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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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“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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Doubt

Ever since I was a little girl, all I ever wanted to be was a mom. Growing up, I loved to watch my siblings and eventually I started babysitting other families. I loved it. I may not have been the best babysitter but I learned a lot. And I was so excited and ready for my own family.

After Shawn and I were married it didn’t take us long to decide that we were ready for kids. And then Addie joined our family and my dreams came true. I was a mom.

Being a mom came easy to me. Sure there were hard days and frustrating times, but it felt like I was made to be a mom. I had natural instinct about what was going on with her.

Then came Raemee. Everyone said two kids was hard. But I figured it out and it didn’t seem so bad. And then Beckett. Everyone said three kids was rough. It didn’t take long for us to fall into a routine. Being a mom was easy. I was able to make decisions and I knew what to do for my kids.

So why do I question everything I do as a mom now that Beckett has this disease? Why do I doubt every decision? Why does every little thing scare me?

My confidence has shattered. My ego has cracked. I find myself scared to make any decision, fearing I’m messing up. I kick myself all the time that I didn’t pay close enough attention to his skin color before he was diagnosed. I’m angry at myself that I couldn’t see just how distended he was before he needed his belly drained. I don’t trust myself.

I am like that fourteen year old again, not doing a very good job but wanting so desperately to be enough. To be good enough. To be trusted to do the right thing.

I remember a couple months before Beckett was born visiting my best friend in the hospital where her newborn daughter was having a hard time and was in the NICU. I remember how scared I was for her and how strong she was. I remember saying to her, “I could never do this. I could never be the mom to a sick kid.” And then just a few short months later here I am.

There is no manual. There is no guidebook. There is nothing but myself, and my fervent desire to be a good mom, a great mom. I have to let go of my failures. I have to learn. I have to trust. Trust myself, that I am good enough. That I can do this. I can be a mom and a dang good one. Because I’m trying and because I care.

And there are others who trust me too. I can see it. Our doctors trust me. My husband trusts me. My girls trust me. And my beautiful baby boy trusts me. But most of all, my God trusts me. So I will trust in Him and let go. Let go of the fear and the pain and the doubt. I will piece back together my confidence. It’ll take time. It’ll be hard. And I’ll cry a lot. But I was born to do this.

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