Archive for the ‘ Mommy Theology ’ Category

We have only been home from vacation for a week and a half. It feels like it has been months. We so relished being able to hit the road for a month with the family and not have to worry about anything tying us to home. There were no appointments, nothing that could cause a rush to the emergency room. We were just living out of suitcases, driving around the pacific northwest, not worried about much of anything really.
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How is it only a week and a half later and our reality has been turned on its head? I try not to ask myself why our last three vacations were quickly followed by tragic illness for Joel. It is easy to feel a little robbed of a carefree life that other people take for granted, but perhaps I’m looking at it all wrong. Maybe God encouraged us to take our trips and enjoy them knowing that rough seasons would come all too quickly. I am grateful for the special family together time we have had, especially sleeping all together in one hotel room. It felt like we were making up for all the nights one or the other of us was gone at the hospital and our older boys would comment on how they liked it when we were all together as a family. I want to jump to the conclusion that Joel’s new tumor will mean more nights that our family is separated, but my spirit cautions me not to assume this will last that long.
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I have every reason to believe that God will quickly vanquish this tumor, and that Joel will be healed so fast that I will look back and think every tear I cried was silly. I also know intimately every part of what life for our family will look like if this battle lasts longer than I’d like, and knowing what we’re up against seems to justify all the tears I’ve cried.
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These past few days I have been easily overwhelmed by simple things. I don’t feel worried about Joel, but other aspects of my life that should be totally manageable are not, so I know that there is a lot of stress that accompanies all the unknowns in our life right now. Ryan and I are quick to check how each other are doing and just trying to be extra sensitive and patient. Basically, right now, life is very hard, and I feel very fragile, but we are doing pretty well all things considered.
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Despite the stress and emotion, I feel anchored. As much as I don’t know how or when God will move, I know that He will, and it keeps me from worrying. There is a weightiness I feel, even when I don’t remember quite why, and yet it does not even come close to despair.
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We know that this past year feels worth it because of the way we love each other now, the new things we know about God’s love for us and His faithfulness, and the incredible miracles we have witnessed. We have to assume that at this time next year, we will still believe that all of this has been worth it. We have wondered why the tumor is back now, and why God’s healing seems to have happened so subtly and incrementally. We are not sure. We have proposed that maybe there are people reading about Joel who don’t know God yet, and who are watching this all take place, who are learning how much God loves us through Joel’s story as it unfolds. If this is the case, if anyone could come to realize that God loves them and wants a relationship with them because our family goes through the trial of another tumor and waiting one more time for God to deliver Joel, then we would say we are willing.
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We are willing to go through this even longer, if in the end Joel is ok, and people can see the character of God more plainly. Then I think about that, and how I am willing to sacrifice some comfort, as long as my son is ok. God was willing to sacrifice His son’s life entirely so that we could be united with Him. I am humbled at how much God sacrificed, and that He did not put caveats on his grace. He said that we were worth His son’s life, even when we were broken, even when we delighted in our own sin. I do not understand the way God sacrificed for us, and the closer I get to that kind of sacrifice willing or unwilling, the less I understand it. I am so amazed at how much God loves us, and I know that His love for us is what keeps me anchored through these rough seas. When I am overwhelmed, I plunge into the depths of God’s love and I have not found its limit yet.

I was going to begin this post with “We have a small prayer request” but then I began thinking about that adjective “small” and a conversation Ryan and I had yesterday. Most Christians know that nothing is too big for God, but sometimes we think things are too small for Him. When we begin to think that anything is too small or unimportant to pray about we are limiting our understanding of who God is. God is so big and so infinite that nothing is too small for Him. We simply can’t pray a prayer that wastes God’s time, He is infinite.
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If we believe there are things we shouldn’t bother God with in prayer, then our view of God is too small. He loves you, and He is concerned with everything you care about, even things that seem trivial. God is so infinite that He can hear and answer our every request and His ability to continue hearing and answering His people would in no way be diminished. Not only is He able to hear our small concerns without being bothered, He wants to hear them. The bible tells us to pray without ceasing. God’s heart is that for us prayer should be like breathing, so let your every concern be brought before Him from where you will find a decent parking space, to how your child can live through the night. Nothing is too small or too big.
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All of that said, our family does have a prayer request but because of how easily I began to think of it as small, I wanted to write my thoughts out here because I never want someone to look at Joel’s story and say, well what I am facing is so small compared to that.
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Joel’s eye was looking perfect, and both eyes were moving in concert with each other, but something has changed. Now Joel’s eye mostly looks crossed. Ryan and I have both noticed it in the last day or two and it is so markedly different from before that it is really disheartening. We both feel like it is hard to even look at Joel because it has gotten so much worse so quickly and it is so disappointing to see his eye not aligning properly again. We are praying for Joel’s eye to be restored. Will you join us? I want to qualify it, to say of course it is such a small thing compared to his life being saved, but then I remember that God cares about this because I care about it and He loves me.

Sometimes, Ryan and I just look at each other, bewildered and amazed that God has given us such an amazing gift. Joel is alive. We love him more than we can even really communicate, even to each other, but in our struggles to verbalize the strength of our love for Joel we can tell that we are both feeling the same thing.
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Yesterday we had a moment like that, and I told Ryan that it made me so aware of how different our lives could be, had we not chosen to pursue God on Joel’s behalf. Ryan disagreed and said it made him feel the opposite because he was so aware that he didn’t do anything to justify the blessing we’ve received.
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This is a theological line we have walked a tight rope through all year. Does God move because we act, or in His omnipotence are our actions inconsequential? Both are true. Our God is so big and so good that nothing we do could possibly add to His goodness or power, and yet, He chose to partner with us. I think of our children and how we often ask them to help us with things. When I ask my four-year-old to help me cook dinner, I am not asking him because I can’t cook dinner, or because his help could possibly do anything to improve dinner, in fact chances are his help will make dinner much messier than dinner would have been had I just acted alone. However, I ask my son to help me make dinner, because I love him and I want him to partner with me in the task, so that he can learn and grow and just so he can connect with me. If I ask my son to help me make dinner, I wait for him to help before I move forward, and I am not expecting any particular ability or strength from him. The outcome of dinner will not be in any way dependent on my son’s ability, just on his willingness to come help. God asks us to partner with him, just because He is our Father and He loves us. It matters that we agree to partner with God. It matters that we choose to act when God asks us to, not because our actions are so grand, but because our Father is so good.

While we were driving in the van today we overheard Caleb tell Isaac, “Joel was supposed to be a boy but the chemo really slowed him down and that is why he is still a baby.” “He’s a boy-baby,” Isaac said.
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It has been difficult to know what we should expect from Joel in terms of development or even if we should have any expectations at all. For a long while I felt like I should be overjoyed with any progress we saw and if I had any frustrations about Joel’s lack of progress these frustrations were only an indication of my own lack of patience or even worse my deficiency of gratitude. After all Joel is alive when we were told he would be dead. How could I ask for more?
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When we brought Elijah home from the hospital, Joel looked huge to us. It became painfully obvious that Joel was not a baby even though we still treated him like one. How else can we treat him though, when he does not walk, stand or speak?
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Watching Joel in light of Elijah those first few days we were home I became increasingly frustrated. It didn’t help that Joel was not himself, he had become very quiet, less active and was irritable, throwing fits when he was normally so easy going and happy. We wondered if he was upset about the new baby, we tried not to worry that it was a resurgence of the tumor causing these changes in him, and eventually my mother suggested that he may have just been sick as his nose had begun running while we we’re at the hospital with Elijah and she had noticed a few other symptoms of illness.
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Still my frustration with Joel’s huge developmental delays had been stirred up and quickly turned to worry. Did Joel have a hearing problem, was his vision impairing his ability to balance and to walk. Should we have been working with him more in therapy? Was something more wrong than we had realized?
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After a few days Joel perked up. The fits stopped and he became more playful and active. While he still wasn’t using any words, it seemed like he was trying harder to mimic the words we repeated for him like “more” and “hat.”
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Thursday night Caleb and Isaac were out with their dad and I had friends over who could help me with Joel and Elijah since I’m still recovering from two surgeries. Joel was hilarious. He was so curious and busy. He got into everything but in such an endearing way that my heart just melted and for the first time in a week I just enjoyed him.
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When Ryan got home I was excited to tell him how, for the first time since Elijah was born, I was just thrilled with Joel and felt the same way about him that I had always felt before…a feeling Ryan and I refer to as “stupid proud.” I imagine it is something like what God feels for us: unspeakable joy, love that feels like at any moment it could become too much to contain in this weak vessel and pride based on nothing more than the simple fact that he, Joel, is. I know most parents would describe their feelings for their children this way, but even though i had felt these feelings as a mom before, I had never felt them with such intensity or frequency before Joel’s life was at stake.
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When I was done telling Ryan how happy the night had made me, he asked me if I had noticed a change in Joel the past few days. I told him that Joel seemed much happier and I told him about the vocalizations he had been working hard at that had begun to sound like “more” and “hat” even though he only made them when directly prompted. Then Ryan told me he had begun specifically praying for Joel’s development. As soon as he said it my heart just agreed, I knew that we had not been praying enough and that prayer would be the key to unlocking Joel’s development. Ryan reminded me, “God has been so faithful to us when we pray. He has always answered our prayers; we should be praying more for Joel!” Somehow in the great mixture of relief and joy that Joel had made it, and the adjustment it took for us to return to a “normal” life, we dropped our spiritual fight for Joel. God has been amazingly faithful, and we have won a great victory, but God always has more. I believe that God wants Joel fully restored as much as I do, more even. I believe that there are more victories to be won on Joel’s behalf and that his ability to speak and walk and perhaps even the solution to his vision problem are part of these victories that are Joel’s inheritance through Jesus Christ!
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We have always named our children based on what God is teaching us in the particular season of life we are in. When we chose Elijah’s middle name, Joseph, it was because it meant “God increases” and a huge cry of our heart is that we continue to see God increase in our lives. One day we want to look back on our lives and say, “Wow, the miracle we saw with Joel was just the beginning.” We never want to look back and say, “Remember when God was so huge in our lives, back when Joel was healed, that was really something.” I want to see God increase in our lives, and I think the gentle reminder Ryan gave me that we should still be praying intently for Joel was a good first step in continuing to seek out God’s will and contend for the abundant life He has provided for us through Christ’s resurrection. We also want to learn to contend for victory in other people’s lives the way you have all contended for victory for us. We have so much to learn!

Sun. 9:26pm – 4 days before the next MRI, a narrative.

March 20, 2011 | Comments Off on Sun. 9:26pm – 4 days before the next MRI, a narrative. | Mommy Theology, Mommy Update

I walked back into the church from the parking lot, where I had been chatting with a friend, and there was Ryan sitting in the entryway with our three boys and a few of their friends. The potluck was well under way, each boy had a plate of food they were neglecting while shouting “gummy bear” at Ryan. Every time they shouted “gummy bear” Ryan obliged them with a quick, or silly, or gruff “not now Steve.” The boys all laughed their approval, and began even more aggressively with their part of the game. Within a minute of sitting next to Ryan I was tired of the game, but he kept it going without a fraction of my annoyance, even though it was obvious the “fun” had been in progress for quite some time. After a few more minutes I was quick to point out that just as soon as they finished their food they could all go run and play, spoil sport that I am!
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This whole time, Joel was leaning against Ryan with a third of a banana in his hand. Joel took consistent bites, swallowing each one, and I could not help but ask if he had really eaten all of that banana himself or if Ryan had given part of it to someone else. He told me it was all Joel, and I was amazed, overjoyed even. Joel had been swallowing food successfully for several weeks now, but usually didn’t take enough bites to make me think he could get by without his bottles each day. I began to tell Ryan how excited I was about his eating, and how just yesterday at goodwill I thought about buying a small food scale so I could weigh his food before and after I fed him to try to get an idea of how much he was eating. Something in my spirit stopped me from buying the scale as I had the thought, “That would be a lot of work, and Joel will begin eating much greater quantities of food so soon that it will not be worth it.” This thought was counter to my standing opinion, but I’ve learned to listen to that quiet voice of wisdom. I was telling Ryan this story and saying how it seemed like such a huge confirmation that I was watching Joel eat so well the very next day. I was not holding back any of my excitement, but began to sense that for Ryan, my excitement was creating some hesitancy in him. Just then, a friend walked by and asked when Joel’s next doctor’s appointment would be. I told him that it was Joel’s MRI and lumbar puncture on Thursday and explained that we were excited for the MRI and expected it to be good, but that of course something in the back of our heads worries just a little bit about the result. It is partially that unavoidable worry that makes us glad to be getting this MRI out of the way. It will just be good to know either way, but we are mostly excited because our expectations are for more good news.
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Our friend walked away and I looked back at Ryan to see that all too familiar mixture of joy and fear on his face. I could tell he was so proud of the way Joel was eating, and so nervous that somehow all the pride he had in his son could very quickly be stripped away and replaced with the kind of news that has shaken our small world time and again. At this point Joel had moved on from his banana to some nachos that he was delighted to dip over and over again into the little pocket of cheese without much concern for how much cheese made it into his mouth. Just then another person walked by, looked at Joel leaning against Ryan with his nachos, and smiled the smile that so many of us at our church share, the smile that without words says, “Isn’t this just amazing, this same boy we prayed for week in and week out when he was scrawny and sick sitting here with his dad eating nachos!” He noticed me noticing him, taking in everything his smile silently conveyed and storing it away in my heart, and he looked up at us and said, “Wouldn’t that be an amazing picture?” He walked out the door, and I looked back at Ryan my heart overflowing with joy and pride.
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Ryan was struggling, and just by looking at him I knew his feelings. I have felt them too often myself. “Another MRI, another chance to confirm the miracle God has done, our only way to see what is going on inside Joel’s brain, a new opportunity to be absolutely sure that the cancer has been routed out forever. I know what God has done already, and so why am I still a little worried? I am looking forward to this not just to confirm what we believe to be true, but also so I can just be done with never feeling completely sure. What if my worry, my concern for my sweet son is enough to rob me of the amazing thing God has done for us. What if my doubt is so big and so wrong that the miracle we have seen is completely undone before our eyes?”
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How do we, as parents answer these questions that plague us, along with countless others, “What did we do right? Did we do anything right at all? Why has God been so faithful to us and to Joel? Why do some people who believe God’s promises just as strongly as we do sometimes not see the same outcomes in their lives, and if we don’t know why, what will we ever say to them?” How do we ever silence the accusing questions that rob our peace and steal our joy?
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Ryan, closed his eyes and began to sing. “Give me faith to trust what You say, that You’re good and your love is great. I’m broken inside I give you my life. I may be weak, but Your Spirit’s strong in me. My flesh may fail, but My God You never will.”
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As I watched Ryan’s response to the unspoken questions etched on his face, my pride in him, already so full, grew until my heart almost burst. This is how we silence the questions. We remember that we were never sure of the outcome for Joel, but we were never unsure of who God was, and that all of His promises were true whether we saw the fulfillment of His promises in each of our circumstance or not. We remember that our peace has always come from shifting our focus from Joel and the cancer he was battling, to our God, Joel’s God, who conquered death and the grave, and put an end to the power of sin and disease. We turn our hearts back to God again, and when the questions, doubt, worry and concern seem so big, we look at God instead, and remember that in His presence all of our worry doesn’t seem very powerful at all, certainly not powerful enough to trump God’s desire for our lives, or His eternal promises of abundant life.
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Post Script Cultural References:
“Gummy Bear.” “Not Now Steve” are lines from the animated movie, “Cloudy with a Chance of Meatballs.”
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Here is a video of the worship song Ryan was singing to himself.
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It amazes me that it has only been a month since Joel’s last MRI. God has been really stretching Ryan and I this month. We love to just sit and talk about all of the incredible ways God has been faithful to us this last year, and when we do that we always feel peace and joy!
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There have been a lot of times though, when we worry that maybe we have declared Joel’s healing too soon, or we just struggle to accept that God has really answered all of our prayers. We did not expect it to be so hard to receive the things we were asking God to give us for so long. We are amazed that every day is still such a journey of faith because there was nothing about the last MRI that medically proved we have overcome, but something just dramatically shifted for us spiritually that day when we realized that God has again and again overcome bad news for us and made a way where it seemed like there was no way!
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God has been so faithful that is hard for us to fully receive it because we feel so unqualified to receive such a great gift! We melt every time we look at Joel, because we realize that we have been blessed more than we deserve! Last week in a bible study on Revelation I read this at the end of Revelation Chapter 2 verse 10 “Be faithful, even to the point of death, and I will give you life as your victor’s crown.” I see Joel’s life as our victor’s crown. I am always so happy to share photos and videos of Joel as he continues to grow because I believe that Joel’s life is your victor’s crown too. All of you, who have prayed for Joel, have been faithful for Joel, who could not be faithful for himself. You were faithful to the point of death. You did not give up praying for Joel even when they told us he would die, and now he lives! Praise God! It hits me new all the time that they said my son would be dead or dying now, and he is living!
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Another aspect of this that we have struggled with is “Why Joel?” We know God’s promises are true, but we also know that we live in a fallen world where many people that know and fervently believe God’s promises do not see them realized in their circumstances in the ways that they expect. There is something a little like survivor’s guilt that comes upon us sometimes because we know how imperfect we are, and we know the heartbreak of disease and fear of death for anyone still struggling against it through faith. We know that the things we have gained have been through the community of faith that God has surrounded us with from the very first moments of this ordeal! Still, I have struggled with how to answer the “Why Joel” question, even if Ryan and I are the only ones who are asking it. Tonight at a prayer night, an amazing Woman of God shared this section of scripture with our group, and for me it answered the “Why Joel” question.
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Titus 3: 5-6 “But when the kindness and love of God our Saviour appeared, He saved us, not because of righteous things we had done, but because of His mercy. He saved us through the washing of rebirth and renewal by the Holy Spirit, whom He poured out on us generously through Jesus Christ our Savior, so that, having been justified by His grace, we might become heirs having the hope of eternal life.”
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God’s amazing gift of life for Joel continues to raise up even more questions in my spirit than Joel’s battle with cancer did, but God has been faithful to answer my questions, to stretch out my expectations of how great God is, and to expand within me my trust that if through circumstances I can not predict, the battle for Joel’s life is not finished yet, God will be even bigger in the future than He has already been for us. This is a truly beautiful season for our family, made even more beautiful, I think, by the small complexities of the questions only God can answer.
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(And even though I wanted to end on that statement, as I re-read what I wrote, something in my spirit said, “God will be bigger in the future than He has already been for us, without any qualifications, not only if Joel has something more to struggle through, even if all we see from here on out is life and life more abundantly, God will just keep getting bigger to us forever!”)

I think what I struggled to say in my last long post was, I know that my God will never disappoint me. I know that my own expectations will often disappoint me. How do you have faith without specific expectations? What expectations are ok? Is it ok to expect a certain outcome but not within a specific time frame? If you are believing God but not for anything specific, that does not seem like belief to me. Can we trust that “God will do what God will do?” of course, but our trust is completely unnecessary. With or without our trust “God will do what He will do.”

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I have decided this week that it is ok for me to have specific requests, to have things I am asking God for. As long as I know that God can answer me completely outside of my specifics. Knowing that often, when he answers me outside of my specifics, His answer is better than the one I was asking for, gives me a peace that helps me overcome the natural disappointment of having specific desires that were not met.

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You all know I wanted Joel healed yesterday through a method that caused a visible change, so I could see that it was done. Truthfully, I know that we are starting chemotherapy today, and that short of them finding no cancer cells in the spinal fluid today, chemotherapy will go on indefinitely until it is no longer helping. They told us there is no chance that this protocol will save Joel’s life. So if Joel lives it will only be because God steps in and saves Him miraculously. But Joel being healed yesterday would have meant that this could all stop before it started. Joel would never have another dose of chemotherapy, his counts would never drop again. I would never watch in horror as he had a seizure, or try to adjust to how he acted on very high doses of pain medications. Healing yesterday would have meant a very happy Thanksgiving, Christmas, New Years, and the most amazing 2nd birthday part I could imagine on January 12th. It is possible Joel was healed yesterday and that the results of this lumbar puncture today will surprise everyone including me. I have no reason to expect that, but every reason to hope for it.
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After today I do not have a plan, except continuing to believe that God will heal Joel, and that somehow I will know that it has happened so that I can take him off of the palliative treatment. It is also likely that eventually the palliative treatment fails Joel and it becomes very obvious that Joel is dying and that he is healed at some point in that process. Right now, the idea of Joel being healed on his deathbed seems emotionally impossible to me. I can say that it requires a kind of strength and persistence that I am not capable of on my own. Continuing day after day in faith as Joel gets physically worse feels like the spiritual equivalent of climbing Mount Everest when I have not trained and am not acclimated to the climate or elevation. I guess if this is God’s plan than I was wrong in saying that God would have to do a miracle of healing or a miracle of grace, because He would have to do both.

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I can feel how easy it would be to let go of faith, and “come to terms” with Joel’s physical circumstances. I know this won’t make sense to many of you, but if I could allow myself to just expect Joel’s death and make arrangements without any hope of healing for Joel it would be so simple. It would be emotional and tragic but not more than other humans have coped with. It is so tempting, as each new day passes, to decide that I only believed for healing because I am Joel’s mom and I am desperate. I could easily decide that healing was not what God ever wanted for Joel, but that I just wanted it so much that I insisted on faith to avoid the possibility of Joel’s death.
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However, just the urge within me to throw in the towel shows me that it is God who keeps leading me to believe for more. On my own, I would shut down because I, more than anyone I know, like to take the easy way (often trying in vain to create one where it doesn’t exist.) Part of me wants God to just give me comfort and tell me it is time to let go. Instead, God keeps showing me the people that He is stirring to pray for Joel. God is increasing people’s faith, asking them to expect more, to ask for even greater things for Joel. People, who like me, would rather just pray for grace for us as we lose a child, instead feel God pushing them to pray for healing. Once again, when I find myself out on a limb with God, wishing that I was just sitting on the ground weeping instead of dangling vulnerably above the earth, I look around and find I am surrounded. In every overwhelming moment when I find myself disappointed, emotional or just too tired to continue, I am surrounded by God’s faithful people. You surround me with your prayers, and with your acts of faith no matter how small or how reluctant. In fact, just like the widow’s mite, some of the smallest, most reluctant acts of faith from strangers bless me the most because they only serve to highlight how much it is God who is doing this work. Every time I hear a report, and it is often, of someone who doesn’t really want to believe for Joel’s healing, but finds God compelling them to, I am reminded that what has been happening here for ten months now has never been natural, it has always been supernatural, and I believe God’s answer ,if I have the strength and persistence to wait for it, and maybe even if I don’t, will be quite supernatural indeed.

(This is a post I wrote, not sure whether I would post it. Eventually I have so many things stirring around in my spirit that I have to write to settle myself and find God’s wisdom in the midst of chaos. Ryan said, there’s truth and there’s honesty, and it’s ok to just be honest sometimes and let people see where we are, even if we’re not totally sure it is the settled truth of God we are writing. So, excuses made, here we go.)
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This has been a week of trying not to expect too much. I know how that seems. About half of you will be thinking, “You’re not expecting enough, faith is measured by our expectations and what you’ve written so far has been markedly short on stated expectations.” The other half of you will be thinking, “Don’t strive, just rest in God, and let Him carry you to His conclusion, whatever it may be.” I’m afraid that both sentiments are true, and that once again, to be right in the middle of God’s presence I will have to wrestle with a paradox I don’t understand, “resting in my huge expectations.”

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I know that the word of God is clear for me, that God’s desire is to heal. I would say God’s desire is always to heal. I would also say that I have learned in very clear terms this year that Christians experience terrible things on a regular basis, they have children get sick, they have children die, they suffer pain both emotional and physical often more than I can even imagine, and far surpassing what I have experienced. I am sure God’s grace is sufficient for them, because God’s grace has never failed me.
How do I balance my strong belief rooted in scripture that God’s healing is not only available, but the authority for it has already been dispensed, with my knowledge that so much of the time here on Earth the defeated things (pain, sickness, sin, death) seem to win.

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I have stated very little about my specific expectations for Joel, not because they are too small, but because, at least to m.e they seem too big. I can barely acknowledge what stirs up in my heart and spirit for my son, because it would open up the possibility for disappointment. I have always said that I wanted to boldly step out in faith, because the worst possible scenario was my disappointment ,and God was bigger than any disappointment I might feel and could heal me of anything that was damaged in the process of believing Him recklessly for the completely unbelievable. Somehow this time, I can’t quite go there. I am trying very carefully, with a fear of God I rarely possess, to expect God to move, but not to mix in my own expectation, to not state ahead of time what I expect God to do. I can tell God is moving, but I don’t know how specifically. I know that when God moves it will be unmistakable. (Sometimes in the past, like with the nausea or the fevers while he was neutropenic, I felt like it was important to state in advance what God had asked me to pray for, so that way when it happened, everyone would know it was something we had gained with God through faith.) I do not think it is necessary to claim what I expect this time, because there is no way anyone but God can get the glory for whatever comes next.

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I could list for you all the things I want to happen. I could write out my exact plan for the most amazing act of God I can imagine for my son. I’ll give you a hint: it would certainly involve a move of God sooner rather than later. Sure, I would like to entreat God to do everything my way, but if Jesus’ life here on earth is any measure, it is unlikely that any of this will play out in a way that I would expect. Jesus healed through so many different ways, no one could predict whether he would lay hands, speak out, tell someone to wash, spit on their tongue, I mean really He clearly had no formula, He just did what He saw His Father doing. (John 5:19) People want to offer me a formula for faith, a recipe for perfect faith that is sure to move the hand of God to work in just the way I want, but if this formula existed then we would have no use for God, and Christians would lead lives markedly free from pain and suffering. (Re-reading this I worry it may present a stumbling block, so to clarify… God has given us amazing promises that He expects us to access. Most of us, including my family, live in far less victory than we should. I believe the victory comes from finding God’s presence and living in it, and using the Word of God that is stored in our hearts, but that there is no single act or confession that will provide a shortcut to God’s will.) I believe, according to scripture, that my expectations are probably too limited, what I imagine would be best probably falls far short of God’s actual plan. “Now to Him that is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus, throughout all generations, for ever and ever Amen!” – Ephesians 3:20-21

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So, although I am afraid to write it out, I will tell you that my heart is hanging on Joel being supernaturally healed from all cancer, and that my strong desire is for him to be healed this weekend, before his first palliative chemotherapy begins on Monday, before we are asked to begin anti-seizure medication which is sitting at a pharmacy waiting for us to pick it up even as I type this, before I witness Joel experience a single symptom of this new tumor. This is what I want. This is what I can ask for and imagine, but here is what I know… I know that God is moving. I can tell that God has an ending to this story that will amaze anyone who is paying attention. I know that if God does not do what I am wanting Him to do, what He does will be better, way, way better, even if I would have a hard time acknowledging that right now. I know that once I see God move, I will not look back and wish it had been different. So, I try to put my own expectations out of mind, and ignore my own desires, and just focus on God and His faithfulness to me and to His promises.
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“For My thoughts are not your thoughts, neither are your ways My ways,” declares the Lord. “As the heavens are higher than the earth, so are My ways higher than your ways and my thoughts higher than your thoughts.” (Isaiah 55:8-9)

The similarities keep growing between now and when Joel was first diagnosed with cancer. I remember I’d wake up at 5:00am almost every morning in the PICU, not because anything woke me up, I was just suddenly awake, very awake, and I knew it was time to write an update or read the bible. Here I am, asleep at 10:30pm and up at 3am, quite awake, but I know when I’m done writing this I’ll be able to fall asleep again really easily. So the strange time on my post doesn’t mean I can’t sleep at night, I’ve been sleeping pretty well. I think it means God knows that when there is nothing at all to distract me, I’m a much better listener.
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Just like, when there is nothing else to put my hope in, I’m much more faithful. Monday, the evening we had Joel’s MRI, Ryan and I marveled at how, throughout this process we kept saying things like “Our hope is only in God, because the hope that medicine provides is only a 50% chance of survival at best, and that’s not hope, so really our hope has to be in God.” Of course, logically this was always true, but we quickly saw that, had our hearts only been hoping in God this entire time, Monday would not have knocked the wind out of us like it did. I told Ryan, “Isn’t it incredible that even though what the doctors had to offer us was terrible hope, it was still easier to rest in it than in God?” Given any choices at all, my weak heart will drift to and cling to anything else as our source of rescue. God is good, and so He still has used this year to build my faith in Him, to display His faithfulness to me over and over again. It’s not that there was never any reliance in God, it’s just that it was not nearly as much as I had supposed, and probably only as much as God Himself had been working out in me, and still it felt like an amazing, steady faith. How much in my normal day to day life do I ever really trust God alone to be my provider, if this past year with Joel has been my best example of faith in God?
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Friday we had Joel’s lumbar puncture. They were checking his spinal fluid for cancer cells. They had warned us that cancer cells in the spinal fluid would really change the choices that were available to us. Again, I wanted to say, “What choices? Nothing that has been offered to us will save Joel, we have only been given the choice between things that may each extend his life by months not years, and that have no guarantee of even working at all.” Certainly if there had been an example of a situation where Joel had no hope but God, we were already in it. I had said several times that I knew that either God will save Joel, or Joel will die, and those are the only two possible outcomes.
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Then, they called us back for results from his lumbar puncture 23 hours earlier than we expected them, and the sick feeling in my stomach meant that, once again, I had overestimated my own reliance on God alone. Sure enough, Joel’s spinal fluid showed lots of cancer cell clumps in different sizes. His tumor has metastasized, meaning that localized radiation would be pointless now. (Localized radiation meaning we would have radiated his new tumor, it would have killed that tumor entirely, and then we would have waited for the next tumor or tumors to grow, which we might have been able to radiate, depending on how quickly they grew back or how many there were.) They told us we could still enroll Joel in a clinical trial, (all the clinical trials open across the country for brain tumors right now are stage one trials, meaning they are testing for side effects, safety, and dosing. These studies are not designed to even test the effectiveness of the drug, although sometimes, extremely rarely, they help someone. The term “help” is relative since even if the drug trial we were on happened to work beautifully on Joel’s tumor, if it ever got to the point where it was approved for therapy it would be taken in combination with lots of other chemotherapies and radiation.) Our doctor told us that while the study was interesting to him as a scientist for the future treatment of AT/RTs, it was not compelling for him as Joel’s doctor because now that Joel’s tumor is metastasized the chance that this trial would help him goes down even more from the astronomically low chances it had of working to begin with. The only trial we were considering is in another state. We still have a few days to decide, but for many reasons, we are pretty sure we will not be enrolling in a clinical trial.
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Our doctor talked to us about palliative care for Joel. Palliative care is designed to add more time, and slow down side effects, but will never stop the disease. We can choose between palliative care and end of life care, knowing that, eventually the palliative care will not be enough to stop Joel’s discomfort, and then we will have to switch to end of life care. The doctor described to us how the loose cancer cells in the spinal fluid can attach to the pain receptors in the brain and cause constant pain like in meningitis, and that is when they would have Joel on a pump of morphine and another pain medication / anti-nausea medication that would run constantly to try to stay on top of pain levels for Joel. He described the seizures he would expect Joel to have, how to time them and all the things we shouldn’t do when Joel has a seizure. He also told us they would put Joel on an anti-seizure medicine within the next week or two to try to prevent seizures as much as possible. Giving Joel palliative care (which in Joel’s case is chemotherapy given during lumbar punctures, and an oral chemotherapy) should kill many or all of the loose clumps of cancer cells floating in Joel’s spinal fluid for now, meaning that it would be longer before we saw these terrible symptoms, but they know that eventually, when palliative therapy fails, these are the symptoms we would see.
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Before the lab results were back we were told about our hospice options, and urged to think about it, and sign up well before we needed services so that it was not a stressful experience when it came down to it. Once the lab results were back, they signed Joel up for hospice care for us the same day. We were also given a “do not resuscitate” form to sign that day. They explained that having the form does not mean we have to use it, but that without one we have no choices at all. We were suddenly faced with facts that we were hoping would come much later in this process. It was shocking for us, as I’m sure it is for you as you read this.
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Again and again as we told people about Friday they were shocked, broken and sad. Of course, those were my reactions too, but logically I couldn’t quite understand it, because between Wednesday and Friday Joel’s outcome had not changed. The difference between Wednesday and Friday was that on Friday we had one less treatment option, and a lot more facts that were just as true on Wednesday, but that we had not been told, because they hadn’t felt it was imminent enough to warrant telling us.
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I am reminded that having faith does not mean denying what is happening to Joel. Faith means, knowing exactly what is happening, and also knowing that God has a truth that trumps every other fact. Friday’s news made us shocked, broken and sad, because it was easier to believe God would win this battle for Joel when the giant Joel was facing was blurry, seen from a great distance, up on a hill very far away. Now the giant Joel is facing is close enough for us to begin to see every wrinkle, and mole. We can feel its breath. If we were confident before because we weren’t quite sure what we were facing, then our confidence was misplaced. When the giant becomes more real, then our God must become even bigger, even more real to us. Our faith must grow to match our circumstances, we must not, no matter how tempting, try to shrink our circumstances to match our perception of God. There is no giant too big, and of course, this giant has always been the same size. Perhaps there are no men who would not have responded the way we did on Friday, who would not have been shocked, sad, and broken, but I know this for sure God was not shocked. As He has been urging us to believe for something beyond what we can believe without His help, He has known the entire time every fact, even the ones the doctors still haven’t shared with us yet out of compassion. He has seen this giant. He knows the enemy inside and out, and He is not afraid.

God keeps stirring something up in my spirit.  I feel like I need to really press in for Joel’s eye.  I think I need to expect miraculous healing for Joel’s eye.  I can not tell you how tough this is for me to do, to really commit myself to this level of faith.  Just the idea of committing to this publicly makes me weepy.  I began this journey with Joel really expecting an unbelievable and unexplainable miracle, over time God has come along side us and done many miraculous things that have provided for us and for Joel in small ways that make treatment more bearable.  The things God has done have amazed me, but have not been definitive in the sense that the outside world could not easily explain them away if they were determined.

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I struggle to believe for a miracle that I can see with my own eyes.  I know that even if tomorrow Joel’s eye was 100% healed, it could still be explained away by people who did not want to believe.  I definitely understand that “signs and wonders” will never be enough to change someone’s heart who has closed the door to Jesus.  Still, somehow, this feels like a whole different level to me.  I’m not sure I fully understand what it would mean to believe for this kind of “before my very eyes” miracle and see it happen.  I have believed for this kind of thing a handful of other times, and have not seen it happen, but have seen God be faithful in the deficit.  (Part of me wonders if using the word deficit is almost blasphemous, but that is part of the great theological line Ryan and I are walking day to day.  Does God have a perfect will that sometimes doesn’t come to pass?  Can we get in the way of that will?  When God is faithful in a way that is different from our expectation is that a conciliation prize, or was our expectation misguided to begin with?  How do you accept and appreciate the faithfulness of God in small things without lowering our expectation for the big things?  Can anything really be considered “small” or “big” when it comes to God’s graciousness?)

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I think we are feeling out the answers to these questions, and learning.  I think part of me had begun to lean towards the “Whatever God chooses to do is enough” side of paradox, and leaned away from the “God has greater, bigger, more and our faith activates his promises” side of the paradox.  Ryan and I have talked a lot about how in the Chirstian faith we accept many paradoxes but when it comes to faith, most of us settle into one camp or the other.  Our life has not rolled out neatly in a single “faith” camp.  I would have done anything to force my circumstances to match my theology and keep me more on the “name it, claim it” end of the spectrum.  When I found myself living in tension between the two ends of this beautiful paradox of faith, it was hard work.  It seemed easier just to slowly settle in to the “God is Sovreign” end of the spectrum and wait for Him to show me what He would be doing next.  (I really hope this is making sense, and expresses feelings that people can relate to.)  I feel like when it came to Joel’s nausea with chemotherapy and Joel getting fevers when his counts were low and being admitted to the hospital, God stirred up in my spirit, “ask Me for this to end” and I did, and He was faithful.  Until, now when that happens  (God asking me to ask for something) it almost doesn’t require faith any more.  If God asks me to ask, it is there waiting for me.  It reminds me of when my children want a snack or a treat, and I ask them to ask me for it.  (Usually because they’re crying, or just trying to go and get it for themselves, but I think God asks us to ask because we’re not tenacious enough perhaps.)

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What has been stirring in my spirit about Joel’s eye has been a little different.  I don’t feel like it’s a guarantee, except for in as much as we are all guaranteed healing because of what Christ did for us when he conquered sin and death on the cross.  Shouldn’t that be guarantee enough?  Of course it should be.  In my head it is, but in my life, I have seen expectations go unmet by me and others.  So, a different kind of faith is required, a faith that says that my past disappointments are irrelevant to the promise at hand.  There is another aspect to this as well, a nagging feeling in my spirit that I am being called not just to activate the faith I have, but to build my faith.  I guess what I am feeling is the sense that God wants to heal Joel’s eye, but that it will take a level of faith I have not attained before, a digging in to the word of God and a perseverance in prayer.  The other strong sense that I have is that I should draw a community of faith to dig in with me.  The website is part of this, and always has been.  You have all added your faith to ours this entire time, and through this, God’s graciousness has been multiplied to us.  I think another part of this is asking people who are close to Joel and who love God and have great faith, to pray with us, and to do their part to dig deeper than they have before.  I am thinking specifically of my sister and my mother and my brother (who doesn’t even read this website, so I will have to make a phone call) who have all experienced the joy of seeing God miraculously heal in response to prayer and faith.  I believe God wants to bless them to see these same things unfold in a circumstance that is very personal and close to their hearts, but again, I think it will take more than they’ve ever invested before.  I also get the sense that other people in my life who I do not expect will join us in this kind of very intense prayer and building of faith. (So, if I didn’t mention you specifically you are still invited, I’m just not sure what this will all look like yet.)  I want to thank everyone in advance who will feel any urgency to pray for Joel’s eye, and I know that many of you already have been praying and building faith, because you got this revelation long before I did.  It is very hard for me to imagine involving so many people because it all at once makes me more vulnerable and holds me more accountable.  It is hard to imagine investing this much, and being disappointed, either because I was wrong in my expectation or did not build my faith as diligently as I should have, but this is where I have to once again set aside the pride that would try to convince me not to try.  If you don’t feel a pull to pray for Joel’s eye, please pray for me, because as much as I want to continue to be called onward and upward by the God I love it is a terrifying prospect to be asked to step things up on my end.

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For a few days now little things have been stirring up these thoughts within me.  I always give this sort of stirring a few days to settle in (probably mostly hoping it will go away.)  Last night, during prayer time before bed, Caleb and Isaac were going to prayer their typical “God please help Joel get better. Amen” prayer, but instead Caleb said “I want to pray for something different, well mom, does Joel need anything else to get better?”  I told Caleb we needed to pray for Joel’s eye to get better.  Then Caleb prayed for Joel’s eye, and said, “Mom, Can we keep praying for Joel’s eye until it is all the way healed?”  and I said yes.  Then he said, “And then, after his eye is healed, we can pray for his cancer to be healed!”  From the mouth of babes.

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So, I am going to try to be diligent, and I am going to pray with expectation every night.  (Ryan and I had a conversation the other night when I saw Ryan watching Joel intently after praying for Joel’s eye.  I said, “Are you watching to see it happen?”  He said yes.  I said, “So you’re not in the ‘A watched pot doesn’t boil’ school of healing?”  He laughed at me and said, “No, I want to see his eye healed, so I can tell people I watched it happen.”  I share this story to show you just how far I need to come, I have become so weary and nervous about this kind of miracle, that I pray and feel like I should I keep my eyes closed and not “check” because you know, peeking at the wrong time could totally undo it.  Trust me, I understand how ridiculous this is.  I fully expect to see miracles.  I have a few very specific things I believe I will see fulfilled when it comes to healing in my life and others, and I have always said that if I do not pray for someone to be raised from the dead and see it happen before I die I will be disappointed.  Somewhere my spirit knows that I am called to this level of faith, but my flesh still needs to close its eyes and try not peek.  (See now you know that when Joel’s eye is healed, two miracles will have been performed, one in Joel and one in me!)