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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.

I am really struggling tonight. I keep expecting us to find our feet, for us to rise up, strong in faith, and continue our lives as if nothing has changed. (I know this is just day two, and logically I really understand that it is reasonable for us to still be grieving from the news we received, but I am annoyed at my inability to shake this.) Honestly everything feels worse late at night when I get tired, so I should be going to bed earlier and not writing while I am sad.
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Still, the sadness is party of this journey too. Ryan and I both agree that we’re not flailing. We know we’re not panicked, we’re not even really scared. We’re just very, very sad.
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I can not imagine restarting chemotherapy again. I don’t think I’ll ever be able to put into words how imprisoning it feels to have a child on chemotherapy treatment, and how free our life felt this last year. I keep trying to remind myself that the last time we were told Joel was about to die was right before we had this amazing year.
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Joel seems so healthy. He is growing and happy and I can’t imagine watching him disappear into a weak, sick, tired child again.
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It seems like a very small thing, but as I sat down to write this I felt like the key to walking this out is to get a bigger picture for just how much God loves us. I feel like what we are facing right now is so overwhelming especially because we’re getting close to two years into fighting cancer and we are just really tired. At the same time I believe that when my picture of how much God loves me becomes bigger than how hard this road is, I will be fine.
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I’m also relearning what grief this big feels like, relearning that when I feel myself get tired and sad it is time to worship or read the bible or pray. I’m remembering how to be diligent to enter God’s rest. (Hebrews 4:11) It is a mercy to be so sensitive to the state of my spirit. I definitely know when I am feeling empty now, but I am hoping that sometime soon I can remember what it feels like to feel full.

I love to share Joel’s new accomplishments with everyone. Now, Joel can drink from a regular cup without spilling. For the last week at meals we have been giving him non-sippy-cups, and he has learned not to just dump them on himself. He is really good at only tipping it enough to drink but not enough to spill. We’re very proud of him.
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Joel will have a hearing test on Tuesday. We are hoping to get more solid results this time, by keeping Joel from pulling out the ear phones they use. We are going to distract him with a pediasure bottle and this time they will have two audiologists there to try to get a more sure result. The last test showed that Joel had mild to moderate hearing loss, but they weren’t sure how accurate it was. Please pray for an accurate reading. We have wondered if any of Joel’s speech delay could be doing to non-corrected hearing loss. You could also just pray for any hearing damage to be healed in the name of Jesus.
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Last week I posted about my kidney stones, and after talking with the doctor I have learned that they are really puzzled about how such large stone have passed as far as they have, and they can not believe I’m not in pain. They also do not believe the x-ray which shows that the very large kidney stone which has been sitting in my kidney for four years is no longer there. They want a CT scan because none of these things make sense to them and they think maybe the x-ray had it wrong and that a CT scan will offer a better explanation. Ryan and I think the CT scan will reveal that we have received a small miracle with the kidney stones. We are praising God that I am pain free!

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.

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.

Just taking a moment to feel thankful for sweet Joel. He is such a delight. Sure he throws more fits now, like you would expect of a two-year-old, especially one that can’t communicate his desires, but his nature is so sweet. Joel loves to cuddle, and he is happy so much of the time. Joel loves to laugh. He laughs so often, and when we all laugh at something and then he waits a short moment and joins in, it is just amazing because you can tell he was just looking for an opportunity to laugh with us. Joel is alive. God has been so good to us.

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!”)