Two-Part Invention

Today I cried at the playground.

Moms don’t have a lot of space for tears, and so they break their way through – unexpected, at undesirable times. I stand there, with Sage firming resting in the wrap at my hip, kids playing all around, mom’s chatting casually on the other side of the slide. And I turn another page.

It seems that I have cried with each page of this book. The more I get into it the harder it is to fight back the tears. You’d think I’d give up reading it, but these aren’t bad tears and somehow this book is woven from the fabric of my very being. I can’t stop.

I see in the writing my own hopes and dreams. My own tendencies and loves,

“The thought that I must, that I ought to write, never leaves me for an instant.” And I add: Nor me.

And I add: Nor me.

I read:

“I was struggling to write, to keep house, help in the store, be a good mother, and yet improve my skills as a storyteller. And that decade was one of rejection slips. I would mutter as I cleaned house, ‘Emily Bronte didn’t have to run the vacuum cleaner. Jane Austin didn’t do the cooking.’… In my journal I wrote: ‘There is a gap in understanding between me and my friends and acquaintances. I can’t quite understand a life without books and study and music and pictures and a driving passion. And they, on the other hand, can’t understand why I have to write, why I am a writer.”

And again flip the pages back to the first page I earmarked in the book:

“We do not know and cannot tell when the spirit is with us. Great talent or small, it makes no difference. We are caught within our own skins, our own sensibilities; we never know if our technique has been adequate to the vision. Without doubt this is true of my own work, too. I never know, when I have finished a book, how much of what has been in my mind and heart has come through my fingers and onto the page. This inability truly to assess one’s own accomplishment is what makes rejections so bitter. When I was receiving rejections from publisher after publisher, I wondered sadly if the book I had conceived in my mind had failed utterly in getting onto the page. This lack of knowing makes the artist terribly vulnerable. When I hand in a manuscript to agent or editor I am filled with anxiety until I hear: Yes, the book is there. It needs work, but it is there.”

And I think of my first attempt at a novel, which I only just days ago sent off to friends for editing.

So much of the life I want to lead is portrayed in these pages.

But so much also of the life I feel creeping up on me and hope never to be mine.

The struggle to write and become a writer are interwoven with the story of her marriage and ultimately the story of her husbands cancer. My own fears swell up as I turn the page.

I read:

“I need a God who is with us always, everywhere, in the deepest depths as well as the highest heights. It is when things go wrong, when the good things do not happen, when our prayers seem to have been lost, that God is most present. We do not need the sheltering wings when things go smoothly. We are closest to God in the darkness, stumbling along blindly.”

As I read this book I feel it. It lodges itself deep in my heart on so many levels. It is as if it was written for me and as if it was written for me at such a time as this.

I’ve been drawn to Madeleine L’Engle’s Two-Part Invention for years. I remember as quite a young woman seeing it on my parent’s shelf and wanting to read it. And yet, somehow, I never did. I must have picked it up to read a dozen times and yet as much as I wanted to read it, as much as I knew that I should read it and would one day read it, I also knew that it wasn’t time yet.

After Sage was born, when we were packing to move up to Seattle, our boxes were stuffed full and yet somehow I managed to squeeze it in – stollen off my parent’s book shelf.

When we moved into our apartment in the small town of Bothell, just north and east of the sprawling metropolis that is Seattle, I carefully looked at each book and then promptly packed almost all of them back up in boxes to store in our small attached storage. I didn’t pack Two-Part Invention back up. It was one of only about a dozen books that have sat on my shelves over the past year, and yet despite that I have never picked it up to read, until this week.

I feel almost as if it audibly called out to me. “Read me. Read me. Now.” It whispered.

And so I did. And it feels serendipitous to have picked up this book at this time and not before.

If I had read it when I was younger, I do not believe that it would have been anything more to me than a touching story book and a good book. If I had read it last year in the midst of Bryan’s melanoma diagnosis I do not think I would have been able to finish. It would have hit too close to home.

But, now, at this season, when my heart is still largely filled with thoughts of cancer and what that terrible foe might hold for us in the future, and when I am more firm in my identity as a writer than I have ever been before, this book comes as a God send. One of those rare books that I know I will look back on as formative, even life changing.

I turn another page:

“Prayer. What about prayer? A friend wrote to me in genuine concern about Hugh, saying that she didn’t understand much about intercessory prayer. I don’t, either. Perhaps the greatest saints do. Most of us don’t, and that is all right. We don’t have to understand to know that prayer is love, and love is never wasted.
Ellis Peters, in A Morbid Taste for Bones, one of her delightful medieval whodunits, gives a beautiful descriptions of what I believe to be intercessory prayer: ‘He prayed as he breathed, forming no words and making no specific requests, only holding in his heart, like broken birds in cupped hands, all those people who were in stress or grief.’
And George MacDonald asks, ‘And why should the good of anyone depend on the prayer of another? I can only reply, Why should my love be powerless to help another?’
I do not believe that our love is powerless, though I am less and less specific in my prayers, simply holding out to God those for whom I am praying.

What happens to all those prayers when not only are they not ‘answered’ but things get far worse than anyone ever anticipated? What about prayer?

Surely the prayers have sustained me, are sustaining me. Perhaps there will be unexpected answers to these prayers, answers I may not even be aware of for years. But they are not wasted. They are not lost. I do not know where they have gone, but I believe that God holds them, hand outstretched to receive them like precious pearls.”

And I cry.

Each tear drop a separate prayer escaping up to heaven.

A prayer without words, a prayer deeper than words.

I cry for my friends, Jane and Martin, fighting cancer far across the ocean. I cry for friends whose aching wombs have lost babies. I cry for friends who are struggling with job loss and financial crisis. I cry for my daughter, Sage, who may never walk or talk. I cry for myself for the threatening loss I fear. I cry for Madeleine and the battle her husband, Hugh, fought with cancer all those many years ago.

 

And tears become prayers. And the prayers echo.

 

And I turn back a few pages:

 

“I do not want ever to be indifferent to the joys and beauties of this life. For through these, as through pain, we are enabled to see purpose in randomness, pattern in chaos. We do not have to understand in order to believe that behind the mystery and the fascination there is love.
In the midst of what we are going through this summer I have to hold on to this, to return to the eternal questions without demanding an answer. The questions worth asking are not answerable. Could we be fascinated by a Maker who was completely explained and understood? The mystery is tremendous, and the fascination that keeps me returning to the questions affirms that they are worth asking, and that any God worth believing in is the God not only of the immensities of the galaxies I rejoice in at night when I walk the dogs, but also the God of love who cares about sufferings of us human brings and is here, with us, for us, in our pain and in our joy.”

 

Rejoicing in the journey,
Bethany Stedman

If you'd like to help with medical bills or the other expenses related to Bryan's cancer or Sage's special needs click here. Thank you! We are forever so grateful to so many who have gotten us this far and continue to carry us forward. Grace and peace.

Advent: Waiting for God to Step In

A  week ago cancer came knocking again.

For the past couple months we’ve been able to live our lives and sort of ignore the whole melanoma thing. In my mind I thought it’d be something we’d deal with every four months when Bryan had his follow up checks, but other than that we could just go back to normal life. Or at least our “new normal”. But, last week I was struck with a stark reminder that cancer will never be out of the picture. For us normal will always involve melanoma. For us normal will always include that feeling of looking over our shoulders, and waiting for the ax to fall.

Last weekend my friend Jane wrote a blog post I can’t quite get out of my mind. Jane is a dear friend from Prague and her husband is currently going through chemotherapy for leukemia. In a small way we are in similar boats, but in big ways she faces a day-in-day-out reality that I can only imagine. She wrote this and I can’t stop thinking about it:

“I think I would have said a bit ago that we were ‘getting used to it (cancer)’. In my mind, that was acceptance. But now I disagree with myself. ‘Getting used to it’ could be avoiding it, minimizing it, forgetting it, hoping it would die without attention….like all the herbs I planted in May.
Tonight, acceptance means to me holding the truth in my hands, looking at it, feeling the weight of it, talking about it to God using nice and not so nice words, and trying to reach the place of honestly being able to say that with whatever circumstance I am holding, ‘ It is well with my soul’.”

I’m trying to come to that place where I can accept, where I can hold out my hands and accept whatever God chooses to put there. But, I think I have been trying to accept melanoma in my own strength, by taking my expectations into my own hands. I’ll explain, but let me start by sharing what happened this week and what led to these thoughts.

As part of the MSLT2 trial Bryan was accepted into he has to have regular ultrasounds of his lymph nodes. He had his first one on November 30th. They found that one of his lymph nodes is enlarged and did a biopsy to see if it was more melanoma. The day they did it they told us we should have the results by the following Tuesday. On Thursday they called and told us that they underestimated the time and we won’t hear anything till Friday. On Friday they called and said they needed to do some more tests on the sample and wouldn’t have an answer for us till next week.

It’s been a long week. The not knowing. The wondering. The fear. And it looks like we have longer to go in the unknown, waiting period.

In some ways I feel like my whole life has turned into a waiting period. The truth is as much as I want to stay positive, as much as I hope and pray for 50+ more years with Bryan, ever since the melanoma diagnosis I feel like I’m just waiting for the ax to fall.

Right now he’s doing well, right now our action steps are minimal, but for how long? I’ve read the statistics, I know his staging, I know that chances are good that we aren’t done with this yet. So, the question has been when? When will the ax fall? One year, five years, twenty years? Or this week?

I hate thinking that way. Living that way. But, I can’t seem to shake this foreboding feeling of waiting for something terrible to happen.

As I write this I start to think about Advent. In some ways I find myself in a season similar to that which we all find ourselves in at advent, a season of waiting for an arrival, a season of waiting in the desert, a season of waiting for a Messiah. And yet it strikes me that my waiting is completely opposite from the waiting of advent.

In advent we wait and expect the good. But as I wait, I often find myself expecting the worst.

Why is that? Why is it so hard for me to anticipate and expect good to come? Why do I spend more time worrying about and expecting potentially negative outcomes than I spend expecting God to step in and show up?

Isn’t that really what Advent is about? God stepping in and showing up?

Truth be told though, that’s not what I expect, it’s not what I anticipate, it’s not what I look for and wait on. Don’t get me wrong, I do expect God to be with us, to walk with us through whatever comes. And I do expect that whatever comes, in the end God will work it for good. But, I don’t expect God to, in power, step into my reality and alter it and make it good – not just FOR my good, but good. What would it look like to expect that?

Honestly, when I think about it I feel like it would be delusional and irrational and unrealistic for me to expect that kind of good, to expect God to step in. But, maybe that’s sort of what God asks for us in our seasons of waiting, in our seasons of Advent…?

I mean it probably wasn’t rational or realistic for the Israelites to believe and expect and trust God to step in and provide for them in the desert. And God knows that they didn’t always do a good job at overcoming their own expectations for negative outcomes. But, continually God seems to call them to just that.

And then he promises them a good land, a land flowing with milk and honey, but… a land already inhabited. He asks them again to expect and anticipate the best, the good, against completely unlikely and unrealistic odds.

Isn’t the same sort of true when it came to their waiting for a Messiah? The things God told them about the coming messiah, where not exactly all realistic.

God hasn’t stepped in and told me what to expect, told me it’s all gonna be ok, told me we are gonna live in a land flowing with milk and honey, told me Bryan’s gonna be ok. But, I’m starting to think perhaps that’s more along the lines of what he wants me to expect.

I know that my negative expectations and worry are clearly not good for my heart, soul, or body. But, I think I fear letting go of my negative expectations, because somehow I think by expecting the worst I’m preparing for the worst. But, perhaps expecting the worst isn’t really the best kind of preparation. I believe that by setting low expectations I’m protecting myself. But, perhaps it’s not my job to protect myself.

Here’s where it all ties back to the acceptance I talked about at the beginning… Sometimes I think I’m trying to work my way to acceptance of whatever comes by expecting the worst. If I can expect, picture, anticipate and accept the worst than I am accepting the situation. But, perhaps that’s not really accepting whatever comes. Perhaps that’s not really what God wants from us when desiring our acceptance. I’m beginning to think that acceptance doesn’t mean sealing our fists against the worst, nor does it mean grabbing hold of the worst, obsessing over it and saying, “I will accept this! I will! I will!”. No, acceptance is opening our hands to whatever comes, truly whatever.

I think it comes down to this, do I trust God enough to open my hands?

Do I trust God enough to let go of my worrying, let go of my projected outcomes, let go of my fear, let go of my negative expectations?

Can I trust him to protect me?

Can I trust him to prepare me for whatever comes?

Can I trust him to step out in power and come into my situation, to come and make whatever comes good?

Can I turn my advent of waiting for the terrible to come into an advent of peacefully anticipating the good? Can I leave my future, Bryan’s future, our future, in God’s hands and simply live and love in the now?

These are the thoughts I’m grappling with as we wait to hear if melanoma is back at our doorstep or not.

Rejoicing in the journey,
Bethany Stedman

If you'd like to help with medical bills or the other expenses related to Bryan's cancer or Sage's special needs click here. Thank you! We are forever so grateful to so many who have gotten us this far and continue to carry us forward. Grace and peace.

And Life Moves Forward

It’s been a long time since I’ve written here. I used to think that writing was how I processed things, but I’ve realized recently that writing is a later step in my process of processing. I don’t write when things are too big, too deep, too raw. I don’t write when I’m depressed. I do process in writing, but not when I’m in the middle of darker days.

I think the hardest thing about sitting down to write after a period of silence is where to begin. How do I start to write about all that has been going on. I want to write about it all, I want to document it, I want to share it, but well, where to start after such a long silence?

People keep asking us how we are doing. They ask for an update on Bryan’s melanoma, they ask how Sage is doing, they ask how work is. And I don’t know how to answer. Because, these big things we’ve been dealing with – cancer, polymicrogyria, the continuous ups and downs of self-employment – these things haven’t gone away, but they aren’t the big overbearing things they were at the beginning of the summer (well, they are still big and overbearing, but it’s different) they have just become part of our lives now.

I remember a friend, who’s husband was diagnosed with lukemia just before we found out about Bryan, talking about how they came to a point where cancer, and all that went along with it, was just their new normal. I feel like that a little.

Bryan was recently accepted into the non-surgical arm of a study we applied for. So, for the time being there will be no more surgeries. We have decided to treat his melanoma more naturally, so that means that for the time being there won’t be drugs that make him feel miserable. There will be lots of supplements and vitamins, lots of acupuncture and body work, lots of healthy food and probably juicing. There will be lots of regular oncologist appointments for observation. And there may be other therapies down the line.

Life will never be “normal” again – at least not in the way it used to be. I don’t think there will ever be a day when I don’t think about melanoma and feel fear – I know the statistics, I know that even if we did get all the melanoma with his first surgery it’s likely to come back and come back on an organ. I live with that knowledge every day. Because of that life with never be normal again. But, in some ways we are entering a new normal.

There is not a day that passes by that I don’t feel fear, but there is also not a day that passes by that I don’t feel hope also. Life is moving forward and I cannot live in fear. We are helping Bryan’s body to be as holistically healthy as it possibly can be in every way we can and I cannot live in fear. I may fight with fear everyday, but I don’t deal everyday with the nitty-gritty realities of cancer. Most of my day is spent in other things and other thoughts. Life moves forward.

In some ways the same could be true of Sage and her challenges. Microcephaly, polymicrogyria, occupational therapy, these are my new normal. They are still big deals, I still struggle with fear over them almost daily, but life also moves forward. We are settling into these new realities about our daughter. They are still difficult but they are not consuming our minute-by-minute thoughts.

As life moved forward and a new normal settled over us, I have to admit that a depression and numbness also settled on us. The past month or two has been heavy not because there was some big new heavy thing or some update with the big things we already faced, but because there wasn’t. Our new reality was that these things weren’t going to just go away, we couldn’t just treat these things and be done with them. These were going to be our reality from now on. We found ourselves in the middle of a new normal that we didn’t know how to live into. We still don’t. But, we are slowly stumbling through to find our way. And the we are slowly defrosting and and beginning to breath again.

We are slowly trying to learn what our days and weeks will look like now. We are slowly trying to learn how to dream again. And life moves forward.

Rejoicing in the journey,
Bethany Stedman

If you'd like to help with medical bills or the other expenses related to Bryan's cancer or Sage's special needs click here. Thank you! We are forever so grateful to so many who have gotten us this far and continue to carry us forward. Grace and peace.

Carpe the hell out of this Diem

If you can’t tell from the past few blogs, or from the sparseness of my writing of late (I always write less when life gets complicated), life has been complicated lately.

A few weeks ago my husband had surgery to amputate the top half of his thumb and two lymph nodes removed for biopsy. Since pretty soon after his diagnosis with melanoma we have been anticipating this surgery and in many ways I think we both felt that if we could get past the surgery then everything would be fine and we could put melanoma behind us, knowing that we will just have to be on the look out for recurrence. We never really let ourselves talk or even think much about the possibility that the biopsy results wouldn’t be good.

And then we got the call from pathology. The cancer had spread in small amounts to his lymph nodes.

Suddenly we are facing the options of another surgery, this one much more extensive and invasive, with potential lifelong consequences. We talked with the oncologist this week about drug options, which honestly sound miserable. They aren’t talking chemo, but these drugs have pretty nasty side effects and seem not so far off from chemo. In some ways I think I would feel better about chemo – I know people who have gone through chemo and gone on to have long healthy lives afterwards, but these drugs don’t seem to effect life expectancy that much, or at all. One of them is still in trials. Honestly, they don’t seem all that reassuring.

In the next few weeks we’ll see another melanoma specialist and then someone from Bastyr University as well. Hopefully they will have some other options or at least some more information.

To be honest the past week has been really hard for me. The oncologist appointment was discouraging for me. I started doing some research that filled my head with numbers and statistics which I wish I didn’t know. And twice this week I had what can only be described as premonitions or visions, which were less than encouraging.

When I’m honest I’m scared.

But, Bryan keeps reminding me that decisions made from fear aren’t good decisions. Fear may be a good motivator, but it doesn’t motivate in very healthy directions.

Slowly this week I started to realize anew that I can’t live in the constant fear and anticipation of a negative future. That’s no way to live. I don’t want to live that way. My life does have a lot of unknowns right now, and a lot of those unknowns scare me. But, I don’t want that fear to paralyze me, to motivate me into unhealthy decisions, or to taint and darken the beauty that is each day of my present life.

Yesterday I got to talk to my dad. He always has such a calming influence on me. He reminded me that we actually get to have a really unique perspective, while most people our age are nose to the grind, and perhaps not valuing their daily life as they should, we have a unique perspective where we don’t know what the future holds and so we get to celebrate each day as it comes. He reminded me to fully live every moment, to embrace where we are right now, enjoying today instead of fearing tomorrow.

That’s how I want to live. I want to live grateful for each day I have with my wonderful husband instead of fearing that our time together migt be cut short. I want to live grateful for my beautiful daughter instead of fearing what disabilities she may have because of the abnormalities in her brain. I want to live grateful for the wonderful, creative, projects in design, development and programming work that Bryan has right now instead of fearing that he might not have enough projects to pay the bills in few weeks or months or years. I want to live grateful that God walks with us in the now and grateful that he will continue to walk with us as each tomorrow becomes a now.

I am grateful that each day comes at us one at a time and the only day I’m ever asked to live is this one.

So, that’s what I’m going to do. Carpe the hell out of this diem!

Rejoicing in the journey,

Bethany Stedman

If you'd like to help with medical bills or the other expenses related to Bryan's cancer or Sage's special needs click here. Thank you! We are forever so grateful to so many who have gotten us this far and continue to carry us forward. Grace and peace.