Happy 6 years to me!

Yesterday it was 6 years.  I let the tears flow as I trekked up an ice filled path on a solo hike.  I was listening to When Breath Becomes Air,  which is the memoir of the life of a neurosurgeon who died of lung cancer.   Listening to the book wasn’t intentionally planned on the anniversary of my entrance into the world of brain cancer, but I was grateful for the opportunity to feel deeply as I was forced to face my own mortality again.  The tears flowed for so many reasons.  

They flowed because I was so darn grateful for a body that has been through so much and can climb to to the top of a 3,400 ft.  peak in the middle of winter, alone.  I am grateful because I have had the last 6 years to live and so many people are not afforded that luxury.  I am grateful because my children were surprised that I could climb so high and that I was strong enough to complete the hike.  I was grateful because the trail was pure hell.  It was a sheet of ice, frozen mountain run off.  I had to break all of the rules of hiking.  I had to walk off of the path most of the time.  I used trees for supports.  I should have had crampons but I didn’t.  I didn’t even pack any water.  Despite the cold, despite the terrible path, I just kept going.  There were many times that I considered turning around.  It wasn’t a loop trail and there wasn’t anyone else on the path so no one would know the difference, but I wanted to see the view from the top.  I wanted to prove to myself that I was still alive. And so I kept going. 

It still feels surreal when I think back to those days, weeks, months, even years.  I have very few memories of the day my brain exploded.  I only remember  being in the ICU behind a glass wall at PENN wondering why I was there, thinking that those rooms were for sick people.  I remember the endless shots of heparin in my abdomen and I remember being completely surrounded by people that loved me every single second of the journey.  

I lived in a strange cloud of confusion for a very long time.  My brother shares that an area conference minister came to visit me.  I had never met him before, but when he showed up I sat up straight in my hospital bed and entered into ministry mode, greeting him with all of the formalities of my office.  It makes me laugh to think about it, but it reminds me of how deeply our identities are embedded in our souls.  How deeply my desire to serve my Lord is etched in my unconsciousness. 

To be in a posture of receiving was a foreign state for me.  To have no forum, no study, no authority, no ability to manage or organize.  It was all an uphill climb for me.  I was in unfamiliar territory, humbled, grasping for Paul and holding him tightly as my only sure thing.  I still cling to him.  He is my rooted oak, my steady guide.  

Oddly, Jesus was not the rooted oak I clung to.  No, instead, God was an omnipresence of solidarity.  God was the knowledge of love, the solid rock, the surety that I was never alone.  

God’s promises all came true for me.  Everything I had said, everything I had sung, everything I had preached was true in those dark days when I had to take an electric scooter through Target because I simply could not stand.  God’s people showered me, I mean drenched me in love.  I was covered in posters and cards and casseroles and childcare and prayer.  There was so much prayer all across the entire globe.  God made sure I was covered every single second and I felt all.  It was the biggest warmest blanket of community and care and hope that I never knew existed.   

I have come to learn that self sufficiency is my love language.  If you want to show me you love me, show me you can take care of things.  It’s a terrible mantra, but it is how I have survived. 

And so I learned to shower again, to cook again, to put words in order in sentences.  I wanted to graduate quickly from PT and OT.  My striving and my incessant desire to succeed served me well in recovery.  If anything, I was disheartened that I wasn’t one of the cancer patients that ran a marathon during chemo.  Yup, that’s how my thought process works.  I wanted to win at chemo workouts.  It’s a lot, but it’s true.  

After 6 years of clean scans, my mind is quiet more frequently than in the beginning, but I still find myself (as in just yesterday), googling life expectancy for a stage three malignant brain tumor patients.  There are never answers and the googling just invokes anxiety, but it is part of the journey, wanting to know how much future you’ll get, as if any of us have any guarantee for tomorrow.  

I often think that I am no different than anyone else.  We are all going to die and there are things that kill a bit of each of us every day.  I simply have a hatch in my skull for repeat craniotomies which brings the subject of death to my mind more frequently than the average person, or at least I think it does.  

I would be lying if I didn’t second guess every odd pulse in my left arm and fear that it is a seizure.  I  would be a fool if I denied that my frequent short term memory loss incidents don’t terrify me.  (I lost my keys in March inside the house. I still haven’t found them).  

I am still learning.  I am still learning that this impacts my whole family.  My children were terrified when Covid arrived because they heard that those with cancer were high risk.  My son was afraid to see anyone because he thought he could be the reason I would pass away.  I had a cold in October and joked that I would die.  Both of my beloveds froze in panic and fear, as if the unspoken weight that they carried every day was just unveiled by my joking.  

I thought I was the only one carrying the burden.  

I was wrong.  

We carry our burdens together. 

If that isn't the gospel, I don't know what is. 

And so I have made a commitment to myself and to my God and to those around me that I will keep going.  I will keep taking every step I can take, no matter what the weather.  Some steps will be hard and I will slip and fall, but I won’t give up.  

I won’t give up because there is joy to be had, even in the painful days.  I’ve been accused of being a joy junkie.  I love joy.  I really truly want everyone to sing kumbaya every day and dance in a circle and share their favorite Bible verses (this is in my dream land where everyone has a favorite Bible verse).  I want everyone to join me in the party that I feel so privileged to throw every single day. I want everyone to dance in the kitchen to Silly Songs with Larry.   I want everyone to feel that even if they are behind the locked glass doors of the ICU of not knowing what’s going on in your body or your life or you heart that there is a life on the other side of the pain and confusion and that even if it is hard, even if it is often hard, it doesn’t mean it isn’t good.  

And so in a cathartic and emotional moment, I climbed a mountain on a trail covered in ice and cried about the death of someone else because it reminded me of my own strength and my own journey and that there is a view waiting that is worth the effort.  

Happy 6 years to me.  

Maundy Thursday

We baked our own bread today for our Maundy Thursday table service.  This has never happened before.  When the kids were little I dreaded baking with them because it always turned into a screaming match of who got to pour or hold or stir.  Still to this day the kids bicker over who gets to use the stand mixer and who uses the hand mixer.  Seriously children, we own TWO mixers.  That itself is a reason for joy and gratitude.  I guess that will come later in life.  

Luckily this bread recipe didn't require ANY mixers.  And when I realized at noon that we were supposed to make our bread and I checked the recipe I had set aside and realized it required the dough to rise overnight, a quick google search resulted in this fantastic afternoon recipe that would be the answer to my lack of preparation.  

By God's grace we had enough supplies for each child to make his/her own loaf of bread and in just a few short hours, voila! we had two beautiful loaves fit to be broken at the table of the Lord.

Easter Saturday

I’m trying to hold the passion story in one hand and the Easter story in the other and it feels really hard today.  It’s honestly probably what you are supposed to do on Holy Saturday.  The sting of the cross is still so real.  The texts of beatings and nails and blood still sting.  The pain of the world is so present and so heavy in my chest.  

In my oh so human attempts to keep this story as our primary story in this season, we sat at the table with our brightly colored plastic Resurrection eggs and read stories of horror.  I wanted the kids to work on their Bible skills so I bribed them with a Hershey’s kiss for each verse they found on their own without using the index or getting some help from me. Candy and plastic and miniature whips and nails.  I’m trying to hold the passion in one hand and Easter in the other and it feels really hard.

We opened the crescent rolls and got out the marshmallows and I remembered the days of leading dozens of preschoolers through the activity of Resurrection rolls.  We wrapped up the marshmallows in the dough and I kept thinking about incomplete metaphors and how no children’s activity could ever fully teach the feeling of sacrificial love.  

But I pressed on so that they know the story.  So that they have it in their tool box, in their well for the days when they are without hope.  For the days when Friday is all too real and Sunday feels as though it will never come.  

And we wrapped it all up and covered it with butter and cinnamon sugar as if anointing and embalming were ordinary activities.  I hope someday they ask why.  Why did we do all of these endless crafts and activities and why did we wrap marshmallows covered in butter and cinnamon and bake them on the day before Easter?  I hope they ask why.  

And then, just like always, the last egg in the set is empty and the band of dough no longer holds a marshmallow and we celebrate for one small minute that there is hope, that the promise is still true, that he is not there as they thought and that Jesus is never as we expect him to be. 

As I clean off the counters again I am struck by the “He is Risen” Dollar Store wooden sign set up against a brightly colored Easter egg candle.  I’m trying to hold the passion in one hand and Easter in the other and it feels really hard. 

Especially in these days.  Here we are all snug in our home, working on our own laptops in our own separate rooms.  We are healthy and safe and our biggest worries are when the ice cream runs out or we can’t agree on a movie to watch.  And outside of these walls the whole world is falling apart.  

I force myself to watch the news twice a day.  Twice is all I can handle.  Every time they go through the roll call of the healthy twenty somethings who have died in under a week or they mention the infant who passed away or they show the pictures of the doctors and nurses and elderly who are all doing their very best in the face of tragedy and death and trauma.  Every time I see these things and hear these things I am wrecked again by the pain of the world.  Twice a day is all I can handle.  When they mention makeshift morgues and mass graves and people dying alone in their New York City apartments, having to be carried down five flights of stairs after they are found.  Twice a day is all I can handle.  

It feels like it’s all the cross.  It feels like it’s only whipping and flogging and betrayal and thorns.   It feels like Sunday will never come.  

And so I try to remind myself that these are the reasons I pull out these plastic eggs and these are the reasons I keep baking crescent rolls wrapped around marshmallows.  Because our children need to hear the stories of hope.  They need to know that in their darkest moments, in the moments when they feel forsaken and forgotten and betrayed that there is a God who will rise for them.  There is a God who will rescue them and restore them and seek them at all costs.  And I hope and I pray that by telling them these stories again and again that someday, by the power of Jesus that they will claim this as their story and know that the empty egg, the empty roll, the empty tomb, the promise of life, full and beautiful and wonderful life is for them.  

New Years 2020

We were so lucky to spend New Year's Eve with our great friends the Yeslionis Family.  It's been almost 13 years of ringing in new years together.  We love to share stories of when the kids were babies and we pretended it was midnight at 9 AM and then put them all to bed!!  Now they stay up far past us and we had to yell down to the dads and kids to stop yelling at ping pong at 2:30 am!  I am so grateful for friends that are easy to be around.... friends that you don't have to explain yourself to and friends that just understand.   

I hope and I pray that this is a year that we accept where we are, love who is in our path and seek ways to be peaceful and connected to our world.  

Christmas 2019

19 is definitely too many pictures for a blog post, but how can you capture all of the preparation and joy and peace that happens in the Christmas season?

Things have been so calm, perhaps a little too calm for me!  It's a good calm.  It's a calm of being thoughtful and praying and resisting the temptation to buy more or be more.  I truly had to resist this urge this year and took solace in friend who reminded me that when I think I need more that Jesus is enough.

The kids thoughtfully picked gifts for each other and lovingly wrapped them.  They baked cookies and built gingerbread houses and lit the advent candles. (Yes, they did it all by themselves which if I was still a momma of littles would give me all of the hope for a life without tantrums and hyper vigilant supervision.)

 It was all so beautiful.  

On Christmas morning I was a little sad because there was no WOW or over the top excitement.  And now a week later, I am sure that feeling is what I actually wanted.  I actually wanted a feeling of contentment, of knowing that we have enough and God is good and we are surrounded by so much love that we need not look anywhere else for our joy. 

Both kids gave me relational gifts which made me so happy.  Maeve gave me a calendar of things we can do together and Noah gave me a mug he made at school and gift certificates to go running together.  

And so, as I begin the process of taking down the decorations,  I can feel so keenly that my cup overflows and I am so grateful.  

Our names of Jesus Advent Calendar.  Candy Cane the elf made a few appearances in the devotion and Maeve's favorite name was Bread of Heaven (Go Figure)

Maeve got first chair in the Christmas concert!

All decorated

Candy Cane gave the ugly doll a haircut

Still waiting!

My favorite cookies.  People and angels all mismatched and broken.  Cookies of true humanity!

Christmas Eve Worship

Slankets!

The kids got ukuleles (and Paul is learning too!)

Christmas morning.  The light of Christ shines!

I haven't written anything in ages and I miss it.  The kids told me that when they are on school laptops and they google their own names that my blog posts come up and they love to read the stories of our family.  Looking back on a Christmas Eve years ago made my heart so happy and I realized that I should at least try to keep our day to day stories alive.

So here we find ourselves in Advent 2019.  It feels appropriate to begin again in Advent.  It has been such a beautiful season of preparation here.  We have so enjoyed decorating together and hanging the tree and welcoming our elf and lighting the candles each night.  My heart is so warm with joy, a deep, abiding joy and I am so grateful.

The Children's Christmas musical at church was  "Wise Guys and Starry Skies."  Maeve was a baker.  The musical was so moving.  One young boy sang a song, "My gift is me," and I was moved to tears.  The ending line said, "May our hearts be Christ's throne."

Making Gingerbread Houses

Our Advent Devotions this year are from Sweet Melee and they involve reading another name of Jesus every day and learning about the name.  The kids wanted "I am" to come first because then they could make sentences.  Maeve's favorite name is Bread of Life.  And of course, one day, the elf took the place of The Word on the chain of names.  

Looking Back, Looking Forward

I stumbled across my old blog posts and it caused me to pause and reflect on where I am on this journey.

This December will be five years since they found a tumor in my brain. After the surgery, chemo and radiation, I have had  five years of clean scans, healthy living and waking up each day to greet my beautiful children and watch the sun rise through my bedroom windows.

I still go for scans every six months and they are still nerve-racking, for sure.  But every time I enter the doctor's office she gives me a clean bill of health.  Often, I don't feel like I can trust her, wondering if she is hiding something or sugar coating things.  And then, I remember that she regularly has to give out the worst news that anyone can possibly hear and that I need to trust her incredible expertise and allow myself to hear the good news that I am still not in any danger.


And every time, Paul and I drive home hand in hand, grateful for the good news.