Archive for the ‘ Joel Update ’ Category

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

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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.)

Everyone is welcome to attend Joel’s viewing and memorial service.  We know he was very well loved.  We are planning on having a live stream of his memorial service that can be viewed here on his website.

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Joel’s viewing will be held Tuesday, March 18th from 10am to 2pm at Viegut Funeral Home, 1616 N. Lincoln Avenue, Loveland, CO 80538

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Joel’s Memorial service will be held Tuesday March 18th at 6pm at Church of the Good Shepherd, 3429 Monroe Avenue, Loveland, Colorado 80538.  We will begin a photo slideshow at 5:30pm, and the service will be followed by a light dessert reception.

We are only just beginning to make plans, but we expect Joel’s Memorial service to be Tuesday March 18th.  We will announce the exact time and location as we settle those details, possibly tomorrow.  Everyone will be welcome.

Joel took his last breath at 1:52 am.
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We took Joel to Children’s Hospital today, and it was so good just to be able to ask all our questions and get solid, directional answers. Not knowing what the declines we were seeing in Joel meant or how to handle them was becoming pretty stressful. Our wonderful nurse who we have known for over four years now, asked us about our time in San Francisco, and how Joel was doing, and then she told us that to her it was pretty obvious that Joel was really uncomfortable. She watched the way he hit his head with his hand and how he moaned and fidgeted, and told us she thought he really needed to be on continuous iv pain medication. Honestly this is a pretty big jump for us, it skips oral morphine and other oral pain medications altogether. She said that for the first 12-24 hours the iv pain meds, which are both sedatives, might make him groggy but that after that he should perk up and be more himself.
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She told us we could take out the ng tube and not give Joel any more feeds through the tube. She said that usually when people stop swallowing it is to protect them from food their bodies can no longer tolerate. She said if he seems to want something we can give it to him and if he drools it out or coughs it up that’s fine. She said we could come off the steroids over the next few days, because at most the steroids would give Joel two or three extra days, but that they are toxic, painful and cause aggravation so the extra days aren’t worth it when he could be more comfortable instead.
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She told us we could take him off the oxygen, and stop monitoring his heart rate and oxygen saturation levels but just watch him and give him oxygen for comfort, or if he seems to need it, but that it’s ok for him to be breathing less.
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We pulled out the ng tube and we agreed to the iv meds, but we stopped short of taking him off the oxygen. It was just a tough leap for us. We want Joel to be as comfortable as possible, and it’s hard to imagine that he doesn’t need the oxygen. We took him off for a few minutes and walked him around the room, but his lips turned blue pretty quickly, so we put him right back on.
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We aren’t sure about the ng tube either, even though we pulled it. We are fine with not giving him feeds anymore, but we are worried about him staying hydrated. Hospice told us they don’t usually do iv fluids, and we don’t think Joel will be able to drink enough fluids to stay hydrated on his own. Our goal isn’t to try to keep him from dying, we know that, in the end, only God can give Joel the kind of life we would want him to have, but at the same time we worry about accelerating anything by letting Joel become dehydrated.
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We asked our nurse how long she thought Joel had left, based on what she had seen and we had described, and she told us a week. We are not surprised. His decline has felt pretty rapid to us in this last week. We have talked to the children more about why we want to help Joel be as comfortable as possible, and that we know we can’t do anything now that would bring back the Joel we have enjoyed so much for the past five years, but that God could not only restore Joel to what he was, but also give him the life he has never had yet, a life that would let him run and play with his brothers, talking to them and learning to read like other 5-year-olds. We told them they can ask us any questions they have at all, even though we may not know the answers to some of them, we will always tell them the truth. They cried a little, asked a few questions, and tonight they roller-bladed and razor-scootered through the house in costumes, pulling along an inflatable t-rex. They are taking things in stride, probably better than we are.
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I wrote everything up to this point a couple hours ago, and then waited to make a few phone calls to family. In the meantime, Isaac brought Joel some water and thought he might want it. Sure enough, Joel seemed really interested. I made Isaac get him a very small cup and fill it with very little water. After Isaac left I let Joel have some and he took a few minutes but eventually drank it with interest. When he finished drinking he began gasping and choking and coughing and gurgling and it was truly terrible. I called Ryan down and we held him together and prayed that he would stop choking and be able to breathe. Eventually the choking stopped and Joel fell asleep. All of this to say, we definitely will not give Joel any more water, even if he seems to want it. As he was recovering from his choking fit Ryan and I talked more about whether or not we would give him IV fluids, and we did not come to an agreement. We will talk with our hospice nurse about it more, and hopefully come to a conclusion together.
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We know that nothing we give Joel now can bring to us the life he had, but that God can, with a word, give Joel a life he has never yet experienced. Right now, things can not go back to being ok anymore, but there is a possibility still, nearer than it has ever been, that things can be unbelievably amazing. For at least three years now I have suspected that if God was going to give us the giant, crazy miracle that I have longed for, it would be right at the very end, on Joel’s death bed. Since I have felt this way for so long, the things I see now do not make me any less hopeful than I have ever been that Joel will be healed. These hard things we are facing are not accompanied by despair. They are sad, but not horrifying, and that already feels pretty miraculous. We can’t lose more than we are losing already, but we stand to gain a great deal, in a very short amount of time, if God moves on Joel’s behalf now.