Monthly Archives: February 2015

“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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He is Yours

As I was driving home alone the other night to spend the evening with the girls, I found myself contemplating the day. We had just been told that Beckett would be listed to receive a new liver, that there were no other options. Our doctor was out of ideas and Beckett just wasn’t responding to any of them. I had handled the day well, processed what was happening and hadn’t cried much. It was dark outside. I was focused on driving, the cars around me, the lights. But then my thoughts drifted to that morning when we had gone to pick Beckett up from interventional radiology where he had gotten his belly drained. When we arrived, he was limp, and unresponsive. His blood pressure was lower than I’ve ever seen it. The nurse was trying everything to wake him up. To stabilize his blood pressure. I’ve never felt so scared or so helpless.

My eyes welled with tears in the car as I recalled our morning. Then as I continued to reflect on Beckett being listed and what that entailed for him, getting really sick, major surgery, possible complications, life long medications, blood draws and doctors, I started to feel so small and I began to weep. Furiously brushing the tears from my eyes so I could focus on the road. But they wouldn’t stop. Then came the sobbing. I started to pray out loud, to express my frustration, my fear, my relief. As I was praying I said, “He is yours. Heavenly Father, he is yours. Please take care of him. I will do my part. I will love him and take care of him to the best of my ability, but ultimately he is in your hands.”

He is yours. Liberating words. I can’t do all of this alone. I don’t know what will happen to my son. But I know God has a plan and I trust him, no matter the direction.

I see Addie struggling. I hear her cry because she loves her brother. All she wants is for him to come home. “She is yours.”

I see Rae regressing. Throwing tantrums. Trying to control the situation around her while her life feels out of control. “She is yours.”

I see Shawn. He is so strong. But then I see the slow tears run down his face or he gets real quiet and shuts down. I don’t know how to help him. “He is yours.”

And I know where I am at. Trying to hold it together for everyone. Trying to make sure everyone is loved and taken care of. That no one is forgotten. Trying to swim and not drown. Trying to stay positive. “I am yours. Please take care of me.”

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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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