Archive for the ‘ Mommy Update ’ Category

Odd little things have been rough for me, like that when we arrived home in Colorado our friends had left a vase of fresh flowers on our table, and for almost two weeks after Joel was dead those flowers were still alive, and I would look at them and think, “how are these still here, and he is gone?” Those flowers finally died a day or two ago. Our home is filled with other flowers now, beautiful reminders that people care for us.
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Tonight we took the kids to see the new muppet movie. As I sat watching trailers I realized we had watched the trailer for this movie with Joel when we took him to see the lego movie about a month ago. He had gotten to see the trailer with us, but here we were watching the movie without him.
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Most of my grief comes in small moments like that, except for yesterday, when I cried all morning and couldn’t stop. Ryan held me and told me he was jealous, that he wanted to be able to cry, to feel something. For him, the moments when he isn’t sad are much harder than the moments when he can really grieve our loss of Joel. There is much less grief than we expected, and that feels wrong somehow, because the other boys fill in the gaps, and the grief is not continuous, just many minuscule moments and a few long hours of sadness that pop up unexpectedly, but too infrequently to count on.
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Today something happened that I didn’t expect. We took the boys to dinner and the movie I mentioned earlier, and just watching them play and interact, my heart was filled with joy. My heart was so full I felt like it could burst, it was a familiar feeling, I have felt it so often, that mix of pride and joy and love, too much to contain, but I’ve always associated that feeling with Joel, not because only Joel inspired it, but because I always felt like the level of love I could contain for my family was based on the appreciation I had that we were all together, that Joel was with us, that we were whole despite Joel’s brokenness, that somehow in all the difficult circumstances we were facing we were really all ok, and I would feel like I was the luckiest mom in the whole world to have the family I had, even if no one alive would want to take my place. I knew our family was special, and Joel was such a big part of that, and tonight I looked at our family and realized it was still really special. There was still more joy than I knew how to process, and I was surprised, shocked even, to be able to feel that way still.
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I think if we could, Ryan and I would choose to delay joy, delay life, sink into grief, and yet, here it is life and joy, too much, and too soon.
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The morning Joel died, Zoe kicked me in my ribs again and again, something she had never done. It made me angry because this was not what abundant life was supposed to look like. Zoe’s arrival was supposed to mean healing for Joel, life for Joel. The reminder that abundant life was coming still felt unwelcome and ostentatious. I talked to Ryan about changing Zoe’s name. How could we call her “abundant life” now? Couldn’t we name her something that meant sorrow or grief instead? He told me, “It is important that we name her Zoe, because we want to be people who believe in resurrection life, even if it is our own hearts that are being resurrected from the dead.” He was right. Life is coming, even if everything in me wants to fight it. My greatest battle right now is not to fight the grace we have been given, not to resent the joy, even if I don’t understand it.

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.

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.

Here we are again. We come here every 8 to 12 weeks and we wait for the MRI results to declare what the future holds. Like some strange version of groundhog’s day, if we see a shadow, there will be 8 more weeks of winter. If it’s all clear, then we are blessed with 8 weeks of spring. Until of course, the cycle begins again, waiting for the doctors to tell us what the mighty MRI has to say.
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I know it really isn’t something to be flippant about, Joel’s MRIs are important; they dictate his treatment and early detection has prevented many disastrous outcomes. It’s just that I also know that we will have MRIs in our lives for the rest of Joel’s life. No matter what point of life Joel is in, my heart will face the same challenge.
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Yes, the MRIs are critically important, but God’s word is still more important. We have had MRIs declare doom over Joel and then watched as God declared life over Joel. We have had so many clear MRIs in a row that we were ready to declare “It is finished,” but the whole time God knew the fight was just beginning. I still wait for the day when the results of the MRI do not sway my heart in the least because I am so much more in tune with the only voice that matters, God’s voice, speaking over my son, whom He loves. That day may never come, but I will have lots of opportunities to practice the “Be still, and know” that I long to perfect. Every eight weeks, like clock work, I get to decide who to listen to, and on the rare days where we get a totally clear report, with no caveats or little things to keep an eye on, the joy is that much sweeter, and the resting is so much easier.
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So, we sit and wait, for the doctors to tell us how to feel. In just a few short hours our lives will change again, but hopefully we will remember that God always gets the final say.

We felt pretty good at children’s hospital on Thursday.  Our doctor usually acts pretty upset when the news he’s giving us is awful, and this time he didn’t seem that upset, and so we were feeling pretty ok about the MRI.  However, our nurses all had tears in their eyes.  Of course, they love Joel, and anything other than a completely clear scan is hard for all of us.  As the day progressed we became more and more disappointed.  We have spent the last couple days pretty frustrated.  I think for me, if it is great news we rejoice, and if it is terrible news, we stir up faith in God, but this sort of in-between news felt like an excuse to feel stressed out, sad and sorry for ourselves.  We try not to dwell their too long, and to return to faith and trusting God, but it has been a down couple of days, with a few notable and pretty neat exceptions.

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Even driving home we were both pretty sad, and then Joel, in the back seat started singing.  Sometimes, when the other children are singing, or there is music on somewhere, Joel will begin to babble loudly in a melody.  It is adorable.  However, this time the car was completely quiet except for the “what if” conversation Ryan and I were having, and Joel just began singing.  He was so loud, and at first I wasn’t sure that he was singing, but then I heard his little hands clapping too.  We were worried and sad and stressed out and Joel was singing and clapping his hands.  So, we joined him.  We sang “I will sing unto the Lord for He has triumphed gloriously the horse and the rider thrown into the sea,” and we sang, “I command you Satan in the name of the Lord to pick up your tumors (normally weapons) and flee for the Lord has given me authority to march all over thee.”  We sang loud, reminding ourselves that we are in a fight!

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I remembered how sometimes in the past I felt really called just to rest in the peace God had given me, and just a few weeks ago because of a few things God had put in my heart I wondered if I might be called to really fight in faith for Joel.  So this time, while I still feel peace.  I want to take authority and really stand in God’s promises and actively extend my faith for Joel!  I am excited for that opportunity.

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So, Thursday night, before the children went to bed, we explained about Joel’s tumor, and we taught them what paralysis was, and we asked them, “What did Jesus do when the paralyzed man was lowered from the roof?” and they answered, “Jesus healed him.”  So, we talked about how God wants to heal Joel too, and we talked about how the paralyzed man’s friends brought him to Jesus since he couldn’t get to him, and we talked about how they can bring Joel to Jesus because Joel can’t ask for himself.  We taught them how to pray with authority, how to tell the tumor that it was not allowed to stay any more.   So they laid hands on Joel and commanded the tumor to die, and it was really, really good.  Then we sang the song about stomping on satan again and we all danced and marched and stomped and jumped around, and we continue to fight for Joel and teach our children what it means not just to ask but to fight.

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In the past we’ve worried about praying for too many very specific things for Joel with the children, we haven’t wanted to damage their faith if they ask for something that doesn’t happen, but I think we’ve realized that God is bigger than that, and that He will love and pursue our children through any kind of disappointment just like He faithfully has with us.  I also see the potential for our children to grow up strong in the Lord as they see Him respond to their prayers, especially their prayers that are very specific.  I have to tell you that even though I have been walking around moping over the fact that Joel and I will be going to the hospital Monday, Wednesday, Thursday and Friday this week and Monday, Tuesday, and Wednesday the week after that and I have been complaining that I am just tired of everything, these times when I have prayed with my children for Joel have been some of the best moments of my entire life, and I know that is the right position for us to take right now!

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Joel continues to do well.  This morning in his pack in play I watched as held onto the sides and walked the perimeter again and again, those legs are still working just fine!  God has been faithful to encourage us, a friend of ours told us just last week that they had a dream of Joel walking into the church just a little bit older than he is now, maybe 4, walking straight and tall with clear eyes, still a little crossed.  At the time I was very glad she shared it, but I wondered if it was significant.  Early this morning I remembered that dream and thought, “Oh, he was walking, that’s why it was significant!”  God has done this over and over again with us, where someone tells us about a dream or a vision or gives us a prophetic word that at the time does not feel especially important, but then within a few days we receive news of a new threat that turns the word they gave before into a promise that we can hold onto.  It reminds me of all the people who in the past couple years have had dreams or visions of Joel walking or running or riding a bike, and I believe we can hold onto the fact that God sees Joel whole, not paralyzed!

I keep meaning to post that when I went to get Joel out of his crib on Thursday morning he was standing up in his crib. When I changed his diaper I stretched out his leg, fully extending it, and he did not wince or show any other sign that he was having any pain at all! Praise God! One more false alarm. Ryan and I get a lot of bad new about Joel in various forms. The pain we saw seemed like very bad news, but once again, it did not amount to anything. One day I will have to learn to hear the bad news and smile to myself and think “We’ll just see about that, because God gets the final word.”
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We marvel at all the ups and downs we have had. How many times can we see pretty amazing miracles and then be given terrible news only to be rescued from it again? We wonder what it seems like to people who are following Joel’s story. We have been hoping that our roller coaster ride of faith and disappointment and new faith may be turning some hearts toward God.
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This scripture was a key verse at church this morning, and it fits our lives so well right now that we just have to share it even though I’m sure it is familiar to most of you.
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2 Corinthians 4: 7-12
But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.