Tag Archives: Shawn

Understanding the Universe

“In a very short period of time, our understanding of the universe changed forever… The immensity of the universe didn’t suddenly change, but our ability to see and understand this truth changed dramatically. And with that greater light, mankind was introduced to glorious vistas we had never before imagined.” – Dieter F. Uchtdorf

I have thought often the past few weeks on these words. I can relate to them. They tell my story. I see the value and meaning of life differently than I had ever seen or pictured it before. The veil over my face has been lifted to see a greater universe than I knew previously. I strangely feel the dark and sunny places of other individuals emotions and can relate to them. As much as my own experiences will allow me to of course.

Before Beckett’s diagnosis of Biliary Atresia, we had what I considered a great life. Kim and I found the chaotic rhythm for our family of 3 beautiful well mannered kids. Our marriage was thriving as we established weekly dates and activities together. I was starting to find the groove of my career after being promoted to a new position of visibility. Talk of insurance and financial planning was for “other” people. Adalyn and Raemee, our two oldest girls, have never had ear infections. No medical threats would ever happen to us. Life was as close to perfect as it could get.

IMG_3184The text message I received from Kim on that sunny Tuesday was the start of my eye opening experience that is now the life I live. Since that Tuesday, 35 days have past. In those thirty-five days, 17 of them to this day have been spent in the hospital. Puddles of tears have been shed, hard conversations have taken place, and ultimately God has provided me with a humbling blow to my core that has made me grow up in areas I have never wanted to. Nor did I know existed within me or my capacity. I think we have all experienced this to different degrees.

In the end I am grateful for the deeper capacity of gratitude, empathy, perspective, and emotion that I feel for others. It has enabled me to love. To see the universe for what it’s supposed to be. I have a changed soul and I can’t describe it. You can’t put words next to something like what I feel inside now that is so powerful. I can say that it runs deep, it’s consuming, and it requires me to take action.

I’m not grateful for what is happening to Beckett. I would never wish this on my son. Though he be a warrior, it’s not a fight I want him in so that I can learn a soul transforming lesson. However, I am grateful for the level of communication it has provided me. As I looked into Beckett’s eyes last night, I saw him. I saw the fear that exists inside him. That same fear I see on the faces of parents of sick kids in the hospital. The same look I see when I look in the mirror. I felt how tired he was from a week of being poked (5 different IVs and multiple blood draws), sedated (twice), and drained (the excessive fluid from his abdomen). I understood for a brief moment the exhaustion of being administered 6 different medications one after the other, or the toll that deep vomiting multiple times a day can take on a 3 month old body. When he wrapped his little fingers around my thumb, he was asking me to not leave him alone and I heard through his expression him say “I am trying dad!” For a second, time stopped and I was learning from my man cub. He has a mission to complete. A battle to fight. My son has a purpose and he knows it. We all do. Just like I love my son, our Father in Heaven loves us all. I understand now why “in the sixth hour there was darkness over all the land” (Matthew 27:45) and in the ninth hour “the earth did quake, and the rocks rent.” (Matthew 27:51) It wasn’t easy for the Son, and clearly it wasn’t easy for the Father, but they saw and were aware of the glorious vistas of the universe.

Beckett is a warrior. Even though he has already been through so much, his battlefield is going to get harder, scarier, and so much worse. In all of this there is a lot that will be asked of him. He will pay a steep price to gain the life he has waiting for him post liver transplant. I am so proud of him and through him I am finally seeing and understanding what life is really about. #loveyaBeckett

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11 Days of Dishonesty

It’s dark. It’s late. I’m tired. I can’t fall asleep because I can finally feel. In this moment my net is wide open and vulnerability is scoring. It’s been 11 days since I subconsciously put the wall up. 11 days since a tear was shed. It’s been 11 days since I have felt honest with myself and my emotions.

It’s a necessary evil to make the decision not to feel. It seems to make talking to others about Beckett’s liver disease more comfortable. It makes it easier to play the situation off as a natural part of life. It also shows I am strong and faithful. Or does it? Does it really do all of those things when deep down inside I am scared shitless? When every single time I change my sons diaper and see his giant scar across his ever expanding abdomen. Or when he smiles at me and I look him in the eyes to smile back and all I can think of is, “agh, his eyes still look yellow.” What about when others kindly ask, “how is Beckett doing?” and I have to sheepishly admit that I have no idea. As his father, I have no idea how Beckett is doing. What I can tell you is that he is still yellow and he blows out of 3 outfits everyday because we are forced to use a bigger size of diaper than a kid with his weight would traditionally use because his stomach is huge.

Ask me about one of my other kids, I will tell you exactly how they are doing because they are healthy and they are living their lives the way they should be. Or are they? Is it normal for your four year old (Adalyn) to ask you every morning if Beckett is going to see the doctor that day? Which we have learned is her way of asking if Grandma is coming over so Mom and Dad can go stay at the hospital for days. She also thinks that it’s now perfectly normal for people to show up at dinner time with bowls of food for us to eat. Is it normal for your two year old (Raemee) to walk through every room in the house screaming your name and crying because she didn’t see you walk downstairs to change the wash? No, it’s not. Why? Because the first two years of her life she didn’t care what part of the house you were in because she wanted you out of her business. Nowadays all she seems to care about is my approval of her.

So here I am finally being honest for the first time in 11 days. I’m scared. I’m terrified that I may lose my son someday because he won’t get the liver that he needs. I’m nervous that a transplant will have complications and he rejects the new liver or that his body makes him pay the price for having a transplant. The unknown date of this future event seems to haunt me. I’m not just scared for Beckett. I’m worried about Kim and the burden that she has to carry as the mother of our home. I’m sensitive to her emotions and feeling but don’t know how to help her. I’m worried about Adalyn and Raemee and the lives they will have to live now that their brother has freakin’ Biliary Atresia. The mysterious disease with an unknown cause that can only be cured by receiving someone else’s liver. You want honesty, ok. It hurts. It sucks… And I feel like as the provider of my home I am failing to provide my family with what they need. I can’t just go to the shopping mall and pick up a liver for my son. I can’t stay home from the hospital with the girls and leave Kimmie by herself in that depressing building of pediatric medical miracles. Which means I can’t stay home to provide my girlies with the parental love and comfort that they have grown accustom to their whole lives and deserve.

So now what? I guess I hit the lights and rebuild the wall in my sleep. When I wake up in the morning I guess I will be feeling, OK.

Written by: Shawn

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Bicycle Therapy

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Now that we have been home from the hospital a few days and have had some time together as a family a few things were becoming very clear. First, the girls are getting extremely clingy and needing some love and attention from Kim and I. Second, as much hope and comfort as Kim and I feel, we spend far more time feeling pain and hollow. Third, I’m starting to feel cooped up at home and the take out/cafeteria food from the hospital is making itself comfortable in my abdominal region.

The girls were upstairs for quiet time so I asked Kim if I could escape for an hour. I quickly threw on my cycling kit, did a few necessary stretches and was out the door.

Getting on the bike had never felt so good. It had been weeks since my last ride and I was definitely having some withdrawals. I couldn’t exactly tell why at first. I thought it might be because of the warm air passing through my kit or the smells of the outdoors. It wasn’t until I approached a small hill that I recognized exactly why and what I was feeling deep inside. My first challenge. I stood up on my pedals and thrust my right heel into the ground and pulled up with my left knee and repeated one after another. I could feel my heart rate increase. The beating not only pounding in my chest but pulsating in my arms and head. I changed my grip on the handle bars to a firm grip and I was now pulling up on them with my upper body. During this beautiful moment of synergy I look down at the ground ahead of me to see my shadow. The realization hit me, “you are in control!”

Since Beckett was diagnosed with Biliary Atresia I hadn’t been in control of anything in my life. Everything was determined by Beckett’s needs and what the hospital nurses or doctors would say that we could do. On the bike I felt alive and free again. I knew that the pain I felt in my legs was self inflicted and was managed by my own desires. The pain wasn’t forced on me like the facts that Beckett will someday need a liver transplant and the life that we dreamed we/he would have will never be what we originally wanted for our son.

I get to the top of the small hill and sit back down on my seat. An overwhelming sense of freedom hits me followed by the same amount of emotions. I yearned to be in control of my sons fate. I wanted all the answers to questions that nobody could give me. I wanted our old life back. The one where all we worried about was what was for lunch and dinner that day. The one that didn’t require administering 3 kinds of prescriptions numerous times a day for the rest of our boys life.

For the remainder of my ride I pondered about the decision I needed to make. I could feel angry about the lack of control I have over life, or I could control what was controllable.

So for now, I will love my son. I will cherish every minute I have with him and be grateful for every day he is alive. I will put faith in God that the lifestyle that Beckett will have and timing of a transplant is in His hands. I will seek the best medical attention and rally my support group for prayers. I will voice the need to be an organ donor to as many people as my voice can reach. Once I am done, I will count my blessings and start over again. Wouldn’t you do the same?

Written by: Shawn

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The Messenger

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We have been home from the hospital now for almost 24 hours. It’s an amazing feeling to be in the comfort of your own home. However, even though I am comforted by the familiarity, now that we are home, I feel heavy. My head hurts, it’s hard to breath, my stomach still feels sick, and my eyes just want to close. I’m pretty sure these are the side effects of being overwhelmed, scared, and completely weighed down from the pressures of life. As the hours pass by I gradually accept that these feelings are going to be my new way of life.

Kno, knoc, knock! Kimmie and I look at each other with a puzzled look. “Who could be at the door?” I thought. I open the door and recognize the mans face but I don’t know his name. He introduced himself and mentioned that he is a member of our ward (a ward is an group of members of our church defined in a specific area). He was holding a plate of cookies and I felt like I should invite him into our home. He came in and informed us that he was prompted to stop by yet had no idea what he was doing or why he was now sitting in our home. The next 15 minutes were filled with this man bearing testimony of the divinity of our Savior, Jesus Christ, the power of prayer, and even though we are scared of the unknown, God knows exactly what he is doing. He looked me in his eyes, called me his brother, and promised me that everything was going to be ok. The Spirit of God surrounded me like a warm hug and I knew what this man was telling me was true. I knew that God had sent this man as a servant to deliver a specific message for Kim and I.

The weight was immediately lifted and I could feel of Gods love for our family. I was suddenly ok and accepting of this new way of life. What an indescribable and marvelous feeling it is to have confidence that God is in your corner. I am not oblivious to the facts that the road ahead is going to be hard and will stretch me in ways that will hurt, but I am sure that we won’t be on this journey alone. Our Father in Heaven knows what his children need and with this knowledge I find peace knowing Beckett is in better hands than my own.

Written by: Shawn

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Buckle up, God’s driving

IMG_6607Multiple times a day I get a text message from family or friends asking, “how is Beckett doing?” or “how are you doing?” and “Is there anything I can do for you?” The kindness and love of these people humble me to my core. However, with every text message response I have to ask myself;

How am I REALLY doing?
What fear is Kimmie hiding that she is covering up with motherly positivity?
Is Beckett’s blasted Kasai going to work?
How long will it work for before he will need a transplant?

A simple answer applies to all of these questions. I don’t know.

I remember driving home to Orem, Utah with my father on I-15 from Salt Lake City one afternoon. There was a constant rain drizzle falling from the bland gray sky. With no announcement quarter sized raindrops attacked with great ambition. The freeway quickly filled with inches of water creating the worst possible driving conditions. With every knock of rain on the windshield it was clear to my father and I both that there was nothing clear at all about the situation we found ourselves in. We couldn’t see past the windshield. Everything was a blur except the fact that steady streams of water on the highway were the immediate cause of newly congested traffic that could result in significant peril.

This scenario was scary as a young boy. Scarring enough to deposit this life event into my memory bank. With my surroundings increasing in danger and blurring vision ahead I had to rely on my father to get me home safely.

I find myself in a similar situation now. How could my son have Biliary Atresia? Where did this all come from? I can’t see past today but all I think about is tomorrow. I just got sucker punched by Life. It hurts. It makes me angry. I am grateful for the life lesson but would like to be done learning now. I crumble without prayer and the companionship of my wife. It’s scary to look at your son and see the potential negative scenarios that could take him from this life to the next and you know, you know that you will have to face each one of them.

So here I am Lord. I’m in the passenger seat with my seatbelt securely fastened scared as hell. Please, get us home safely.

Written by: Shawn

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The Cycle of Feelings

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Gray. Gloom. Bitter poison flowing through my veins. Anger. Pain. With each beat of my heart the cloud surrounding my senses grows darker and gains hunger for capture. Surrounded by positivity, prayers, and encouragement, I am alone. I’m on the island with others, I see them, I feel for them, but only feel myself. Frustrated. Numb. I open my mouth and nothing comes out. Where’s the words? Who will listen? Discouragement. Disappointment. I yearn for change. I close my eyes and hope. I fold my arms and pray. Why is this happening? Fear. Guilt. What do they think of me? They don’t understand. I need time. Selfish. Helpless. Let me look at you in the eyes. Tell me you are there and you’re ok. Show me a sign this is working. Hollow. Hurt. Nothing happens. More of the same continues. Strength transforms into mush. It trickles down my legs and out through my toes. My stomach turns sick. Sunshine. Warmth. Peace restored.

Ready?

Let’s go at it again.

Written by: Shawn

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