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I have wanted God to speak differently to me in my grief than He has the rest of my life, but God is consistent, He does not change. There is no shadow of turning with Him. I wanted God to shout to me. I wanted God to give me direct questions to direct answers. Instead, He whispers wisdom, He answers questions with more questions, none of them enough on their own, but each providing its own measure of salve on open wounds that still ache. He speaks to me the way I hear them, maybe just because I only know how to hear Him one way.
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Within a week of Joel’s death I told Ryan that if Joel was supposed to be raised from the dead, but he went to heaven and God gave him the choice, and he, in his own free-will chose to stay in heaven, I could be glad for him. I could live with Joel having changed the plan I thought was established. Of course, I don’t know. I feel like I can’t know if this is what happened, but I realized if there was even one answer I could live with, then the real answer, the one I probably won’t know this side of heaven, must also be an answer I can live with. It was a first step in trusting God that even if I don’t know “why” there is an answer that exists, and it is good.
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We have been re-reading C.S. Lewis’ “The Problem of Pain” and it has been good for us. No specific comfort, but lots of opportunities to remember again that God is God and I am not, and His perspective is infinitely beyond mine.
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I woke up two weeks after Joel died with the thought that “being uncomfortable with my only source of comfort is exhausting.” I didn’t know what to do with my grief because before Joel died, no matter how hard things got, I always eventually just rested in God’s love, knowing that He knew my heart, that I was seen and heard and fully understood. I didn’t know how to take my grief to the source of my grief. I know that God is not the author of pain, mine or anyone else’s, and yet, He was the only one who could have prevented my pain, and He did not. In my limited and selfish view there is not much difference. So, I did not pray. I did not worship. I did not rest. However, when I awoke with that thought I remembered that God really was my only comforter, and I could refuse to be comforted as long as I wanted, but I would be exhausted. I’ve never been very good at holding a grudge. The thought itself was enough for me to drop my defenses and try to learn to go to God with the hurts that I held Him responsible for, it was hard and it continues to be, but it is much easier than refusing to receive His love.
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Many people have shared things with me that have touched my heart in one way or another. I have begun to ask myself if faith produces a fruit beyond just the realization of the thing believed for. I know God lead me to have faith for Joel’s healing or resurrection. I assumed He would only ask me to have faith because He intended to honor my faith with the realization of my belief in Joel’s life. I have begun to wonder if God asked me to believe for other reasons, for the joy that hope brought in the years that we had to share with Joel, for the strength that we gained in learning that we could persist in faith, perhaps even for the deepening of relationship that will come as I renew trust in God despite the fact that He did not spare me the pain of great loss, that my faith did not result in the honoring of the promises in scripture for Joel’s healing. I don’t know if faith is designed to produce this kind of fruit, or if a righteous God can ask us to stand in faith just for these smaller purposes and not for the purpose of victory. I’m still thinking this through, but even having some thoughts to wrestle with is comforting in its own way, reminding me that there is a lot I don’t know.
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At church last week, our pastor began the sermon with this verse:
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Luke 19:41 and 42 “Now as He (Jesus) drew near, He saw the city and wept over it, saying, “If you had known, even you, especially in this your day, the things that make for your peace! But now they are hidden from your eyes. ”
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It struck my heart in an odd way that was very comforting, I could just see Jesus looking at the state of my heart and weeping over me and saying “If you only knew the things that make for your peace!” I felt like God was speaking directly to me, saying, “You really are confused. You really don’t understand. It’s ok. You can’t understand this.” I don’t know why that was comforting to me but it really was, perhaps because it is deeply sad, and full of great compassion for my frustration.
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I’m not as angry as I was. Every day I am more willing to let go of my need to understand what happened. We miss Joel in a deep and beautiful way that washes over the most joyful days like the tide coming in. Today was especially hard. Ryan and I cried throughout the Easter service and barely managed to take our annual family Easter photo, but I wanted to do it anyway even though it made us sad. We took lilies to Joel’s grave. It was our first visit there with the children since Joel was buried, (Ryan and I went last week just the two of us.) Ryan is sleeping now, and I am writing this post, because I have waited to write until I knew what I wanted to say, and I realized that I don’t really know what to say, except that God continues to speak to me in his subtle, quiet way, making me think through deeper things than I would naturally, and finding that even though I don’t have the answers, I can conceive of answers that would be acceptable to even my hurting heart.
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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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*This post was originally written on Sunday March 30th around 5am. I delayed publishing it until I had come to a conclusion about its usefulness. To read the conclusion I came to that lead me to post it here and to start a new “Mommy Questions” category of posts you can scroll down to the post before this one.*
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Early this morning I thought about Joel in heaven and realized the profound impact the glory of God must have already had on Joel. My broken Joel is whole, and I’m sure that wholeness has already changed him so much. I suspect there is a chance that I already wouldn’t recognize my son and if I believe that he will spend his time in heaven learning, maturing, becoming more like the God who created him as he is transformed by His love, and I do believe that, it means that right this moment, I am missing it. I am missing Joel growing up. I wanted so desperately to know Joel and to see who he would become, and now there is a pain much worse than Joel’s death as I realize Joel is knowable now, but not to me. Joel is becoming who he was made to be and I don’t get to witness it. Joel can communicate all of his thoughts and questions and I can’t hear them. This is, and may continue to be, the great abiding sorrow of my heart.
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I have so many questions for God and I am so resigned to never have the answers. I don’t even ask. I don’t even ask God my questions outright because I’m so sure He won’t answer me. I realize how sad that is, but it was always part of our relationship that I knew there were certain questions God just didn’t answer for me, and even though I would see Him giving answers to other people, answers He never gave to me, it was ok, because I was sure that I didn’t need the answers. He spoke to me in the way He spoke to me and it was enough. I didn’t need to have the specifics on every subject to trust Him. Now, I’m not sure I could trust Him even with every question answered, and that is my greatest personal loss in everything that has transpired. In the last year I found the sweetest, most secure trust in God I had ever known and now that priceless gift is shattered around me so spectacularly that I suspect no one will ever believe me that it was genuine and whole once. The trust I had was real. I’m convinced it was not misguided, not self-created, not inadequate, but then how do I respond to the accusation I cast myself that it was somehow not enough, even though I knew it was more-than-enough. How do I keep walking in my reality which still feels less real than the promises I held on to? As I prayed for Joel I saw that he would have an anointing of compassion, that as he taught and spoke, he could speak truths too hard for other people to speak, because his words, without having to be toned-down, would be tempered by a compassion he never even had to speak because people would just feel it, because it was an anointing he would carry. I didn’t set out to have a vision of who Joel would be, I was just praying for seizures to stop, not asking God the big questions about who Joel was and what he would be, because I never expected to have those answers, and yet, in my prayers, God urged me to pray for Joel’s life, his future, his calling. He gave me answers to questions I hadn’t asked, and now those answers plague me.
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What do I do when the future I contended for did not come about? The simplest solution would be to say that I was wrong, that God never meant for Joel to live, that He never intended to rescue him for a life here on earth, that every dream, vision, scripture, song, and word that was shared with me or that confirmed something in my spirit was misunderstood, misconstrued, falsified. The easiest solution is to say that even though I have learned to hear God the way I hear Him, to trust his voice to me, I never heard. I never understood. I was confused the whole time. But I know that is not the truth. I am confused now, I was not confused then. I am lost and unhearing now, but I was held then, I could hear Him then. I can’t describe it the way I want to, but I had a faith that was not built on myself, that wasn’t contingent on my righteousness or my miserable attempts at perfecting myself. I had a faith that was built on an unspoken promise God built slowly in my spirit over three years. Unspoken because it was the confirmation and culmination of so many intimate moments with Him, learning and changing and being sculpted into a person who could really hold the weight of what He was promising. Unspoken because it was not one word, but so many little words, little answers, whispers heavy with meaning and purpose, woven together in a way that I could not understand, but didn’t need to.
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So, now I have questions I don’t want to be asking, but the biggest is this. If God did not fail me, if He was not too weak, if He was not defeated by the devil, If His word and all its promises were not untrue, and if He was not cruel and misleading to me, then how did this happen? Something is not adding up and I need it to. I need to know that God does not fail me. I need to know that He is never too weak. I have to know that He has defeated the devil and is never subject to satan. I need to know that God’s word and all His promises are true. I have to know that He is not cruel and He did not mislead me as he lead me to believe for Joel’s healing. Those truths are central to me loving God and knowing Him, to me ever trusting Him and leading others to commit themselves to His care. If those truths are compromised than I am utterly lost. If those truths were not compromised, then Joel’s death seems impossible. The obvious answer is that God was perfect and I failed somewhere, but I can not describe enough for anyone to understand just how much the weight of my faith was never placed on me. It was never about my success. It was a confidence in who God was and what He was doing, independent of my own contributions. God was sculpting me to believe Him but never asking me to carry more than the assurance He had crafted in me Himself. There was nothing for me to fail in, nothing He was asking me to do on my own, so even if this could somehow be my failure, then my failure would still be entirely His failure, with no warning that I was somehow not fulfilling an unspoken expectation. My spirit often shouted at me not to take up burdens God had not given me, not to try to carry something God was carrying. The beauty of the trust God had given me was that it never depended on me at all. So even though the simplest and easiest answer was that I failed, it is an answer I can’t accept, because it wasn’t my test to fail.

I’ve been debating for a while how transparent to be in my posts here since Joel died. On the one hand, we have always tried to be very open about everything we felt and experienced as we were fighting in faith for Joel to be healed. We tried to write as much, if not more, about our doubts and insecurities than we did about our confidence and hope. (Truthfully I was always fairly intentional about this because I believed Joel would be healed and I never wanted anyone to ever suppose it was because we had a perfect faith. I wanted people to know that we didn’t do anything special. We had no rules or formulas. We just loved God, and trusted Him, and mostly we trusted Him to be aware of our humanness and bigger than our failings.)
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My weakness was going to show God strong. My weakness was going to bring God glory. So I always wanted to write about my weakness. Now, I worry that my weakness could injure people. Can my doubt now diminish other people’s faith? If it can, then I would rather never write another word. In the days after Joel died I told Ryan that if God can be silent so can I. But it is my trust that God will not be silent forever that makes me willing to share my questions, my hurts, my confusion. I have seen already how my questions are not unique to me. Many people who are close to us or who have followed Joel’s story have shared their frustration with me, have told me that they too struggle to pray right now. If I let the deep struggle of my heart go unsaid, after sharing the way God upheld us and sustained us, the silence might be more damaging than my weakness. If I believed that God was bigger than my failings before, I have to trust that He will be bigger than them still, and that people will join me in the deep, unknown places of anger and struggle and patiently wait for God to meet us there too.
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I don’t believe I share these posts recklessly, because I see in the bible that God loved David who shouted his anger with God in the psalms; God saw Job as a pillar of faith who questioned God to the point of receiving a Holy rebuke that somehow did not disqualify Job from being restored by the God he had accused; Jacob wrestled with God, demanding a blessing, and received it. It seems to me that God most highly esteems the hearts that aren’t afraid to really engage with Him, to accuse, shout, question, and still trust that God will not leave them alone in their frustration but that He will meet them. So I have decided to share the hard stuff too. I’m creating a new category called “Mommy Questions.” So, you can feel free to skip posts with that heading if you’d rather not wade through the muck with me.

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

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.

Thank you to everyone who came to Joel’s memorial service and supported us, and everyone who watched it live from home.  Our understanding is that anyone who watched live got to see the whole service, but that if anyone tried to view it after the fact they weren’t able to watch the actual video of the service.  We’re looking into whether or not there is a way to post the service now for viewing after the fact.

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Either way we are going to post some videos we showed as well as text of what we and others said during the service.  We would love to post that all tonight, but the truth is we are severely exhausted.  So we are going to sleep.  Sometime in the next couple days we will post these things.

Live streaming video by Ustream
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Joel’s Memorial Service will go live at 5:45pm US Mountain Time.  You can watch it here on Joel’s website tomorrow or on the ustream website.
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(We apologize for ad interruptions, they are from ustream and not from us, the streaming is a free service and ad-free services are very expensive.)