This Is Where We Are

These days have been about realizing anew my limitations,
recognizing again my overwhelming need for help,
grieving and letting go of expectations. 

There are certain common landmarks in the cancer journey. We past some of them a long while ago. But this week we past a new landmark, one we’d hoped we wouldn’t pass at all. 

This week we had to admit that Bryan can’t keep working. 

His pain is excruciating and getting worse all the time. He’s on some pretty heavy pain meds around the clock now and even that isn’t really relieving the pain. Between the pain itself and the medications for the pain it’s hard for him to hold a conversation or stay focused for more than a few minutes.

It was hard for Bryan to admit and recognize that he needed to stop working, but his company has been incredible about it. They agreed to hold his position and continue paying his insurance until the beginning of December. They basically met the FMLA requirements despite the fact that they didn’t need to as a small company. We are so thankful. 

But this is a new threshold we’ve now stepped across and the way in front of us is vague and unclear. 

I also had to admit and recognize something of my own this week. I can’t keep going the way I have the past few months.

The responsibilities on my shoulders are more than I can carry alone. Bryan needs more from me than I’ve been able to give lately. I’ve tried balancing Sage’s care, and parenting and schooling Thad, with still caring for Bryan and it’s too much. I can’t do it well without way more help than I’ve ever had or asked for. 

I’m so grateful for the help I have been gifted this past month during the worst of it. But I have to face the fact that Bryan’s not getting better right now, he’s only getting worse. I have to concede and admit I can’t balance all of this anymore. Something needs to give. 

And the first thing that needs to give is homeschooling.

I had hoped we would last longer than a month. There are things I really like about the online program we have been using. I feel like we are only just starting to figure it out and I am just starting to catch glimpses of how it could really work. But right now, at this season, with Bryan where he’s at, it’s not working. 

I followed the pull to homeschool and now I need to follow the pull to stop. 

It feels an awful lot like failure, but I’m trying to remind myself that honesty and vulnerability aren’t failure. I’m trying to remind myself that something being right for a time, even just a short time, and not right for another season doesn’t mean failure, it just means change. Change isn’t failure. It’s just the way of life. 

I don’t doubt the pull that led me to homeschool a month ago. And when I’m truly still and quiet, when I’m not thinking about what other people might think, I don’t doubt the pull that’s leading me away from it now. 

That doesn’t stop shame and guilt and comparison from rising up, but those are common companions for me and I’m slowly learning how to quiet them. 

When you walk a road you don’t want to walk there are these moments of acceptance when everything becomes clear and sharp and honest. They aren’t easy moments. 

It’s like when your driving along in the fog and the fog clears just enough for you to catch a glimpse of a road sign. It takes a bit to adjust, you’re not on the road you thought you were on or the one you wanted to be on, but then you say, “Ok, this is where I am. How do I move forward from here?” 

This week has been a bit like that. A bit like saying, “Ok, this is where we are. It’s not where we thought or where we hoped, but the truth of it is we’re here. Now, how do we move forward from here?” 

Grace and peace,
Bethany

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.

Homeschooling and Recognizing again My Introversion

We’ve been homeschooling for a few weeks now and I’m still feeling my way through it, swinging between “this isn’t so bad” and “what the hell was I thinking” with the speed of a metronome. 

Yesterday was the first extended period of time I was without my kids for something other than a hospital stay in months…but it feels like years. 

I had forgotten how recharging those long stretches with them at school could be. For the first time in months I feel as if I can collect my thoughts. 

In many ways for me homeschooling has felt like a regression back to those long weary days of early motherhood, when your child clings to you every waking hour, when over-touched, over-needed, and over-exhausted you crawl to the end of the day.

There are sweet tender moments in this togetherness, but it is also draining in its excessiveness continuity. There is no break. There is no rest. The only alone time is found in a quick trip to the bathroom, which, more often than not, is interrupted. 

Maybe it’s just my kid. 

He has always been highly attached. He’s a “with” kid, who needs to be with someone at all times, and an external processor, who needs to hear the sound of his own voice. It’s a lot for this highly introverted mama. 

I need space and quiet and margins. And right now I have none. 

I have torn through the summer with zero awareness, very little internal processing, and only a minuscule amount of intentionality. This isn’t like me, but the noise and adrenaline and lack of space (or quiet) has served as a fairly decent coping mechanism for survival. If I don’t have the space or quiet to think, than I don’t have the space or capacity to really feel. So I’ve been walking around as a very functional robot, which has actually been a very effective way to function in the midst of Bryan’s cancer battle and the current life stresses that brings.  

I’m re-learning myself today, acknowledging again how I’m wired. I’m realizing again how much I need space and quiet in order to live and feel and create. But also noticing how in some ways I function “better” when moving quickly and under stress. I oddly drop less balls when I’m trying to juggle more. I get more done in less time and handle the logistics of my life much more efficiently when there are more things to handle. It seems backwards but somehow it’s true. My internal life, the essence of who I am and want to be suffers under pressure but my external life, and my ability to run a family and make sure everything gets done actually improves a bit somehow. 

For now I’m not sure what that means. In this season of life there isn’t much I can do to create more space and quiet for myself. And in this season it’s probably more important that fewer balls get dropped than it is for me to have a rich inner life of awareness and creativity. So for this season I am trying to embrace the busyness, the noise, the lack of alone time, the constant need of all three of the people currently in my care.

And when I am gifted a rare moment of quiet, like yesterday, using it to the best of my ability to process what I can, feel what I need, and create whatever desires to be created. 

Grace and peace,
Bethany 

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.

Taking a Hammer to a Damn

I wrote this a few weeks ago and never posted it. I wasn’t sure I would post it at all since it feels only half fleshed out, but I decided to share it today. Because half fleshed out thoughts are all I have right now, and because I’ve been thinking about the value of showing up even when incomplete and unfinished, even when raw and tender, even when you don’t know the outcome and can’t control the process. So, here are some thoughts I had recently, a small offering for now. 

I haven’t been writing lately. Not blogs. Not poems. Not stories. Not emails. Not even really long IG posts.  And it isn’t because the words haven’t come, it’s not entirely because the well is dry. It’s something else. Something rooted in my gut, wrapped in the pounding of my heart. It’s in the tightness of my breath and the clenched feeling in my chest. It’s a pressure. Anxious pressure. Grinding away and holding my words back… like a damn. 

And I can’t decide if the way out is to wait quietly still until the pressure builds enough to break out on its own or if I have to pick up a hammer and start pounding. Maybe I need to just walk away and maybe I need to fight. I don’t know. How long is too long to keep spinning your wheels never getting anywhere? How long is too long to write in the dark? How long is too long to put forth effort without reward, to write out lessons you always have to relearn, to put your heart on your sleeve for no one? 

I don’t know. 

I know there’s always been ebbs and flows. Seasons the words spring fresh from the well and rain down heavy on my hand, and seasons when I am dry and my words crack. I’ve learned to trust the process, strike when the iron is hot and wait when it’s not. Maybe this is just another ebb, when I can rest, wait, and soak up inspiration. 

But maybe not. 

It feels different. It’s not the muse that is silent it’s my hand that is still. 

And I’m thinking it’s not time to wait, it’s time to act. But how? What damage can a hammer do to a damn? How to still my anxious heart and steady my shaking hand? I don’t know. 

I don’t know.

Beautiful words really. Acknowledging the unknown. I don’t say them with complacent humor, throwing up my hands in surrender. No. I bow my head. 

I don’t know. 

This thing called writing, called art, called breathing, it has me confused and uncertain. I don’t know how it’s meant to be done. I don’t know how I am meant to do it. 

But I know I must. 

So I take my small hammer and I lift it high against the uncertainty, against the anxiety, against the comparison, against the fear. And I start to type. 

One word. Than another. Than another. Until water begins to trickle out a crack and run softly down the side of the damn. 

Grace and peace,
Bethany

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.

Weak Arms and Small Armies

Her voice cut out and I repositioned the phone to my other ear. 

“You cut out for a moment, what did you say?”

Her voice broke a little as she repeated herself, but this time I knew it wasn’t the reception. 

She told me she’d been praying for an army for us. 

I cried and told her I feel like we need an army. I told her how weary I am and how there’s still, always, so much more to do. 

“But I feel like our people are weary too.” I said.  

I think they are as tired of this battle as I am. I think they are as tired of me as I am of myself. 

And besides, they already have so much to carry. They are stressed and weary from their own battles. I don’t think they have the strength or energy to hold up my feeble arms. 

The weight of it all came rushing over me. My cheeks were wet now and I didn’t feel like wiping them dry. I looked out the window down into the UCLA courtyard and watched the people walking below. How many of them are here for oncology appointments? How many of them are in pain? How many of them feel the overwhelming weight of uncertainty and helplessness that I feel now? I’m sure many, many of them. 

It all felt so heavy and so hopeless. 

The moment washed over and past us. We said our goodbyes, and hung up our phones, and we were once again separated by thousands of miles. 

But I forgot something in that moment; something that slowly began to step towards my consciousness as small and big gifts of grace appeared throughout the week, and then began to knocked loud as we made the long drive between Arizona and California yet again. 

God likes small armies. 

As I drove, and Bryan wiggled restlessly in the back, and Thad played on the iPad, the story from Judges 7 kept coming into my mind. In the story, Gideon has an army and is going to go up against the Midianites, but God tells him his army is too big. So he sends home anyone who is afraid. Then he’s left with 10,000, but God says the army is still too big, least they take the glory for themselves and forget it was the Lord’s doing. So Gideon puts them to a test and determines that only the men who drink water from the river a certain way will go into battle. He ends up with only 300 in his army. And that 300 defeats the Midianites. 

My focus wasn’t drawn to this story as a metaphor or as a message about my life or our army (our support system is always getting bigger not smaller), but there was something here for me and I knew it right away. It wasn’t a message about our army, it was a message about our God, about who God is. A message I desperately needed to remember about God. 

God likes small armies, he likes poor odds, he likes the impossible. 

Our God is the God who fights our battles for us – whether there are tens of thousands in his army, or three hundred, or just one small boy with a sling shot. He brakes down stone walls with nothing but trumpets and shouts of praise. The “army” is always secondary to the presence of God. 

Our God is the God who provides – even when the oil is gone and the jug is empty, he provides enough for each day. Even when there is only a few small loaves and fishes, he provides food for thousands – and leftovers! Even when there are no matches, and the wood is wet, he provides fire for the alter. 

This is what he does. He takes nothing and makes something out of it. He takes small armies and weak arms and makes them victorious. He takes hungry bellies and fills them. He takes me – dry, tired, and shaky – and makes me enough for this day. Gives me enough to keep going, to keep fighting, to keep pressing onward. 

I don’t have to feel hopeless by how exhausted and overwhelmed I feel. I can feel exhausted and overwhelmed, I’m allowed! I don’t need to be strong. God loves winning with the weak. 

I don’t have to worry that my community will not have enough strength to help me hold my heavy burden. They don’t need to. God loves small weary armies. He will meet each of them with enough for today, just as he meets me with enough for today.

God loves small armies. So… 

“Be strong and very courageous, for the Lord your God is with you wherever you go.”

Grace and peace,
Bethany

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.

The Best Advice about school I was ever Told

When we first put Thad in school it didn’t go great. I had picked out this beautiful Montessori school and thought he would love it. Instead he screamed and threw tantrums everyday when I left. People told me it was normal and part of the process of learning how to separate. They told me it would stop if I waited it out. I knew in my gut something wasn’t right but I listened to those who said it would stop. It didn’t. He cried every day for 3 months. Then a dear friend gave me permission to listen to my own intuition. 

She said “Do you feel peace about the school he’s in right now?”

“No,” I replied right away.

“Well, then you need to listen to that and find something you can feel peace about.” 

I pulled Thad out of school and put him in a little one room Montessori preschool down the street. He still complained sometimes about going to school but he didn’t cry when I left and I didn’t feel that pit in my stomach. We had peace. 

We had a similar experience when we first put Sage into school and again I had to learn to listen to my intuition and follow peace. We pulled her out of the first school we tried within two days. When we did finally put Sage back in school we ended up with the best teacher and team I ever could have imagined for her. I felt amazing peace about leaving her. 

All this past summer I have again been wrestling with school decisions.

I knew I didn’t feel good about keeping Thad at the school he’s been at for the past three years. It’s a good school and we’ve been well cared for there, but I knew the 2nd grade teacher there wouldn’t be a good fit for him.

We looked at other schools. I toured other schools. I even started filling out an application for another school, but couldn’t bring myself to finish it. A few weeks ago I was wrestling through the decision with a friend and she gave me again the same advice I had heard from that other friend so long ago when I first put Thad in school. 

Sometimes I’m a slow learner. 

She said, “You just have to go with whatever option you feel the most peace about.”

At that moment I realized I didn’t feel peace about ANY of the options we were looking at. A few days later I learned about online elementary schools.

Thaddeus has been asking to homeschool ever since he found out homeschooling existed, but I didn’t think I had it in me. I just didn’t think I could do it with everything else in my life. But I was intrigued by online schools and started looking into it. I liked the idea of him still having a teacher and someone else he’d be accountable to rather than just me.

And as I started looking into it more I felt peace, a lot of peace. 

But I didn’t think Bryan would ever go for it – especially right now while he’s in so much pain. Doing online school would mean no break for us and we really like having breaks from our kids. 

When I told Bryan about the idea he surprised me, though.

“I like it. I think it would be good for Thad,” He said. So, we decided to look into it some more. 

Soon after that conversation we made the decision that Bryan would enter a cancer trial at UCLA and we would go back and forth between AZ and CA for weekly treatments for at least the next 3 months. That sealed it. We enrolled this week in Arizona Virtual Academy through K12. 

So far we’ve been impressed with the whole process. They communicated with us clearly and often throughout the registration period. The schedule is fairly flexible and they individualize the curriculum for each student through regular evaluations and conversations with the parents. His teacher called and introduced herself on Friday and was very nice and very understanding about the need for flexibility in our schedule as we’re traveling. This weekend three boxes arrived on our doorstep filled with books and other school supplies. Thaddeus loved exploring all the different supplies and was especially excited about the things they sent for science experiments. 

I know it might not work out. I might not feel peace about it a month from now, but for right now it’s clearly the next best step. So we’re taking it. 

If you’re struggling with that unsettled feeling in your gut about your kids schooling let me do for you what my friends did for me and give you permission to pursue peace. Listen to your intuition. You know your kids better than anyone. 

You don’t have to stick with something because it looks good on paper, or because everyone else is going there, or because it’s exactly the type of school you dreamed about for your kid, or because it’s where they’ve always gone. Follow peace, friends, that’s it. Follow peace. 

I’m also learning that intuition is not always rational. Taking Thad back and forth with us to UCLA and adding teaching him to my already full list of caregiver activities doesn’t make sense in many ways. But, I know it’s right for us for right now. Following intuition, following peace, following that still small voice of the Spirit, hasn’t always been easy in the past, and it hasn’t always been rational, but I can look back and see how the rational choice hasn’t always served me, but the intuitive choice has led me to good, time and time again. 

We’ll try to document our own online school journey a bit more along the way for any of you interested. 

Grace and peace,

Bethany

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.