Archive for the ‘ Mommy Theology ’ Category

Why It Doesn’t Matter What Tomorrow’s MRI Shows:
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I know many of you are praying for clear results for tomorrow’s MRI, and may I begin by saying that I am so thankful for your prayers. I am blessed to have so many people praying so fervently for my son. Your prayers are powerful and they matter. Never stop praying for great results.
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That said, I don’t personally pray for the outcomes of individual MRIs. I’m not sure if I’ve told this story before, but I have this thing I do where I imagine all the ways God could move on our behalf. I intricately plan out the steps God could take to pull off an amazing miracle. It is one of my slightly obnoxious quirks. The night before Joel’s initial tumor resection surgery, I was imagining how God could show me that Joel’s tumor was gone and we could avoid the surgery. I imagined that his eye movements would begin to synchronize, and I would know the pressure in his brain had been released. I imagined that just before the surgery began the doctor would need to double check something and ask for a last minute MRI which would show that the tumor was gone. I really didn’t want the surgeons to cut into Joel’s beautiful head unnecessarily so I stopped imagining and began to pray that for whatever reason, the surgeon would ask for a last minute MRI, but then I stopped, or more accurately, my spirit stopped me. I changed my prayer. I prayed “God surprise me!” and an excitement welled up within me like a small child on the night before her birthday party. I prayed “God do whatever would be the most glorious, just surprise me.”
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I realized on “giant surgery eve” over three years ago, that I could ask God for what I wanted, and God could do it, but there is no way that what I asked for would be the most glorious thing God could do. If we were going through this horrible, hard, scary, sad thing, I wanted us to get to see all the glory God had, not just the part I could think to ask for. (At the time I honestly believed that nothing could be more glorious than a tumor that was gone before it could be surgically removed, so I had no idea what I was really asking for, no idea that the pursuit of God’s glory through Joel’s fight with cancer could consume so much of my life.) As I prayed that prayer of “God surprise me. Do whatever will be the most glorious!” my spirit leapt within me and I genuinely believe that God was delighted in my prayer.
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Since then, I have suffered more devastating news than I ever expected to hear in my life, but the sincere desire of my heart is still that God does whatever is the most glorious, even if it means more devastating news between now and then.
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Ultimately I believe Joel will live and not die to the glory to God. I believe that Joel’s testimony will be one of life triumphing over death soundly, here, in the land of the living. So tonight, the night before the next MRI, I can say that it does not really matter what the MRI shows. If the MRI is clear tomorrow, praise God because our family is going to have a sweet and beautiful couple months. If the MRI is riddled with tumors tomorrow then praise God, because there is about to be an incredible show of God’s faithfulness like we have never seen before.
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So that’s why I don’t pray for the outcome of this particular MRI. God has shown his faithfulness to us through so many bad reports. However, I do pray about the overall outcome of Joel’s life. I pray for that a lot, even though I have a feeling God has already completed the work He is doing in Joel and we are just waiting to see it revealed. I also pray a lot for the state of my heart and for the peace of my family, because even though I know that there may be some more hard things to come before we see the fullness of God’s glory through Joel, the bad results are emotionally hard to bear. Joel’s pain, his disabilities and delays are striking. It takes time to rebuild my faith and expectation for Joel every time we hear that he is dying. This is why I did not write at the top of the page “why it doesn’t matter to me what tomorrow’s MRI shows” because truthfully, it matters a great deal to me what it shows. The report we get tomorrow has the potential to change every aspect of our lives and completely reverse the quality of life for our entire family. To me, it matters almost entirely. (But ultimately, if I believe God will win this fight for Joel, and I do, then tomorrow’s specific result is just another page in a story God is still writing. He is a wonderful story teller, and I specifically surrendered the full authorship of Joel’s miracle to God over three years ago.” I still think it’s one of the best choices I’ve ever made.

Here we are, on the eve of another MRI. Sometimes I wonder how many MRIs joel has had. We don’t count, but since they have happened every two to three months for over three years now I guess it has to be somewhere between 12 and 18, but I’m sure the number is closer to 18 than 12.
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I know I will have bouts of nervousness tomorrow. I have yet to have a completely peaceful stomach on an MRI day. For tonight, the only thing I’m feeling is peace and joy. Joel was full of life and joy today. All day long his joy was contagious. I could cry just thinking of how blessed I am, how massively blessed our entire family is, and how I’m pretty sure only Ryan and I fully understand how grateful we are for the gift God has given us in Joel, (and Caleb Isaac and Elijah too.) I could not be more proud to be their mommy.
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I am almost swallowed up in God’s love right now, and of course, the bible says perfect love casts out fear. That is how I feel, so surrounded by the love of God for me and my family that there is no room for fear. I can logically think about the very real possibility that we could get terrible news tomorrow, but even if we get that terrible news, I just can’t fear my future or Joel’s because God’s love is too big to make room for worry.
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I am also struck at how normal life is again already. Two months ago, we were told, once again, to prepare for Joel’s imminent death. A month ago he was in such severe pain that I had to hold him all day long. Today Joel is walking, playing, climbing, laughing and wearing hearing aids. Already death is just a shadow. I do not know what we will learn at tomorrow’s MRI, but I know the faithfulness of my God. I know He loves us desperately. I know that God delights in Joel. There is nothing to fear.

Sometimes in the face of unspeakably hard news it is hard to get out of bed. I don’t mean this in the way you’re imagining. It’s not that Ryan and I are so depressed that we have no motivation to start the day. It is just a feeling that while we are still awake, laying in our bed, talking, cuddling, and laughing, time is frozen. The morning after you are told your son has a new tumor and cancer has not been defeated yet in his body, there is an overwhelming feeling that the moment your foot hits the floor it all becomes real. Decisions will have to be made. Prescriptions will have to be filled. Favors will have to be asked.

So we linger in bed together. Forgetting the world. But then Isaac comes in and asks when we will get up. We tell him we are sleepy heads. We sing a very silly song I make up about being sleepy heads and laying in our beds. We grab him and tickle him and pull him into bed with us, telling him he should just be a sleepy head too. He laughs and wriggles out of our bed, for him there is too much potential fun to be had for him to lay in bed with us. We linger. We speak our private language of hope to each other: Dreaming out loud the audacious dreams of those with nothing left to lose. We imagine every miracle God can perform for Joel and wonder aloud when we will see His next strike against the enemy of Joel’s life.

Caleb comes in, a little melancholy. He asks slowly and quietly when we will get up. We explain that we are sleepy heads. He says, “But, you’re kind of already awake.” We sing our silly song in explanation, he chuckles half heartedly and tears well up in his eyes. My contacts are still out so I can’t tell for sure but it seems like something is wrong. I ask him, and he tells me it’s just his eyes are watering. I don’t believe him. We wait a minute and then it is obvious Caleb is crying. Ryan tells him, “Don’t hold it in, talk to us.” Our whole family is raw and tender right now, and seeing a seven year old who is precious and frighteningly fragile trying so hard to be tough is heartbreaking. Caleb hears our desire to be present with him and again slowly and quietly he starts, “I just really want to play…” “With your friends?” Ryan finishes for him, knowing that Caleb never likes waiting for us to get up so he can go outside to play. “No, I was wondering if we could play with you. Like, maybe a boardgame.” “Yes of course, we would love to play with you. How about you give us twenty minutes and then we’ll come down and we can play.” “Ok” he says and bounds off with an energy I’m not sure I will ever be able to match today.
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We savor our last few moments before the world begins. Reminiscing together about the little parts of the past day that we truly loved despite what we are now facing together. It is not long, the time passes quickly, but it is enough. Isaac comes back in our room and says. “Mom, it’s been twenty minutes.” “Did Caleb set a timer?” “Yep. He said to tell you.” “Alright,” we agree, laughing despite ourselves at our literal son who holds us at our word. As I sit up, Caleb is rummaging through my bedside stand, and hands me my contact case and solution.
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And it is wonderful, because in a house with four boys life continues, and drags you back into joy no matter how heavy your heart is: despite the weight of your responsibilities, you will get up and you will play.
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Nothing is really different today. Just like our doctor encouraged us, Joel is the same kid today as he was yesterday morning. Only, today, we notice every subtle wince that mars his face. I find time to sit and write all of this, with tears pouring down my face. Caleb, Isaac, and Ryan play lego rockband, I am exempt because there are only two guitars and a microphone and they would all rather play themselves than take a turn off. Before I can quite finish Joel and Elijah crawl up onto the couch, climbing on me, kissing me, laughing. Joel keeps pushing a pacifier into my mouth, and he thinks it is so funny, that I try not to really acknowledge that it must have come from under the couch because no one has used a pacifier in our home in over a year. But mommys do all kinds of gross things for their kids so I clench down on the pacifier with my teeth and shake it back and forth ferociously as they giggle, climbing on me, and pulling it from my mouth. Elijah puts it in his, Joel pulls it out of his mouth and returns it to mine, and it really is disgusting, but I would do anything to keep hearing his sorrow-shattering giggle. They kiss me, they kiss each other, they climb on top of each other and me, and I continue to type, and I continue to cry my giant silent tears, and I realize that these two are not fragile. They don’t mind my tears, they cuddle and love and play and make merry, and I can mourn everything I know this tumor costs my family in a natural way, not secluded from love but surrounded by it.

Ryan was away at a work conference these last five days, and now he is home and I am so happy. Having Ryan away while the seizure diagnosis is still so fresh was a little isolating. (I’ve been so diligent about watching Joel for any sign of change good or bad on the medication, and that’s tiring and it will just be nice to have someone to share that burden with.) Plus, I missed church last week to be in the hospital with Ryan, and this week, Caleb got pink eye Saturday night and since I didn’t want to risk exposing lots of other families to pink eye, I stayed home again. I just really miss corporate worship. I have not had a chance to just lose myself in worship since Joel was diagnosed with infantile spasms, and that process, of just acknowledging where we’re at, and worshiping God with a full heart anyway is pretty important for me every time we’re in a rough season. So, I’m in worship withdrawal, and next week, it looks like we’re really going to get to go on our anniversary trip, and I am so excited, but it’s hard to imagine another week without being in church surrounded by people who love God and love us.
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Joel had no seizure Saturday morning, and I was very excited, but this morning he had two sets of seizures, both of which seemed to really frustrate him. He acted like he was in pain, and he lost his balance each time his head nodded, and even just from a kneeling position on our bed, he fell completely to his face with each nod, until I had to just hold him laying down next to me, to stop his frustration. Even laying that way, he clapped his hands forcefully while crying and then rubbed his hands like they hurt. He winced when I touched his side, and really cried out if the blankets touched him. I don’t know if these seizures were worse in some way than the ones in the past or if there was some other reason he was so frustrated. Honestly, I don’t know if Joel was just frustrated or if he was in pain. It was a tough morning.
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Joel’s seizures have never lasted longer than thirty minutes. Yet, while he is having these seizures, especially when he is confused, angry and maybe even hurting it’s hard to trust that they really will stop. My head knows they always stop, but somewhere in my heart is a fear that says, “what if this time, it doesn’t get better?” This is exactly what our life has been like for the last 30 months. For long stretches of time, things go pretty well, even having a son fighting terminal cancer, we often feel like things are pretty under control, but then the shaking starts. We get some new symptom, a new tumor on an MRI, a new diagnosis and we realize we can not control anything, and so we wait, confused, angry and hurting for the world to stop moving under our feet. Over and over again God has stepped in on Joel’s behalf, and He has been our sure foundation, He has put our hearts right. We know that He has always been faithful, and we have seen again and again, even when things looked the worst, that God was still in control, especially when we could control nothing. I believe that Ryan and I both trust completely that no matter what we face, God will be faithful to us, He always has been, but we are human and as flawed as God is perfect. Our faith is as weak as we are, and there will always be a part of me watching the clock, wondering if this is the time things won’t get better.
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I love that God proves Himself faithful, not because we have so much faith, but because faithful is who He is. If there is one thing that has come to my heart again and again this week it is just that God said, “I am.” I’m not sure why that’s comforting, I feel like my spirit has an understanding of the importance of that statement that my mind not only can’t articulate but doesn’t even begin to comprehend. With any new diagnosis a million new questions rise to the surface, questions about the medication, short term-side effects as well as long term-prognosis, but also the impossible questions of “What if?” as we just try, however feebly, to unpack what this new infirmity for Joel might mean in terms of his quality of life, not just right now, but for years to come. Normally I evaluate each question, I try to look at each concern logically and process what I can, and ask more about the things that can’t be logically set aside. I normally take every worry or doubt one at a time until I feel sure I’m past them, but for some reason, this time around, as all the questions come, I just think “He is.” Somehow, it’s enough to just know that God is. Have we made the right decision in how to treat Joel? God is. Could these seizures have been happening longer than we knew? God is. Could everything still really be ok in the end somehow, even now? God is.
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My mind does not understand why that is an answer. My mind wants to say “God is what exactly?” My brain wants to scream out, “Those two words are like an unfinished promise, I am, they just hang there in the air, begging for something to fill the emptiness, to qualify the statement, and anyway am is a preposition, you can’t end a sentence that way!” Somehow, despite my mental acrobatics, my spirit just gets it; I feel peace, and the question doesn’t matter anymore. The question doesn’t have to be singled ou, and answered. Even though “I am” was not really an answer, it was enough. I believe we wait right now in the middle of an unfinished promise. We do not know how the future unrolls from here, but we know that God is. That may be the only answer we have for a long time, and my spirit can rejoice in that, and my mind, well at this point, it could use the rest anyway.

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!

Joel is sitting on the living room floor, sharing a giant bowl of popcorn with his brother Isaac.  Occasionaly Joel grunts a little and grabs Isaac’s hand and pulls it out of the bowl of popcorn.  After this has happened a few times, Isaac, with only the slightest note of frustration says, “Stop, it’s not just yours.”  I’m sure Joel doesn’t really understand, but he does stop, and they go back to sharing the popcorn.

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As I watch this scene, I am overwhelmed with thankfulness.  I remember all of the days when I wanted so desperately for Joel to swallow any food at all.  Even soft foods like bread and bananas he would chew up and spit out.  I remember, after months of what seemed like terribly slow progress, wondering if he would ever be able to eat normally, and here he is, sitting in front of me, eating popcorn like a champ!  It is a very small dream come true.  I have other dreams I have held on to, that Joel will walk independently, that he will be able to tell me his thoughts and feelings and ideas, so I can know him.  I have to admit, that after months of terribly slow progress, I have begun to hold these dreams a little looser.  For the first time since all of this begun, I have told people, “I am really not sure anymore that Joel will eventually catch up to his peers, and if he doesn’t, that would be ok.”  Honestly, I’m glad that my heart has grown enough to know that if my son always needs special help and is never able to communicate with me, I could love him just a much (maybe even more) than I would have otherwise.  Still, here I am, watching him chew up and swallow popcorn, like it is nothing, and in terms of choke-able foods, this feat has to be the eating equivalent of  writing a college entrance exam.

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I am reminded that the things that seem so impossible to me, usually just reflect my own impatience and short-sightedness.  I once again wish I could get a little glimpse just two or three years into the future.  Will Joel be running, climbing, telling stories?  It is so hard for me to imagine.  I am glad that God knows the plans He has for Joel, plans to give him a future and a hope.

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I am also thankful for the tender patience of Caleb and Isaac.  I remember worrying so much that this difficult season in our life would make them jealous or bitter.  Yes, Caleb and Isaac are different now because Joel has been sick, but the fruit I see in their lives is patience, compassion, gentleness.  All things I’m pretty sure it is challenging to learn in a home with just brothers.   Not only was Isaac happily sharing his popcorn, he wasn’t even too put out when his little brother tried to force him to quit eating it.  God has been so faithful to us as we walk this hard road, but even more than that he has paved the way with unexpected blessings.  Things I never knew to ask for, for myself or my children.  God is faithful in healing, and extravagantly good in the ways that he molds and shapes us to be able to hold the full glory of the work he is faithfully completing in Joel.

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I have a prayer request today.  Please pray for Ryan and for me that we will know how to raise children of destiny, to grow them up into their calling, to teach them how to share their testimony and live out their relationship with God in a public and transparent way that draws others to Him.

I hoped this week that we would find our feet. I grew restless when the peace I remembered from the past was not something I could force myself into. Now I remember why it is good that I have some times when I am just desperately sad and nothing I can do for myself can change the fact that I feel lost. It is good because, right now I am experiencing peace that passes my understanding. The peace I feel is so far beyond my understanding that Ryan and I ask each other, “Are we sure this isn’t just denial, and how do we know?” We don’t understand it. Then I remember, no, this can not be denial because I’ve tried to be in denial and it never felt like this. Plus, just a few days ago I could not have made myself feel peace no matter how hard I tried. I can not give myself peace, not through denial, not through a sheer act of will. I can not quiet the storms. God gives peace, and when He does it floors me every time.
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I have a peace that has turned into hope! I have hope that feels like excitement. My son has three new tumors, and I am excited, because I see how incredible Joel’s healing can be. I am realizing that if from here, God heals Joel it will be the most incredible thing I have ever experienced in my life. I am so excited that I find myself in disbelief that God would choose us to have this experience, that he would give us this testimony. We have a story to share with people about the God who loves us enough to give us peace in the face of death, who gives us excitement where we would have despaired. Is God giving us a story of life conquering death? I think so. Why? Because that is just the kind of story God gives. God gave Jesus to conquer death for us once and for all. When Jesus died it looked like the end, but instead it was the end of death, it was life conquering death for everyone who would choose him, forever. Death has been circling Joel, and it is coming closer this time, but I am excited because I know the kind of stories God likes to tell, and they are stories where life wins.

How do you respond, when you are told for the second time that your son is dying soon? We were not told that specifically this time, but we were told last year Joel had weeks or months to live when he had one tumor, now he has three, which is what they thought might happen a few weeks into the process last year. So, by reading between the lines a little bit, we know that Joel is on the verge of death again, but even closer to the edge this time.
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How did I respond? I held it together fairly well until we started talking about Disney World, and when the doctors told me how great it would be and how much fun we would all have I began crying and didn’t stop for a while. Then I sent a few text messages and updated the website because, I know from past experience that if I wait until we get home to write an update I am already so drained from the emotions we have processed on the car ride home and all the phone conversations and people stopping by that I take hours longer than I should to update. How strange is that really, that this time when we got crushing medical news involving our sons very life, we knew how to manage it since it had already happened a few times before?
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Before we left the hospital we were told that they found a third tumor on his MRI, this one in his brain. We leave, we call people, and I cry until I have a headache, and keep crying until I am nauseous and holding a paper bag in case I have to vomit. I cry because I love Joel’s hair and he will likely lose it from chemotherapy, and I cry because he won’t get to go swimming with his broviac, and I cry because I do not want to spend nights in the hospital with Joel away from my husband and 3 other sons, and I don’t want to spend nights at home with our 3 other sons but not Joel and my husband.
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Still, when I am honest, there is a part of me that is excited, that knows that every time something bad has happened, God has responded with something better than I can expect. Part of me is excited because I am really tired of hoping the fight is over but in the back of my head really feeling like God isn’t done yet. I am a little relieved because I have always suspected it might come down to things taking a tragic turn for the worse and God being the only answer. This happened last year, but then God’s response was so subtle, it was a wait and see after radiation and it felt like a supernatural thing that unfolded very naturally. Maybe that is how God always moves, but I just felt like there would be more. So now, three tumors and it might as well be twenty, maybe it soon will be the way this kind of tumor grows and spreads, but I guess like David, I am feeling like we have killed our bear, and we have killed our lion, and since I want to be done fighting and I know how the story goes, I am ever so slightly glad to see the giant approaching, because I believe that this is the final battle, the end of this fight is coming really soon, and I can only be glad about that because I believe we’ll win it.
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I am scared I won’t be strong enough to face the things we might have to face in the coming weeks and months, but then I remember how much grace God gave us to walk out everything we have already faced. I have never felt completely overwhelmed, and I have never felt alone. So no matter what comes next, and I truly can not even begin to guess how this will go, I know that God will never leave us. He is faithful, and this is His fight. I have peace tonight and will sleep well because just like the worship songs say, the battle belongs to the Lord.

Logically I know that nothing changes in Joel when we get MRI results, he is the same boy in nine hours that he was last week. Whatever is or is not happening in his brain has not changed, if the MRI says he has a new tumor, or tumors then he had them last week when he was taking some of his first steps, when we were clapping for him and loving him. Logically I know that MRI results have never been the final word for Joel. According to MRI results Joel should be in heaven already. So I know that if the MRI results tempt me to despair, I have lots of reasons not to give in to that fear. I have every reason to feel as much peace, joy and excitement about Joel right now at 5:30 am (while I can not sleep because I have too much nervous energy), as I felt last week or the week before. God has a plan for my son, and it is no different today than it was last week. My heart and my mind both understand that, but someone should explain it to my stomach. I have a pretty weak stomach when it comes to life threatening tumors.
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July was shocking. Joel was healed, completely healed and every month was going to confirm that more. We knew the miracles Joel had received were anything but cut and dry. Sharing Joel’s testimony was always challenging because we wanted to be sure we explained everything and didn’t gloss over the fact that Joel received radiation and the miracle was not that the tumor disappeared, but that it never came back. Never came back. That seemed key. Every time we received a new MRI it was clear, and in our minds, it had to be clear to prove that what happened with Joel was a miracle, not an unusual delay in a cancer not known to take its time. You see, Joel was healed, and so a tumor could never come back, until it did. Where do you stand, when the thing you were standing on crumbles? Joel’s tumor came back, and so either we had been abandoned, or we were basing our faith too much on the evidence of MRIs. We had to stand on God, just God and his character, not the miracle He had given. I believe when Abraham went to sacrifice Isaac He was learning to put his faith in God, just God, not Isaac, the miracle he had been given. I think it is very subtle and very dangerous when slowly shift from trusting God to trusting the thing God has given us.
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Could we trust God even when the tumor had returned? We found out the answer was yes. We had a tough night or two. I went to bed feeling like I should read the 23rd Psalm, (the shadow of death psalm) and I was literally annoyed with myself for wanting to read it, since it felt so cliched. My annoyance was probably the first thing that clued me in to the fact that it was the Spirit of God pressing me to read it, so I did. I read the Psalm that even non-Christians can quote, and found that the Word of God really is living and active. It was new to me that night, when I read, “You prepare a table for me in the presence of my enemies,” I knew that God was asking me to just wait, and not be afraid, and not even try to work up faith, or pray more and try harder. My job was just to sit at the table and feast.
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The next day at church we shared that the tumor was back and our pastor prayed for us and said he thought the focus of our prayer should be peace, and then he shared the same verse. “You prepare a table for me in the presence of my enemies.” So, we have had peace. We have feasted on life and joy and love, and Joel has thrived and we have been happy. I have worried less about Joel in these last three months than any other time since he was diagnosed. I could not have made myself relax and enjoy my son and my family, except for the fact that God prepared the table, He said, come and sit. It has been amazing.
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So, today that season of life may change. We know how this goes. We know how amazing it feels to have a clear MRI, and we know how devastating it is to find out that the fight we are tired of fighting continues. We are acutely aware of how challenging it can be to find your feet when you get the news that your son is dying. We know that sometimes the most faithful response you can have is, “Yes, but we’re all dying, aren’t we?” and know that Joel will live as long as God sustains his life, just like our other children, just like everyone to ever live, Joel will have breath as long as God gives it and not a moment longer, clear MRI or not.
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We have learned that we can still trust God when a tumor is back, and we have suspected that we would still trust God if tumors continued to come back over and over again, after all, the news can’t really get any worse than last November, can it? Today we might find out that we can breathe a little easier, because there are no tumors trying to take our son’s life, or today we might find out that we can trust God in the face of twenty tumors. My heart is ready, but someone should tell my stomach who my God is!