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).