Category Archives: Perspective

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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Emotions

It’s late and I don’t know if this will make any sense but I have so much going through my mind and I need to get it out. Another liver baby passed away. I didn’t know him or his family like I do a lot of the others that have lost their fight with liver disease, but as I lay in my bed tonight, my wall came crashing down. My tears started flowing. My heart aches for these families. Too many little ones have gone to heaven lately. I do a pretty good job of distancing myself from it all. I have to. That was almost us. We almost lost Becks. I still have nightmares that we lose him. I know that something could still happen. I treasure each moment with him because deep down I’m terrified that I will lose him. I’ve seen it happen. My heart sinks with each new post of a family who has been diagnosed, or whose fight has come to an end. I’ve even pulled away from some of the groups I’m part of because it’s too hard. How do you navigate through all the mixed emotions? The heartache that you know they are experiencing, the terror that it could be you, the relief that it isn’t, the faith that things will work out, the joy that you see in your own life, the guilt that you have something that others desperately want back. I don’t know how to feel or act. I am trying to find my place in my new life. I am trying to move forward with faith and not fear and yet not become hardened. I’m trying to not bury my emotions. I want to feel. I want to remember what we went through and remember the pain and fear and worry. I want that to help me to help others. I also want to feel the joy and happiness in my life but that means I have to feel the pain. It’s torture. The agony of seeing wonderful friends go through devastating trials; ones that would break me. The fear every time we get Beckett’s labs, worried that something might be wrong this time. It’s hard having this new level of feeling. It’s hard having it be real life and not just something that happens to other people or in stories.

I find myself clinging fiercely to those I love, my husband, my children, family and friends. I find myself praying harder than ever for miracles in the Lord’s timing, for peace in His plan and the courage to walk tall each day. I want to find my purpose in all this. Why have things turned out the way that they have? What can I do? How do I make a difference? I don’t know the answer. I’m trying to figure this out daily. So for now I will pray and weep for those around me, I will squeeze my kids a little harder, and I will turn myself over to Him to mold me and strengthen me, to show me the way I should go, to use me. And I will feel. Love, sorrow, joy, fear. I will allow myself to feel it all. And tonight it’s pain.

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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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One

Such a simple number – One. But it is my favorite number. I’ve seen the power in this number. One smile, one miracle, one good day, one happy moment. One act of service that lifts a burden, one healing cry. One phone call that changes your world, one nurse or doctor that makes all the difference, one hug when you need it the most, one milestone you never thought someone would reach. One life altered forever.

And now one more ONE that means more to me than I ever thought it would. One year old. There was a time when Shawn and I were not sure that we would see our baby boy reach this day. Now it’s here. It means more to us than I can express in words. Our hearts are so full and I’ve found myself crying multiple times. This is our miracle. This is our one major moment in our lives that has changed us forever.

Looking forward, we will take our life one day at a time, experiencing each moment to the fullest. I will never take one moment for granted because I know how powerful those moments and events are. I love my life. I am so blessed. This ONE year old is a miracle. He has a spirit unlike any I have ever encountered and he is already doing amazing things with the ONE life he has been given. He is changing the world. He certainly changed mine. Happy 1st birthday, beautiful baby boy. We love you so much!

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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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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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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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