies, and I don't have many public forums - this blog [that I haven't written on in 3 months] is one of the only.   That's not an excuse, that's just reality right now.

My role in the greater picture is small and my voice insignificant.  But it is missed, when it's not there.

Because while my role in the Great Big Battle Against Racism and Injustice is small, my role in my kids' lives [two white sons and a white daughter] is pretty big.  

I'm part of a local church that doesn't say a lot about race and God's multicultural kingdom, even though it values that - and I know my pastors' email addresses.

I have friends that I hang out with weekly, as we try to stop our kids from licking green line trains and somersaulting off of things, and occasionally we get a few sentences in between rescues - and we get to challenge each other and learn from one another because we're in regular relationship with one another.

My point is this (and it's mostly for white people like me):

Your voice and your power matters.  We each have places where what we say and do [or don't] matters.  Social media is included in that, but shouldn't be the only place we think of.

You don't have to have it figured out to be part of the solution rather than part of the problem.  Don't expect that you *will* figure it all out.  Start with learning and listening.  Try to do so from non-white sources. Ask - which books are you reading? which articles?  who wrote them? who do you repost?  whose voices are you hearing?  whose authority are you under?  who do you respect? who are you around?  Do you validate or question other people's experiences, when you don't understand them?

Recognize that action does not have to be grandiose or "solve" things [because, white people, we can't do that].  Just as micro-aggressions are a part of the problem, micro-actions can also be part of the solution.

Do you have kids? (What did you tell them about Charlottesville? Ferguson? Charleston?) What do you tell them about race and power or kids with different names?  Who's pictured in their storybooks?  Who wrote their story books?  Who do you schedule playdates with on the playground?

Do you speak up when your friend makes that joke or posts that meme? (I didn't last time.)  Do you speak up, when the Big Bad Racist Things happen?  When you pray, do you ask God to show you your own heart and convict you of ways that you gravitate towards white leadership [people, culture, movies, insert your own option]? Have you talked to your boss/coworkers/pastor/friends about their words or silence on the matter?

Everyone has a starting place - a moment where being "woke" begins - and that involves seeing the problem more clearly and owning it.  And for those of us who are white, often times that feels offensive, because it requires we own our own identities, complicity, [sin] and ignorance.

After many years of campus ministry, I came to the conclusion that being offended is not necessarily a bad thing - it's a starting place.  What you do from there determines whether it builds anger and frustration or leads to reconciliation and growth.  In humility, we grow.  In pride, we barricade ourselves from relationship and the truth that can help set us free.

I'm glad I stayed that weekend.  And when your moment comes, I hope you will too.

on healthcare, love your sick friend

Y'all.

It's been a long three weeks of sickness in our house.  We've had the mother of all colds, fevers, double ear infections, croup, suspected pneumonia (it wasn't), eye infections, 5ths disease, and topped  it all off with a cough that clears the room.  We've thought we were heading towards healthy, only to regress or get something new while traveling far away from home.  All five of us have had something, and the little 3/5ths of the family have had more than one something.  This is out of the ordinary for us - we are typically pretty healthy, and rarely head to the doctors outside of regular check-ups.   My kid who had perfect attendance before this, missed 3 days of school in a row.  In the midst of that, there have been countless calls/trips to the doctors office, more sleepless nights than I can count, and more prescriptions than our annual average.

We are tired.  Very very tired.  And still trying to get the littlest ones healthy again.

In the midst of all that, as a parent, there are numerous moments of decision - with croup, while staying in our friends house out of state, what do we do?  With this cough, do we go in or do we wait it out?  With this fever, do I medicate, or do I let the fever burn out the disease?  What is actually hurting my child who can't articulate his/her pain?  What information do I need to tell the doctor this time?  [Oh my God, will I ever sleep again?]

The one decision that I'm glad we never had to make is - can we afford to take them to the doctors office if they need it?  We are thankful to have good jobs, and good insurance, and great doctors. [As an aside, if you are soon-to-be a parent, the BEST thing you can do is find a pediatrician that has a helpful 24-7 nurses line, and weekend hours.  Trust me.]  While copays and deductibles are not fun, they are infinitely cheaper than full-pay, and the decision to take them in or not has (thankfully) not been "can we afford it."

Today, I am exceedingly sorry to anyone [all of our family] and everyone [half the state of Virginia] whom we might have infected with our diseases.  And I am exceedingly thankful for health insurance, enabling me to provide good care for my children in some stressful weeks.

I grew up without health insurance - in part because my parents were self-employed.  In part because one of my parents has a pre-existing condition which caused them to be dropped from or ineligible for most, if not all, pre-ACA health insurance policies.

I am, and have been, by-in-large, very healthy.  I do not feel like my lack of health insurance growing up (largely) negatively impacted me.  I went to the doctors rarely, but really didn't suffer from that.  I learned to ask questions about what care was actually needed, versus suggested.  I have no issues with resistance to antibiotics because I've used them so infrequently.  I have a healthy respect for the body's ability to heal a lot of things, by itself.  And I have a better understanding of the generous rate cuts of (some) physicians for cash pay patients.  For these things, I am very grateful.

However,  I also know that -

- The stress of finances often influenced healthcare decisions for my parents.
- My parents always did what was needed to get us healthy - but that was costly to them.
- I grew up scared of serious illness because instead of consulting with a medical professional, we googled symptoms and illnesses.  And I grew up thinking of medical care as a luxury rather than as a readily affordable option.  Even for the most serious of issues, you needed to know what you had, and know that it was serious, before you went in.
- When I had my first serious injury in college, requiring stitches, the first question I asked was "how much will this cost?" rather than "can you stop the bleeding?" The nurses thought I was having an anxiety attack because of my duress in considering what they considered basic care. In the end, I opted out of stitches, because of the cost.
- My parents still don't have healthcare, because despite ACA's intended benefit to them, the premiums are still too high, and they see themselves as healthy and not needing it, after 30+ years without it.

Where am I going with this?

Access to quality healthcare is a good thing.  It's not the end-all-be-all - and life can go on for many without it - I am a testimony to that.  But it is tremendously beneficial when you do have it and need it.  And we haves, we often are blissfully unaware of what life looks like for the have-nots.

Healthcare is also a complicated thing.  I don't have a strong sense of what the wisest system of healthcare is - single payer, multi-payer, group funded, government, private, etc.  I don't fully understand all the issues contained within it.  I know that there are ways that medical treatment is overused and abused and that can lead to complications that I don't know how to address.   I did a math project in college on the spread of nosocomial infections, and drug resistant diseases, and I could barely spell it, let alone solve it.  I know that there are vast portions of the populations that lack basic healthcare and that is costly to them and society as a whole in many ways - even while providing coverage through a centralized plan is also vastly expensive.  I also know that there are many non-medicinal treatments, holistic medicine etc., that should be considered somehow (but how?) in the grand scheme of things.

I have much to learn and much more to understand, on both sides.

What I do know is this:

Quality health(care) is often *often* influenced by finances. When you do have good insurance, or financial means, it is far easier to pursue good health(care) and maintain good health.  Even if that just means that you regularly maintain routine healthcare, early screenings, specialized diet, etc., eliminating some of the needs for urgent care later down the road.  This is not a luck thing or a hard work thing.  This is a privilege thing.  Yes, you might work hard for that money/job/coverage - but there are millions of other people who work equally hard for minimum wage and aren't afforded the same healthcare options.  And yes, you might be healthy now, and make healthy lifestyle choices, but disease strikes without warning - sometimes when a diseased family like mine has to fly back to their hometown on your Jetblue flight [sorry again], or sometimes more seriously when despite all your good life choices, your test results come back positive for cancer.  If and when that happens, your finances (followed by support network) are more likely than anything else to influence your care.

Pre-existing conditions are a real B.  And conditionalizing coverage based on them shows a priority for financial gain rather than human decency.  It is all well and good when those are numbers.  But when those are people with names and faces - me, my parent, my friend - it lacks human compassion and decency.  Insurance is not required to be moral, but healthcare is supposed to be based on a system of protecting life and preventing harm - and our current insurance "business" model is antithetical to that.

As a parent, who deeply loves her kids, the thought that the health of my children (or any child) might not be *affordable* - might be a luxury only afforded to those with means - that is unfathomable.  I understand the consumeristic desire to only pay for what *we* use - I am one of the cheapest humans known to mankind and I hate paying extra for things that I don't personally use.  But at the same time, come on people.  We have got to be more human than that. Whether you think that's the role of the government or the church or "someone else" - we've got to figure out a way to "care for the sick" and not prioritize healthcare for those who "have" over those who don't.  If we want to be "pro-life" - let's be fully pro-life and let's figure out a way to make basic healthcare more easily accessible to all.

Politics aside [because does either side fully know how to solve it?], healthcare matters.  Good health can be an idol, it can be an obsession, but when it is gone, we all grieve the loss of it.  Today, in the midst of all our diseases, I do not take for granted our health or our healthcare.  But in light of that, I long for the day when the healthcare that I enjoy will be accessible for all - however that might come to pass.

Call me a liberal, tar me and feather me, but I hold these things to be self-evident - that life, liberty, and the pursuit of happiness are unalienable rights for all humankind.  And that good care of health falls within those.

If you need me, I'll be over here, spooning my Kleenex box.

Mom's Chocolate Chip Cookies

I'm baking cookies this morning, from my mom's recipe.  Chocolate chip.

We make them differently, she and I, but we use the same recipe.  She uses Crisco and margarine, I use all butter.  I add oats, she doesn't.  I freeze half of them to save for later; she freezes them all because Dad likes them that way.  We both make them soft and chewy.  And both of ours are gobbled up by those we love, almost as soon as they leave the oven.

I don't have a close relationship with my mother - never have.  Neither of our faults exclusively, just an amalgam of missed moments.  And most days, in this decade, that's just the ways things are, neither good nor bad.  But this morning, as I bake cookies from her recipe, I let my mind wander a little into the world of what ifs:

What if we had been close?  What if we were still?

Would I have made different choices in high school?  Would I have stayed closer to home, when the time came to leave for college?  Or perhaps returned "home" afterward?  Would she have been my confidant?  Would she be the one that I call now, when I need advice, or simply when I'm exhausted from being up all night *again* with the baby?  Would our conversations be silly and serious, all wrapped into an effortless ease?  Would she have moved closer, so she could hang out with her grandchildren more often?  Would she babysit so that we could have that long overdue date?  Would I know more of her story, her thoughts, her longings?

Would I call her right now, to tell her that I was thinking of her, and making her cookies?

What ifs can be a real B sometimes.

And yet.

And yet, if we hadn't had the relationship that we did, I don't know if I would have gone to the same college, so many hours away from home.  If I hadn't done that, I don't know if I would have actually grown and come into a faith that was real and authentically wrestled with, thought through and my own.   Maybe I wouldn't have dated some of the same boys - or maybe I would have been less guarded with others - but if I hadn't had those relationships, those experiences, I'm not sure that I would have had the perspective that I did, when my husband finally rolled into the picture.  I certainly wouldn't have had the same wide range of beloved friends and really sweet memories that I did, from my "throwing caution to the wind" and "making my own way" spell.

If we hadn't had the relationship that we do, man, so much of my own journey, through the mountaintop panoramas and darkest of valleys - of work, family, identity, home, adventures, reconciliation, healing, wrestling - so much of it might have looked different.  Then again, maybe not.  Who knows.  Does the butterfly's fragile wing affect everything, or nothing at all?

But what I do know as true is - if we hadn't had the relationship that we did, I would not have understood the fierce beauty that is fighting for something that sometimes you'd rather be fighting against.  I wouldn't know, so intimately, the sweetness of each baby step towards a good relationship.  And my picture of healthy conflict and holy reconciliation would be shallower and less dear to me.

If our relationship - with all its ups and downs, and conflict and resolution - had been different, I might be a very different person.  In good ways, maybe.  A close relationship with parents is certainly to be desired.  But in some bad ways too.  Do not mistake that within every refining fire, dross is burned away, leaving behind gold that might otherwise not have been revealed.  I am who I am as a result of the life that I have lived.  And while I do not wish to traverse them again, I am grateful for all the mountaintops and valleys that have brought me to where I am presently.

So this afternoon, I'll call my mom.  Tell her I made her cookies this morning, and that it made me think of her.  We'll talk about baking, the weather, and my kids, and we'll take tentative baby steps into deeper waters.  Because this journey is not over until it's over.  And we're making our own way, one baby step at a time, and for that I'm grateful.

And tonight, I'll hug my baby girl and tell her how much I love her - and how deeply I pray that she and I will always share this sweet bond that we have now.  Man, I want that, and will give my all to make it so.

But I'll remind her, and remind myself again, that even if we don't for a season - there is still gold yet to be revealed.

Treasure these moments

Today was a pretty average day, by our standards.

One big meltdown because a train line was delayed and we didn't get to ride it.  Another meltdown because mean old mom said that we couldn't "just take" their friend home without his mom knowing about and signing off on it.  An hour where baby girl did not in any circumstance want her tush to touch the ground, please and thank you. One bowl of yogurt joining me in the shower.  One skipped nap. [Also an awkward encounter with the neighbors when I thought someone was breaking their windows, but it turned out that they were just very congenially smashing a mirror with a hammer.  Because, why not.]

With three little kids - 4, 2.5, and 5 months - it is very rare that we make it through a day without a meltdown, fight, temper tantrum, or tumble (sometimes it's even my children).  My kids are not bad kids, but they're *kids*, and there are quite a few of them, so the odds are ever in our favor.

If you ever want to get an up close look at what the end of the world looks like, just try telling my two year old that he can't wear socks to bed (when it's 80 degrees in his room).  I double dog dare you.  Trust me when I say that he is *very* passionate about not having naked feet.

When we go out, we are almost always guaranteed to hear two phrases:

"Oh wow, you have your hands full."  And,
"Treasure these moments.  They grow up so fast."

Depending on my mood, I respond to those statements with varying degrees of kindness and snarkiness.  I find it deeply ironic when the same person says both, especially if we're mid-meltdown.  But, because I hear it so often, I've spent a lot of time pondering the second.

It's typically said by an older woman or man, often grandparent age.  Their laugh line wrinkles give away their histories, and their calm demeanors makes me wonder if they're on to something [or, depending on our degree of chaos, on something].  It's never said in an accusatory manner - but when I have just lost my temper with my four year old for the third time that hour, and am jiggling an exhausted 5 month old, trying to make it through the check out line before she hits critical mass of meltdown, it can feel accusatory. "Why aren't you treasuring this time?" Two year old wails in, "but mommmmmmmy, I wannnaaaa treaaaaaasureeee."

Truth is - I know that they grow up quickly.  They already are. I know that I'll miss these days when they're gone.  I already (kinda) miss the tiny days.  Kinda.  Not really yet.  But when I'm in the thick of it, managing discipline and boundaries and attitudes and general chaos, treasuring it is not the first thing on my mind.  Surviving is.  Especially at this stage in the game.  I've heard *parts* of it get easier, as they get older, and I'm holding out hope for that.

I don't want to miss these moments.  I don't want to be so blinded by our chaos that I miss the precious minutes and seconds of everyday life with my littles. Babies don't keep, as Ruth Hulburt Hamilton says.  But neither do I want to deny (or worse, guilt trip myself or others about disliking) the parts that are just plain sucky.  In hindsight, stories like this one or this one or this one are hilarious (which is why I share them to remember them) - but in the moment, they make for really hard days.  As they say, the years are short, but the days are long.   And man, they can be long.  Especially with bedtime stalling. (Anyone else?)

So, I've started modifying that well-meant phrase, for my own sanity.  Here's what I'm saying instead:

"Treasure *a* moment today.  There is almost always (at least) one."

I'm no Pollyanna.  But I have noticed that when I intentionally look for one moment in the day to savor my kids, I almost always find it.

Sometimes that's smelling my baby's head as I nurse her to sleep at night, allowing myself to be in awe of her rosy little lips and 10 tiny fingers and how much she trusts me, as she relaxes into sleep.

Sometimes it's choosing to hug my four year old close as he tantrums, rather than getting exasperated.  Choosing to notice his passion and sense of justice, rather than his childishness, and to pray that those would be grown into mature characteristics that would bless others.

Sometimes it's just writing down the silly things my kids said this day, and laughing with Jon about how much toddlers really are like small drunks.   "Hey, look mom... trashcan!" ::dissolves into fit of laughter:: ::tips himself over into trashcan:: ::laughs even harder:: ::...then cries::

Some days it's easy.  And some days, you make it through and all you can say is, "we survived."  If that's been your day today, I'm pouring you a glass of wine, giving you a huge hug and raising the pom poms in my most ridiculous cheer possible to take your mind off your woes.  You've got this, Mama.  You're doing a good job, Dad.  You don't have to treasure every moment, or even every day.  Some days are just hard.

But most days, when we take the time to look for it, there is (at least) *a* moment that is sweet or silly or beautiful or just for you, that you grab hold of and truly savor.  And sometimes when you look for that one, you'll find another.  And sometimes another.  And before you know it, it'll snowball into a day that you will remember forever because of how deeply you enjoyed your little people.

Or sometimes that one taste of sweetness, reminding you how much you love these little crazies, is just enough to give you courage for the day (or night) ahead.

One moment at a time.

I'm Spider Born, Spider Bred... and intimidated by Spiders?

Ten years is a long time.

Not in the grand scope of things, but for my 32-years-young-life, it feels significant.

Ten years ago, I graduated from University of Richmond.  And this year, I will return to the campus again for my ten year reunion.  And I have to admit, I'm a little bit intimidated.

You see, Richmond, which oft calls itself the "Princeton of the South" (along with 7-8 other schools), is a climber school.  The vast majority of its alums have grandiose goals of the names they will make for themselves, the things they will accomplish and the places they will go.

I was (am?) cut from the same cloth.

I have a double degree in Political Science and Physics (nuclear focus), minored in Russian and Mathematics.  I wrote three theses, including participating in the inauguration of an honors thesis program (I did not sleep senior year).  I graduated with honors, awards and accolades and had every intention of changing the world by the time I was 35.  [So I still technically have 3 years.  Tick tock.]

But instead of going on to create a PhD program combining Political Science and Physics to mediate and make international nuclear policy, I left academia and went into campus ministry.  Instead of graduating to accept six figure employment, and a title of international prestige, I went on to fund-raise my own salary for five years, where my title was a conversation stopper.  And then I left ministry, and after two years of working in higher ed, became a full-time stay-at-home mom to our three young children.

By all measures, I haven't accomplished by I thought I would, or what the university promised that its graduates would, or what many of my fellow alumni have.  Most days, my use of my degrees is anecdotal at best - which bowl helps the oatmeal to cool faster, which length string makes for a more dangerous slingshot, "this is not a Zero Sum game, kids!", which path I should take to head off my renegade two year old, etc.  Although I do use conflict resolution skills daily, it is not to mete out policy, but rather to keep WWIII from breaking out between my children.

And maybe this is just me, but when I think about returning to the birthplace of my adult life, I feel like I should have accomplished more.  I worry that everyone is farther ahead than me.  That I have failed to live up to potential, wasted my talents, and rendered myself obsolete in the annuls of university history.  I fear the awkward pause, the silent judgment, or the bland "oh that's nice" - and I feel the desire to assert that what I have done has meaning, to "them" not just to me.

Those small talk-y conversations, that are bound to happen at reunion, where we try to define ourselves in five minutes - they scare the bejeezus out of me.

And yet, the reality is, I am not actually embarrassed by my accomplishments (or lack thereof).  I'm proud the person that I have become.  I wouldn't be where I am, or married to whom I am, or doing what I am, if I hadn't made the career choices that I did.  I love my little people and am glad I get to be present for their little days.  I enjoy the work that I do in my "free" time and am proud of my accomplishments there, even if it's not a huge business (yet).  Some days, my lack of prestige or so called "accomplishment" bothers me, but most days, it doesn't.  I am content in my life, until I am try to compare myself to my "peers."

So what do I say when I go back for my reunion?

Do I go with pretentious?  "Well, I worked at Harvard Business School for a few years, and then I started my own company." (True, but glorified).

How about self-deprecating?  "I'm just a stay-at-home mom.  Nothing exciting."

Maybe holier than thou?  "I chose to put aside pursuing a prestigious career in order to really care for other people, through ministry, and now I serve people 24-7 in the toughest job in the world."

How about posturing? "My career is on hold for now, but I'm looking to return to graduate school in a few years once the kids are in school.  I'm hoping to continue to develop my experience in X in the meantime, so that I will be set-up well."

How about tongue in cheek? "I've been making copious amounts of humans and somehow miraculously keeping them alive.  I'm thinking of writing a book about all the silly things they say and all the weird conversations I've had about poop."

I have a hunch that I'm not the only person who is trying to figure out how to present themselves, for respect from their ten-years-ago peers.  But I also have a hunch that reunion will be a lot more fun all around (also funnier) if we cut the BS [husband said I should edit what I originally had] and just be unashamedly ourselves, whether or not that's impressive.

What we liked about each other then wasn't our accomplishments or our fame.  We were miserable then too, when we tried to compare ourselves to one another, or out-study one another in #ClubBoatwright.  Remember?

My best memories, my favorite times, were those hilarious sleep-deprived chair races through Gottwald, or botched water balloon launches, or raw moments of honesty where I got to know a stranger as a friend, laughter that put us in stitches, or dinners that we shared together after the research/homework/class was done.

It never was about accomplishment - I don't know why I'm tempted to make it about that now.

Maybe I'll just be honest:  "I'm not where I thought I would be, but I'm happy."

Just me?