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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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Our Transplant Journey

Last weekend was such a wonderful one. I never want to forget the events that transpired that led to our son getting his second chance at life. I woke up the morning of Friday the 12th in the best mood I’ve been in for a long time. I just felt so good. Life was wonderful. I was seriously bouncing off the walls. It was our anniversary so I thought that could be the reason why I felt so happy. I said my morning prayers and spoke to my Father about how today would be an amazing day for a new liver since it was our 7th anniversary. The girls woke up and we started on our day together. Periodically throughout the day, Shawn, who was at the hospital with Becks, would text or call. I kept telling him how happy I was and he kept telling me to calm down. I couldn’t. It was pretty funny. Partway through the morning, I felt like I needed to go to the hospital on Saturday and spend the day. Usually I take the weekend at home so that I can be at the hospital during the week to allow Shawn to go to work. I’m never at the hospital on Saturday. But I felt strongly like I wanted to spend the day with my boys. I arranged to have the girls stay with their Aunt and cousins Friday night for a sleepover and then stay and play all day Saturday. Around 6 pm I dropped them off and grabbed a bite to eat. I kept texting Shawn how happy I was and excited about life. Life is beautiful. He seriously thought I was crazy for being so happy when our son was so seriously sick in the hospital. I told him I would be up to the hospital really early in the morning. After I ate I didn’t know what to do and I was still so excited and hyper. Shawn suggested that I do some service for others. And immediately the thought came to mind to make cookies and write some notes to a couple neighbors and friends who have made a difference in my life lately. I dropped them all off and everywhere I went they would ask how we were doing. I just kept saying, “I’m amazing! I feel so good about life. I’m so happy!” I probably looked a little crazy. I spent time talking with a friend and then went home to bed. I went to bed at midnight, looked at the clock, sighed with a little smile on my face and then said my evening prayers. I said to my Father that even though we didn’t get a new liver, the day had been amazing and I was so grateful for the peace and joy that I had felt. I told Him that I wanted to keep that feeling as we continued to wait.

Saturday morning rolls around and I was up pretty early. I felt so sick to my stomach. I was nervous and anxious to get to the hospital. Shawn sent me a picture of him and Becks saying they were excited to see me. I got my belongings together and headed up. I walked into the ICU and over to Beckett’s room. Shawn was standing at Becks bed and looked at me. “It’s going to be a great day, ” he said with a grin and tears in his eyes. I immediately started crying. “Are you kidding me? Are you serious?” He grabbed me and pulled me into a huge hug. “I guess that’s why I felt so happy yesterday,” I said.

*Side note. How we got “the call” is actually pretty humorous. Because it’s so us. They called the hospital room where Shawn was staying with Beckett. The call came in at 3 am. Now those who know Shawn know that he can sleep through anything. It’s one reason why he does better here than I do. He can sleep through the beeping and the nurses coming in and out. Ask any of our nurses; they’ll tell you just how deep he sleeps. So the phone rings at 3 am. Shawn sleeps through it all. The resident got our call but didn’t wake him up. Morning comes and our nurse told Shawn that the resident wants to talk to him. Now we had been pretty worried about some labs the day before so it made Shawn nervous that she wanted to speak to him first thing in the morning. Shawn starts getting ready, completely oblivious to what was actually happening. He walks out of the room to go to the bathroom and a doctor was sitting right outside our room. He says to Shawn. “It’s going to be a good day.” Shawn was thinking, “Uh, ok.” After he got back from the bathroom, the resident walked in and informed him that we had the offer.

The rest of the day is a blur. We had so many doctors and nurses in and out of his room. They ran a full panel on him checking his urine, stool, and blood. They drew so much blood from him to check just about everything you can imagine. He had a chest x-ray, and numerous consults from cardiology, nephrology (kidney), hepatology (liver), anesthesiology, and of course the surgeons. We also had someone come by to ask for our consent to take a piece of the old liver to study it. Of course, we said yes! We hope that something good comes from that bad liver. It was such a busy day and yet went by so slowly. When we spoke with the surgeon he told us that his colleague was flying out to check the liver. He said that they could cancel the transplant at any time especially once they see the liver in person. But they all felt very good about it. We also found out the liver was O+ and was the perfect size for Beckett. What a miracle!! All the scary talks of cleaning his blood to be able to accept a different blood type now didn’t matter because we wouldn’t have to do that with a perfect match blood type. Around 3 pm we were told that they were on the way back and they had the liver with them. At that point we started telling our families. The OR time was originally set for 5:00 but got bumped back until 5:45. We didn’t end up taking him in until just after 6.

The hardest moment is kissing him good bye and watching the doctors and anesthesiologist wheel him away to the OR. That’s when I lose it every time. I trust them. I know they will take good care of him. But so much could potentially go wrong. It’s terrifying. Shawn and I cried and then walked outside to be alone and process. We sat outside the hospital. I texted a friend to come up and keep us company while we anxiously awaited for updates.

Through the past 8 months of near constant hospital stays, we have made a lot of friends at the hospital. Nurses, residents, attendings, ultrasound techs, interventional radiologists and other staff. As we waited outside of the hospital we saw so many people that we knew. And it was SO good to hear them ask about Beckett and be able to tell them that he was in surgery right now receiving his new liver. Once it got dark we headed inside to wait. We ordered pizza and settled in for the long haul. Thankfully our friends helped keep things light so that we could talk and laugh and it didn’t seem too stressful. After about an hour of waiting we received our first update. Beckett was prepped, sedated and they were about to start the actual surgery. The next call came two hours later. Still working on getting the old liver out, the new liver was cleaned and ready to go. Another two hours. Old liver out, new liver is being worked on. After that we got our last update. New liver is in, blood circulating, making sure there were no leaks and that everything is taken care of. And then the call that he would be going to the PICU (pediatric intensive care unit). Our surgeon called a little while after that to tell us that he did great and was stable through the whole thing. Everything looked good and we could go see him in just a little while. By this time it was just after 1 am. Our friends left. We walked up to the PICU waiting room and FINALLY at 2:45 am they said we could come see him.

I was nervous. We knew what to expect but I was a little afraid to see him. We walked to his room and there were so many people settling him in, preparing all his pumps of meds and fluids, cleaning him up etc. We were hesitant but walked over to him. We were shocked. In the 8 hours since we had seen him, he was already pink. I didn’t see anything else in that first moment. Just his skin that was already changing. After that wore off, I started to take in a mental image of what I was seeing. He was limp and still very sedated. He had a breathing tube, 3 drains coming directly from his abdomen, bandages over his huge incision, a bloody bandage on the right side of his neck and an IJ line (inserted into his jugular vein) on the left side of his neck. He was a mess. But he was so beautiful!!

Photo Jun 14, 3 08 10 AMWe stayed with him and got him situated and cleaned up. I stroked his head and arms. I was in awe of this perfect little creature. Around 3:30 I decided to get some sleep. Shawn stayed with him and slept by his side. I wish I could describe the feelings that we felt that night. I think I experienced every emotion you can imagine. Fear, worry, joy and utter relief. Oh the relief. It was as if a gigantic weight had been lifted from off our shoulders. Our little man would be ok. We are blessed.

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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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How foolish was I?

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Over the last 48 hours I have physically felt changes happening inside me. I have thrived off the adrenaline that can follow after receiving bad news. I can remember the moment when I felt my mind suppress my fears and true feelings and place them into a deep corner. It’s a dark corner somewhere that does not allow me to honestly process how I feel about the cards being dealt on the table. I am very aware of how I should feel but at the moment I feel hollow and empty. As the weight and pressure in my head increases I realize the adrenaline is gone. Exhaustion is setting in and it’s getting harder for me to continue to neglect my emotions. The breakdown is on the horizon.

(null) (3)I thought I was prepared. I had months to get myself ready. How foolish was I? To think I have been worried about what is on the other side of the fence when I haven’t even explored the side or area that I reside and am encompassed by. I have been so worried about the potential risks post transplant that I have completely ignored what has to happen for Beckett to receive a new liver and a second chance. Common scenario with transplants is the child listed has to decline and get worse in order to move up in priority on the transplant list. Get worse to get better. I admit to being ignorant and not worrying about Beckett getting worse. My anxiety has been focused on the small percentages of uncommon horrible things that could happen after Beckett receives his gift of life. I take it all back now.

(null) (4)I can’t explain what it’s like other than saying it is excruciating to watch my man cub transform slowly. It started with his skin and eyes changing color. I miss my pale faced and rosy cheek son. Many comment on his big blue eyes but all I see is yellow. His personality took a hit next. He stopped smiling. He became irritable. Groaning, moaning, and any other sound that he could come up with to express his dissatisfaction and discomfort. The latest changes include glazed eyes and constant desire to be sleeping. It feels like I am watching my son slip away. I am not ok with it. I am not ready for it. I want a do over. I want more time to get ready. Sadly, I now understand that no amount of time could ever prepare me.

This looks like it could be the potential of a very long road. I will wake up in the morning. I will stretch. I will tie my shoes. I will put a smile on my face for Beckett. I will keep walking down this road by his side. No matter how long it takes.

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Hurry Up and Wait

We are now approaching one of the longest times that we have been home with Beckett since he was diagnosed with Biliary Atresia. It feels amazing. Even though things are going well, it’s still been so incredibly stressful. About a month ago, we headed into the hospital for what we thought would be a two day stay. A belly draining and recovery and then home again. I wanted to get it over with because Shawn was headed out of the country and I didn’t know how to juggle being with the girls and Beckett, at home and at the hospital. It was just too much. So we headed in before Shawn left. Little did we know that our two day stay would turn into a two week stay.

We drained his belly (the scariest one so far) but we just couldn’t find a good balance of diuretics to keep his belly small for any significant length of time. It was so frustrating. Our situation has always been a little different because his belly fluid came from two different places rather than just one. Usually with these BA kids, they have ascites (abdomenal fluid) because their liver is so scarred. Blood can’t flow properly and so fluid leaks from their organs and their veins. This is part of Beckett’s problem. But the other issue stems from his surgery 5 months ago. During the surgery, his lymphatic system was damaged. So he had fatty fluid leaking from that. That was a huge part of the problem at the beginning. It’s the reason I had to stop nursing and he was placed on a special formula. But as we were in the hospital this last time, our doctor was concerned because this should have healed by now. It’s been five months and it should have taken a couple of weeks. She theorized that because of the massive fluctuations in his belly size, his lymphatic system couldn’t heal properly and was still leaking.

At that point, the decision was made to place Beckett on the transplant list, this time for real. At this same time our doctor wanted to try one last medication to see what effect, if any, it would have on the fluid issue. It was a medication that she had never used before in this situation. She had used it for other purposes but never for this. So we had no idea what would happen. We never were worried that something scary would happen to Becks, we just didn’t know if it would make any sort of difference. The medication works like a blood pressure med, except with your organs. It also slows everything down including liver function and digestion. I was ok with trying it but became a little concerned when I learned that it was a shot, three times a day. And it burns going in. We tried it a couple times but Becks didn’t tolerate it well, he cried and screamed. That’s just not like him. He can handle things much better than most people can so I knew it wasn’t a good fit. Plus it wasn’t doing anything. Then came our very last option. Same medication but in IV form. He had an IV placed and was on this medicine 24/7. For four days. So many tubes and monitors.IMG_7978

During these four days, although things were pretty slow with Beckett, they were crazy for Shawn and I. Because he was going to be listed for sure, our lives went into go mode. Beckett had an echocardiogram to check out exactly what his heart is like. We had a 2.5 hour interview with a social worker followed by a 3 hour teaching class all about liver transplants, statistics, things to expect etc. We also had a visit from a pharmacy tech who spoke to us for about an hour all about the meds that we can expect him to be on after transplant. So much information crammed into such a short time frame. I had a permanent migraine for several days. It was so much to take in and process.

At this same time, Beckett was placed on strict fluid restrictions. They upped his TPN and lipids to 21 hours a day, and he could have 3 oz by mouth a day. We had to strictly observe how much water we were flushing his NG (feeding) tube with. Every little mL was carefully counted and added up each day. We had moments where his belly grew too much and we had to start all over with which diuretics to use and at what dose. And then he would dry out, his mouth would get dry and his tongue would feel like sandpaper. He would gag and choke. Every morning they took labs to monitor his kidney function and check his electrolytes. After four days, he was taken off the IV medication but we stayed at the hospital for just over a week after that. And every day was the same. Labs. Monitor. Adjust meds and fluids. He had fussy nights and other nights he slept great. It was just so up and down each day.

Finally we got the ok to go home. His belly was staying stable. Dr. Book wanted an ultrasound before we left. She believed that the reason that his belly was staying small was that his blood was finding new paths to get where it needed to go. And she was right. I think the IV med also helped heal him a little but we saw significant changes in his blood flow. Right now it’s a good thing for him. There’s less pressure and so he isn’t leaking as much fluid into his abdomen. It could cause problems in the future. We will see.

Life since we’ve been home these past two and a half weeks has been good and stressful. He’s been dry almost the whole time. I should rephrase. His mouth has been dry. Every time we do labs, his kidneys are great and he is peeing fine and crying tears. So we know that he is not dehydrated but for some reason his mouth is so dry. We keep getting it wet with water or giving him wet towels or sponges to suck on. It helps and he loves it but he started waking up every hour during the night due to being dry and uncomfortable. It’s been exhausting. He also has gone on a feeding strike. I’ve been struggling to get 3 oz in him a day. And this last weekend, he completely has refused to eat anything. So for the time being, he is completely tube fed. Throughout the day we periodically push food through his tube. A couple mL’s every few minutes. We try to get 10-15 mL’s in every hour. If we push more than that, he vomits. It’s such a delicate balance. And it’s hard to watch.

IMG_8223We are still waiting for him to be listed. Waiting on insurance. It’s been a stress since the beginning because our insurance plan doesn’t cover transplants at Primary Children’s Hospital. We worked something out a few months ago but now that it is time to get an actual contract in place it is taking time. We had a few days a week ago where we were told that we would have to move or risk paying hundreds of thousands of dollars at Primary’s. It’s been so incredibly scary thinking of what we may have to do to save our baby’s life. But at my last appointment, insurance wanted us to do a few more things, more blood work, and an EKG so I’m crossing my fingers that they are continuing to work through a contract and we will be able to stay here and stay together as a family.

Beckett continues to be amazing. He has been rolling over like crazy and will even stay on his belly for about a minute now! That’s so amazing to me because he hates pressure on his belly. He won’t sit up or play in toys that put pressure on his tummy. So for him to be staying on his belly is a miracle. He is constantly smiling even though I know he doesn’t feel good. We are also starting to get some real weight on him. His cheeks are filling out and I’m starting to see that his wrists are getting fatter. It’s good to see him look a little healthier. IMG_0463Hurry up and wait. That’s our life lately. We rush to find a solution to an issue and then the next minute time stands still and we are left waiting. Waiting on insurance. Waiting for the call to come that he is listed. And ultimately, waiting for the day when our lives completely change and Beckett gets his second chance at life.

 

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Light

“We see no reason not to move forward and list Beckett.”

Oh the words that I’ve known were coming. It came out of the blue though. We have been in limbo for quite some time. Beckett’s liver labs and bilirubin levels keep going down and yet we’ve been in the hospital almost weekly dealing with massive amounts of belly fluid (ascites). Nothing works and yet they kept telling us that he was fine. It was so hard. How can he be fine when we are here all the time getting his belly drained? So when we found that there was a potential clot in his portal vein the doctors made the decision to move forward with listing Becks for transplant.

I saw the light. Finally. Instead of drifting around aimlessly, I finally felt like we could see the lighthouse. Our little boat had direction. We could now navigate through the big waves and stormy seas because there was the light. Even though I knew the light was still far away, I could see it! And then our week exploded.

We met with countless doctors, kidney doctors, surgeons, infectious disease doctors. Beckett had a cat scan, more ultrasounds and he had an incredible amount of blood drawn. We knew that we would still need to meet with social workers, financial aid people, and our liver team for a day of education. Holly, our liver transplant coordinator, brought by an entire binder of information for us. In the meantime, we were trying to get Beckett’s ascites under control. They drained his belly twice. They left the drain in. We tried IV diuretics. We tried multiple new diuretics. He started getting fevers. He wasn’t eating much. But as stressed as I felt, I could still see that light. He was being listed. The end was coming. Eventually.

We solved some of the problems. The drain was taken out and the fevers went away. We started TPN (total parenteral nutrition) and lipids (fats) which is a boost of nutrients, proteins etc to give him the calories and nutrition he needs so that he starts gaining good weight. We started him on a blood pressure med and several new diuretics in “industrial sized doses”. And suddenly his belly stopped growing as quickly. We were finding answers. Because of the cat scan we found that his portal vein was not clotted but instead it is incredibly narrow causing the same effect.

“Because we have things under control and his vein is not clotted, we are going to hold off with the listing.”

Just like that the light was snuffed out. We were adrift in the ocean, being tossed about, lost. No direction. This has happened before. We find a solution. It works for a couple days and then we are right back in the hospital. I don’t think I can do this. There is no ending. Will we spend days in the hospital? Months? Years? How do I raise my children when we have no security? When our lives are constantly tossed to and fro?

I was devastated. Don’t get me wrong. I was thrilled that he was doing well. But I have a hard time trusting that these solutions will work when they never have previously. It’s not that I want him to have a transplant at 6 months. I would love for him to be big and strong before he needs it. But I don’t know how to survive for a long time when we spend so much time in the hospital trying to get him to be ok and he’s not even listed. Mentally those hospital stays are easier when I know that transplant is coming. Now I just feel plunged into the darkness and the despair.

Then my baby boy laughed for the first time and a light appeared. He rolled over for the first time. Another light. His belly stayed small for 4 consecutive days. It did not slowly grow bigger, but it stayed small and soft. Light. We had friends and family reach out and bless our family. More lights. We came home and I watched my children together. Saying sweet things. Watched as Beckett couldn’t stop staring and touching Addie. Watched his smile. More lights appeared. In my mind I looked around and realized that I am in a dark field looking to the sky. And it is full of stars. As my world gets darker and scarier, more lights appear in my sky. Some are little, others are large. But they are my hope. That this will end. That things will get better and brighter.

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Life’s Battlefield

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I was given two weeks off by my employer for the holiday season. Due to Beckett’s health, I have spent three whole days outside of the hospital. The family/home situation has been a little tricky and so Kim has spent a majority of the hospital time at home with Adalyn and Raemee. It has been such a blessing for them to have their mother around. I think it has helped them feel ok about their brother being gone.

While being alone with Beckett I have experienced some of the best moments of my life. Quickly followed by some of the hardest. I have learned things about my son that I probably never would have paid much attention to. His development in some areas are prohibited and yet he is shining in others. He has found his imagehands and his mouth during these past two weeks. He keeps me on my toes as he grabs all the wires and tubes attached to his body. My favorite is when I put my face close to his, he will reach up from his hospital bed and start to run his fingers and palms over the skin of my face. He does it so gently, inspecting every little part of me, and then will occasionally stop at my nose and squeeze. It makes me laugh every time and turns my insides gooey. I love the feel of his soft skin and scrawny fingers as he explores my facial features.

As I look over him peacefully sleeping, I am overwhelmed with feelings. Feelings of all kinds. Feelings I have never felt before. I have so many wishes. Wishes for Beckett. Wishes for our family. I am conflicted. I feel in over my head. I feel more love than I thought was ever possible to feel. I have to go back to work tomorrow and it pains me to leave my lil buddy’s side. Since our first child Adalyn was born I have bonded deeply with my girls. Yet, there is something different about Beckett. It is almost like, I can’t take his battle away from him, but being by his side makes me feel like I am fighting it with him. I want to spend every possible minute with him. The reality of Beckett’s possible future haunts me and I don’t know how to properly manage my feelings with what I have to do and am personally responsible for. Which is go to work and bring home the bacon.

imageI keep telling myself that if I don’t go to work, Beckett has no chance for survival. His battle would be over without our insurance and income. Does that mean our battle fields are changing? Can I still a member of Beckett’s army but can no longer fight by his side? He stays and fights in the hospital and I take the fight to the office? The weight is setting in and I realize that I have to bite the bullet. There is strategy in battle and a war is never won on a single battlefield. Some battlefields however may be the turning point of a war. Losing on the financial battlefield would absolutely be the turning point for Becks and our family. As I leave my general’s side, I know that this is the fight that must be fought. It’s a fight against my emotions. It’s a fight for survival. It’s a fight because I love ya Beckett! I’ll be back fighting by your side just in time for the weekend.

 

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