Archive for the ‘ Joel Update ’ Category

Elijah once told me, “I see my dreams in my eyes, and Joel is in my dreams, and I cry.” Last week, he woke up and asked Caleb what he had dreamed and then he went on to tell Caleb that he dreamed he played with Joel and that he slept with Joel on the top bunk. I’m so glad Elijah remembers Joel and dreams about him. I’m so glad he tells me about his dreams because I never know how to talk to him about Joel in a way that won’t confuse or upset him.
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Since Elijah’s cool dream about Joel, Isaac prays every night that he will have a dream about Joel. I pray with him every night. Isaac says he has never had a dream about Joel and he really wants to. I’ll admit I’m starting to become frustrated because I see how much Isaac wants a dream with Joel in it, and I just don’t understand why God won’t give him a sweet dream about Joel. Would you pray for this with us?
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We visited Joel’s grave today. It is only my third visit to Joel’s grave (and the kid’s second.) Honestly I haven’t been sure how we should feel about visiting Joel’s grave. We have not purchased his headstone yet, but thankfully we have funds waiting for just this purpose because people were so generous with us when Joel died so we have money to get a marker. It just isn’t something we’ve felt ready to do yet. I’m guessing no matter how long we wait, I will cry through the whole process. It has felt funny to leave Joel’s grave unmarked, but then I don’t want us to be in a habit of leaving things for him, since we know that he isn’t in the ground there, he is in heaven with God.
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So, today we decided to pick up pizza and have a picnic at his grave. Isaac does not ever want to visit the grave so he was very unhappy with this idea. However, Isaac had planted a sunflower in a cup at a kids day today and I told him perhaps he could plant it at Joel’s grave, and this idea made him happy. I gathered some things we could leave at Joel’s grave, and decided to choose things that remind us of Joel, so they are memories for us, not items “for” him. I told the boys that I knew that anything that reminds us of Joel can make us sad, but that I hope with time we can learn to be happy about having a place where we put little memories of Joel.
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We got to the grave and it started raining, so our pizza picnic graveside was a bust, instead we just put up our little memory pieces and left quickly. Isaac actually enjoyed this and hung most of the items himself. I think the short trip was good for him. It was a happy trip, there wasn’t much time to get overly emotional, even thought there were still some tears.
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We left a glow necklace from the 4th of July, because we missed Joel on the 4th of July and have a great photo of him with a glow necklace from last year. We left a few little green army men that Joel liked playing with his last week with us. We left the “big brother” bracelet we got for him at the hospital when Zoe was born. We know he would have loved being Zoe’s big brother. We also left Zoe’s hospital hat, it wasn’t particularly fancy, and was a little piece of her we could leave there, along with a giant yellow sunflower and the little plastic cup that had Isaac’s real sun flower plant growing inside. We didn’t have time to plant it because the rain got stronger and we started to hear thunder and see lightning.
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The rain kept pouring and as we drove back to Loveland it got really dark. The only light was a tiny patch of sun, far in the west. Just as we came into Loveland the sun shone so bright I couldn’t even look to the west at all, suddenly the darkness was gone and the light was so intense, and we all looked to the east and saw a giant beautiful double rainbow, more vibrant than we’d ever seen, you could see the rainbow actually shimmering down onto the field, reflecting off the grass itself. The rainbow appeared to end directly in front of us. We pulled over and took a picture.
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And just in case you are wondering, Zoe is growing and doing great, and learning to smile. Here are a few photos of her and one photo of all of us at a Rockies game recently.
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I posted here a couple months ago about my post-partum anxiety. I never would have posted anything about it at all, except I was so desperate for some relief. The anxiety was miserable, but mostly, on top of the grief of losing Joel and all the emotions and work of having a baby, the anxiety was just too much. Posting here for prayer actually resulted in a good friend of mine who is a pharmacist recommending that I look into bio-identical hormone replacement. I talked about it with my midwife and ended up using an over-the counter progesterone cream that helped a lot. It wasn’t a cure-all, I still had a few bad anxiety days, and none of my days were free of anxiety, but it was an improvement that made the anxiety more tolerable.
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I had anxiety after Zoe was born for 8 weeks, eventually I started recording in a little log how “normal” I felt each day on a scale from 1-10, my worst days were 4s, my best days were 8s. After a fairly miserable day that was a 6, I realized that I was really tired of always assessing how I felt, and never feeling ok. I decided that if I needed to look into anti-depressants, or anti-anxiety medications that would be better than continuing to put forth so much effort into just getting through each day. That day was a Saturday.
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The next day, Sunday I went to church and went forward for prayer, my pastor’s wife and a wonderful friend both came and prayed for me, weeping over me, and continuing to pray and talk with me long after the service ended. My friend had just felt like God has asked her the day before to really believe her to invest in faith, even though for her that was a really hard thing to do. (I really related to her struggle because since Joel died I haven’t known how I could ever really be invested in faith for healing for anything or anyone.) I want to be a person of great faith still, I want to see miracles. I want to see people saved from terrible diseases. I want to see people raised from the dead. But, it’s hard. Because I wanted it so much for Joel, how can I ever be as invested again? It has been hard for me to pray for physical healing for my kids or myself since Joel died. I have wondered how I could be the person I want to be, and that I believe God wants me to be, when the idea of having faith for healing is so painful right now. So, when my friend described how hard it was for her to just have faith, I understood it, I even really respected it because I could see that it was weighty to her, it cost her something. Just like it will me, when the time comes.
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I felt great that day. No anxiety. I felt like I was healed, but I didn’t want to jump to any conclusions. I wasn’t sure whether or not to keep taking the progesterone cream, and I prayed for wisdom. Immediately I realized, the cream was never enough to keep me from having anxiety anyway, so I could keep taking it, and I would still know if I was healed because I wouldn’t be having days that were 8s anymore. I decided I would take it until I had 10 days with no anxiety. 10 days came and went, and each day was well above and 8. I was healed. I quit taking the progesterone before the 4th of July. I am thankful every day that God healed me from my anxiety. I am especially thankful that when I was having my frustrating day of anxiety on that Saturday before church, my friend was being asked to really believe God, she chose to trust Him, even though it was hard. I believe that is why she was able to pray for me so effectively on Sunday. It has taught me that this is how I will be able to invest in faith again, for other people who are desperate, like I was. I will say yes when God asks me to have faith, not because it will be easy, or fun, but because it will make me ready and available for God to use me to set someone free. I can not even express how much better I feel. I’ve noticed I can grieve Joel more fully and naturally now that the anxiety is gone, too. It does mean more sad days, which is hard sometimes, but I’m glad I trust myself enough to grieve, now that I’m not afraid my emotions will spill into anxiousness.

My husband writes me amazing cards. He always has. Not just cards, he also writes amazing poetry. I try to save them, and should have been more careful about it, because I am convinced that one day “The Poetry and Letters of Ryan Green” will make a great book. I can expect Ryan to write me something if it is my birthday, our anniversary, mother’s day, Valentine’s Day, or occasionally if we’ve gotten into an argument and he feels bad. He has written me beautiful things about our life together, many of them in the past few years about Joel, and so I’ve always wanted to share them here, but I never have. This time I will. What Ryan wrote me for Mother’s Day was beautiful, and somewhat prophetic, speaking to the questions I’ve had and the pain we’ve felt. Since he wrote me this card, things have shifted somewhat, almost as if, when Ryan takes the time to thoughtfully consider me, seeking God on my behalf and faithfully communicating what comes to his spirit for me, it allows God to pour out new life into my spirit. I bring this up just because it has made me wonder what kind of potential spouses have to bless each other spiritually, if we were all more intentional about taking the time to stop and reflect with God about our spouse and our circumstances.
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I’ll post a photo of the card here, and then type out the words, because Ryan always makes his “cards” on sketch book paper, a simple illustration surrounded by the words that break my heart wide open.
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“So here we are. The air is emptier without his laugh. Yet our hearts are still full, though with a different drink. And the ride we’ve been on for so long is silent, and so also the Lord. And so we sit here in this new silence. And long for the music to start again. And the disc to spin again even if it means going round and round for many more years, for at least we would be moving and Joel would be laughing here on Earth and not only in Heaven. But in this space I sense His silence is only because He is drawing His breath. And now we know love and longing: empty and full all in one moment. I am grateful that we loved him well. And that we miss him well. And I hope that in the Lord’s next breath He will whisper His love song to you, His beloved, and that you will know Him differently and more deeply. But now we grieve in silence, yet not without His presence.”
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Part of my specific grief over Joel’s death has been that I always thought I would have a ministry of sharing Joel’s testimony. I was ready to speak and teach and declare the goodness of God, by displaying His glory in Joel’s miraculous life. When Joel died I felt untethered. I had been leading the women’s ministry at our church. I stepped away from that when we went to San Francisco, and even though no one put any pressure on me, I kept wondering how I would proceed in this particular women’s ministry and in ministry in general. Suddenly I had nothing to say. The things I felt so sure of were not givens anymore. I had so many questions and so few answers.
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Caleb and Isaac are both involved in a really incredible Christian Dance program. They take hip-hop dance lessons. Their big performance was in early May, and the entire dance concert was about joy, and so many of the songs, and almost all the scriptures displayed on the screens were about healing. I wept subtly through a lot of the performances, realzing for the first time the magnitude of my brokenness. Joy and healing were like daggers in my wounded heart. One of the dances was to the song Exodus by Bethany Dillon, the song the boys and Ryan and I had danced to over and over again in our living room. Dancing around with my boys to that song was always play with a purpose, as we sang and danced and stomped we really were declaring “our enemies are at the bottom of the sea,” but there I sat without my son, his enemy, cancer, had not been defeated, he had been ripped from our family by a terrible disease. I openly cried through the whole song. I hate to acknowledge the extent of my woundedness, but I am convinced that we don’t allow ourselves to receive God’s grace for the wounds we don’t acknowledge. Just like we come to God for salvation, empty-handed admitting our sin and our need for a Saviour, I must approach the throne of grace now, admitting the brokenness of my heart, the fullness of my disappointment and my inability to understand or do anything to heal myself apart from the grace of God. I went home after the dance concert and laying in bed with Ryan, I talked with him about all the healing scriptures during the concert, so many of them specific promises I had held on to throughout Joel’s illness. I cried and told him “I wish that had all been true for us.” That night, I told Ryan I went from wondering how or when I would be able to step back into ministry to realizing that I really couldn’t lead a ministry. I couldn’t stand before people and declare those promises, I couldn’t urge people to live in victory and authority, the way I always assumed I would. I had nothing to say, nothing to lead people toward.
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Not long after that tear-filled night, Ryan gave me the Mother’s day card, and a few days after that I was talking to Ryan about how odd I think it is that the gospel is very clear that we are to sacrifice our lives for the kingdom of God, dying daily to ourselves, and yet we preach from our churches “life application” messages, designed to improve our lives and make things easier and better for ourselves. I went on a familiar rant about how we spend years ministering to people over their broken marriage or their rebellious kids or “fill in your brokenness here” trying so hard to help them fix their life, and that I think it would be more scriptually sound to urge them to sacrifice their life instead of fixing it. I told Ryan that I wondered if, when people saw their lives wrecked, they turned their whole life over to serving God instead of focusing on fixing themselves, if God would not repair the brokenness so much more efficiently. What if our pain motivated us to give up on this life of satisfying ourselves and living for our own leisure, because our lives no longer felt worth hanging on to. Ryan looked at me, and said, point blank, “Ok, then what would you say to yourself?” I laughed uncomfortably and said, “shut up, I hate you!” (This is how Ryan and I joke.)
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As much as I brushed off Ryan’s words, they stuck with me, and in the weeks that followed I continued to think about what he had said. I do like to encourage people to live victorious abundant lives, but I have known for a while that we only receive that fullness of life, that assurance of victory by sacrificing our lives. I realized that the message I want to share, that all of us need to be laying our lives down, is a message I am now uniquely qualified to share. Who was I to tell someone in the midst of the greatest pain of their life to stop trying to make their life more, but instead try to make their life less? Suddenly, I have permission to say to someone, “I’m sorry your life has been so crummy, give it away.” It’s a harsh message. I know that. It is too harsh of a message to be freely shared by someone who has not felt loss. Suddenly I saw that I do have a pathway to ministry, it’s just different from the path I wanted to walk. It takes a passion of my heart and allows me to share it in a different way, a more authentic way, and hopefully in a way that does not neglect hurt and broken people but gives them the ultimate hope that we were never meant to glorify our personal happiness anyway.
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I shared my heart at a women’s ministry meeting, and told them I still wasn’t sure “when” I would re-enter ministry in a significant way, but that I think I had a clue of “how” I would re-enter ministry and it was that I would re-enter ministry empowered to speak about learning how to use the tragedy in our lives as a powerful motivator to sacrifice our lives in service to God. I suspect I have a long season of living that out before I share much about it, but it’s nice to see that pathway, even if it is dim and far off.
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As I drove home from that meeting I sang in the car, the way I do, making up songs to God, (it’s kind of our thing. I always feel most intimate with God when I’m making up songs to him like a three-year-old,) and as I drove home I sang, again and again “Holy is the Lord who loves me.” I cried again (so much crying lately) and as I kept singing it, letting the meaning of the words soak deep into my spirit, I realized that as broken as I am, I know that God loves me and I know that He is holy, He is perfect, He is righteous, so even though I can’t, in my limited understanding, always reconcile those two things with Joel’s death, I know them to be true anyway. With that deep knowledge that “Holy is the Lord who loves me” I felt like God was beginning to speak to my heart again. As Ryan said, God was drawing his breath. He is not finished; He is just beginning, which is good, because there is a lot of work to be done in me.

There are so many different kinds of sad. I learn new ways to miss Joel every week. Tonight was a raw kind of sadness that made us all feel like no time had passed at all since Joel died. I was going through papers and came across a sweet card someone had written Joel for his third birthday. It was written to him, and I realized I didn’t know what to do with it. I had kept all the cards people had written to Joel when he was sick, because when he was old enough to understand, but not remember, his illness I was going to let him read all the cards people had written him. I always imagined what it would be like to explain to Joel how much his life had meant to so many people, and let him read the things people had written to him, the prayers people had prayed for him. I spent a lot of time praying that Joel would have a real and intimate relationship with God, so that the stories of his miracle did not become a burden to him, something he was told about but didn’t feel for himself, a legend he couldn’t quite live up to. So, I looked at that card and sobbed, and explained to Ryan that I didn’t know what to do with all those things now. So I kept it. For now, if I’m not sure, I keep it, and I can decide in the years to come if it is helpful to have these things to look at and remember.
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Keeping that card reminded me there were things I didn’t have to keep any more, medical statements, pump instructions, study disclosures, medication information forms, old prescriptions, old bills. I had kept so many papers that we didn’t need, and that had absolutely no emotional value to us, and yet, even as I went to throw them away, it sparked a new emotion in me. I thought about how satisfying it would have been to throw all those same papers away had Joel been healed or cured. Instead, I was filled with the pang of a future joy, stolen before we could know it.
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When I went back to the living room, Caleb and Ryan were on the floor. Ryan held Caleb in his arms, and I could tell they had been sitting this way for a while. Caleb had heard me cry about the birthday card, and so I joined them, and we sat on the couch, holding each other, talking and crying. I told Caleb how proud I was of how hard he has worked this year, he has had so much make-up work to do, from recent illnesses and his long absence in San Francisco, and he has worked many hours catching up on a lot of it. He was in the middle of school work tonight when he was interrupted by our shared emotions. I also told him that he was so special and that I loved him every bit as much as I loved Joel, and that I loved knowing him and what he thinks about, I love the questions he asks, and the things I get to see him be good at. I told him that even though I am sad I never got to know Joel the way I wanted to, that I wanted to appreciate even more that I do get to know Caleb, and Isaac and Elijah and Zoe. I reminded him that we get to love and appreciate each other in a way that most families never will, because we won’t take each other for granted. We’ll know it’s amazing to get to listen to each other, hold each other, cry together and learn more every day about our family.

Thank you everyone for your comments about anxiety, it has helped a lot. I actually started just some over-the-counter progesterone cream and more vitamins and fish oil and my anxiety has decreased a lot. Honestly, I think that now I am experiencing almost no anxiety but just a general fear of anxiety (fear that it will return, or get worse, fear that if I don’t get enough sleep or get too emotional about Joel my anxiety will return in a way that I can’t manage etc.) These concerns are more fleeting each day, and I’m not sure whether the cream and vitamins or just the passing of time since I had Zoe has more to do with things getting better, but I am glad.
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We have been living at the doctor’s office lately with normal checkups for Elijah and Zoe, strep throat appointments for Ryan, Caleb and Isaac, a major stomach bug for Caleb and Isaac and now Caleb has had an allergic reaction to the antibiotic he was taking for the strep throat. He has giant hives all over his body, they get worse each day now, he has swollen feet and joints that are painful, and this morning the itching has become unbearable for him. He just shivers and cries as the itching gets worse. It is terrible to watch. Pray for Caleb that his suffering would decrease. We pray for him to be healed, but that is still a tough prayer for us to pray.
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I have more to write in a “mommy questions” post soon, good things.

Zoe Grace Green was born on Saturday April 26th at 10 am. She weighed 8 pounds even and was 21 inches long. She is beautiful and wonderful and we love her very much. We have all enjoyed our time adoring her.
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Her arrival has made Ryan and I more emotional about Joel. Our family is so different now and it makes us miss Joel and wish he was here even more. He would have loved her!
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We have taken so many photos of her. I will post some this week.
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A quick prayer request for me. When I was pregnant with Joel and for almost a year after I had him I experienced anxiety for the first time in my life. It dwindled after a year and I pretty much only ever experienced anxiety after that when I took pain medication, (basically the drowsy/loopy feeling you get on pain medication makes me anxious.) So, I avoided major pain medications with my c-section so that I could avoid anxiety and just took ibuprofen. However, I have experienced some mild anxiety off and on anyway since I had Zoe, especially when I’m overly tired, and then feeling too tired makes me fight sleep and my anxiety grows. It is terrible. I’ve been trying to get enough sleep, but with a newborn that is a tough task. Would you please pray for me? I really don’t want to have any more anxiety. I’ve been hesitant to try medication for anxiety because most anxiety meds are sedatives that make you drowsy and so I worry that they would end up increasing my anxiety instead of stopping it. If anyone has a similar experience of becoming anxious specifically when you feel drowsy and took a medication that helped I would love to hear about it, but mostly I would love to be free from anxiety because Jesus’ death on the cross was enough to set me free. So please pray. Thank you.

I have written once or twice in the past about Ryan’s work developing a video game about Joel.  If you missed those posts, I’ll try to be brief in catching you up.

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When Joel was first terminal, four years ago, we weren’t sure how much to tell Caleb and Isaac about Joel and death and heaven and what the doctors had told us.  In a tear-filled phone conversation with my dad, as I walked around the hospital parking lot, he told me, “If Joel does die, it would be really great if your boys could know that Joel fought well and God said he earned his rest.” (Of course since it’s been four years I’m not sure those were his exact words, but it was something along those lines.)  Ryan and I talked about this and began to tell the boys a bedtime story about the warrior Joel who was fighting a fierce dragon named cancer.   We told the story a little at a time, but we always left the ending hanging.  If Joel wins so much the better, if Joel loses, the stage was set for a conversation about a valiant, courageous fight that ended in God saying “well done, you fought hard, welcome to paradise.”

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Of course, Joel lived four more beautiful years, and in that time, our boys outgrew our bedtime story and were able to digest more of the reality we were all facing together, but the fairy tale we had begun had a place in our hearts and we talked about wanting to create something out of it.  We talked about a film, or a book, but in the end Ryan’s friend Josh agreed it would make a great video game, and told us he was willing to take six months and work on it with Ryan, unpaid.

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In November of 2012 Ryan and Josh began working on “That Dragon, Cancer” a video game about Joel, our family, and an epic fight with cancer.  It was always more art-piece than game.  A way to express the hope we felt in the face of death.  I had planned on Ryan working on the game for about two months, but after that I knew he would need to find more freelance programming work.  It would be irresponsible for us to let our savings dip too low, while Joel was still fighting cancer and we had insurance premiums and a mortgage to keep up.  Two months came and went, and I realized I really believed in what Ryan and Josh were doing.  I could see Ryan stepping into his calling, using all his gifts and talents to craft a story that could show people the grace of God in a tangible way.  I couldn’t imagine him going back to work for other people on projects that didn’t mean anything to us.  In a giant step of faith, we decided he could just keep working on “That Dragon, Cancer.”  We would live on our savings and trust God to provide for us before we ran out of money.

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Ryan and Josh took a demo scene from the game to a conference in California in March of 2013.  (At this point we had gone from about six months of savings to around two months of savings, making our finances stretch a little through contest winnings, very small side-projects, and generous financial gifts.)  The scene was a portrayal of Ryan and Joel in the hospital, based on a night when Joel was very dehydrated, but vomited anything we gave him.  That specific night always stuck with Ryan because he felt so desperate and helpless, but ultimately God met him in that hospital room, giving Joel peace and Ryan grace.  When members of the media played this demo scene they fell in love with the game. Ryan and Josh had succeeded in capturing the emotion of that night and letting gamers step into Ryan’s shoes for a few minutes. Much of the success of the demo was due to the help of a local composer, Jon, who volunteered his time beginning one week before the conference and in that short time elevated the demo to new heights; he has been an essential part of the development team ever since. We were shocked by the attention that simple demo scene received, and  within four months Ryan and Josh had funding for the game for a year for a team of four developers (which has now turned into five developers.) Our two months of savings had stretched that four months because of even more generous gifts of friends, family and even strangers who believed in what we were doing.

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Since July of 2013, Ryan has been able to work on “That Dragon, Cancer” as his full-time, paid job.  We always believed as they crafted the game they were building a stage for an incredible testimony that was still unfolding.  It was exciting to believe that God could use the medium of video games, and the instrument of personal testimony to change people’s hearts.  The development team took the game to more conferences and shared it with video game enthusiasts who frequently cried and hugged them and talked about people they had loved and lost.  It was an amazing experience for the entire team to be able to connect with strangers in such an intimate way, all because of a video game.

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Now I’m not sure what “That Dragon, Cancer” will be.  God has opened so many doors, and provided so much unmerited favor as the project continues to be in development.  I know His heart is behind this game, but I also know now that it will not be the stage for a testimony of an unbelievable healing.   However, the new identity it has taken on in the last three weeks is a way for Ryan to memorialize his son, to mourn and create and remember.  He wants to capture what it was like to love Joel, and introduce Joel to the world.  Ryan gets to be paid to mourn our son.  It is a grace I can not appreciate enough.  He gets to make his work a tribute to Joel.  I don’t know how Ryan would have been able to go back to any other job.  At this point, even if the game were a total flop that no one ever played and that never moved anyone’s heart closer to God, it would still be one of the biggest miracles of my life that Ryan was able to spend this year and a half creating something that reflected his love for Joel and his love of God.  I can’t imagine what this season of our life would be like if he were doing anything else right now.

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A small film crew has followed the development of the game and our family since June of 2013.  They spent the last three days of Joel’s life with us.  They are dedicated to telling the story of this game’s creation.  They have just released a very short teaser of the documentary.  We wanted to share it with you.  They are hoping to release the documentary to coincide with the release of the game.  You can be praying for both the game and the documentary, that their productions would go well and that God would use them very specifically to draw people closer to Him, even though now, it is obvious that they will reflect our sorrow.

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The website for the documentary is:  http://www.thankyouforplayingfilm.com/

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The website for the video game is: http://www.thatdragoncancer.com

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Here is the teaser for the documentary:

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Thank You For Playing – Teaser from Thank You For Playing on Vimeo.

Last week was Caleb and Isaac’s spring break. So we spent three nights at the YMCA about an hour from our home. We stayed in a little two bedroom cabin and went swimming and rollerskating and made craft projects. It just felt like it would be good to get away together.

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I’ve been very aware that our family as it exists now is a six week experience. In just under three weeks Zoe will be born and life will shift for us again. I wanted to make a few memories of our family now, the five of us. I’m not sure why, but it feels important to remember us without Joel and before Zoe. Regardless, the time was good for us. The boys had such an amazing time, and we always love watching them enjoy themselves. (As I write this it destroys me a little to realize that Joel missed Zoe’s birth by just six weeks. He almost got to meet her, and I wanted that for him so much.)
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The kids are doing well. They are back in school now and as far as I can tell they are really glad to be back in their routine. 99% of the time they are just normal boys, playing and joking around, but then sometimes they get to thinking about Joel and they tell us they are sad, and we talk and they ask questions and we all cry. Those moments feel very healthy, and I am proud of how willing they are to talk about and process things with us. Saturday night we talked for a long time about Joel, and Sunday morning on the way to church Isaac said, “Do you think we cried more tears yesterday or the day Joel died?” I told him I wasn’t sure but probably the day Joel died, and he said, “Someone should have counted our tears, why didn’t anyone think to count them?”
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Caleb dreams about Joel a lot, something he doesn’t love because he wakes up sad that his dreams aren’t real. We talked about how feeling sad helps you heal more than avoiding sadness.
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Ryan and I mostly marvel at how well we are doing. We are happy when we are happy and sad when we are sad, but even the sadness is good. It does not feel overwhelming or unmanageable. We do not feel broken, and we really expected to feel broken.
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Here are a few photos from our time at the YMCA.
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I just realized it has been two weeks. I still don’t have much to say yet, so I’ll wait. Eventually, I’m sure, I will know what to say about everything that has happened. In the meantime, please know that we are amazed by the overwhelming love and support and financial assistance we have been given. Many, many thank-yous are still to come, but our gratefulness continues to build. We are all well. We are less broken than we expected to be most of the time. Posts will come, sporadically I’m sure, about the kids, and us, and what God speaks to comfort our hearts eventually.
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For now, I wanted to post the slideshow we showed before the memorial service. It is about 20 minutes of photos and music. The post below this has the videos we showed during the service and the text of what Ryan and I shared.
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We began the memorial service with worship, and then we shared some of the things that Joel really loved.  If you watched the memorial live you probably weren’t able to see the videos very well, so here they are:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Here is what Ryan shared:

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

But love is good.

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

But trust is good.

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

My love for him.

My trust in Him.

Was good.

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

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

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

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

Because it is good.

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

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

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

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

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

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

I longed to be his rest.

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I learned from Joel what a good father is.

I learned from Joel the significance of the words

“Our Father who art in heaven”

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

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

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

Our Father who is our rest.

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

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“Our Father who art in heaven”

Abba

Da da

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