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The Refiner’s Fire

“If there were no night, we would not appreciate the day, nor could we see the stars and the vastness of the heavens. We must partake of the bitter with the sweet. There is a divine purpose in the adversities we encounter every day. They prepare, they purge, they purify, and thus they bless.” James E. Faust

How true this is! I have come to have a great testimony of how true it is that we need adversity and trials to help us grow, to strengthen us spiritually and to give us a greater capacity for love and joy. The road however is not easy.

Our Darkest Hour

Beckett had been admitted for the long haul. We wouldn’t be going home until he received a transplant. He was still doing ok but each day was difficult. We didn’t know what his labs would show and it felt like each time we attempted to fix one problem, a couple more complications would happen in the process. It was stressful. Trying to stay on top of the information we were given each day became a chore. Usually I can comprehend what is being said and process it. But this all became too much.

I remember each day being told that his kidneys were getting worse. Each day we heard he may need dialysis but we weren’t quite there yet and we would keep a close eye on them. His peeing slowed way down. He wouldn’t drink anything. He was fussy and sad and his belly was so big. My heart would ache watching him but I still felt like he would be ok, even though we knew he was so sick. He had been granted 50 exception points. The highest I had ever actually seen was 52. So we knew he was not doing well. And then to top it off, he had been granted status 1B meaning he was at the top of the list and needed a transplant very soon. I still felt he would be fine.

Our ward family decided that they would fast for Beckett on June 7th. I also heard of so many friends and family that also decided on their own to pray and fast for my son. We felt such strength and encouragement that day. I felt the prayers, physically felt them engulfing me in strength and power. That Sunday was one I will never forget. Monday morning I headed up to the hospital to take care of Becks for the next couple days. I thought Shawn would be at work by the time that I got there but I was surprised to see him in the room. I came in happy and said hi and that’s when I saw Shawn’s face and my heart dropped. He was crying. He said, “We have some hard choices to make.”

We sat down and started talking. He told me of the conversation that he had with our doctor. She told him that even being status 1B there were quite a few other children ahead of him. We were told that kids can wait 2-3 months at a Status 1B and Beckett did not have that time. He was worse than we thought. I was devastated. I knew the reality of him passing away was something we might experience but this was the first time where it actually felt real. We could lose him. The team wanted to cross list him for an incompatible blood type. It would be risky but it could bump him higher on the list and his chances of getting a transplant sooner were much better. We both felt like we needed to do it. Anything to save our baby.

I was shattered. I felt my faith shaken really for the first time since we started all of this. Only the day before communities of people had come together to pray and fast in our behalf. And now we get this news? I did not understand. I tried to rationalize what was happening. Tried to process. And I was angry. I had been strong. I had faith that things would work out. But that’s not real faith is it? No. Faith is aligning our will to the Father’s and accepting the outcome even if it isn’t what we wanted. I prayed harder the next couple days than I have in a long time. At first I was just saying the words. “I want my son to live BUT IF NOT I will be ok.” But a peace came to me. I came to truly mean what I was saying. I was given a blessing from our bishop that I will never forget. Faith was a big part of the blessing. I have the faith. Now I just needed to focus on the Savior and let him be my light, my guide.

The Miracle 

Throughout the next couple days, I truly came to know that I would be ok if things did not happen the way that my soul desired. It would be devastating and it was the last thing I wanted but I WOULD be ok. I would. And as the week went on I cried less and celebrated more. Friday was my day of complete peace and then Saturday our miracle came. It came in the 11th hour. We were brought to the lowest of lows before the relief came. Before the light shone through and the weight was lifted. I now understand what the scriptures and prophets mean by “after the trial of your faith”.

When we found out that the liver was perfect for him, perfect size and it was his blood type, I was stunned. How? This wasn’t supposed to happen. It was a miracle. A true blessing from a Father in Heaven who is aware of me and loves me. The morning after his transplant, all the doctors rounded to discuss Beckett and the plan for him. There were 32 people there- surgeons, transplant team, kidney doctors, liver doctors, pharmacists, nutritionists, PICU doctors, an ultrasound technician, our nurse and social worker. It was intense. The conversation lasted about 30 minutes as they went over everything about Beckett and consulted each other as to how they should proceed. Towards the end, someone asked us if we had any questions. I asked our surgeon, who was on the opposite side of the massive circle of people, about the size comparison between Becks old liver and the new one. He started to talk to us and as he did people broke off into small conversations of their own. Then the surgeon said, “I used to not believe this at all but after doing transplants for awhile now I truly believe it.” As he spoke all the conversations stopped and the room went silent. He continued, “I truly believe that organs find the recipients that they are MEANT to be with. There is no way that Beckett should have gotten this liver but it was meant for him. This liver is supposed to be his.” Shawn and I were in tears. To hear a surgeon speak so emphatically showed us yet again how much of a miracle we were witnessing.

The Refiner’s Fire

Malachi 3:3 And he shall sit as a refiner and purifier of silver: and he shall purify the sons of Levi, and purge them as gold and silver, that they may offer unto the Lord an offering in righteousness.

“Out of the refiner’s fire can come a glorious deliverance. It can be a noble and lasting rebirth.” James E. Faust

We have been in the refiner’s fire. I guess you could say we are still in that fire. Each day is a new chance to decide how we will act, what path we will choose. Will we learn from what we are going through? Will we let it purify us and turn us into something greater than we were before? Or will we let it consume and destroy us?

I remember watching a video after Beckett was first diagnosed. I sobbed through the whole thing. In the video the woman said several things that have stuck with me to this day and I hope to carry them with me forever. She talked about Newton’s law. For every action there is an opposite and equal reaction. So the greater our sorrow, the greater our capacity for joy. I believe this. As odd as it sounds, our lives are so much brighter and happier now. Even before our miracle, I still had felt more joy than ever before in my life. It’s also given me a much greater understanding and empathy for others. We are not the first to go through a really hard trial. And we will not be the last. I want this refiner’s fire to help me be able to help others. To reach into the depths of despair and grab someone and say, “I have you. I know what you are feeling and I am here to help.”

We have been through the night. I have a greater understanding of the universe, of God’s greatness, of my Savior’s atonement. And now we see the dawn of a new day and it is beautiful. It’s more beautiful than ever before because we endured the pitch black of night. Our faith has been tried, our courage tested, our souls put through the fire. And we are emerging changed forever. Changed for the better.

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Faith of a Child

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One evening 3 months ago we had just got the girls and our man cub settled into bed. Kim and I nestled in on the couch and started our nightly routine of, “what do you want to watch?” As we were scrolling through our Netflix list trying to make a decision Kim heard the unique sounds that only a child knows how to make coming from the stairs. She turned around from the couch to face the stairs to discover which of the two mobile children it could be. It was Addie. She had tears in her eyes. Kim noticed the tears immediately.

“Addie, what’s wrong?” she asked.

“I just want Jesus to come to our house.”

“You want Jesus to come to our house?”

“I just want Jesus to come to our house.”

I chimed in, “Addie, come down and talk to me sweetheart.”

Version 2She came quickly running down the stairs as if trying to escape a fire. I pulled her onto my lap and asked why she wanted Jesus to come to our house. She replied,  “I just really love Beckett. I want Jesus to come to help Beckett and Mommy feel better. I just want him to come to our house. “As the realization struck Kim and I of what Adalyn was saying and what she had been internalizing in her little mind, our eyes welled up with tears.

I didn’t know how to respond. I was speechless and felt stumped by my 4 year old. How do you tell your child that Jesus isn’t going to come to your house? He is not going to knock on our door and we are not going to get to see him. How do I explain this to her?

I wrapped my arms around her and I thought about it for a minute. I decided a prayer would be our best course of action. I asked her if we could say a prayer and she agreed. In that prayer I asked that Mommy and Beckett would be watched over by Jesus. That seemed to do the trick and Addie went back to bed.

I have pondered this experience countless times since it has happened. I have played it back in my mind over and over again. I think sometimes as adults we over complicate the simple and easy things. We poke fun of those who are innocent. We grown ups “know” too much when in reality we forget that the beauty is in the innocence of not knowing. We over analyze rather than seeing the situation or truth for what it is. We anticipate and make plans for the outcome or future without really having a knowledge of what the future has in store. At least I do. We (big people) draw a line in the sand between faith/hope and reality of life. To children this line does not exist.

IMG_1270As much as I prayed for a miracle that Beckett would get his transplant I did not exactly feel confident that he would get one. For a while the plan that God had for Beckett seemed unclear, uncertain, and often times completely non existent. My hope was diminishing quickly. I could honestly compare myself with the father in the New Testament who took his child to Jesus and said, “Lord I believe; help thou my unbelief.”  After watching Beckett’s miracle gift come together and looking back at all the moving pieces there is no doubt in my mind that God was at the helm the whole time. He knew exactly what he was doing. It was a true miracle and nothing short of a miracle. I feel ashamed for doubting. I am embarrassed by my lack of faith. I was trying so hard to be a father, protector and a provider that I completely overlooked the fact that I needed more than ever to become as a little child.

This afternoon Adalyn and Raemee are coming to visit their brother in hospital for the first time since his liver transplant. I can’t wait to squeeze them both and tell my oldest princess, “Guess what Addie? Jesus came and Beckett’s getting better!”

 

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The Timing Will Be Perfect

For the past several days, Shawn and I have been sick to our stomachs. We don’t know what’s coming. We don’t know what we will have to endure. We don’t know when relief will come. I began feeling impatient and I knelt to pray. I prayed so hard that his liver would come now. That he wouldn’t have to wait anymore and that we could move on with our lives and stop feeling so scared, anxious and stressed. I then had one of the most powerful teaching moments that I can remember. I had a distinct thought come into my mind. It was so clear and it was nothing I had been praying about or thought about before. It was as if someone was counseling with me.

“You are being selfish. In your impatience wanting a liver now for Beckett, there may be another family who needs time to say good-bye. Time to grieve. Or one more happy day with their child.” My heart felt struck and I started to cry. I have tried really hard to be ok with the Lord’s timing. Most of the time I do fine. I accept that things will happen when they are supposed to. But I never gave much thought to the fact that the Lord’s timing is perfect on ALL sides. Now I’m not saying because I had this thought that he will receive a transplant in the next day or so and there is literally a family grieving right now. But I believe I had this thought for a reason. So I can greater grasp the magnitude of the Lord’s love for all his children. That when a family is grieving their loss, they will have adequate time to do so. He sees all sides of the picture where my view is limited.

We have always prayed for our donor family. But our prayers were so focused on the peace for them after their loss. My prayers have changed. Of course, I want Beckett to receive his second chance at life soon. I want him to be ok. I want him to be safe. I want him to live. But I now see there truly is a much bigger side to this. And I pray the timing will be perfect. That his donor family will have time. Time to enjoy, to love, to say good-bye. I will never be able to thank them adequately enough for the way they will change my family’s lives. The least I can do is be patient and give them the time they need. I now pray for them in a much deeper way than I have before.

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I’m beginning to learn…

Life with Beckett has magnified anything and everything’s capacity to be difficult. Raising kids, marriage, faith, employment, and I won’t go into the personal interests that have been tossed out the window. It’s been frustrating and exhausting on all levels. Several people and friends have told Kim and I that we are amazing and they don’t know how we do it. Thank you but let’s take a time out. Don’t overlook the hard things that you have to deal with. Don’t discount your own trials because we have a sick kid. Fact of the matter is, life is down right ugly and dirty, ruthless, hard, and sometimes very unforgiving. That’s how it was intended to be for everyone. Not just the family with the sick kid. Yet, there is supposed to be great joy with all of this. Tunnel vision and focus on the hard things make it difficult to experience joy and learning.

At some point you have to accept that you cannot do it all. For example, what comes first, church or family? Wait for it, wait for it… Neither. God comes first. If you are building a relationship with Jesus Christ and our Father in Heaven then you know which things should take priority. When you know what God wants of you, there is no guilt. Guilt doesn’t come from God. God only motivates and invites you to become your best self. You cannot transform when feeling fear and guilt.

I strongly believe that your best self changes depending on the scenario you find yourself in. For the past two weeks I have come down with an anger problem. I have never been a very angry person. However, my behavior reflects my four year olds when it comes to me being frustrated and not getting what I personally want. It’s embarrassing and I’m ashamed but while discussing my feelings with Kim she said the following:

“Where there is a greater capacity of anger and emotion, there is a deeper capacity for happiness and love.”

So do I feel more anger now because I feel more love than I ever have in my life? I think so. My anger is now an expanded part of my emotional system because I care about my family, relationships, and people more than ever before.

Beckett’s turnaround to good health after the holiday season was nothing short of a miracle. It was a much needed answer to prayers to prayers that for a while I thought were not being heard. It was a tender mercy from heaven that touched our family’s spirits in so many ways. It was a sign that God lives and he is ready to help. He is a loving Father who knows how to help is children stretch themselves. About a week into our “healthy vacation” as I call it, Kim and I began having interesting feelings. Promptings that we shouldn’t get too comfortable. They have prepared us for the past two weeks as Beckett has spiraled steadily into a state that has his medical team and parents concerned.

This crazy train has been the hardest thing I have ever had to deal with. It has brought out the best and worst side of me. I have questioned my faith and I have doubted my doubts. There are a few things which are clearer than others. I have learned more than I ever would have without this trial, sometimes I am grateful for that and sometimes I’m not. Yet, the thing I feeling strongly about right now is I have to find a way to understand what it means to have a true relationship with God. Lip service and Sunday worship is not going to do it any longer. Past experience has taught me that when life decides to do its worst I am not strong enough on my own to do my best.

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“Look Not Behind Thee…”

It’s quiet. It’s peaceful. The Christmas tree lights are on. My babies are asleep in their beds, occasionally coughing. I text Shawn at the hospital. Happy New Year’s Eve. What a year this has been. What joy we’ve felt. What peace. And then what heartache, anger and frustration. I start to feel myself sinking. Sinking into sadness at the direction my life is taking.

I need the Spirit. I need my soul to be taught. I say a small prayer and act on the first thought that comes into my mind. I find a video about New Years. And my soul soars.

We had a hard year. We’ve been terrified. We’ve learned many medical terms that I wish I didn’t know. We know how to take care of NG tubes and PICC lines. We have watched our baby endure surgery, blood draws, and watched as his belly fills up with fluid only to get to the point where he is struggling to breathe and needs the fluid to be drained. 8 times now. 8 times in two months. We are watching him waste away. Watching as his spine sticks out more and more. Watching as his arms and legs and bum get skinnier and more saggy with just his skin. It’s hard. It breaks my heart.

We haven’t said anything yet but when we came into the hospital this last Monday, we found that his portal vein is clogged. This is the reason we can’t get his fluid buildup under control. His surgery worked. It worked! But there is this weird disconnect where his liver is able to drain the bile but the blood can’t circulate the way it needs to because of the clog in the portal vein and the scarring of his liver. This means that the fluid leaks out of the veins into his belly. There is no fix except through a transplant. So the decision was made to list Beckett for a transplant. We were relieved. Finally a reason for why he is still so sick. Finally a direction to go. And then reality hit. A transplant. He is not even five months old. He’s so little. He’s so scrawny. Now we’re moving to major surgery. And lots of waiting for an available liver that matches him. Knowing that he is going to get so much worse before he gets better. We could lose him. We haven’t had enough time with him. So much fear and anxiety.

I’ve had many moments of wanting to go back. Wanting to go back to the time when life was easy and perfect. When we didn’t know about liver disease. When I didn’t know heartache the way I know it now.

But I’ve made a choice. I am not Lot’s wife. (Genesis 19:17,26). I will not look back. “She doubted the Lord’s ability to give her something better than she already had. Apparently, she thought that nothing that lay ahead could possibly be as good as what she was leaving behind” (Jeffrey R. Holland ‘The Best is Yet to Be’).

As I watched the New Year’s video last night about Lot’s wife, I had a glimpse of my future. I saw vacations with my whole family. I saw laughter. I saw late night conversations. I saw a little boy running around with joy on his face. I saw a future missionary for our church. I’m never looking back. I’m never wishing away this life I have now. I’m never wishing away the person I am becoming nor the people I’ve met who have helped me and changed me. I know that this year is going to be hard and painful as we potentially will watch our son receive a transplant. We will have many scary days. Lots of time in the hospital. And yet, I know that the Lord has such amazing plans for my family, whatever form they come in.

Today is the first day of 2015, the first day of the rest of my life. The first day of the rest of all our lives. Stop looking back. Focus on the future. Because it’s bright. And shiny. And wonderful. And God loves us. He loves me. And He loves my son. IMG_7496

 

 

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Life is Everything but Routine

“So, they drained between 400 and 500mls of fluid. We are going to have him stay the night and monitor the output of his fluid through the drain. We should have him home tomorrow.”

“Just another routine stay right Dr. Book?”

She stops, turns around, looks up at me and says, “There is no such thing as routine. Each one of these kids is special.”

IMG_01655 miserable days later Beckett and I still find ourselves in the hospital. It’s Christmas Eve. It’s the most magical time of year and it feels anything but magical. If there is one thing I have learned from this hospital stay is that life as we know it is anything but routine.

There is a 2 year old boy from St. George, UT with Pneumonia in the room next door. St. George is roughly 5 hours away from Salt Lake City where Primary Children’s Hospital is located. He has a 1 year old little brother at home. Both his parents are here trying to get him home before Christmas. All he has to do is drink liquid orally and they can go home. He doesn’t want to.

Down the hall there is the most precious little girl who is just under the age of two. She was born with one kidney and has fought through hospital stays her whole life. They found out earlier this week that she needs a kidney transplant. They have been able to stabilize everything except one of her levels. If it stabilizes then they can return home to Idaho for Christmas.

Then there is Beckett. This boy has taken me to the cliff and brought me back from the edge. Only because of how much I love him. In the past 3 months we have now stayed 29 days/nights in the hospital. This stay out of all of the others has been the most painful and excruciating for me. I believe Beckett feels the same way.

IMG_0185Kim and I felt strongly that we needed to bring him into the hospital last Friday. We knew something was not right since Beckett’s demeanor changed drastically over a 24 hour period. Since then, he has endured being drained twice, daily blood work, IVs, a picc line, multiple antibiotics, change in diet, hydrating oxygen tube, and a catheter. For 4 days he wouldn’t sleep more than 1 hour for every twelve hours in the day. His breathing was strained, he ran a fever, and the only way to console him was to push him around the hospital in a stroller. I have never seen him so worn down and uncomfortable. In the meantime, nurses and doctors confirmed that something was wrong but didn’t seem to know the right course of action. When trying to address one issue, it would create others.

As a parent you can imagine the fear and frustration. You can imagine the pain I felt for my child who was suffering. I was confused. I still am confused. Regardless, slowly the anger snuck in. “Fix him! Figure it out!” Beckett’s behavior started reminding me of a visit we made to one of our liver friends who was teetering on existence in this life and how uncomfortable and irritable she was. I began visualizing my future with Beckett. The horror struck as I realized that this will one day be my constant reality and that Becks is only going to get worse before he can get better. I was not prepared for this life lesson and rude awakening.

I was praying constantly. So many people reached out and mentioned that they were praying as well. Yet Beckett, wasn’t getting any better. I began to feel like I was not praying correctly. “Maybe I am not worthy of God’s miracles” I thought. Why is Beckett not getting better? My faith began to crack. Doubt crept in. I felt the only way to be able to fix him is if I do it on my own. Yet, I didn’t know where to start. I am not a doctor. All I have is limited knowledge that has accumulated over the past 3 months. I knew I was missing something and I didn’t know what. I couldn’t see the clear picture. I wanted to scream and throw things. I remember just wanting to break something. At the same time, I knew that none of my desired temper tantrums would help.

IMG_0176Pondering Beckett’s scenario and racking my brain trying to come up with what God is trying to teach me, I realized that these feelings apply in so many scenarios. Knowing that you need a new career but not knowing where to start or where to go. Being turned down interview after interview. Understanding if you don’t get a new job your family is in jeopardy. Or having a loved one struggle with addiction. Doesn’t matter what kind. They are all consuming and life threatening. How do you help them? What do you say? Why do they keep doing these things despite how much you fast and pray? The list goes on.

Life is everything but routine. There are no official manuals or how to books that say “Do this and your whole life will be perfect!” However, there is a source of self dependency and humility that is required in these terrible situations. If you are not humble enough to admit you do not know what to do, that you need Gods help, and if you are not willing to grab the reigns and do your part then nothing is going to get better. I strongly believe it’s ok to be afraid, angry, and doubtful. Those feelings are normal as long as they drive you in the right direction towards results and hope.

We finally found the right direction with Beckett. He slept through the night and we are restarting his feeds today after withholding them for 24 hours. There are many obstacles that lay in this warriors path, but we will take them as they come. For now, we will give him what he needs and keep hoping and praying for the Christmas miracle.

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Nacho Thoughts

IMG_0180Last week as Kimmie mentioned was just a real pain. The last 72 hours especially. I have had so many thoughts and feelings emerge. I’m trying to stay positive. I’m trying to quit missing the miracles that are taking place. It’s midnight, I am exhausted. Beckett can’t sleep. I can’t sleep. I’ve been fumbling, frustrated all week trying to extract my feelings from within to release them on a pad of paper and have nothing to show for it.

It’s midnight and I am now eating nachos in the Primary Children’s empty cafeteria. Beckett is in a stroller next to me wide awake and cranky. Kimmie is asleep on the couch upstairs in our room. I have no idea who the nurses are tonight and so now I’m eating nachos. Good thing I am on what I’ve been calling the “anxiety” diet. I don’t have to worry about stuffing my face with processed cheese because I’m stressing.

Will we be home for Christmas? What does Beckett’s future look like? Is he going to need to be drained every week? Where is my happy boy? When is he going to smile again?

It was so good to see my girls tonight for a few hours. I missed them so much! How do I make sure I have time and energy to provide Adalyn and Raemee with what they need?

How are we going to raise money for Beckett’s liver transplant once he gets listed? When is he going to get listed? How do I support my family financially when I feel a larger weight to support them physically and emotionally?

Why won’t Beckett sleep? What has been causing his fevers? Maybe I’m not praying right. Nothing is getting better. I don’t feel like I am getting answers. How do I pray then? What’s the Lord’s timing? How come I can’t see the bigger picture? What details am I missing? I feel like I am missing something. Why can I not see through the fog? Please let me see more than two feet ahead of me!

Ugh! I ate them all. My nachos are gone.

C’mon Beckett. Let’s go back upstairs and take another lap around the hospital.

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