Archive for the ‘ Pictures ’ Category

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Happy Mother’s Day

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.

We have arrived home safe and sound. I was pretty nervous going into our travel day home. I don’t like to fly anyway, and I was nervous about all the things that could go wrong as we tried to get Joel home to the Denver airport. Before we could leave the hospital, they tried to draw blood from Joel’s line and it didn’t work. We tried re-accessing his port two times, once with a longer needle, and then we gave him TPA (a drug that helps dissolve clots in the port, and nothing worked.) They finally gave up on getting his counts and let Ryan and Joel leave anyway, but I imagine we will need his port working, since he is likely to require pain medicine before too long. Tylenol is working fine for now, but we want to be ready, and part of being ready is being sure we can administer iv drugs if we need to.
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Once Ryan and Joel left the hospital, Joel perked up a little. On the walk back to the hospital Joel pointed at a few dogs they passed. They arrived at the family house just five minutes before our shuttle arrived to take us to the airport, but I didn’t have time to stress out about it, because the kids and I were only ready to go ten minutes before the shuttle arrived anyway.
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We had four suitcases, two boxes, and three car seats to check, but it went smoothly and easily. Security was a breeze, and we got to the gate three hours early. (We didn’t want to take any chances.) As we waited for the plane Joel was very calm. I was just so relieved to see that he was not getting upset or anxious, even when Ryan left a time or two.
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With about half an hour to take off we got a big surprise, the entire flight crew came out to meet Joel and us. They brought Joel a crown made of airplane peanuts, a toy airplane, and a basket of snacks and toys and activity books for all the kids. They took photos with us, then they escorted us onto the plane and gave us all ice cream bars. They let all the boys go up into the cockpit of the plane. Just sitting on the plane Joel perked up. He was looking all around and really paying attention to what was happening. He seemed so excited about everything, then Ryan took him up to the cockpit too, and as soon as he sat in the pilot seat he reached for the steering stick (not the official name, I’m sure.) He really loved seeing all the lights and monitors. As the plane began to taxi he really watched the lights on the runway. For the entire first hour of the flight he was very engaged and energetic. It just amazed us.

I honestly could never have expected that our flight would go so well and that we would be treated to such a special surprise. My boys felt really special. Then our pastor and worship-pastor picked us up from the airport in a super slick bus from Summit Limousine in Fort Collins, who has blessed our family abundantly again and again. As we pulled up to the house and I stepped off the bus, and saw our van already waiting for us, I marveled at how, in the end, the entire trip home was completely stress-free, every detail was worked out for us, and we were just taken care of so completely every step of the way.
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Then we stepped into our home. Everything was so clean, nicer than we left it for sure, and as we walked around we saw that our bathroom had been painted and re-decorated, our cupboard, fridge and freezer had been filled with food, our table had fresh flowers on it and giant basket of treats. Then we went upstairs and discovered a nursery for Zoe. The room had been painted, there was a brand new crib (our old one, used when we got it, was not likely to make it through one more Green baby, as it was in pretty sad shape) decorations and things I had bought years ago for Zoe (who turned out to be Isaac) had been found and set up, along with new decorations that just delighted me. Zoe’s clothes had been placed in the closet. It was amazing because with just six weeks until Zoe comes I have really had no time to focus on getting anything ready for her.
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Then we went in the boys room and found that all their clothes had been organized and put away and there were new pictures on the wall, and things set up for them. Our room too had new surprises, a dresser from our basement had been brought up, and our closet was completely re-organized with all our clothes in-order and established. I don’t remember who saw our basement first, but they called me down and it was amazing. We had left our basement a complete disaster. When we left, there was so much dirty laundry and things were just an all-around wreck, and when we returned every single thing from our crazy basement was in a labeled bin. All our clothes had been washed and put in rooms or bins in the basement. I looked around amazed because it looked like the product of 100 hours of work, and it was something I never could have hoped to do. The boys ran around the house gasping and declaring their amazement at every new change they found. Caleb was overcome and kept saying, “it’s so nice, it’s all so nice, they did everything, I just want to cry.” Today they have loved finding their bike helmets in the “sports” bin and costumes in the “costumes” bin. They know exactly where to put their things away, and they’re excited to help their messy parents keep things nice. My understanding is that many people helped do this for us, and I am still in complete awe that our home can feel so settled, and pretty and organized. Several of my friends from church and other areas of my life worked so hard while we were away for two months, knowing that whatever conditions we returned home under, having a stress-free, clutter-free home would be important.
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They have done something for us I can never re-pay or even express enough thankfulness for, and the truth is, it is not the first or even the second time my amazing friends have done something like this for us. Ryan and I have always been so messy, and as the years have gone by, God has done an incredible, and very slow work in us, as we have learned little by little how to maintain our home better, and teach our children to live an ordered life. It is still a struggle for us, and we go through rough patches where the mess gets overwhelming again, but when I compare our life now to ten years ago I see victory everywhere, but only because our friends, many of them these same ones, have again and again, and again, so many more times than we deserved, helped us, cleaned our home, taught us little by little how to keep up with tasks we both dislike, but know are important. I’ve never seen sacrificial love on display more powerfully than the way our friends have loved us through our disfunction, always having grace for us, never growing weary when we need help again. We returned home to the most amazing gift, and I look around my home and see love and support on every wall, in every organized drawer and bin.
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We went to church this morning and it was hard to walk in the door. Everyone loves Joel so much and their emotion over him made us emotional. We cried through the first half of church and gave an update about where things stand now. When church was over people gathered around us to pray for Joel, and they lingered so long, continuing to pray, not wanting to quit, and it was such a picture to me of all the people who have persisted along side us, praying for Joel, never quitting, ready even still to persist further in faith for Joel.
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We are loved more than we deserve, and it just doesn’t stop. Our church has lined up meals for us for the next two weeks. People we have never met have deposited money into our paypal account, an amazing help since Ryan has not worked for a week now and we are unsure how long it will be before he starts working again. We are loved at every turn, provided for before the needs can even present themselves. We left for San Francisco, having received such an outpouring of blessing from everyone around us, and I never imagined we would return home the same way. God has provided abundantly for us, through the people in our community, our children’s schools, our church, our friends, and people around the world who follow Joel’s story through his website or his facebook page. I am amazed at how big our God is, it is easy to believe that nothing is impossible for Him.
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Joel remains about the same as before we left from San Francisco, we noticed a new muscle twitch in his forehead yesterday but we don’t see it today. He was not tolerating his feeds, but now we give him zofran before them and that seems to help. We have begun to work with our local hospice, but so far tylenol still seems to be enough for managing pain.
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Ok here are a million pictures of our flight and the nursery, I thought of also posting photos of our basement, but I know that doesn’t have the same crowd-pleasing cute factor of a nursery, and peanut crown.
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After our surprise birthday celebration from the hospital today, we came home, and Joel got to go and ride a horse, at an amazing local charity called “hearts and horses,” on just one day’s notice they set up an incredible experience for Joel with so many helpers and an occupational therapist to walk beside him on the horse. Joel came to life on the horse. Even at his best on steroids Joel is not quite himself. It takes more to make him smile or laugh, but as soon as Joel got on the horse he was giggly and chatty and just so happy. I cried a little at the beginning because it was so amazing to see, and Ryan cried a lot at the end. It was just wonderful in so many ways.
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Joel got to go say goodbye to a lot of his preschool teachers today, and I was glad they got to give him hugs before we left. We also did a really cool clay project at home that a friend of ours brought by. She is an art therapist at the local hospice, so we put thumb prints in clay with Joel and it was just a really special time to share together and I know we’ll cherish the end result!
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My sister and brother-in-law had us over for dinner tonight and that was such a fun time for everyone. It was a good and very busy day. We’re still up packing, but we know we need to get to sleep so we can get an early start tomorrow finishing up all the lingering tasks.
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Here are a few photos of Joel on the horse, and a short video.

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Joel Rides A Horse from Ryan Green on Vimeo.

We just got back from a two week road trip to Washington DC.  We went back and forth for several weeks about whether we could afford to go, and if we could afford to go whether it was wise to go, knowing that money would be even tighter when we got home.  (We have been living on our savings while Ryan works on a video game that shares Joel’s life.  There are so many amazing stories of the way God has supported us, and I will save most of them for a post in August, but I will say that 5 months of savings has lasted us over 9 months, the game now has a development team of four amazing men, and we are not going to have to live on our savings anymore, which is super good since there isn’t anymore left.)

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We are so glad we chose to go on the trip.  Our family always feels closer after two weeks of sharing air in a van and sleeping all in the same hotel rooms.  Ryan always tells me that taking great family trips while Joel is healthy is a huge priority for him, and I love him for that!  Just before we left on the trip we were feeling a little uneasy. We had been gradually noticing that Joel wasn’t walking much, and when he was he fell over within a few steps.  Something was definitely off enough that I asked Ryan if he had noticed and he said he had.  We wondered aloud if perhaps Joel was just really tired from chemo, or if it was something worse, something neurological.  We agreed to keep watching it, which is what we always do, the serious things always get worse, and cancer parent have a way of assigning every fleeting oddity to cancer.  At church on Sunday, the youth group was giving testimonies about the conference they had returned from.  I have helped with the youth group but was not able to attend the conference.  I was not surprised when they told about praying for a girl with back pain and watching her leg grow before their eyes so that it matched the length of her other leg and the pain stopped, and praying for a man with a limp from a snowboarding accident two years before, and his tears as he told them the pain was gone for the first time since then, and so many other testimonies.  I was not surprised because I have watched them grow in faith and love, but I was so very proud of them.  During ministry time, the youth stood in the front of the church and people went up to them for prayer.  I felt very strongly in my spirit that I should go get Joel and let them pray for him.  (I don’t bring Joel up for many alter calls for healing anymore, mostly because I believe God is doing something in His timing, but I really felt lead to go and get Joel.)  So, I pulled Joel out of the nursery at church and brought him up for prayer.  I told them about his walking, and then said that of course, they could always pray for his turned in eye or his deafness or even his tumors.  When we walked away from prayer it felt important, Joel kept looking back and signing “more,” but he can’t tell me if anything felt better or different.  Still, I noticed, he was quick to climb up on the couches, and “jump” off, and climb up again.  I couldn’t say for sure yet, but something seemed different.  Later that day, at home, Joel took off walking, around the neighborhood.  He walked farther than I’ve ever seen him walk and he didn’t slow down or fall.  Eventually I was the one who turned him back to home.  Later that evening he did the same thing, and we took this video of it.  The boy who the day before was falling every few steps, and crying a little when we would set him down to walk on his own.

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So, we began our trip with Joel feeling great.   A little miracle is a great way to begin a vacation.  A few days into our vacation, Joel started to look pretty sick. Ryan kept asking me if he was ok, and I said he was probably just sleepy. He refused all food and drink and basically looked miserable. We got to a restaurant and got him out of the van. He had a giant seizure and his head was getting warmer. When we sat in the booth at the restaurant he even refused to cuddle up against Ryan’s chest, he just laid down on the booth bench and moaned, still refusing all food and drink. It was hard for me to insist he was just tired now. I told Ryan maybe if he wasn’t better by tomorrow we needed to call our doctors, perhaps he was experiencing radiation necrosis and needed steroids. Ryan just looked at miserable Joel and said, we have to at least get to Chicago if he’s not ok. (We were just outside of Des Moines on our second day of driving.) Then we stopped and prayed for him. We thanked God that he healed Joel from whatever made him not want to walk on Sunday and acknowledged that He is the same God today as He was on Sunday. Within two minutes Joel got up and began eating ribs and cornbread and sausage. He started giggling and drinking water, it was really amazing!  We had tried everything we could think of to get Joel to eat or even drink anything, because we knew that if Joel really was sick, that was the one thing that could cancel the whole vacation. Here are the photos of Joel before and after we prayed for him.

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From there on our we pretty much just had a great vacation.  Lots of fun and new memories!  Here are some of the best photos from our trip, but you can see all of them on his facebook page that a friend of ours runs for Joel  https://www.facebook.com/pages/Im-Praying-Believing-for-baby-Joels-Miracle/289971121072

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We are so glad to be home, and really glad we went, even if it’s mac and cheese and beans and rice for dinner a few times in the next couple weeks while we let our income catch up!

We have had a very busy week.  My little sister, Joel’s aunt Sarah, got married this week.  We had family visiting all week, and I’m so glad to report that Joel was energetic for their entire visit.  (He tends to get pretty wiped out the week after chemo, but  a lot of people have been praying for him to stay healthy this week.)

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Joel will have another MRI on Tuesday.  His MRIs are supposed to be every six weeks while he is on the trial, but we’ve had to do the last couple just three weeks apart.  The result has been that I think I have finally lost my nerves about MRIs, they have become so common place that I don’t really worry about them anymore.  After this MRI we will go back to having them every six weeks.  I’m glad. I remember thinking once that MRIs could never come too often, but I guess I’ve found my limit.  We will be sure to report the result of Joel’s MRI on Tuesday afternoon.

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I’m afraid after making a lot of progress with Joel’s hearing aids I seem to have lost momentum again.  You could once again be praying for us to have God’s grace as we train Joel to wear his hearing aids.  I know they will help him a lot, but since he usually doesn’t enjoy wearing them it is a tedious process.

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Here are a few of my favorite photos with Joel from this week.

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When we got Joel’s labs on Wednesday his hemoglobin was just 8.2 (8 is the cut off for needing a blood transfusion.)  We normally don’t do labs until Friday, so for his red blood cells to be so low so early made me a little nervous.  He’s had much less energy the last couple days. A few different times toda,y as he was just laying still, he began to moan. It didn’t last long, but it was pretty unusual. I suspect his hemoglobin may already be lower, perhaps low enough to need a blood transfusion.  We’re scheduled for a clinic visit and MRI on Monday, so unless Joel becomes completely lethargic between now and then, we’ll just address it Monday.  In the meantime, you could pray for his body to start producing more hemoglobin and for his energy to return.  (Especially because we’re taking him to a fishing derby for kids with serious illnesses and their siblings tomorrow.)  We think tomorrow will be a really fun day, and we want Joel to be able to enjoy it.

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Also on Wednesday, Joel had an audiology appointment.  They tested Joel’s hearing with his hearing aids on for the first time.  They found that with his hearing aids on he can hear the full spectrum of human speech, it is the kind of results they hope for.  It was encouraging, and I’m hoping it gives me motivation to keep working with Joel on his hearing aids.  Will you pray for extra grace for us as we try to help Joel wear his hearing aids more and more often?  We have not had much momentum in this area lately, but I know it’s important.  It’s hard to make Joel do something he hates.

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Today we took the boys to go see some puppies a friend of ours is fostering.  It was such a blast.  Here are a few photos.

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Joel is four-years-old today!
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I love to throw big parties, but this year, before his last MRI, I was really looking forward to a simple no-frills family birthday party. Then, just like we do every year before Christmas, we got the news that Joel was dying. So, my simple plans were out the window, and I began to look into how I could rent or purchase a giant Barney costume for an outrageous party.
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However, Joel began to feel better a few weeks ago. His turn around helped me realize that any impulse I had to make a big deal of this birthday was just based on fear that it could be his last one. I believe Joel will live to see many more birthdays, and I wanted my actions to match my heart. There is much to celebrate this year, of course! Every birthday Joel has is a tangible reminder to us that God has been so faithful. We went swimming for Joel’s birthday. We invited family and a couple family friends. We had cake, ice cream and presents at home. It was very sweet and very normal. I loved every minute of it. I think Joel did too!
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Joel recovered so well from the surgery! By Sunday it seemed like he was back to 100%, we were amazed! He only had one dose of tylenol, right after the surgery, and never needed another one. His new port works great, it is such a relief! The old malfunctioning port was a constant cause of stress and frustration.
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God, Elijah and I had a funny moment on Sunday. Ryan had strep throat, Joel had a double ear infection, and Joel after being extremely angry for a day or two, sprung a high fever Saturday night. Sunday I took Joel to urgent care so they could look in his ears or check him for strep. We waited in the waiting room for almost an hour, then they took us back to an exam room where a nurse saw Elijah and we waited at least another forty minutes with Elijah acting very fitful and angry. Just before the doctor walked in, I really felt like I was supposed to pray for Elijah to be healed, and I kid you not, my though in response to this was, ‘No, if I was going to pray for Elijah to be healed I should have done it last night, or this morning, or at least in the waiting room. Now, if I pray for him and he’s healed, the doctor just won’t find anything so I’ll never really know if he was healed, plus I’ve already waited here all morning.’ Well, I couldn’t shake the feeling I should pray for him, so I did. I prayed for Elijah to be healed but it was not a powerful, passionate, exciting prayer. Sure enough the doctor said his ears looked great, his throat look great, and at my insistence she did a strep test that came back negative. She suggested he might be teething and then gave us an official diagnosis of “fussy baby.” So obnoxious. Oh well, maybe Elijah was healed, on Sunday, maybe not, but he’s been acting much better and the fever hasn’t returned, so I can’t complain!
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We went to the zoo today with Isaac pre-school, here’s a few cute photos.
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The dentist told us today that the new plan is just to fill Joel’s seven cavities with white filling.  If any of the teeth appear to need root canals they will be pulled instead.  (Although from what they can see now it does not look like this will be necessary.  The white filling will not last as long as silver crowns would, but metal in Joel’s mouth would distort MRI images, so it just is not an option.  Hopefully with some good brushing we can make the white fillings last as long as possible.  All of the dental work will be done with Joel under anesthesia, possibly the same day as Joel’s next MRI.

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We have new hearing aid hats for Joel, so after a two or three week break we are putting Joel’s hearing aids on again.  He still takes the right hearing aid out immediately, but he will leave the left one in almost all day.  There is still fluid in the right ear, and at the last audiology appointment they could not measure any ear drum movement in either of Joel’s ears, so we are considering taking Joel to an Ear Nose and Throat specialist, since it has been about three months now that Joel has had fluid in that right ear.

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Joel’s left eye seems more turned in to us.  I don’t know what to make of it.  Even thinking about it is a little stressful.  He has had so many problems with his eyes that it is hard to assume that a change in the amount his eyes cross signifies anything, but it is not a good change.  Please pray that we have wisdom about how to respond.

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Tonight I put all four boys in the bathtub together.  They splashed and splashed and cracked themselves up, it was precious.  Joel kept kissing Elijah over and over again, even though Elijah continued to splash water right in Joel’s face.  Joel is doing well, it is a good season, but an uneasy one.  Radiation necrosis can happen up to six months after the radiation treatment, and it is hard to see Joel refusing to use his walker when he used to love it so much.  I love seeing pride on Joel’s face, and I never saw it more than when he was walking with his walker.  Right now it’s hard to imagine new accomplishments, greater strides forward in Joel’s life, but then I remember when it was hard for me to imagine Joel swallowing food, and if this picture shows anything, it’s that my chunky little guy has mastered that challenge!

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