Tag Archives: life

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.

Advertisement

2 Comments

Filed under Perspective

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

IMG_6933

2 Comments

Filed under Perspective

11 Days of Dishonesty

It’s dark. It’s late. I’m tired. I can’t fall asleep because I can finally feel. In this moment my net is wide open and vulnerability is scoring. It’s been 11 days since I subconsciously put the wall up. 11 days since a tear was shed. It’s been 11 days since I have felt honest with myself and my emotions.

It’s a necessary evil to make the decision not to feel. It seems to make talking to others about Beckett’s liver disease more comfortable. It makes it easier to play the situation off as a natural part of life. It also shows I am strong and faithful. Or does it? Does it really do all of those things when deep down inside I am scared shitless? When every single time I change my sons diaper and see his giant scar across his ever expanding abdomen. Or when he smiles at me and I look him in the eyes to smile back and all I can think of is, “agh, his eyes still look yellow.” What about when others kindly ask, “how is Beckett doing?” and I have to sheepishly admit that I have no idea. As his father, I have no idea how Beckett is doing. What I can tell you is that he is still yellow and he blows out of 3 outfits everyday because we are forced to use a bigger size of diaper than a kid with his weight would traditionally use because his stomach is huge.

Ask me about one of my other kids, I will tell you exactly how they are doing because they are healthy and they are living their lives the way they should be. Or are they? Is it normal for your four year old (Adalyn) to ask you every morning if Beckett is going to see the doctor that day? Which we have learned is her way of asking if Grandma is coming over so Mom and Dad can go stay at the hospital for days. She also thinks that it’s now perfectly normal for people to show up at dinner time with bowls of food for us to eat. Is it normal for your two year old (Raemee) to walk through every room in the house screaming your name and crying because she didn’t see you walk downstairs to change the wash? No, it’s not. Why? Because the first two years of her life she didn’t care what part of the house you were in because she wanted you out of her business. Nowadays all she seems to care about is my approval of her.

So here I am finally being honest for the first time in 11 days. I’m scared. I’m terrified that I may lose my son someday because he won’t get the liver that he needs. I’m nervous that a transplant will have complications and he rejects the new liver or that his body makes him pay the price for having a transplant. The unknown date of this future event seems to haunt me. I’m not just scared for Beckett. I’m worried about Kim and the burden that she has to carry as the mother of our home. I’m sensitive to her emotions and feeling but don’t know how to help her. I’m worried about Adalyn and Raemee and the lives they will have to live now that their brother has freakin’ Biliary Atresia. The mysterious disease with an unknown cause that can only be cured by receiving someone else’s liver. You want honesty, ok. It hurts. It sucks… And I feel like as the provider of my home I am failing to provide my family with what they need. I can’t just go to the shopping mall and pick up a liver for my son. I can’t stay home from the hospital with the girls and leave Kimmie by herself in that depressing building of pediatric medical miracles. Which means I can’t stay home to provide my girlies with the parental love and comfort that they have grown accustom to their whole lives and deserve.

So now what? I guess I hit the lights and rebuild the wall in my sleep. When I wake up in the morning I guess I will be feeling, OK.

Written by: Shawn

4 Comments

Filed under Perspective

Little Warrior

IMG_6708When we first started figuring out what was going on with Beckett, I posted a picture to Instagram about what we had experienced. I mentioned that Beckett was going about everything with such a happy demeanor and I called him my little warrior. I don’t know why that word popped in my head specifically instead of a more common word like fighter. But it came so clearly. He was a warrior. I’ve pondered a lot lately trying to figure out why that word was so important. As I was thinking about it last Wednesday, a story in The Book of Mormon: Another Testament of Jesus Christ about the 2,000 stripling warriors came to mind. I decided to make that the object of my scripture study the next day.

It just so happened that Thursday, Shawn took Addie to preschool and Beckett took a long nap. We had a very quiet morning and I was able to spend some good time with my scriptures reading the story of the 2,000 stripling warriors and thinking about it. This story is about a group of people who after repenting of their wickedness, made a covenant with God that they would never take up arms again. Well war came upon them. Their brethren were fighting for them and they felt bad because they weren’t helping. They were about to take up arms and fight when their sons (who had NOT made the covenant) said that they would go to war for their fathers. As they fought, they were injured but NOT ONE of the 2,000 sons was killed in battle. What I learned from reading this story was amazing. It has changed the way I view our situation.

I started in Alma Chapter 53 and got to verses 20-21.

20 And they were all young men, and they were exceedingly valiant for courage, and also for strength and activity; but behold, this was not all—they were men who were true at all times in whatsoever thing they were entrusted…

21 Yea, they were men of truth and soberness, for they had been taught to keep the commandments of God and to walk uprightly before him.

Then I moved to Alma Chapter 56:46

46 For as I had ever called them my sons (for they were all of them very young) even so they said unto me: Father, behold our God is with us, and he will not suffer that we should fall; then let us go forth…

Here Helaman (their commander) is describing these young men. I felt so strongly in my core that this is Beckett. I believe that my little man is so courageous and is doing much better with this situation than either Shawn or I. It doesn’t matter that he is a two month old baby. I remember when he first smiled at us after his surgery. There was a look in his eyes. He had this. He was ok. It was like he was telling us that he was fine. His courage strengthens mine. And then I read that last line again, “Behold our God is with us, and he will not suffer that we should fall; then let us go forth.” How true this is. Our God is behind us. He will watch over us and protect us. Those 2,000 warriors knew that and they went forward in faith. Beckett is the same. He is so happy and trusting, even with the scary things that have happened to him.

I then moved on to Alma 56:47-48.

47 Now they never had fought, yet they did not fear death… yea, they had been taught by their mothers, that if they did not doubt, God would deliver them.

 48 And they rehearsed unto me the words of their mothers, saying: We do not doubt our mothers knew it.

Now I have read this story many times in my life. I have always thought of how amazing those mothers were. But reading it this time with Beckett in mind, it struck me so differently. I am now the mom of a warrior. This is me. This is my responsibility. And in order for me to teach my son, I need to believe this. And live it. Faith. It all comes down to faith. Their mothers instilled such faith in them that they were willing to go into battle. I want my son to be strong. I want him to be able to handle things with courage and with happiness no matter how bad things get. And in order for that to happen, I need to be the example. By this point I was in tears. I felt such a greater love for those mothers. I knew that I wanted to be just like them.

At this point in the story, these young men went to war. Alma 56:56 reads:

56 But behold, to my great joy, there had not one soul of them fallen to the earth; yea, and they had fought as if with the strength of God; yea, never were men known to have fought with such miraculous strength; and with such mighty power…

And then moved to Alma Chapter 57:21, 26-27.

21 Yea, and they did obey and observe to perform every word of command with exactness; yea, and even according to their faith it was done unto them; and I did remember the words which they said unto me that their mothers had taught them.

26 And now, their preservation was astonishing to our whole army, yea, that they should be spared while there was a thousand of our brethren who were slain. And we do justly ascribe it to the miraculous power of God, because of their exceeding faith in that which they had been taught to believe—that there was a just God, and whosoever did not doubt, that they should be preserved by his marvelous power.

27 Now this was the faith of these of whom I have spoken; they are young, and their minds are firm, and they do put their trust in God continually.

I started to think of Beckett’s future. Oh how I wish this for him. He has already proved to be so strong but I pray that he can fight with the strength of God as he undergoes many challenges in his life. I know that he can have a wonderful life despite the health issues. I love that last verse because I can see my son in it. He is young. His mind is firm. And I can see him putting his trust in God for the rest of his life. I know God is there for him. Christ knows exactly what Beckett has been through and what he will endure. He knows it perfectly and is the perfect person to rely on through all this.

That’s not to say that we aren’t going to have hard days. We will. Probably a lot of them. We are going to struggle at times. But if we will trust, if we have faith in our Savior, we will conquer whatever comes our way.

I love my son. I love him so deeply that I will be strong for him. I will teach him what I know. I will teach him faith. We will make it through this together.

Written by: Kimber

1 Comment

Filed under Perspective

Bicycle Therapy

IMG_3196

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

1 Comment

Filed under Perspective

Buckle up, God’s driving

IMG_6607Multiple times a day I get a text message from family or friends asking, “how is Beckett doing?” or “how are you doing?” and “Is there anything I can do for you?” The kindness and love of these people humble me to my core. However, with every text message response I have to ask myself;

How am I REALLY doing?
What fear is Kimmie hiding that she is covering up with motherly positivity?
Is Beckett’s blasted Kasai going to work?
How long will it work for before he will need a transplant?

A simple answer applies to all of these questions. I don’t know.

I remember driving home to Orem, Utah with my father on I-15 from Salt Lake City one afternoon. There was a constant rain drizzle falling from the bland gray sky. With no announcement quarter sized raindrops attacked with great ambition. The freeway quickly filled with inches of water creating the worst possible driving conditions. With every knock of rain on the windshield it was clear to my father and I both that there was nothing clear at all about the situation we found ourselves in. We couldn’t see past the windshield. Everything was a blur except the fact that steady streams of water on the highway were the immediate cause of newly congested traffic that could result in significant peril.

This scenario was scary as a young boy. Scarring enough to deposit this life event into my memory bank. With my surroundings increasing in danger and blurring vision ahead I had to rely on my father to get me home safely.

I find myself in a similar situation now. How could my son have Biliary Atresia? Where did this all come from? I can’t see past today but all I think about is tomorrow. I just got sucker punched by Life. It hurts. It makes me angry. I am grateful for the life lesson but would like to be done learning now. I crumble without prayer and the companionship of my wife. It’s scary to look at your son and see the potential negative scenarios that could take him from this life to the next and you know, you know that you will have to face each one of them.

So here I am Lord. I’m in the passenger seat with my seatbelt securely fastened scared as hell. Please, get us home safely.

Written by: Shawn

Leave a comment

Filed under Perspective

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

Leave a comment

Filed under Perspective