Archive for the ‘ Mommy Theology ’ Category

I’ve been debating for a while how transparent to be in my posts here since Joel died. On the one hand, we have always tried to be very open about everything we felt and experienced as we were fighting in faith for Joel to be healed. We tried to write as much, if not more, about our doubts and insecurities than we did about our confidence and hope. (Truthfully I was always fairly intentional about this because I believed Joel would be healed and I never wanted anyone to ever suppose it was because we had a perfect faith. I wanted people to know that we didn’t do anything special. We had no rules or formulas. We just loved God, and trusted Him, and mostly we trusted Him to be aware of our humanness and bigger than our failings.)
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My weakness was going to show God strong. My weakness was going to bring God glory. So I always wanted to write about my weakness. Now, I worry that my weakness could injure people. Can my doubt now diminish other people’s faith? If it can, then I would rather never write another word. In the days after Joel died I told Ryan that if God can be silent so can I. But it is my trust that God will not be silent forever that makes me willing to share my questions, my hurts, my confusion. I have seen already how my questions are not unique to me. Many people who are close to us or who have followed Joel’s story have shared their frustration with me, have told me that they too struggle to pray right now. If I let the deep struggle of my heart go unsaid, after sharing the way God upheld us and sustained us, the silence might be more damaging than my weakness. If I believed that God was bigger than my failings before, I have to trust that He will be bigger than them still, and that people will join me in the deep, unknown places of anger and struggle and patiently wait for God to meet us there too.
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I don’t believe I share these posts recklessly, because I see in the bible that God loved David who shouted his anger with God in the psalms; God saw Job as a pillar of faith who questioned God to the point of receiving a Holy rebuke that somehow did not disqualify Job from being restored by the God he had accused; Jacob wrestled with God, demanding a blessing, and received it. It seems to me that God most highly esteems the hearts that aren’t afraid to really engage with Him, to accuse, shout, question, and still trust that God will not leave them alone in their frustration but that He will meet them. So I have decided to share the hard stuff too. I’m creating a new category called “Mommy Questions.” So, you can feel free to skip posts with that heading if you’d rather not wade through the muck with me.

We began the memorial service with worship, and then we shared some of the things that Joel really loved.  If you watched the memorial live you probably weren’t able to see the videos very well, so here they are:

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Joel loved music and he loved to dance.  Even though he was moderately to severely deaf I would often find him dancing along to music I hadn’t even noticed was playing yet.

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Joel loved to eat.  After Joel’s first tumor resection surgery he couldn’t swallow solid food for ten months.  So he chewed things and spit them out, but once he could swallow again he would pack his mouth so full of food, and on more than one occasion his mouth was so full there was no room left to chew, so we had to fish out food with our fingers.  We’ve both been bitten more times than we can count.

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Joel loved dogs.  He loved dogs so much that even though he never bothered to learn how to say Caleb or Isaac, he would learn a new dogs name within five minutes and be calling out “mocha” or “tucker.”  Joel thought sitting in a dog kennell was one of the most entertaining ways to spend an afternoon, and he once fed Pastor Jeff’s dog 30 dog treats in about 15 minutes.

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Joel loved Elijah.  We never let Joel have a dog, but we did get him a baby.  From the moment Joel met Elijah he adored him.  He was as rough on Elijah as he was on puppies but only because he loved him so exuberantly, and I’m pretty sure nothing ever gave Joel more joy than a kiss from Elijah.

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As passionately as Joel loved Elijah, I’m pretty sure Joel’s older brothers loved him more. Caleb and Isaac loved Joel selflessly, they had endless reservoirs of patience and compassion.  They rejoiced over every new accomplishment Joel achieved and made sure to include him in everything.  They doted on him, often stopping whatever they were doing to give him a quick hug or a kiss.  I was always proudest of my family when I watched the way Caleb and Isaac cared for Joel.

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Joel loved water.  For the first year of Joel’s treatment he couldn’t even take a bath because his broviac couldn’t be submerged in water.  As soon as he had a port that could be de-accessed, we took him swimming and he loved it.

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Joel loved horses.  He loved to sign horse.  Whether it was a rocking horse or a real live horse Joel was always ready to ride.  At Chuck E. Cheese or Disneyland it did not matter how many amazing rides awaited, Joel only wanted to ride the carousel again and again.  Just before we left for San Francisco, we took Joel to Hearts and Horses in Loveland, and watching him ride around the arena he was filled with more joy and energy than I had seen in a long time.  We cried as we watched him ride with sheer excitement.  Our family was able to do a lot of amazing things in these last four years, but watching Joel ride that horse is very close to the top of the best experiences in my life.

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Joel melted into his daddy.  There is nowhere on earth Joel felt more content than in his daddy’s arms.  Anyone who knew them, knew that Joel and Ryan had a special relationship, one that I could almost be jealous of, except that how could I be anything but glad that Joel had someone who could comfort him at all times, someone he loved so entirely.  If Ryan left the room for five minutes, Joel’s excitement at his return rivaled any military homecoming I’ve ever seen.  In the last week of Joel’s life I was the most grateful I have ever been that Joel could find a peace in his daddy’s arms that eclipsed any pain or suffering he experienced.  When I saw the way Ryan loved Joel I understood why God calls Himself our Father.  There is not greater love than that.

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Joel loved to laugh.  Joel had an amazing sense of humor.  Since he couldn’t talk, I was always shocked at the way he understood humor.  We took him to a children’s play once and he laughed at every joke, before most of the audience began to laugh, sometimes even catching a joke other people missed.  He thought people falling down was the funniest thing in the world, and almost as soon as he could stand on his own, he learned to “fake fall” to earn the laughter of other people.  No sound I have ever heard compared to the sound of Joel’s laughter.

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Joel’s preschool teachers shared amazing accounts of their relationships with Joel.  (I may type them out or ask them for the files of what they said to copy over at some point.)

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Ryan and I each shared what Joel taught us during his life.  Here is what I said:

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How do I sum up what five years with my beautiful son meant to me?  Raising Joel was a delight.  He was so full of joy.  Every time Ryan and I got heartbreaking news we would tell each other that, you know, if all of this we had gone through was just so three people would be saved and spend eternity in heaven, we would live it all over again.  The truth is, now I’d live it all over again now, just to have him back.  I am not the same person I was when I first sat in the intensive care unit with Joel.

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Joel has taught me to live deeply.  I was used to investing the minimum amount necessary, always afraid of failing, knowing that if at least I hadn’t tried very hard it wouldn’t be much of a loss, if it didn’t work out, but Joel required all of me.  I remember the weeks after we were first told Joel was terminal.  Watching him do something new or unexpected and feeling love well up in me, but only so far.  Suddenly my love for him was a liability.  The  more I loved Joel the more I stood to lose.  For the first time I understood what sacrificial love meant.  Love was not safe.  Love made me vulnerable.  Everything within me urged me to hold back, to protect myself from being even more hurt than I already could be.  After many heart-wrenching months Joel taught me that he was worth loving, he was worth all the pain that my love for him could bring.  I was risking my whole heart, and he was worth the risk.  Eventually loving Joel fully didn’t make my heart ache with the fear of promised pain.

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Loving deeply helped me learn to believe deeply.  I had grown up believing God’s promises were true.  I knew that God meant for us to live powerful lives that displayed His glory, but I had never sacrificed anything to live that life.  Over and over again, Joel’s fight with cancer forced me to decide if I could expect great things from God in the middle of tragic circumstances.  Once again, I knew that my expectation opened me up to the possibility of disappointment.  If I expected very little at least I wouldn’t be let down.

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I’m not sure when I made an active choice to risk my whole heart to trust God, to believe that He had the most glorious outcome possible for Joel.  I think as soon as I stopped protecting myself from loving too deeply, I didn’t want to protect myself from believing too deeply either.  My life became forfeit to God’s plan for Joel.  I wasn’t sure a month ago that I could really walk Joel to eternity, believing the entire time with all of my heart that he would be healed, raised from the dead if necessary.  I wanted to be able to do that, but I wasn’t sure I could face the pain and hold on to hope at the same time.  Then Joel’s eye turned in, and his face drooped, he stopped swallowing, stopped walking, stopped standing, until eventually he stopped smiling, stopped talking, stopped laughing, stopped having facial expressions at all.  All the things I feared were happening before my eyes.  I knew that Joel was dying, and by the time he needed oxygen and pain medicine, it was clear that the moment I had expected for three long terminal years had come.  Joel would have his mighty miracle or be lost to us on earth.  I held nothing back, I fully believed that Joel would be healed, not only healed but fully restored, and grow into a man who lived a powerful life that displayed God’s glory.  The fact that Joel was dying before my eyes only meant we were closer to seeing a miracle than we have ever been, and I know now that I had held nothing back in my belief for that miracle.  I know that I did not protect myself in my pursuit of God and His glory.  I invested everything I have.  I know it because when Joel died I was shocked.  After three years of his being terminal and watching him die before my eyes I was still surprised that he was dead.  We had never made plans for his death, because he really wasn’t going to die.  I had invested my whole heart and God would be faithful.

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Love is not safe.  Believing God is not safe.  I risked everything, and my reward is pain.  Deep pain and anger, more anger than I have ever let myself feel in my life, and this is Joel’s last lesson to me.  Joel, in his delightfulness taught me to love deeply, in Joel’s great need he taught me to believe deeply, and in the emptiness he left behind he is teaching me now to feel deeply, to cry openly, to let myself stay mad, not even trying to explain it away or understand it.  I risked everything and now, I am broken.  As angry as I am, that cancer won when I know that Jesus defeated it at the cross, angry that the victory I was promised never came through, as justified as my anger feels I trust God to heal me. I know God is good, and I know that He loves me and right now I feel like that’s all I know, except for this one other thing, I know that even though Joel has died I don’t regret investing everything I had into this little boy and this big God, because I wouldn’t want to sit in this moment now, composed and not surprised.  I earned this pain it is mine.  I feel it so deeply because I believed God so fully.  I didn’t believe I could be disappointed and I was, but I would rather own my disappointment and confusion than know that I held anything back, protected any part of myself from living as deeply as these last four years invited me to live. I would rather have my heart ripped from chest than to have a heart that didn’t believe that resurrection life was ours for the taking, that it is still our promise and inheritance.  I would rather have my victory unjustly stolen from me, than to think it was never really mine to start with.

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Along the way I discovered that God had strategically placed around us people who were just as fully invested.  It took a dying son for me to learn to live so fully, but somehow all of these people in our church and community were all-in from day one.  More people than I can count have prayed impossible things with us.  We have been given special experiences again and again by people and organizations who never got tired of encouraging us.  Somehow, four years in, no one was done loving us.  Even today when I stand before you unsure of so many things, I have seen God’s faithfulness poured out to overflowing, meeting every need we have, financial, emotional, physical, through people who love deeply, believe deeply and feel deeply.  You have held nothing back in your support of us, and if it weren’t for Joel I would never have known how deeply we could be loved, how faithful God could be, even when I’m angry.

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Here is what Ryan shared:

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Loving Joel has taught me that love isn’t safe.

But love is good.

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Losing Joel is shown me that trusting God isn’t safe.

But trust is good.

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Being Joel’s Daddy has revealed to me that though I could not keep him safe.

My love for him.

My trust in Him.

Was good.

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I want to share with you what it means to me to be an earthly father, with a broken child.

I want to shout at you how much I loved Joel, though he was not able to work for my love.

And I want to show you why Joel’s trust in me, his willingness to abide with me, to melt into my side as we sat for hours and days and weeks with him in my arms, was the greatest joy of my life.

I want to reveal the love of a father to you.

Because it is good.

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I’ve said before that Joel’s brokeness did not cause me to love him less.  It compelled me to love him more.  His inability to talk to me made me want to connect with him in any way that I could find. His inability to walk made want to carry him where ever we went.  His inability to eat caused me to feed him at every meal.  His brokeness did not cause me to reject him.  It stirred up in me a longing to love him, and comfort him; to connect with him and know him.

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I loved Joel, and Joel could do nothing for me.  He could not obey me, or work for me, he could not talk to me, or learn from me, and so all I desired is that he could be with me; In my arms or on my lap.  All I desired was that he would desire to rest beside me so that I could be the one to comfort him, and feed him, and scratch his little arms because he like it, and watch Barney the Dinosaur for the 8th time in so many hours because he wanted it.

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I longed to heal Joel and to see him restored physically and mentally.

I longed to know him, to know his thoughts, fears, and favorite things.

I longed to protect him and have him run to me in times of danger.

I longed to have him imitate me and trade a loud joke and a quiet I love you.

I longed to be his rest.

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I learned from Joel what a good father is.

I learned from Joel the significance of the words

“Our Father who art in heaven”

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Our Father who feeds us our daily bread and living water that we may not hunger or thirst

Our Father who longs to gather us to himself as a hen gathers her chicks.

Our Father who rides in on the clouds with fire in his nostrils to rescue us from those bent on destruction.

Our Father who is our rest.

Who would not spare even his own son, so that He might show us what it means to love and forgive and heal and show grace to our messy broken lives.

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“Our Father who art in heaven”

Abba

Da da

Who prepared a place and an eternity to spend with his son Joel, my son Joel; so that Joel might find rest for his soul, healing for his body, and life eternal, so that Joel’s earthly father, his son Ryan might hold Joel again.

It is 4:30 in the morning, and I am in a hospital room with Ryan and Joel, awake. It reminds me of all the other times I’ve been here, with the world frozen, nothing important happening but the three of us together in a hospital room. Everything happening outside this room can wait. It won’t wait long. In a few hours I will go back to my other children, and my friend who is staying with them. We will clean the room where we’ve been staying and make lunch and put together airplane snacks. But, for right now, there are no decisions I need to make, no one who is waiting to hear back from me, there is no one I must reach out to at this early hour. There is just the almost silence, interrupted by the whir of machines, Ryan’s gentle snoring and the occasional whimper from Joel that tells me he’s not really sleeping, but he’s not insisting on being awake yet either.
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I remember so many early mornings awake in the hospital. Over and over again, I would wake up between 4 and 5 am, and God would give me something to say and time to write. This is how everything began, over four years ago: dire circumstances, colored more by the expectation of a living and active God about to move, than the grief I knew was “supposed” to be framing my vision.
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I have spent the last two days working to get ready to go home, interrupted by quick trips to the golden gate bridge, the academy of sciences, and the hamon observation tower with the kids and my friend, because we didn’t really know when we were leaving anyway and it was the last few days of our time in San Francisco, and no matter what happens with Joel, my children are still children, and they run and play and laugh and that is beautiful. Admittedly, the field trips were foolish and left us more tired by the afternoon than we should have been with so much to do and so many decisions to make, and such weighty emotion waiting for me each night, when I have left them and come to my quiet, stark oasis with Ryan and Joel. During the day I am physically drained and at night I am emotionally drained, and it is almost too much, but isn’t. The one relieves the other somehow.
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Last night Joel and Ryan and I crowded together into his hospital bed and took photos and videos and sang the same worship songs that have been on my “Joel play list” for over four years now. We sang “Your Hands” just like we sang endlessly the first week we spent in the intensive care unit with him, we sang “Hope Now,” the song I returned to again and again one-year-in when Joel had “run out of medical options” for the first time and was “about” to die, we never even got to the songs that have been added to my list since then, the ones like “furious” that have held the weight of my heart and reminded me that God is even bigger than this hope that roars inside of me, daring the darkness to just try and thwart the plans of the Almighty God, and see how He will defend us! (I went ahead and hit play on that one just now.) These songs remind me that God has been leading us, every step of the way, showing us who He is, teaching us how to walk with Him.
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In this hospital room the interminably long last four years with all their ups and downs feel short, so short, (and even though you would not believe it, sweet.) This fight is really ending after all, and it was the blinking of an eye. I feel like I have caught glimpses from the corner of my eye of the picture God is painting, I have heard whispers in my spirit, and could almost discern the words, I have remembered the melody of a song whose lyrics I can’t quite recall but I know that the theme is always life and glory. I will finally see the finished work, and I am excited to see it, even though I know people don’t understand.
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I’m sure my expectation looks like denial, but seeing Joel dying does not make me any less certain that he will be healed. In some ways I feel more certain, not because the same doubts don’t come to me, but because I know they will not be entertained much longer, because this chapter is almost finished and we will have an ending, one way or the other. So the doubts and fears, that make me re-affirm that “even if I’m wrong” this is where I stand, become less and less powerful. People’s conciliatory words of comfort, meant to reassure us and help us accept Joel’s death, don’t sit well with me. They aren’t offensive because I know the heart behind them is good, but they are weak words, because it is so obvious to me that death is the given, I don’t have to work to be ready for it, or accept it. It is coming whether I would accept it or not. It has been coming slowly for so long. I don’t have to work to understand that Joel is dying. It is obvious. Heaven is amazing, and so I’m not worried about death, it will come regardless of where I stand and wait, but now death is circling close enough for redemption to finally feel closer. This is the part of the story where a daring rescue can thwart death’s intentions just in time, perhaps when it looks like it is already too late. I want to watch for that. I don’t need to focus my eyes on death, studying it and its slow progression, its course is clear already, but there is a glory that is coming and its journey to us is wild and quick and frightening, and I want to be watching for that glory, I want to stand trembling in Awe before God and His power, not sure that this thing we’ve asked for is something we can quite manage, but trying anyway. Death is the given, but the life that is possible now for Joel, the miracle that could come, now that death is so close, is something worth pursuing, worth risking everything to see with my own eyes. There have been many words spoken to me that remind me that this is all I want, to see God’s glory here, in this life, for my son, and that maybe just maybe the chapter whose words I can see come to an end just a page or two from here, ends with that glory. Those impossible words of expectation are what comfort me, and remind me I’m not the only crazy one!
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I can’t help but think of all the false-alarms we’ve had, all the times I’ve written similar words about Joel not having much time left, but those words before were based on expectations placed on him by his medical prognosis at the time. This time I don’t have to be told Joel is dying, I see it clearly. His temperature is low now. I no longer hope we can get him off oxygen. I see him now and know that the long phases where Joel stares blankly into nothing will come more and more often now and last longer each time. I used to hate all the false-alarms, all the times I would declare that either God will save Joel or Joel would die, knowing I had said that before, and in the end that stark fork in the road had never quite materialized. I don’t resent all those false-alarms now. They were practice for this moment. I know what it means to have Joel on pain medicine around the clock. We’ve done that already, the grief of that moment isn’t new, so it will not startle me when it comes. I know how it feels to stand in this place already, this time I just have to stand a little bit longer than before, but I’ve practiced my stance so many times that it feels comfortable now.
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This may be the last early morning I spend in a hospital room typing away while Joel and Ryan sleep. When we go home he will be under hospice care in our home. I suspect we will not admit him to the hospital anymore. For better or worse Joel’s fight with cancer is about to be over, and even though it looks foolish, I am excited, because I’ve already lost what there is to lose of Joel, death would just mean I can’t hold his body while I long for what he used to be, but a miracle now would mean finally getting the chance to know this boy that I love, and watching as the world is introduced slowly to a man with a calling and a destiny, rescued from death for a purpose that makes the devil tremble.

It’s hard to believe we could be home tomorrow night! If Joel is approved to fly commercially with us we will likely be home by tomorrow night. If we determine that he needs medical transportation home then it might Friday instead, but either way things are moving quickly. We feel so supported and taken care of, and we’ve had so many offers of people willing to help us get our van home, so we are sure that will work out just fine. So now we just pack up, and wait to see what method of transportation Joel will take home.
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Joel continues to need some oxygen but he is calming down and has even fallen asleep. He was fairly agitated a few hours ago with his heart rate up above 180 for hours but now it is down to 132 and he is requiring less oxygen and doing better. Before he fell asleep he chattered at me a little bit and wanted to hold the room phone and open and close the room service menu. It has been reassuring to see him acting more like himself in the middle of what has otherwise been a fairly shocking day. We found out that Joel tested positive for flu again, so he either never fully got over the flu he had two weeks ago, or he has it again. Now we suspect that the dramatic respiratory issues we’ve seen have been the combination of a weakened immune system with flu and anesthesia. We are hopeful that as the anesthesia wears off his respiration will improve and he might be able to come off oxygen.
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Our greatest prayer request is that we can get Joel home safely. There is a kind of panic I’m not used to experiencing that settles in about him not doing well here. I just want to be home where family and friends can visit him. Last night when I stayed awake worried about his breathing it was so unlike me. Ryan is the resident breathing police in our home. He’s the one who checks on the kids while they are sleeping. I’m the one who says, “what are the odds you’d check in on them in the exact moment when they could be resuscitated, if they stop breathing in their sleep, they die and you can’t prevent it by looking in before you go to bed.” Yet, there I was, with my hand on his chest trying to will him to keep taking each new breath. I know when we are home, and everyone has gotten to see him again I can relax again.
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In many ways I feel like my spirit is being set free to fully believe God, in a way that was difficult for me while he was still on a trial and while we were away from home. When there is no hope but God, part of me gets excited because, now, at last, conditions are ripe for a miracle. God is our only hope, and He is such a better hope than a stage one trial. For now, until we are home, seeing Joel unwell makes me think, “no, not like this, not here, no, no , no!” but at home even if he is doing just as bad or worse I know I will be able to say, “God, if you will save Joel, then he will be saved!” and rest knowing that God loves Joel, hates cancer, and loves to heal his children.
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I am going home, and we will see now how God finishes the story of Joel’s fight with cancer that began over four year ago. Nothing in my spirit has ever cautioned me to temper my belief in a glorious miracle for Joel. Everything I have ever felt from God has been an urging to go for it, to hold nothing back, to boldy believe every crazy promise I have ever read in the bible and to expect to see the glory of God. That is not to say there has not been a tether, something holding me back, and that has been God’s timing. Again and again I have felt certain that we were waiting on God’s perfect timing. Years ago, I asked God to do whatever was most glorious, and many times I have seen that waiting for the most glorious moment has meant a lot of ups and down and a much longer season of endurance than I thought I was capable of. Now, I know that tether is being released from us. We have grown strong as we waited. We have learned just how faithful God is to us, and now I can say with confidence that God’s time to move is approaching soon. Whether we have a few days to wait or a few months, I don’t know, but I know that it is this season or no season at all. Joel will not be healed by medicine. Joel will not continue to live in pain. Joel will either be healed by God or he will die, but we will try to never make peace with cancer, and to contend for Joel’s life. I am filled with expectation and excitement as we wait to see what God will do now. I’ve lost Joel as he was already. There have been many sad and terrible moments of watching Joel slip away, of watching Joel be less Joel, the loss has happened, and when I think of all we have lost I could cry for hours, but when I think of what lies ahead of us, I have so much tremendous hope.
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We will now have the opportunity to trust God as fully as we have ever been able to, and in just a little while, I could see God move in a way that will astound me. The years of endless waiting are drawing to a close, and hope is filling up the places that have lain dormant as we tried treatment after treatment. We have known for years now exactly what death could look like, now I want to learn what a miracle will look like instead.

Almost three weeks ago now, we were told that Joel had probably just weeks to live, and we were given the choice to stay home and do nothing medically except steroids (or not if we chose) and just wait, or to go to San Francisco and enroll him in a new stage one clinical trial for a drug that targets his kind of tumors. We decided to go to San Francisco, and here we are in San Francisco doing what we would have done if we stayed home, doing nothing medically except steroids, and just waiting.
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The news we got today that Joel has to wait 10 more days before he can start the trial was frustrating, and yet, I see God’s hand in the waiting. I have been frank with friends and family since we made the decision to come to San Francisco that I just really didn’t think we would end up doing the trial, even while we were packing to move out here. I have always been willing to do the trial, but I just never felt like it would really happen for us, so it was odd to me when Joel was really still ok to travel and we got the clearance from our doctors to leave, the drive out felt a little surreal, and now two different times we’ve been within days of starting the trial, and I’ve thought, well maybe I was wrong, looks like he qualifies and we really are doing this, only to have it pushed back a little and now a little more. Perhaps Joel really will start the trial on February 3rd, more than a full month after our meeting with the doctors to make difficult decisions about how to proceed within our new reality of Joel’s lethal tumors. I think for me, Joel starting the trial would be more surprising than Joel being healed before the trial can begin. I could be wrong, definitely, and we could do the trial after all, or perhaps it will be delayed again for a reason I can’t predict now, or perhaps Joel will not qualify by then, or get worse, but I just get the sense in my spirit that God is on the move.
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When Joel is finally healed once and for all, I want it to be undeniably a move of God. I don’t want it to be through a trial or because of a medication. That’s just how I’m wired in faith I guess. I want God to get the greatest possible glory for Joel’s life. Ryan would say that Joel living long enough to see this trial, and his tumor not growing while we wait for him to start the trial, symptoms remaining stable, the ability for us to be out here at all, is miraculous in and of itself. If Joel was on a trial that worked for him, Ryan would see that as completely glorious, and perhaps he is more able to reconcile the natural with the supernatural, to see that it really is all supernatural. He might, in the end, be more able to say “God’s will be done” than I am, but something in my spirit urges me to expect even more from God than I already do. I’ve always said that if Joel was healed medically I would not complain and would quickly get over any disappointment that it didn’t happen how I expected. Many, many times I have wanted to cry out to God and plead for Him to give us a simpler road even if it meant a less glorious outcome, but I always stop short because I know that all the sorrow and loss we have faced so far is small compared to what I believe God is working out in Joel’s testimony. If God wants to use a miracle in Joel’s life to reconcile anyone to Him, to show anyone how great His love and faithfulness is, to draw one skeptical but hopeful heart into a deep and impacting relationship with Him, then truly I believe I would agree to repeat these last four years of my life, or at the very least, to walk out this last short season in peace with great expectation for God to reveal Himself even more clearly.
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Truly, I set out to write about my expectation for the next two weeks, my sense that a miracle is coming, and my hope that it will not be very hard on Joel or on us, but I don’t have words. I don’t know how to capture in writing this tentative hope flourishing in my spirit. It is not a feeling of excitement really, it is not a deep and abiding assurance, I am very aware that what I know is nothing compared to everything I do not know. I think what I feel most is an encouragement to get ready, to invest myself in preparing for God’s faithfulness to us. I get the sense that God is moving now whether we are ready or not, but that if we are not ready we could experience everything to come and still somehow “miss” the fullness of God’s heart for us in the middle of it.
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For several months now I have felt like God has been showing me that I can trust Him to finish what He starts, and that as soon as I see that He has begun something, I should take that as a promise of His faithful completion of it and then not waste an ounce of energy preparing myself to be disappointed by Him, but instead, with reckless abandon, prepare myself for His faithfulness. It seems like an odd idea, to have to prepare yourself for God’s faithfulness, but then, it doesn’t take much to hold disappointment, really. We are all able to hold disappointment, we do it every day in big and small ways, and yet we are constantly trying to lower our expectations further so we can’t be disappointed. I find myself, over and over again giving caveats like “and even if I’m wrong I would still want to live like Joel was going to live” which is true I guess, but it isn’t really my heart. My real heart does not say, “faith is the most logical approach and so I choose it without expectation, but just as the option that works best for me,” my true heart says, “Look out, God is doing something huge and it’s happening soon!” but if I don’t show people that I too am preparing myself for disappointment they will worry about me, and so I put on, in my speech at least, and probably more in my actions than I would care to admit, a deliberate and open show of just how prepared I am for disappointment. I feel like God has shown me that all of that is a foolish waste, I can already hold disappointment, more than I can even imagine now, the world, and sin and brokenness have prepared me more than I could ever prepare myself to hold disappointment.
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What does it take to prepare yourself to hold glory? Our natural circumstances do not make us fit vessels to hold and display the miraculous glory of God. What happens if God pours out his glory and you are not prepared to hold it? I have heard stories of lives crushed under the weight of a miracle. These stories don’t make me afraid, but they make me want to be ready, to walk this out with God as prepared as I can be, and any time I spend preparing to be disappointed is time I’m not spending preparing to be overwhelmed with the goodness of God. I don’t really know yet what it means to get ready. I don’t know how to prepare myself and my family for a miracle that feels like it is coming quickly, but in some ways has been coming very slowly and deliberately for years. I think in many ways God has been making us ready, over these years, that much of the work is already done in us, but I think He gives us a way to partner with Him, a way to invest in the work He is already doing, and then reap the fruit of our investment in addition to the natural outcome of His work on our behalf. I’m going to try to spend the next two weeks, waiting. We will wait for God to show us how to prepare to hold His Glory, how to add our meager investment to His great work and how to soak in as much as possible of the things He wants to speak to us and show us. And as much as Ryan is so much more comfortable with a natural outcome than I am, I see in him the same indescribable expectation that is working around on the inside of me. We are on the same page, although he wouldn’t print that page and post it in the town square like I do, but expectation is stirring in him too.

I was talking to a good friend today and I realized I had not written anything lately about doubt. It is important for me to write about it, because I have seen how miracles go. Someone receives an incredible answer to prayer, there is an honest to goodness miracle, and as Christians we get excited and we start telling each other the story, and with time the story changes, the characters evolve into super humans of faith, who knew all along their miracle was coming, who never doubted and trusted God perfectly. Perhaps those people exist in the world somewhere, but I’ve never met them. I always think the testimonies lose their power when we try to make them bigger than they are.
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I understand that if Joel is healed the way I want him to be healed, our story will get told with inaccuracies, it will get blown up bigger than life and it will become an anecdote that someone like Ryan will hear about and say, “How do you know that’s true? Do you know them? If that happened why wasn’t it in the news?” This is his standard response to miracle stories. His response frustrates me, but I see how documented testimonies, people sharing their own stories in their own words actually inspires great faith in him. He is naturally a bit of a skeptic, and I am not, so we can grate on each other if we’re not careful. Anyway, I know that not everyone who hears Joel’s story one day will read about it in our actual words, but for the people who do, I want them to know that there has been doubt. I want them to remember that this was a long battle marked more perhaps by great endurance than great faith.
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When doubt comes, it is heavy, oppressively heavy. For me at least it comes on all at once, completely out of the blue, when I’m thinking about nothing at all. The doubt I have felt at least twice in the last week, is accusatory and strong. Doubt demands to be heard, and at least at first, it feels inescapable, it feels like a new and permanent reality that minimizes and overshadows all the things I have been convinced are true about God, His promises, and Joel’s future. The doubt I have felt feels external to me, because it is not drummed up gradually from worry or concern, it is an all-out assault, demonic and targeted. It feels external just like beautiful wisdom from God feels external, it is my thought, it is not an audible voice or something discernibly “outside” of myself, nothing about it seems foreign on its face, I just know that it was not really my thought, not what I was thinking about. I have learned to recognize God’s voice to me as that wisdom that is not my own, even though it is my thought, it is surprising and revelational, as soon as I think it my next thought is usually “I didn’t know that before.” I have learned not to give myself credit for that kind of wisdom, although that took time. The doubt is like that too, and I have learned, praise God, not to own it either, not to see the doubt as “mine.”
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Enough poetry, here’s how it went. Last week, Ryan and I went to see a movie, it was the day after we learned that Joel had weeks to live according to the doctors. (A friend had offered to watch the kids and we were glad to just pause life and get away for a couple hours.) I had been very sad, but also very hopeful. My faith was building gradually into an almost excitement that soon we would see God move on Joel’s behalf, the short time frame the doctor had given meant it couldn’t be long now. As we left the movie, I waited by the door for Ryan to use the restroom and it just hit me, “You realize you’re delusional, right? You’re going to lose your son. And what on earth are you going to do?” I put it in quotes here, but of course it wasn’t actual words, but with those thoughts came a deep despair, an almost panic, a feeling of inevitable doom that really our family could not handle what was coming and would never be the same and that I was ignoring the obvious. It was so heavy, it sat on my chest and I couldn’t shake it. Ryan came out of the bathroom and we walked to our van. I got in and sat down and in the time it took for him to walk around the van and get in his seat I thought, “What do those thoughts profit me, or my family, or Joel? What is the benefit of thinking that way?” This was also a thought external to me, I don’t credit myself with sharp wisdom that cuts to the heart of an issue, but I am the grateful recipient of it so much more often than I deserve. This thought was enough, it was like a light switch flipping on, the darkness was gone immediately. Then I thought all of these things through, and in my own reasoning could see that, choosing to live in doubt would not make anything better for me or my family. Expecting or anticipating Joel’s death would not make Joel’s death any easier if it came; it would not alleviate our grief to be able to say, “well, I knew it.” What’s more, I realized God had really placed my feet on a platform of faith. At least 90% of the time, maybe more really, my natural response is faith, it’s not doubt. So for me to live in doubt, I would have to choose it. I would have to work to drum up doubt and maintain it. (I’m sure it wouldn’t feel like work for long, I’m sure if I chose to step off the foundation God has given me it would start to feel simple to just stand in doubt instead, but the point was it would mean actively changing my footing.)
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In the end, that was enough for me. I didn’t feel the need to wrestle with that heavy doubt, to struggle and overcome it, I just felt like I could dismiss it, ignore it. Doubt was a real option, there was plenty of evidence to support it, but I had a choice and I was going to simply not choose doubt. The heaviness left, but the revelation remained, that while doubt would say I am being foolish, I have nothing to gain through a lack of belief in God.
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Today I got up in the night to go to the bathroom, (oh the joys of being six months pregnant) it must have been around midnight, and I felt that same heavy doubt. No specific thoughts this time, just a heavy oppressive doom type feeling, a hopeless feeling. It was strong, and just as I began to try to decide what to do about it, I just ignored it. I remembered it was not mine, and I went back to bed.
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That probably sounds too simple, but it really was that simple, because the answer of whether or not I would give in to doubt had been settled for me last week. I’ve thrown my hat in with God, no matter the outcome. I have doubts of my own of course, doubts that are my own thoughts, but they don’t carry the kind of weight that the spiritual, external doubt carried. The funny thing is, my personal doubts could probably do more damage to me, the thoughts like, “what if we leave Saturday and no one ever gets to see Joel again,” or “I should just give Joel his big hugs Elmo now so he really gets to play with it because who knows how he’ll be by his birthday and if he dies it will just depress me that he never really enjoyed it.” Those thoughts, completely my own, that I can come to throughout the day, those thoughts could overtake me I think, except for this, the devil overplayed his hand. He attacked me hard with real, spiritual doubt, too big to be reasoned with, and knowing that doubt was too overwhelming for me, God spoke into my heart directly about the real weakness of doubt, that it has no good fruit, that it doesn’t accomplish anything, and that word of truth has been the key to overcoming all my small doubts, the ones I do have to wrestle with and work through. Over and over again I have seen how the devil, afraid of our victory, attacks us, and God uses that attack to train us up in faith. I am stronger now because of all the ways the devil has failed to tear us down. I always marvel that he doesn’t just give up all together.

When we get difficult news, Ryan sleeps a lot, and I barely sleep at all, this is just how things go. So I was up late and woke up at 5:30, Ryan went to bed by 8 and is still sleeping now.
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I wanted to let people know about a couple kind of cool things. Specifically, I had been really discouraged for the last week or two, I’m not sure exactly how long. I had a discouragement I couldn’t shake and then little things would encourage me but it would last an hour or two before I felt really discouraged again. I did not understand or like it, but I also didn’t do much to fight it. Anyway, I just wanted to let people know that since we got this terrible news that discouragement is gone. All of the hopelessness has left, which I know is really strange because my actually circumstances are much more hopeless now, but even in great sadness I feel amazing hope, and I really have not had to fight away the discouragement, it is just gone. The contrast is startling. I know many of you picked up on my discouragement from my posts, and I just am so thankful that the grace God gives us immediately triumphs over that natural hopelessness.
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I woke up with great faith this morning. I don’t really know how to explain that either except just God’s grace and the way He gives me His vision, because although I wanted to go back through things I’d written and find all the scriptures God had given me through these past four years that had mattered, I never did do that. I didn’t dig into the word, I didn’t flood our house with worship, there is just a strong faith, it is a gift and I am thankful. I was awake just long enough to process this gift, when Joel began to have a seizure, a pretty big one, and I prayed for him. We have learned so much about prayer through praying for Joel’s seizures. I have a persistence in prayer now that I didn’t before. I can see circumstances get worse instead of better as I pray and continue to pray, I can feel discouraged while praying and then pray through that until faith rises up greater than the discouragement. I have often thought that eventually the devil will realize that his attacks on Joel are only strengthening my faith and training me how to pray more effectively and just give up all together, but that hasn’t happened yet. Anyway, today as I prayed and things got worse instead of better initially, faith in God just kept building and building in me, faith in His victory, that He has already defeated sickness and death, that the devil can not triumph over Jesus, that (and I have lost my train of thought because just now as I was writing Joel had another seizure.) As I was testifying to the faith that welled up in me for Joel in a mighty and powerful way when I prayed for his seizures over two hours ago, a new seizure interrupted what I was writing. I stopped just now and prayed for him, and I guess I should clarify that I do not enjoy praying for his seizures, every time I want to just skip it, I am so weary of it, and I don’t want to press in, I want to let the seizure just take its course, and sometimes I really do just let it because I’m too tired to pray, but I prayed again, and again I was just amazed how despite my weariness God rises up a faith for Joel that is greater than I thought I had. Both this time and last time I prayed until I had nothing more to pray about the seizures so I began to pray for Joel’s full restoration, for the wholeness I want him to have, eyes straight, deafness gone, and language restored. Each time it was as I prayed for Joel’s future that the seizures finally stopped. (Maybe that’s the prayer the devil is really afraid of and he stops his attack so my prayers will end.)
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Anyway, I was only going to write all of this to say that God is so faithful. His grace is new every morning. I have yet to discover a circumstance so hard that God’s grace did not lift me high above it. I also wanted to be clear that what we are praying and believing for is a mighty miracle, and Joel fully restored. It is my hope that even if Joel physically dies we will not lost faith but then pray even more fervently for him to be raised from the dead. Whether our faith will be able to withstand the symptoms that may come, which will likely include the turning in of Joel’s other eye, his left eye, something we are already seeing, more facial drooping and paralysis, an inability to swallow, headaches and vomiting, problems breathing, inability to walk and possibly blindness or full deafness, and eventually death, I don’t know. I hope our faith will continue despite all those things. I hope that if Joel dies it will be with me fully convinced that he will live and holding on to the hope of resurrection for way longer than anyone things reasonable. However, if that is not the case, if my faith fails, my great desire now is that your faith will not. Would you continue to pray for Joel’s miraculous healing, even if we stop praying for that? I know that’s a lot to ask, perhaps it is impossible, but if you see our faith flounder and you feel God ask you to continue in strong faith despite our lack of it, please know that would bless us. I hope it doesn’t come to that, but I know how human I am, and how hard it is for me to see Joel suffer. I keep praying that God would come quickly, so quickly, before the worst of this can happen, but I have no assurance that we will be spared even the most difficult parts of this, but I ask that we will be anyway, because that would be amazing, wouldn’t it? I suspect I will keep posting too much, writing too often, pushing important updates further and further down the page, but I can’t help it, so I hope you keep reading the older stuff even though I will keep burying it much too soon with new posts.

As this long day draws to a close I am tired, but not sleepy, my face is puffy from crying, I have a dry throat and dry hands, a slight headache and a desire to write down absolutely everything. I want to describe the feeling of being entirely empty and entirely resolute. I want to explore how I can be deeply sad and incredibly hopeful at the same time. I want to talk about holding Joel’s hand, walking down the hall wanting to soak in the moment, to memorize the feeling of having his hand in mine, to let it matter, and then hating that my thoughts swing to “because what if I can’t hold his hand one day” and hating that thought, wishing I could just appreciate each second of Joel without that appreciation spilling into the pre-mourning I refuse to do, because I believe he will live, but instead of fighting the brief thoughts of mourning, choosing to fight instead that lie that says that those thoughts betray some doubt, some mistrust of God, when I know that those thoughts make me human and that God knows I am human and does not make Joel’s victory dependent on me never feeling unsure.
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I want to jot down the things I forgot to write earlier, but that I remember now, like when Ryan asked the doctor if Joel would develop hydrocephalus and he told us that he wouldn’t have time to, because he would probably die from swelling in the brain stem before that would happen. Of course that’s not a helpful thing to write about, but perhaps it’s practical because it reveals the timeline we’re dealing with and I keep wondering if the average person who follows Joel’s story can tell that this time really is different form all the other times. Every time we could only give Joel treatments that would not cure him, but we always knew that the treatments we had given before had always worked, and so even if it wasn’t real hope, it had become a kind of hope to us. This time we can not do what has always worked. The part of me that waits expectantly on the Lord and His glory in our circumstances is glad that there is nothing left but Him now, and doesn’t want the idea of the trial to distract us from the reality of what we’re facing. The mommy part of me wants to reverse this train somehow, wants to shout to God that I was really fine with all the ups and downs and waiting and half-miracles and that ever wanting more than that was foolish and naive, because the pain is real, and the sadness is deep. I want to shout out, “Look what God is about to do, watch how He delivers Joel!” and at the same time I want to roll up in a silent ball and wait it out with fear and trembling so aware of all of my doubt, but yet convinced that my doubt is insignificant compared to God’s faithfulness.
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I want to talk about the trajectory of faith: how every scripture, vision, prayer, comment, dream that has ever been shared with me about Joel in a way that impacted me has pointed toward life and glory. How I have never once felt God preparing me to release Joel to him, but how that’s not the same as having a specific infallible promise. I want to talk about knowing that heaven is good, the ultimate goal, the prize and our full and ultimate redemption, and how, entirely believing that, I can not make peace with cancer carrying Joel to heaven.
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I want to explore all of these things in a deep and meaningful way, but as you can see, there are too many thoughts. They circle and build, and then they are crushed by a fleeting thought, a “what if” a “how will we ever,” and while I refuse to dwell on those thoughts I remember that they are also not strong enough to be my downfall.
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We wonder what to tell our children and when. Do they need to shoulder the burden of what is coming? Or can they wait to feel those things in the moments, not anticipating the grief that likely lays ahead of all of us miracle or not?
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I can not write about each of those things tonight. I have not had time to process them fully myself, but I suspect that these same themes will pop up again once I’ve had the time to let my spirit dwell on them, for the Holy Spirit to transform them to wisdom, making them solid and weighty, not the flighty thoughts so easily torn by emotion and worry.
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Instead, I will tell you this story. As we left the hospital, four long hours after we arrived, Caleb had seen me cry much more than I would have preferred. He had asked why, and I had told him that there were new tumors and I was still processing that, leaving out the worst of everything, and glad to see that he could accept this and go back to playing with his brothers. I had searched his face for the anxiety that sometimes builds there, but it was nowhere to be found, and I was so relieved. His life was unchanged, even if mine was still shaking. We piled into the van, and when we turned on the radio, the song “speak life” was playing. Not a favorite of mine by any stretch of the imagination, not a song that had ever impacted me or mattered, but I had spent the past two days dwelling on abundant life, and as the song played my kids sang aloud, Caleb singing at the top of his lungs and Elijah piping in with a word or two every few sentences. Ryan and I are crying in the front seat, relieved to finally be able to cry since the children can not see our faces, and all the while they are singing out loud and clear, “Speak life, speak life, to the deadest, darkest night. Speak life, speak life, when the sun won’t shine and you don’t know why. Look into the eyes of the brokenhearted, watch them come alive as you speak hope, you speak love, you speak life.” They don’t know what we’re facing, they don’t know the things that we won’t be able to keep hidden from them much longer. They are just singing about life together in the car. Their joy lifts a little of our pain and intensifies a little of our sorrow at the same time, but we hear God encouraging us in a day overshadowed by so many thoughts of death to keep speaking life.

A good friend of mine wrote me a great email that I read this morning. She told me that as she read these last few posts here she really had Psalm 68 impressed on her spirit for us. She unpacked for me some encouraging words that came to her for me, and just in general spoke comfort and hope, and empathy. When I emailed her back, this is what I wrote.
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“Thank you for your email, I cried and cried to read it! You have not given me this before, and it was a very good word.
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It feels so stupid to cry now, when, if this is like before, it will all be nothing sooner than I can imagine, but I’m so weary. I feel so uncertain, and I hate that. I wish I could see the end from the beginning, and I wish it felt like enough right now to just trust the One who does see it. I know I’ll get there. I think the past six months I have just felt really done with all of this and so when it is so clearly not done it is really frustrating. I also feel like the devil is blanketing us with discouragement, and maybe it’s like this every time until I find my feet, but I really hate this part.
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I’m hopeful for Sunday that the discouragement will be broken, and at the same time I feel like I can not even dare to hope for a full and final healing. It felt so close a few months ago, and it feels so far right now. It feels like everything I’ve assumed would happen through Joel for God’s glory just will not. (And still in the back of my head I know that nothing has changed between a few months ago and now,) but suddenly hope feels foolish, and that’s not who I want to be. It’s not who I’ve been through all of this, and I feel like God has to restore my faith, because I’m not convinced I can just muster it up. I think here is where I re-learn how to praise God despite the heaviness I feel, and seek Him out when I don’t feel like it. (It’s so much easier when my default is, “wait and watch this is going to be amazing” I want to feel that way again, but I know the feelings are the least important things.)”

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I wrote that to her, and I knew it was very true of how I have been feeling this past week, and that I had to post some version of it here, because the point all along was to write about the entire journey of faith, not just the times when you feel like you have it all together. I realized as I was responding to her email that I really had been very discouraged and I had not done anything to combat it. I had not dug into the word of God. I had not worshiped, or spent time praying and listening to God. I had not fought discouragement and I didn’t want to.
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That’s the thing about discouragement, and apathy, and I suppose depression though by the grace of God I have been spared that fight, by their very nature they make you uninterested in rallying back for victory. However, when I wrote it out, I identified it, and I realized that all I want in my life is to be who God says I am despite my circumstances. I want to worship in the storms. I want to choose God and faith and perseverance even more when my flesh tells me to give in. So Ryan and I talked about it. We talked about how afraid we’ve been and how little we’ve felt like praying. We talked about how the faith we’ve felt so strongly before seemed almost like a pitiful joke now, and suddenly, that discouragement had no power.
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Joel curled up in my lap in a towel after his bath this morning, and I rubbed his back and his head and sang over him, “Let God arise and His enemies be scattered.” (Because that is how Psalm 68 begins,) and after repeating it many times, I finally, and with the kind of painful effort it sometimes take to force your flesh to submit to your spirit, sang out “Let God arise and discouragement be scattered.” And I meant it. That is my quirky way of engaging in spiritual warfare, and for me it really was a war to even sing the words, because when you are feeling disappointed, discouragement feels a lot safer than hope. But I know who I want to be in Christ, and I know how I want to finish this race with Joel, and I don’t want to finish discouraged, I want to finish strong, full of faith, in Love with my God, letting my feelings about my circumstances have no bearing on the conviction of my spirit.
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And today was a very different day. I was not afraid for Joel today. The discouragement has lifted, and while I know I have not felt the fullness of the hope that faith brings, I know I will, and more importantly, I know that I really want to, and that is already so much different from how I felt before I made the choice to not be ruled by discouragement.

The morning of Joel’s last MRI, I woke up early and picked up breakfast for the family.  I was planning a sneaky breakfast so that the rest of us could eat while Joel was still asleep, (since he wasn’t allowed to eat until after the MRI.)  Several times the week before, the thought had occurred to me that things usually go wrong when we’re convinced we’re in the clear.  I knew that after MRIs every three weeks, and three months of no changes I was expecting this one to be just as uneventful, but that specific expectation was exactly what made me wonder if this MRI might catch us off-guard.  Gradually I began to expect that this MRI might be different from the others, but I just couldn’t even become nervous about it.  Lately, I’ve had very few emotions about any of Joel’s results.  They all feel so subject to God’s plan for Joel, that the days we get results have stopped being the big events they once were.

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So as I drove around town picking up breakfast burritos, God brought to my heart the level of faith I now have for Joel.  I am completely convinced that Joel will live a long life on this earth.  I was not always convinced.  I was always hopeful.  I became expectant.  I had many months of just having a “it’s possible” kind of faith.  As in, “With God all things are possible.”  Although the statement, “It’s entirely possible that God could save Joel in a miraculous and amazing way” seemed a little weak to me, I always had the sense that God was really pleased with a faith that says, “it’s possible,” and my “it’s possible” stage of faith was unexpectedly joyful.  Something has shifted for me in the past few months, and I have a faith for Joel that really does not seem to be shaken by circumstances.  I remember in the past believing Joel would live, and yet when MRIs were bad I was devastated, and when Joel was declining I was shaken.  (I was frustrated that I was devastated and shaken, I wanted not to be effected by those things, but nevertheless I was.) I never stayed in that discouraged place, I always fought my way back to God’s heart for Joel, but I hated that I was able to be moved from the foundation of faith at all.  I wanted my faith to feel stronger, more powerful somehow.  As I was driving around, thinking about this, I realized that the faith I have now feels much more solid.  It is not more emotional than it was before.  It does not feel bigger or more powerful, but it’s just something solid now.  I really don’t know how to describe it.

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I have had the experience before of praying for someone or something and having a great wave of faith come over me as I pray, and I  am passionately convinced that God is moving and the prayer will be answered.  It is exhilarating and exciting, but temporal.  Having faith that a girl will be healed from a headache on Sunday night was no guarantee that on Monday morning I would have any measure of faith for whatever I encountered.  That kind of faith feels like “grace” faith.  You are earnestly seeking God’s heart, you love Him, and are excited for him to move, and He responds by gracing you with a faith for that situation.  It is so exciting because it is so surprising, because it is outside of you, it is supernatural.  The faith I feel now is a different kind of faith.  It is not exciting, or passionate, it just is.  I know that sounds weak, saying I have a faith that just is, but then I remember I have a God who just is.  He describes Himself as “I am.”  He is.  That is all.  That “is” is not particularly flashy, emotional or powerful, but it is steady, isn’t it?  Solid.  Right now, my faith just “is.”  I know.  That’s all.  I know Joel will live.  I have no particular idea about how or when God will move on Joel’s behalf,( although mostly I’m convinced God already has and we’re just waiting to see the outcome of his action manifest with physical evidence.)

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So, on Tuesday morning, with an MRI looming, I’m thinking about this unusually solid faith that is not exciting and feels very natural, and I realize that this is the faith that is built through endurance.  This is not “grace” faith, it was not gifted to me for a moment I needed it desperately.  It was built slowly and patiently by returning to God’s heart through every disappointment we encountered.  It was formed as I was shaken unexpectedly by circumstances I hated and, then waited for God to show me how he viewed the circumstances.  I think most of us hear from God in different ways.  I tend to hear from God as I process things, either writing or talking with friends, and over time, God begins to form in me His perspective.  It seemed like after every MRI, I would have a small word or picture on my heart, (I have not been as faithful as I wish I was about describing those here on Joel’s site, but perhaps some of them were just for me to hide in my own heart, to give me comfort and build my faith.)  As the faith I thought I had was shaken, and I waited to see what God would change in my heart, and then, shifted my view to match God’s view, this “endurance faith” was growing stronger and stronger.  ”Grace” faith would come and go, but returning to God in every peak and valley was building a strong and lasting faith in me.

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So, when we got the results that Joel had a new tumor and we were coming off the trial, I was certainly sad, but I was not scared.  The news carried no stress with it.  At one point our doctor was walking out of the room and turned back to say to us, “Of course, you guys don’t even believe us when we say these things anymore,”  I smiled and replied, “Ahh, now you’ve got us figured out.”  I was not scared, but I also was not overcome with a passionate, supernatural faith.  I was simply reminded of the steady place in me, filled with faith, built through endurance and it just “was.”  It did not rise up to meet this new challenge, but it also did not shrink back at news that seemed to contradict it. Faith that simply is, founded on a God who simply is.

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I suspect these two tumor are not going to be the dramatic conclusion of Joel’s story. I imagine we will treat them with radiation, they will resolve, and we will wait for whatever comes next.  Some days, I just wish we would get the result that says, ‘Joel has twelve new tumors and there is nothing anyone can do,’ because then I know it would be time for God to reveal everything, but most days I’m just glad to have more sweet time with Joel, where we are not standing under the pressure of death encroaching against the life of God. I really do not get the sense that it is time now for a giant miracle, but I’ve been asking God for a small miracle, just a little surprise because He loves me.  I don’t pray any more for God to change his timing to match mine, and I just feel pretty strongly that right now is not His perfect timing, but I have felt like God is pleased for me to ask for a little miracle while I wait.  So that’s what I’m doing.  He is pleased, and that produces more joy in me than I know how to convey.

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I hope this post wasn’t too out there for anyone, but it has just been a long time since I’ve poured my heart out like this.  There is a special kind of vulnerability when you put on display the things God is forming in your heart, especially the odd things, the things that seem to fit exactly how you think but might not resonate with anyone else.  Mostly, what I wanted to do was write about faith that forms unbelievably slowly through endurance, and while it does not feel powerful it carries a strength that can not be shaken.

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James 1: 2-4 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

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Romans 5:1-5 Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. 5And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.