On Following Intuition and Taking Sage Out of School

September 11th, 2014

I think the decision to put your child in school, and in which school, is always challenging for parents. We all want to do what’s best for our children. We want them to learn, succeed, be safe and happy.

Sending your child off to school always requires a great deal of trust. Suddenly your baby is out in a world that is unknown. You are no longer the only one protecting and guiding them. School is the first giant step they take away from you.

Every parent feels a tinge of sadness and fear, mixed with the excitement of freedom, as they hug their child goodbye on the first day of school.

But when your child has special needs, that sadness and fear is magnified tenfold.

I started having anxiety about sending Sage to school when she was barely one. In Seattle we were told that if she didn’t enter the public school system at three she wouldn’t get therapy. When we moved to Arizona we learned that because Sage got into long term care she was eligible for therapy even if she didn’t go to school. My relief was tangible. At least some of the pressure was lifted, but not all of it.

I still knew that Sage would get more therapy if she was in school than out of school. She would get more mental stimulation in school than out of school. She would get more social interaction in school than out of school. I felt I had to put her in school in order to provide these good things for her.

But, that didn’t make me feel better about sending her off.

How could I really send my non-mobile and non-verbal daughter into the world at only three years old? She can’t come home and tell me what happened at school. She can’t come home and tell me about the kid that bullied her or the teacher that scolded her. She can’t defend herself. She can’t even move from point A to point B on her own.

She is highly susceptible to illness and anytime she gets sick it disrupts her feeds, which has often landed us in the hospital.

She is vulnerable. On so many levels.

Throughout the summer, as her third birthday drew close, my unrest and unease grew. “We are doing the right thing, we are doing what’s best for her,” I kept telling myself. But I couldn’t quite believe it.

I thought it was just fear and I don’t ever want my decisions to be determined by fear. But today, in the quiet, it hit me like a ton of bricks. This feeling of unease is more than fear, that’s why I can’t shake it.

If it was just fear, then my self talk, reminding myself of all the reasons why school would be good for Sage, would help quiet my unease. But it hasn’t.

If it was just fear than facing my fear, sending her to school, having some of those fears become reality, would diminish the power of this uneasy feeling. But it didn’t.

As I drove Thaddeus to school I suddenly remembered, what I’m shocked I could have forgotten. The lesson I learned about intuition when I put Thaddeus in preschool.

The first school we put Thad in looked perfect on paper. It was a well known, well established, Montessori school in our area. The campus was beautiful, complete with a lovely garden the children helped tend. The owner of the school was a kind, structured, earth-loving grandmother figure. The teachers where knowledgable and highly trained. But I felt conflicted, torn, and uneasy the whole time he was there. I never felt peace about it. For six months I tried to rationalize away that intuitive feeling. For six months Thaddeus cried every single day that I dropped him off.

Then over Christmas break I finally listened to my heart, and to the voice of the Spirit that had been trying to get my attention. I pulled Thad out of that school and found another school for him. The new school was small, and much less shiny on the outside, but the teachers really cared about their students and Thaddeus did well there. He stopped crying when I took him to school. And I felt peace.

I realized today that the feeling I had with Thad at that first school is exactly the feeling I have about school for a Sage right now. I don’t want it to take six months before I listen to that feeling. I have too often ignored that still small voice and come to regret it. I want to respond more quickly now.

So, today I officially decided to take Sage out of school. Right away, I felt peace in regards to her schooling for the first time in months. I have to follow that peace.

Throughout the day I slowly came to realize ways that I could meet the needs of my daughter that school would have fulfilled.

I had a wonderful talk with a friend who’s starting a preschool co-op, which seems like it could help with my desire to give Sage more social stimulation. I talked with the pediatrician about a service in the area where the school district sends a teacher to the home of medically fragile kids for two hours a week to provide learning and mental stimulation. I got some necessary paperwork done so Sage can continue to receive physical therapy, occupational therapy, and speech therapy every week.

I worried that if I didn’t put my daughter in school she would be suffering and wouldn’t get what she needs. I don’t worry about that anymore.

Sage is thriving and she will continue to do so even outside of school.

Rejoicing in the journey,
Bethany

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Dreaming With Open Hands

August 30th, 2014

I nearly fell to the floor of the shower. Hunching my body over into child’s pose with hands extended, palms up, palms open. I’ve been striving, and reaching, and going a hundred miles a minute, and all in a moment I knew it needed to stop.

My body felt sick. My eyes itched. My nose ran. My stomach turned. My muscles ached. It was trying to tell me something and I hadn’t been listening.

All week I had feared if I stopped I wouldn’t be able to get going again. I didn’t want to process. I didn’t want to think. I just wanted to keep moving. And it was catching up to me.

I stayed there for a long time with the water pouring over my back.

I don’t want to be that person. I don’t want to grasp and strive. I don’t want to seize back the control that I struggled so long to surrender. I want to live with more grace. I want to live with open hands. I want to continue to dream and work towards those dreams, but not from a place of desperation or urgency. I want to step towards my dreams with an attitude of curiosity and openness instead.

Lately I’ve had a lot of dreams. I lot of things that I want to start and do. Perhaps it’s a way for my heart to throw it’s attention into something else, other than Bryan. Perhaps it’s just the season – autumn has always stirred lots of longing in my soul.

Many of my current dreams are projects that I hope will make me an income of my own. Projects that I hope will turn into jobs of sorts. They require planning and marketing, and for the first time I have run headfirst into those grey areas that have for so long scared the hell out of me.

In the past, when I would get a new idea I’d always test it out – I’d see who was interested. I’d timidly (though also excitedly) tell a few friends and ask them if they were interested. Let’s just say that this never worked out very well. Not because my friends were not encouraging – they often were. But my timidity worked against me, their encouragement always came with caution. With my fragile sense of self and self worth, this caution usually caused enough self doubt for me to not continue with the idea. I pitched ideas timidly to friends, seeking their approval before continuing, and I know I don’t want to do that anymore.

I am finally at a place where I can recognize this pattern, and don’t feel the need to repeat it. These new ideas I’ve been brewing – I’m not doing that with them. I am stepping out in faith to pursue them, I am planning launches and valuing myself and my skills.

That being said, I realized, as the water fell around my tired body, that something was wrong. These steps to value my ideas were good steps, but they had also come with something else – a sense of urgent panic that wasn’t good. I felt this urgency to finish these ideas, to get them to a launch point as quickly as possible because I had no idea what next month would bring. I knew that I might have to set them down, abandon them, to care for Bryan, and I wanted to get as far as I could on them before that. I was in a desperate frenzy.

I bought into the philosophy of scarcity and allowed it to lead me to close my grip tightly around MY plans. I said that I was fine with whatever happened with these ideas, I said I was approaching them openhandedly, but the truth was something very different.

The water from the shower splashed onto my open palms and something broke and shifted in my heart.

Lord, I don’t want to strive for the things I can create in my own power. I only want the things you create in your grace.
Lord, I don’t want to build my own tribe. I want the tribe that you build for me.
Lord, I don’t want to seek acceptance from others, for my ideas or my self image. I want to seek you.
Lord, I don’t want fear to drive me. I don’t want urgency and desperation to drive me. I don’t even want desire to drive me. I want to be driven and guided by the Spirit of Love.

I lay all these ideas. All these desires at your feet. Bring what you will.

Rejoicing in the journey,
Bethany

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Atomic Bomb

August 20th, 2014

“…And then the atomic bomb dropped. But in the end it was all still ok. Everything was ok. That’s how I know it’s gonna be fine now. Mom’s dreams have been prophetic before. It’s like you’ve already been through a whole war and now there’s this atomic bomb being dropped on you. Your cancer becoming stage four that’s like the atomic bomb. But in the end despite the war and the atomic bomb everything was ok. So I know everything is going to be ok now.”

Bryan’s sister sat on the floor in our living room. I listened as she shared about the dream her mom had and about how strongly they felt it was prophetic.

I folded the laundry on the couch across from her and listened, but my heart was skeptical. I wasn’t skeptical that the dream could be prophetic and used as encouragement and communication from God – I’ve had that happen too much in my own life for me to doubt it.

But as I sat there, with the crisp air of fall coming through the open door behind me, I had a very strong feeling I couldn’t shake. Call it intuition, call it prophetic, call it the spirit of God, whatever you call it, I knew this voice, I knew this burning feeling.

“This isn’t the atomic bomb. You aren’t there yet. That is still to come.”

I kept my mouth closed but my heart was on fire. There was no reason to share my conviction, no reason to throw doubt on the beautiful faith and expectant hope of Tamara and my mother-in-law. But I told Bryan later, because I always tell bryan everything, “I’m not sure that this really is the atomic bomb in your mom’s dream.”

And then we left for DC. It sure felt atomic. Bryan’s treatment was short but it was more intense than I could have imagined. There is much of it that he doesn’t remember. There were drugs. He slept. I remember it all.

And then he got better. Eight months of the same report, “Your tumors are shrinking.” Eight months of reprieve. Eight months of everyone around us celebrating.

But for eight months I held in my hands that feeling I had felt that fall afternoon when Tamara told me my mother-in-laws dream. I held it loosely. Perhaps I was wrong. I wanted to be wrong. I prayed I was wrong and that the treatment we faced last Christmas really was the atomic bomb – the end of a war we won.

This past two weeks as we prepared for this upcoming scan knowing that Bryan had lumps we could feel that we couldn’t feel before, that burning feeling, that whispered thought, that voice that has become familiar returned and whispered… “Now the atomic bomb is going to drop. Be prepared. It’s coming.”

The doctor stepped into the room and introduced herself. Since they change residents every year we had never met her before. She had never met us. She carefully pulled the door closed and blocked out the sound of nurses laughing in the hall.

After the standard how-are-you questions she jumped right in, “So your most recent scan showed that most of your tumors are stable, but two of the one’s we’ve been measuring are growing. I’m sorry to say we will have to discharge you from the study.”

She is nice enough, but not the most confident or encouraging. We stumble through a conversation about what this new information will mean for us. She tells us she will send Bryan’s records to our oncologist in Arizona. She recommends getting into a PD1 trial next. She asks us to wait for the head doctor and leaves.

I knew to expect this, but my chest still feels tight and constricted. I notice the faucet dripping water into the sink in the corner. It makes a steady rhythm on the porcelain. Or is it speeding up? Is it getting faster or is that just my heart beat increasing and playing tricks on my ears. I make an attempt to find my breath.

The doctor comes in, young and sympathetic. “The really good news is that we know you have immune cells in your body that want to fight this cancer. You have the ability within you to fight this cancer. It’s almost like, for whatever reason, these cells just got tired and worn out and couldn’t quite go the distance. But, they can fight this. They just need the right help.”

He is much more encouraging and understanding. He recommends that we definitely pursue other immune therapies and speaks very highly of PD1.

Eventually there is an awkward silence.

“Do you have any other questions?”

Bryan and I look at each other and shake our heads. No, there are no more questions, just the uncomfortable feeling that comes with bad news and an unexpectedly final goodbye.

We hadn’t thought that tumor growth would mean no more follow up with NIH. It hadn’t crossed our minds that this might be our last trip here. Until they said, “discharged.”

It feels weird that this place, which has had such a strong presence in our lives over the past ten months, will no longer be a part of our journey.

When we get to the airport we begin making the calls. We couldn’t bring ourselves to do it at NIH. We weren’t ready. I call my parents and Bryan calls his. We send out a few texts. We call our oncologist in Arizona and schedule an appointment.

This has always been one of the hardest parts of cancer. Telling everyone. In the end, I’m always glad that we have done it. I don’t know what we’d do without the support of others around us and in order to have that support I know I have to invite them into our journey, I have to tell them when things like this happen. But it’s hard. Really hard. Having to be the barer of bad news to those you love when that news involves you…well, it’s hard.

I sit in the stiff airport chair and write an email to our prayer list.

“It’s pretty direct and to the point. Not really your normal style.” Bryan says as he reads it.

The truth is I don’t even know how to process what I’m feeling right now. Even though I went into the appointment sensing that we were about to have an atomic bomb dropped on us, even though my heart was prepared, it doesn’t mean that it doesn’t hurt.

I can’t add a lot of encouragement to my email, because I don’t really have encouragement to give. I don’t feel discouraged, I still have lots of hope, but mostly what I feel is just resigned. Resigned to the the facts.

The facts are what I have in my hands right now. All I have to offer is facts. Bryan’s cancer is growing. There are still treatment options – one of which seems to get pretty good results. We aren’t without hope, but we are still walking a road we wish we weren’t walking.

That’s what I hold in my hands today – fragments of facts.

An atomic bomb just went off and I’m trying to pick up the pieces.

Rejoicing in the journey,
Bethany

 

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Teach Me To Pray

August 9th, 2014

My muscles ached with it. My neck was tight with it. My heart felt heavy with it.

As I stepped onto my yoga mat my heart turned with it. Unrest.

The world’s unrest came rushing at me.

I carried it around in my muscles. No, deeper! It’s in my very bones.

There is no peace on earth. There is no rest on earth.

There is unrest in my own life and in my own heart. There is unrest in the relationships around me. But there is unspeakable unrest in the world, and on this day my thoughts turned to the Middle East.

As the rising sun hit my face I longed for Sabbath. For rest. For peace.

Peace for us all.

I pressed my hands together in front of my heart and wondered, “How do I pray for such pressing needs?”

How do I pray for those who are being tortured and persecuted?

“Lord, teach us to pray,” the disciples asked.

My heart asked the same.

Lord, teach me to pray when peace is lacking on all sides.

As my body began to move to the simple rhythm of familiar sun salutations, my heart began to pray.

Our Father…

You are my father. You are their father.

Who art in heaven…

Whether it feels like it or not, you are in heaven, on your throne. You do reign.

Hallowed be your name…

You are set apart and holy. Your ways are not our ways.

Your kingdom come…

Let your kingdom break into their lives, our lives, the whole world.

Your will be done…

Not my will, but your will be done, Lord.

On earth as it is in heaven…

Bridge the vast difference between our world and heaven, and bring your peace here on earth.

Give us this day our daily bread…

Meet their needs. Meet my needs. Meet our needs.

And forgive us our trespasses as we forgive those who trespass against us…

May forgiveness be the wind that carries the oppressed to victory over their oppressors.

And lead us not into temptation, but deliver us from evil…

Plant our feet firmly that we might not fall to temptation or evil.

For thine is the kingdom and the power and the glory forever and ever.

Amen.

Amen.
Rejoicing in the journey,
Bethany

 

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And Again I Ask…

August 1st, 2014

We sat at the dinner table. Thaddeus ate his dinner quietly, without the normal battle. It had been a busy day and he was hungry.

“I like this.” He said, and I breathed a sigh of relief. Fighting with him over food is my most dreaded nightly activity.

We ate peacefully for a  few moments. Then Bryan spoke. A simple sentence turned into a tightness in my chest and a knot in my throat. “Feel this.”

I knew right away what he meant.

At Bryan’s last scan they had told him that almost all of his tumors had shrunk by 90%, but there were two in his stomach that were stable. Not growing, but not really shrinking either. The doctors weren’t worried. It was simply information.

Bryan had tried to feel the spots in his stomach while in DC and hadn’t been able to find them. About a week after he got home he found one spot. It was tiny and deep in the stomach. He showed me. I had to dig my fingers into his stomach to feel it, but I felt it. We knew we needed to watch it, but we weren’t worried. As long as it wasn’t growing it didn’t matter. He could live for years and years with a stable tumor that didn’t grow, and didn’t shrink, with no consequences. The problems come when things grow.

I sat up a little straighter on the bench, and reached my hand over preparing to dig my fingers into his flesh as before. I didn’t have to. The lump has right on the surface. Easy to feel. We are no experts, but it seemed it had either moved (unlikely) or grown.

I know Bryan thinks it’s premature for me to share this on the blog. We don’t really know anything yet. We haven’t had another scan, we haven’t seen the oncologist. It could, possibly, maybe, be nothing; but I’ve walked this road long enough to know that is unlikely.

I don’t want to wait to know for certain before we ask people to pray. I don’t want to wait before we beg God ourselves. “You don’t have because you don’t ask.” Right? Well, I don’t want that to be the case here.

So I’m asking. I’m asking all of you to pray with us. Pray hard with us, especially over the next two weeks before Bryan’s next scan.

Exactly two weeks from today we will board a plane and head back to DC to have scans done and meet with Bryan’s doctors.

As I’ve thought of this trip I have felt that God has already been preparing a way in love for us. I haven’t been able to go with Bryan for a scan since January. But, this time we will leave the kids and go together.

We are even going a few days early so that we can see some deeply loved friends from Prague who are there visiting family right now. I have written before about these friends – Jane and Martin and their two little girls.

Martin was diagnosed with a very rare, very aggressive, Leukemia just a few months before Bryan got his diagnosis. We have not been with them since about eight months before any of us started walking this road called cancer, but we have followed each others journey’s from afar. We have prayed. We have celebrated the victories and cried over the set backs.

I have so longed to be with them in person. And now we get to do just that.

God in his grace surely knew what we would need in preparation for this next scan.

Even as we prepare for this scan with more trepidation then the previous one’s my heart is still grateful.

We have a good God who prepares a way for us. We have caring friends who walk beside us, and carry us along. We have had eight months more than we should have had – eight months of shrinking tumors, good health, and wonderful quality of life. Bryan and I have walked through all of the previous steps in this journey in agreement with one another – clearly feeling guided to each treatment that we have tried. We have been hemmed in on every side. Provided for in every way.

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I remember that today.

“Yet this I call to mind And therefore I have hope: Because of the Lord’s great love we are not consumed, For his compassions never fail. They are new every morning; Great is your faithfulness. I say to myself, “The Lord is my portion; Therefore I will wait for him.” The Lord is good to those whose hope is in him, To the one who seeks him;” – Lamentations 3:21-25

Would you seek him with us? Would you seek him on our behalf? Would you pray, as Martin once told us he prays, “for the Kingdom of God to break in”?

Thank you!

Rejoicing in the journey, Bethany

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