Author Archives: son0fstin

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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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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Moving for a Miracle

4:32am: I feel pressure on my shoulder. It’s Kimmie. My first inclination is to pretend like I didn’t feel anything and fall back asleep. I then hear Beckett. The voice in my head calls him a monster. He woke up
at 4:30am the previous day as well. Starting to feel like Groundhog Day.  I roll out of bed and get him taken care of. I rest my hand on his face, he reaches back and grabs my fingers. I love this lil Booger!

4:45am: I am back in bed. Stress hits me. I start thinking of my travel for the day and my meetings while I am out in Chicago. AGENDAS!!! I hate meeting agendas but they are the necessary evil. I haven’t prepared them yet. I need to get them sent out. I tell myself that I will do them on my flight. FLIGHTS!!! I haven’t booked my flights yet for my trips coming up. Anxiety is now rattling my cage.
5:00am: I can see the darkness in the room changing tone. Ugh. What am I doing awake? I turn to Facebook. After a quick browse I put my phone down. I start thinking of new friends. Oh how I like them. My mind gradually slips into thinking of old friends and then really old friends. I can’t help but reflect on how they have all changed. How they have changed? How much have I changed? How much have I changed in the past week? Seems small but deep down I know it’s bigger than I am giving these changes credit for.
5:30am: Scripture time. Might as well do it now and maybe I can read myself back to sleep?
6:00am: My body is now restless from forced attempts to fall back asleep. I roll over. The closed window blinds are now glowing around the borders where the gaps are. The sun is rising behind Mt. Timpanogos. I pull my headphones out from my bedside drawer. Maybe music can help distract me and I can rest?
6:30am: Still wide awake. My alarm goes off and I roll quickly out of bed and begin stretching. Oh, relief.
6:45am: I pull on my running pants. Emotions trickle through my body. The emotions reach my eyes and I quickly blink and think of manly things to distract me from tearing up. I finish getting ready and take two steps down the stairs and then….
“Crrrrrrrreak!”
It can only be one person. It’s my oldest. She has a long history and a sick sixth sense of interrupting my desire to begin a workout on time.
“Good morning, June!”
“Hi Dad, I waked up super quickly so I could see you!” I couldn’t help but laugh. Sixth sense confirmed.
7:00am: Finally out the door. To begin my first day to a new commitment. The commitment of #movingforamiracle. Bill and Andy, the parents of Dru, one of the most beautiful little girls you will ever see, 15 days ago started running a mile a day with the commitment of doing so until Beckett receives his liver transplant. When Dru was on the waiting list they did something similar and I was blown away when they began running for Beckett and asking others to do so as well. How could I not join them in the cause? If I don’t join them, how could I expect others to do so?
7:05am: I get to my starting point. I begin skipping. Don’t ask. It’s what I always do before starting a run. I think it helps me find a rythim. I generally have headphones but not today. I wanted to pace myself to the beat of my heart and listen to the gravel crackle beneath my feet. I take a deep breath. I smell the dew resting on the grass in the fields by our home. It takes me to a place deep inside where harmony and balance reside. I pick up the pace.
I feel great. I feel in control. I then hit a hill. I can feel the resistance increase. My breathing gets harder. I think of Beckett. I can hear him breathing heavy in my mind. My memory is now flashing through all the times that he has done so because of the pressure on his lungs caused by fluid inside his abdomen. A fire inside starts burning and I am determined to conquer the hill in front of me. With this new determination, I lift my head up and I see the shadow of a church steeple. Comfort calms the fire burning as I realize how amazing our church ward/congregation has been. So much love. So much support. So many prayers and people fasting. They are making sacrifices for our family. As I focus on the steeple, it’s shadow moves and the sun emerges. It hits me. It’s warm. In its warmth I receive answers and confirmation that God is aware and he loves me. I am blinded by the light, I can’t see anything in front of me. God is reminding and teaching me that I don’t need to see everything clearly. That trials, obstacles, stress or worry are blinding objects in life. Even though I can’t see, the Lord is my light and can see clearly the path before me. Tears begin slowing rolling down my cheeks. They feel cold. For a moment I feel vulnerable. It’s just me and God and I don’t have to hide from myself. This sense of freedom empowers me to reach my destination. I get to the top. For the first time at the end of a run I didn’t want to stop going. So I didn’t. I kept moving forward and eventually made my way home.
7:30am Home.
It’s in the moments we least expect that friends emerge and God shows his hand. I never knew how much I needed to move for a miracle. The miracle of Beckett receiving a liver and the miracle of myself finding peace when I have not been able to for so long. Ironically we found out today that Beckett’s Kasai surgery to give him more time is no longer working. Every day now, I move for a miracle and I invite you to do the same. #loveyaBeckett

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“Suffering Might Indeed Be Unfair…”

The past few weeks have been a little rough on the family. Beckett was admitted and the decision was made to list him for a liver transplant. A few days later I was up in Canada for work, when I got back I went straight to the hospital to take care of him so Kim could go home. Because my flight was delayed she left before I could see her. We planned several outings so I could see the girls and my wife but everything fell through. We were told multiple days in a row that Beckett “might” go home tomorrow. That never happened and we are still here. It could be another week before we go home because of the setback he had today. At least this is the timeframe we have in mind but Beckett’s doctors don’t want to give us a timeframe or criteria he needs to meet to send him home. It’s been discouraging to say the least.

While struggling with the situation that life was presenting me, I came across this:

“Now all this suffering might indeed be unfair if everything ended at death, but it doesn’t. Life is not like a one-act play. It has three acts. We had a past act, when we were in the premortal existence; and now we have a present act, which is mortality; and we will have a future act, when we return to God.” – James E. Faust, Oct 2004

Reading these words pulled me back to real reality and changed my perspective. What’s two weeks of not seeing my wife and daughters if it means I get to spend eternity with them and take care of my son? Granted, I don’t want to miss their entire lives but how often do I have the mindset that my world is crumbling to pieces. I’ll tell ya, it’s more often than I should. If a miracle happens, and I believe one will, Beckett will be past the worst in about two years. Our roles may be challenging and I might regret saying this, but a couple years of unfair moments is minuscule in this thriller that God has us a part of.

Lights. Camera. Action!

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my Liver Kid

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It’s 10:30pm. It’s been a busy night on the hospital unit. Cranky RSV kiddos everywhere. Beckett’s been fast asleep for the past few hours. Love my boy. I am sitting outside his room and have been attempting to write a blog post and am starting to get frustrated with the results. It’s evident that my writers block is going to continue. At the end of the station, Ashley, Beckett’s nurse, stands up and walks towards his door. My attention is now focused on her. She is opening his door. I pull my headphones out and am close behind her.

I enter the room. Ashley is untangling him from his chords. He is clearly not happy. I spot his bink and immediately grab it and put it under the faucet. He loves his binky wet before he takes it. I think it has to do with his diuretics drying his mouth out. He takes it and starts rubbing his eyes. All good signs that he will be back asleep soon. Once he is comfortably situated Ashley makes a move for the door. I begin to follow and Beckett starts screaming.

“Ok. Ok, Son. I am not going anywhere.”

I return to his crib side and he lifts his hand up. We look each other in the eyes. He doesn’t want to be alone. I lean in. His tiny little hand cups my cheek. His fingers begin tickling my face. He slowly moves his hand up my face to my hair. He is now grabbing and twirling my hair. His eyes close and his breathing returns to a regular pace.

(null) (1) copyI decide to stay a few minutes and soak in what just happened. As I step back from his bed, his eyes open. I’m still here. He is still calm. I walk over to the other side of his crib. He rolls over to follow me. I see the blinds are still open on his door so I walk over to close them. He rolls back over and watches me. Once I am done, I return back to the other side of his crib to sit on the couch. He rolls again and follows my every move. My heart melts a little knowing that I am enough for him. After a few minutes, he grabs his blanket and pulls it over his face. That’s the sign, he is ready to go back to sleep.

I am either sheltered or may be biased (and I very well could be both of those things), but I have never met anyone like my Beckett. He captivates me. Though he cannot talk he has been blessed with a gift to communicate deeper than language with those he interacts with. I felt terrible tonight as I recognized our blog posts and updates are dominated by his disease and the emotional pain that Kim and I carry from being parents of a liver kid. Yes he is sick, but he is such a good kid. Such a fighter and will be a far better man than I can ever hope to be. I am scared of him receiving a transplant but I am comforted by knowing he has a mission to do great things in his life. Even with pumps, tubes, and steady fluctuations of health, this boy continues to be the strength that his parents and sisters need. How can someone so little make such a big impact? Makes me wonder a bit what I am doing with my life. Makes me ponder Christ’s teaching to become like a child. Makes me grateful to be his father. #loveyaBeckett

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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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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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