Tag Archives: learning

Quit Missing the Miracles

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I am lounging on the corner of the hospital couch. Kim is fast asleep occupying most of the couch on my left. I can’t blame her. Being beautiful ain’t easy! Beckett is sleeping comfortably in his bed to my right. It’s the first time this week that he has slept more than an hour without waking up. The only light in the room is from the glow of monitors that are pumping fluids into Beckett’s body. Outside the closed door of our plainly painted hospital room is the nurses station. I can hear them chatting it up and laughing. I feel comfort knowing they are so close.

These hospital weeks are brutal. I thought they would get easier. The problem with them is the tension starts long before the hospital stay begins. We have always had appointments on Wednesdays with our liver doctor. Monday rolls around and your body begins to tighten with anticipation. On Tuesday your stomach is sick and your head is wanting to explode from all of the unknown and “what if” scenarios that have been racing through your brain. Wednesday, your heart beats outside your chest and you have a shortness of breath because you know something bad is going to happen.

IMG_0126This week for some reason has been unusually harder than others. The initial shock of Beckett’s liver disease has officially come and gone and now we are facing the bare bones reality of it all. I am feeling overwhelmed from the stressful/emotional roller coaster. From good news that Beckett’s Kasai surgery is working to bad news that Beckett has Portal Hypertension, which could cause him to need a transplant sooner even though his surgery is draining bile from his liver. Good news that Kim can start breastfeeding again to bad news 24 hours later that leads Kim to decide to stop breastfeeding entirely. Good news that “you’ll go home tomorrow” to bad news of “it will be three more days.” I watched our doctor drain 16.5oz of ascites fluid from Beckett’s abdomen. I have been covered in multiple ounces of throw up on several different occasions. Tomorrow I will learn how to stick a feeding tube up my sons nose and down his throat into his stomach.

It is not uncommon that when we are in the hospital we receive extremely encouraging words and support from friends and family. Most often these messages come via Facebook and Instagram. These notes of love keep us going and help us see the positive in all the negative. Today I received a text message from a friend that said:

“Just when all seems to be going right, challenges often come in multiple doses applied simultaneously. Those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more. He therefore gives you experiences that stimulate growth, understanding, and compassion, which polish you for your everlasting benefit.”— Richard G. Scott

IMG_7344 copyIf I step back a minute from liver disease, discussions of transplant timeframes, vomit, and feeding tubes I can count the blessings of all that is going right. I can see the growth that Kimmie and I have experienced. I can take pride in what I am doing and what I have learned. I can feel comfort and peace from the prayers of hundreds who are reciting Beckett’s name in personal and family communion with God. That is a miracle! I question. How many miracles have I glanced over because I have been selfish and not compassionate? Would this week have been better if I had opened my perception up to greater understanding? Have I disrupted my own spiritual growth pattern because I have chosen to be comfortable with my attitude and daily routine?

Tonight as I ponder how miserable my week has been, my feelings turn to gratitude for the reminder that I received today from a friend. I am grateful for why these hospital stays are hard. I take pride in understanding that my Father feels I am prepared and ready to grow. It’s not fun and it’s not something I wake up in the morning and look forward to. It’s hard. Growing pains are uncomfortable and unlocking true understanding is going to take some practice. It’s a challenge and I don’t know if it will ever get easy. What I do know is that I don’t want to miss the miracles that are taking place all around me.

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I Can Do Hard Things

When Beckett was diagnosed with Biliary Atresia we were put in touch with Andy, a mom of a little girl who also has BA. This woman has become a very, very dear friend and someone who I completely admire. Through all the crap that they are going through with their daughter she is always positive and willing to lift others up. The other day, I received a gift from her. It was a cute onesie for Beckett and also a necklace that says “I can do hard things.”

IMG_7012I’ve been wearing the necklace for the last week to give me courage as we heard difficult news from doctors and now deal with stressful situations with our little warrior. And that sentence has been in my mind constantly: I can do hard things. I’ve reflected over the past weeks that we have been dealing with everything with Beckett. And I have come to the realization….

I CAN do hard things.

I can administer 6 different meds, two times a day to my baby without him spitting it out. Some of the nurses were having a hard time and it was getting everywhere. But I was able to do it. And then he started throwing up the meds. One night, we spent 30 minutes giving him meds. We finished and he threw them all up and the doctors decided that we needed to re-administer them. We took our time so he wouldn’t throw up. After we were done, I looked at the clock. Meds had taken us two hours from start to finish. That was hard. But I did it. And I’ll do it everyday for the rest of his life.

I can watch as the IV team inserts IV after IV after IV. Five in fact, all in the span of five days. One head IV, two in his left foot and two in his right. It was hard to see him like that. It was hard to see the nurses flush his IV and realize it went bad. I cringed every time I heard a nurse say his IV was sluggish. It was so hard to see him bleeding from blown veins. It was hard hearing him cry so much. But I did it. And I was there to comfort him after.

As hard as it was hearing bad news about his liver and belly, I went in prepared to hear bad news about that. I did not expect to hear that I had to stop nursing. That was a hard pill to swallow. Even once we realized it would most likely be temporary, it was still hard. It was and still is hard to pump every three hours just to turn around and feed Beckett a bottle of special formula. It takes a lot of time and that’s hard. But as hard as that is, it’s much harder to know that I can’t hold Beckett when he’s hungry. I tried. He nuzzles and tries to nurse and cries so much. It’s hard to not be able to comfort and feed him. But I can do it. I can make it through.

It’s hard knowing that I have two precious girls who need me at home and a little warrior who is sick and needs me at the hospital. I can’t be in two places at once. It’s hard having my mother heart split in two. It’s hard knowing that others are taking care of them when I so fervently wish that I was the one home with them. But we made it work. We survived. And we are closer than ever. It’s hard to know that in the future we will be apart for much longer periods of time. That thought breaks my heart. But we will do it. I can do it.

It’s hard being at home all by myself trying to juggle everything. Trying to do our everyday things like breakfast, lunch, and dinner; getting the girls ready for the day, naps, laundry, dishes and even preschool. Then adding in pumping and Beckett’s meds. And on top of all that trying to take care of myself and giving the girls enough time with me and giving them my undivided attention. The attention they desperately need. I struggle finding enough time during the day to do EVERYTHING. It’s a battle. A hard one that I seem to be losing. But I can do it. It may take me time and I may need help for awhile but I will figure it out and it will become our new normal.

If I have learned nothing else through the past two difficult weeks, the one thing I have learned is that I CAN DO HARD THINGS. I am strong. I am stronger than I ever knew. And it’s empowering. I got this.

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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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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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Life Lessons from Primary Children’s Hospital

This past week as we have spent numerous days in the hospital, I have learned several little life lessons. To make sure I don’t forget them I really wanted to write down the things that I’ve learned.

1- Everyone has trials and pain

I know this one seems so obvious but as I have watched so many people here in pain, it has become so clear to me that everyone goes through so much. And most of it is not visible to the naked eye. It reminds me of the hymn Lord I Would Follow Thee which says “In the quiet heart is hidden, sorrow that the eye can’t see.” Oh how true this is. And how deep that pain goes.

As we sit in our hospital room, we have seen families get admitted. The looks of anxiety, fear and sorrow on their faces can be overwhelming at times. My heart just aches because I can now relate in a way that I never have before. I know just how deep that pain goes. It gives me greater empathy for what others may be experiencing.

2- The world is more kind than we realize

I felt so very alone when we came here. Then we have met countless doctors, nurses, social workers, staff and families of sick kids that have reached out to us and pulled us in. I have had several moms of kids with Biliary Atresia reach out to me and show me that I am not alone. They don’t even know me. But the love that they have showed has made a huge impact in my life.

I’ve also noticed small acts of kindness that go such a long way, from the waitress who gave us a free appetizer just because, to the people who have graciously donated to help us out financially, some who we haven’t seen or spoken to in years, to the nurses who stroke our baby’s head and talk to him instead of just taking care of his needs, to the smiles and nods of encouragement as you pass a fellow parent in the halls, to the surgeon who stops what he’s doing to put his hand on your shoulder and make sure you’re ok. It’s amazing how kind and caring the world is if we really pay attention to it.

3- We are a family

As I started to realize just how many others are going through similar things that we are, I started to feel like we were part of a new family. It dawned on me that our “families” can come in so many varieties and sizes. We all have our immediate family and our extended family but we are also part of bigger family units like our church family or school families. And it was made so clear to me that we have joined a very special family when I met with some of the liver doctors and their social worker and the first thing the social worker said to us was, “Welcome to the family!” As I’ve spoken with parents of liver kids, I felt so included. I felt like I had met my sisters.

4- It’s the small things that matter

Another thing that has been reinforced in my mind that I knew previously was that it’s the small things in our lives that really matter. It’s the smiles, the kisses and hugs, the kind words that matter. The big stressful stuff just doesn’t matter in the long run. It’s our relationships with others. It’s the love that we feel and show. It’s service. That’s what matters. That’s what helps us all get to where we need to be.

5- Celebrate the victories

This was a powerful testimony to me this week. Celebrate the victories and forget the failures. As we waited for simple things like bowel sounds in Beckett, I thought about how important it is for us to relish those victories, no matter how small they are. A victory is a victory, no matter how small. When Beckett pooped for the first time after his surgery, we were so thrilled. Yep, over poop. Because to us it meant the world. It meant that after surgery on his intestines and moving them around, they were waking up and working. So poop was an important victory for us. So we celebrated by making a “POOO” ghost to put on the window of our room.

We also had a fantastic victory this morning with Becks smiling for the first time since Monday. Oh how my heart melted. What a great victory. This whole process has helped me realize that I need to find the victories in my day to day life and celebrate them whether they are little, like making a warm breakfast for my kids or big, like Beckett surviving major surgery. I am determined to do a better job with finding those victories and forgetting all the things that I didn’t get done, the “failures”. Because in the end, who cares. Who cares that they laundry didn’t get done or the dishes are dirty. I choose to focus on those things that I do accomplish.

6- The Lord is in the details

Oh how I know this is so true. I know that my Father in Heaven is aware of me and my family and our struggles. He has shown us so many tender mercies this week and I will forever be so grateful for him helping to make our trials a little bit easier.

When we were here last week, a friend in our ward sent me some contact info for a friend of hers whose daughter had liver issues. This woman added me to a couple facebook groups and through that we actually found out that across the hall from us was another family whose daughter has Biliary Atresia and is here waiting for her to get a liver transplant. I spoke with her online briefly and then the next morning as I went out to get a snack off the cart, I saw her. I introduced myself and she gave me a huge hug. We have since spoken several times and she has been a source of great comfort to me. I’m not alone. There are others who know what we feel like, who know the pain of finding out about this awful disease and feeling like you were punched in the face.

At the end of the week, we found a news article about a family in Pleasant Grove whose daughter, Mona is almost four. She had the Kasai when she was a baby and now was in need of a transplant. Her mom was a match and because she didn’t need a full liver, her mom was able to donate to her. So amazing. It gave us hope. Well, as we were waiting for Beckett to get out of surgery, we happened to overhear a phone conversation and quickly figured out that this woman was the grandma of Mona. We were stunned. Their live organ liver transplant was happening at the exact moment that Beckett was having the Kasai. When she got off the phone, we apologized to her for eavesdropping and then told her we knew who she was and told her about Beckett. She was amazing! Such faith. Such strength. Oh how that woman will never understand how she helped me through the scariest moment of my life so far. Later that day she sent Mona’s dad out and he talked to us for awhile about everything. Tender mercy for sure.

I know that the Lord has been with us. He has placed people in our lives at the right time to help us through. To help us process. To help us heal. Without Him I don’t know how we would have survived. Oh how I need him. And my eyes have been opened to see just how involved he is.

Written by: Kimber

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