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Finding Joy in the Journey

Wow. It’s been a long time since we have posted. Thankfully that is because life is beginning to feel normal, well a new normal. We are busy living life rather than worried at what life is going to throw at us. Post transplant life has been interesting for us. 1. We have had to come to terms with the differences in this life, physically. We have labs, doctor visits, and lots of med changes. But also 2. We have had to find our new roles in the world. I want to explain a bit about these changes we’ve been going through.

Becks is doing awesome. His kidneys are bouncing back, his liver is HAPPY, and overall he is developing perfectly. But it has been a challenge. We have been doing weekly labs for 9 months. The poor kid is a pin cushion. He has handled it so well until he learned the word no. Now when he sees the needle, he says no and cries. It’s pretty heartbreaking. As you can imagine, it’s been interesting to fit labs into our weekly schedule. Some days Shawn just takes him, other times I do, but my favorite times are when we go as a whole family. We know all the lab techs and enjoy seeing them weekly. They all love Becks. We just got word that we can move his labs to monthly and it was such great news!!

Along with our weekly labs, we’ve been going to our liver doctor monthly. It was weekly, then every other week and now we’re finally to monthly. It was hard to drive up to Salt Lake so often but now that it’s monthly, it’s so much easier. It’s fun to see the faces of the nurses and doctors, who worked so closely with us, as they see how much B is growing and changing. It makes me so happy to see just how well he is doing.

Our biggest struggle has been getting all of his labs perfect. It seems like we get one under control and something else goes crazy. Initially it was his potassium and magnesium. Those have both resolved. We have constantly been trying to get his tacro (immunosuppression) in the right spot. We think we’ve figured that out. His main struggles now are high blood pressure, his CO2 level and anemia. He is on a lot of iron and it smells and tastes horrendous. His medication for his CO2 is basically baking soda. We mix it all in his chocolate milk and thankfully he takes it although just looking and smelling it, is enough to make me gag. Hopefully as we get closer to his one year mark, we can come off of more of these medications.

Right after transplant, we had feeding therapy to help him eat and get that stinking tube out. He did so well!! He also was doing so great on his own with sitting up, crawling, etc that I declined physical therapy. He didn’t need it! Now that he’s 19 months old we are noticing that he is behind with his speaking. He can communicate great with us and understands everything we are saying but he won’t babble, mimic or talk much. His main words are mama, no, yuck and uh oh. He has said other words but he says them for a day or two and then won’t say them anymore. He used to say dada, cheese, please, ada (addie) and nigh nigh. He just won’t say them anymore. So we made the choice to have speech therapy come in to help him stay on track. We are excited to see the progress he makes over the next few months. I’m hoping he does as well with speech as he did with his feeding therapy.IMG_1876

Even with all of these things going on, life has been pretty perfect. We are finding joy in simple things and really just loving being together as a family. We had a few scares earlier this year with a virus that wiped us all out for a month. It was bad for us all, not just Beckett, although he was the only one hospitalized for it. Twice. That has resolved and we know that it is just our life now. We know that when B gets sick, it is a greater chance that we will end up in the hospital.

As I mentioned earlier, our two main challenges have been getting used to the physical changes like I’ve already described and then the emotional challeges. The harder one for Shawn and I is finding our place. When Beckett was diagnosed, we became ‘that family’. We were put on display and were under a microscope, our lives out there for all the world to see. This helped us in many regards because people knew what we were going through and jumped in to help. But it also is a lonely and stressful place to be. We became Beckett’s parents. The mom and dad of a little boy needing a liver transplant. It defined us. It molded us and changed us. Now that B is doing so great, we aren’t on display as much. A lot of people in our neighborhood have moved and so less people know to what extent we were dealing with everything last year. And when the dust settled after transplant, Shawn and I both felt lost. Who are we? What is our purpose? We were an ordinary family again. I felt very lost. I was completely changed and couldn’t find where I fit with family, friends and neighbors. I felt like I couldn’t relate to people anymore. Conversations would happen and I felt like I couldn’t contribute because bringing up Becks would be a downer on the conversation. It was so odd. I’ve never experienced anything like that before. Relationships are altered, changed. We still don’t feel like we fit perfectly, but we are finding our way, finding our place again. We also don’t quite know what our purpose is yet, but we are focusing on us and I’m sure that will come. We want to make a difference, we want to help, we want to share. And one day, I hope to be able to look back and see that we did just that and that there was a place for us in this crazy thing we call life.

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Perfect Little Moments

It’s 5 pm. I’m making dinner. Music is playing loudly in the background and I can’t help but dance a little. I hear the girls playing upstairs, their laughter echoing through the house. As I stir our dinner, I feel a little tug on my pants. I glance down and see a perfect little face beaming up at me. Beckett scrunches his nose and smiles at me. I laugh and watch him as he crawls away to his high chair and pulls himself up. He looks back at me and smiles again. “Love you bubba.” I turn back to our dinner. And the tears start to fall.

I have moments like this almost daily now. Where the complete normalcy and beauty of the ordinary comes shining through. I love these moments. Moments that remind me just how far we’ve come and what we’ve learned. This week especially has been extremely emotional. On Thursday, it will have been exactly one year since B was diagnosed. One year. I remember so vividly the fear and worry that we were experiencing. And now our lives are so happy and joyful. A year makes such a difference.

Things at home are so perfect. Sure we have our ups and downs but overall life is just so wonderful. The changes that have occured over the past couple months are huge. His picc line was pulled out. No more lipids! We went from twice weekly blood draws to once a week. This has been great since we don’t have the picc line and have to poke Becks each week. We have been going to the doctor every 2-3 weeks instead of weekly. His belly has been staying stable and we introduced fats into his diet. He did great with that so we introduced milk. He hated it at first but once we introduced him to chocolate milk, he’s been doing just fine. We’ve gone from 15 meds down to 10 with a couple more looking like they will disappear soon. We’ve discontinued more than 5 but have added a couple in. It’s fine though because we discontinue heavy meds and add in simple ones like a multivitamin. So many people take multivitamins!!! I’m thrilled that some of his meds are simple ones. He has gone from barely drinking 1-2 ounces of water/apple juice to drinking 25 ounces, 20 of that is milk! Because of this we have cut back how much he gets through his feeding tube. He was getting 17 ounces but now only gets 5-7. We are hoping the feeding tube comes out soon. He eats 3 meals a day and has a couple snacks. He likes pretty much everything!! Just over a month ago I was feeling discouraged because he would barely put anything in his mouth. Our speech therapist was pretty stunned the last few times she came and he had made huge leaps. He went from not being able to sit, to sitting, army crawling, real crawling, pulling up to his knees and now pulls to standing. He is even letting go of the furniture with one hand and has rock solid balance. He is catching up so quickly. I am astonished.

One year ago, we were about to embark on the scariest journey I have ever been on. I kept thinking why us? Why Beckett? But now all I can think is Why NOT us? Why NOT Beckett? Look at how our lives have changed. Everyday is beautiful. Everyday I see the beauty in the ordinary that I never noticed before, at least not with any regularity. I see it in everything we do. I cry tears of joy almost daily thanking my Father in Heaven for his abundant blessings and his wisdom in teaching us a very valuable lesson. A painful one but one that changed my perspective and has made me a better person, wife, and mother.

And so I look forward to future little tugs on my pants, and my heart. Constant reminders of how blessed we are and how wonderful life can be if you’re willing to look for the little, ordinary, perfect moments.

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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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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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Life is Everything but Routine

“So, they drained between 400 and 500mls of fluid. We are going to have him stay the night and monitor the output of his fluid through the drain. We should have him home tomorrow.”

“Just another routine stay right Dr. Book?”

She stops, turns around, looks up at me and says, “There is no such thing as routine. Each one of these kids is special.”

IMG_01655 miserable days later Beckett and I still find ourselves in the hospital. It’s Christmas Eve. It’s the most magical time of year and it feels anything but magical. If there is one thing I have learned from this hospital stay is that life as we know it is anything but routine.

There is a 2 year old boy from St. George, UT with Pneumonia in the room next door. St. George is roughly 5 hours away from Salt Lake City where Primary Children’s Hospital is located. He has a 1 year old little brother at home. Both his parents are here trying to get him home before Christmas. All he has to do is drink liquid orally and they can go home. He doesn’t want to.

Down the hall there is the most precious little girl who is just under the age of two. She was born with one kidney and has fought through hospital stays her whole life. They found out earlier this week that she needs a kidney transplant. They have been able to stabilize everything except one of her levels. If it stabilizes then they can return home to Idaho for Christmas.

Then there is Beckett. This boy has taken me to the cliff and brought me back from the edge. Only because of how much I love him. In the past 3 months we have now stayed 29 days/nights in the hospital. This stay out of all of the others has been the most painful and excruciating for me. I believe Beckett feels the same way.

IMG_0185Kim and I felt strongly that we needed to bring him into the hospital last Friday. We knew something was not right since Beckett’s demeanor changed drastically over a 24 hour period. Since then, he has endured being drained twice, daily blood work, IVs, a picc line, multiple antibiotics, change in diet, hydrating oxygen tube, and a catheter. For 4 days he wouldn’t sleep more than 1 hour for every twelve hours in the day. His breathing was strained, he ran a fever, and the only way to console him was to push him around the hospital in a stroller. I have never seen him so worn down and uncomfortable. In the meantime, nurses and doctors confirmed that something was wrong but didn’t seem to know the right course of action. When trying to address one issue, it would create others.

As a parent you can imagine the fear and frustration. You can imagine the pain I felt for my child who was suffering. I was confused. I still am confused. Regardless, slowly the anger snuck in. “Fix him! Figure it out!” Beckett’s behavior started reminding me of a visit we made to one of our liver friends who was teetering on existence in this life and how uncomfortable and irritable she was. I began visualizing my future with Beckett. The horror struck as I realized that this will one day be my constant reality and that Becks is only going to get worse before he can get better. I was not prepared for this life lesson and rude awakening.

I was praying constantly. So many people reached out and mentioned that they were praying as well. Yet Beckett, wasn’t getting any better. I began to feel like I was not praying correctly. “Maybe I am not worthy of God’s miracles” I thought. Why is Beckett not getting better? My faith began to crack. Doubt crept in. I felt the only way to be able to fix him is if I do it on my own. Yet, I didn’t know where to start. I am not a doctor. All I have is limited knowledge that has accumulated over the past 3 months. I knew I was missing something and I didn’t know what. I couldn’t see the clear picture. I wanted to scream and throw things. I remember just wanting to break something. At the same time, I knew that none of my desired temper tantrums would help.

IMG_0176Pondering Beckett’s scenario and racking my brain trying to come up with what God is trying to teach me, I realized that these feelings apply in so many scenarios. Knowing that you need a new career but not knowing where to start or where to go. Being turned down interview after interview. Understanding if you don’t get a new job your family is in jeopardy. Or having a loved one struggle with addiction. Doesn’t matter what kind. They are all consuming and life threatening. How do you help them? What do you say? Why do they keep doing these things despite how much you fast and pray? The list goes on.

Life is everything but routine. There are no official manuals or how to books that say “Do this and your whole life will be perfect!” However, there is a source of self dependency and humility that is required in these terrible situations. If you are not humble enough to admit you do not know what to do, that you need Gods help, and if you are not willing to grab the reigns and do your part then nothing is going to get better. I strongly believe it’s ok to be afraid, angry, and doubtful. Those feelings are normal as long as they drive you in the right direction towards results and hope.

We finally found the right direction with Beckett. He slept through the night and we are restarting his feeds today after withholding them for 24 hours. There are many obstacles that lay in this warriors path, but we will take them as they come. For now, we will give him what he needs and keep hoping and praying for the Christmas miracle.

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Nacho Thoughts

IMG_0180Last week as Kimmie mentioned was just a real pain. The last 72 hours especially. I have had so many thoughts and feelings emerge. I’m trying to stay positive. I’m trying to quit missing the miracles that are taking place. It’s midnight, I am exhausted. Beckett can’t sleep. I can’t sleep. I’ve been fumbling, frustrated all week trying to extract my feelings from within to release them on a pad of paper and have nothing to show for it.

It’s midnight and I am now eating nachos in the Primary Children’s empty cafeteria. Beckett is in a stroller next to me wide awake and cranky. Kimmie is asleep on the couch upstairs in our room. I have no idea who the nurses are tonight and so now I’m eating nachos. Good thing I am on what I’ve been calling the “anxiety” diet. I don’t have to worry about stuffing my face with processed cheese because I’m stressing.

Will we be home for Christmas? What does Beckett’s future look like? Is he going to need to be drained every week? Where is my happy boy? When is he going to smile again?

It was so good to see my girls tonight for a few hours. I missed them so much! How do I make sure I have time and energy to provide Adalyn and Raemee with what they need?

How are we going to raise money for Beckett’s liver transplant once he gets listed? When is he going to get listed? How do I support my family financially when I feel a larger weight to support them physically and emotionally?

Why won’t Beckett sleep? What has been causing his fevers? Maybe I’m not praying right. Nothing is getting better. I don’t feel like I am getting answers. How do I pray then? What’s the Lord’s timing? How come I can’t see the bigger picture? What details am I missing? I feel like I am missing something. Why can I not see through the fog? Please let me see more than two feet ahead of me!

Ugh! I ate them all. My nachos are gone.

C’mon Beckett. Let’s go back upstairs and take another lap around the hospital.

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