Monthly Archives: October 2014

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

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Morning…

IMG_6799I wake up. I hear Beckett stirring next to me and pray for five more minutes of sleep. I realize that’s not going to happen so I climb out of bed and use the bathroom. I hear him start to fuss. “Hurry up, Kim” I say to myself. I grab a syringe and quietly head downstairs to the fridge trying not to disturb the girls. Opening the fridge, I pull out the medicine bottle, double check the directions and fill up the syringe. 1.25 mL.

Carrying the medicine, I head back upstairs. I pull a baby wipe out from its container and split it in half. I put the syringe on half of the wipe on our bed.”Morning bubba!” I then pull a smiling Beckett out of his bed and change his diaper, carefully inspecting the color of his poop. Phew. It’s a dark enough color. I put the new diaper on. Time to measure his belly. I grab the measuring tape and put it under his back. “Please, please let it be the same.” I wrap it around his belly and bring it together right by his belly button. 42 cm. Perfect.

Then I move him to the middle of our bed and go into our bathroom to get the rest of his medicine. 2.5 mL of his pink antibiotic. I grab the dreaded vitamin. I open it up and immediately the smell hits me. Why? Why does it smell so bad? Scrunching my nose, I take the two medicines back into our room and lay them next to the refrigerated one.

I pull Beckett to the edge of the bed. He smiles at me blissfully unaware of what he’s about to go through. “Hey bud, you ready?” I grab the nasty orange vitamin. I pinch his cheeks and put the syringe in the pocket of his cheek. He starts to swallow and lick the syringe. I put more in his mouth pinching his cheeks so he can’t push it out with his tongue. Orange starts to drip down his cheek and I panic, grabbing the other half of the wipe before it stains his clothes or our bed. One down. Two more to go. I reach for the pink medicine. Oh how he hates the pink one. Still smiling and talking to him, I put it in his cheek. He gulps. And gasps. I hear the air bubbles go into his belly. He coughs. I sit him up and help him burp. “You ok?” He smiles. I lay him back down and we keep going. “Good job!!” We finally finish. I reach for the last medicine. He does great. I wipe his mouth and pick him up. He burps and I wipe the orangish pinkish spit from his lips. “All done Becks!” I kiss his sweet cheeks and start getting him ready for the day.

12 hours til we do it all again…..

Written by: Kimber

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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

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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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The Messenger

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We have been home from the hospital now for almost 24 hours. It’s an amazing feeling to be in the comfort of your own home. However, even though I am comforted by the familiarity, now that we are home, I feel heavy. My head hurts, it’s hard to breath, my stomach still feels sick, and my eyes just want to close. I’m pretty sure these are the side effects of being overwhelmed, scared, and completely weighed down from the pressures of life. As the hours pass by I gradually accept that these feelings are going to be my new way of life.

Kno, knoc, knock! Kimmie and I look at each other with a puzzled look. “Who could be at the door?” I thought. I open the door and recognize the mans face but I don’t know his name. He introduced himself and mentioned that he is a member of our ward (a ward is an group of members of our church defined in a specific area). He was holding a plate of cookies and I felt like I should invite him into our home. He came in and informed us that he was prompted to stop by yet had no idea what he was doing or why he was now sitting in our home. The next 15 minutes were filled with this man bearing testimony of the divinity of our Savior, Jesus Christ, the power of prayer, and even though we are scared of the unknown, God knows exactly what he is doing. He looked me in his eyes, called me his brother, and promised me that everything was going to be ok. The Spirit of God surrounded me like a warm hug and I knew what this man was telling me was true. I knew that God had sent this man as a servant to deliver a specific message for Kim and I.

The weight was immediately lifted and I could feel of Gods love for our family. I was suddenly ok and accepting of this new way of life. What an indescribable and marvelous feeling it is to have confidence that God is in your corner. I am not oblivious to the facts that the road ahead is going to be hard and will stretch me in ways that will hurt, but I am sure that we won’t be on this journey alone. Our Father in Heaven knows what his children need and with this knowledge I find peace knowing Beckett is in better hands than my own.

Written by: Shawn

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Kasai Recovery – Day 5 Finally Home

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We woke up around 6 am again. This time though it was from the worst sleep ever. Because I could nurse, Beckett woke up every couple hours. He wasn’t terribly satisfied with only nursing for 15 minutes and then it would take us a good 45 minutes after nursing to get him back to sleep. It was miserable. Once we were up and going, I started to feel a little better. We changed his diaper and noticed that it was still green (yay!) but there was also some white in it (bad!). White means the liver isn’t working. I decided to talk with the surgical team when they did their rounds.

Shawn went to go shower and while he was gone Dr. Scaife came to see how we were doing. He had a couple of colleagues with him. He asked if we wanted to go home and I said we did, if Beckett was ready. He asked how he was doing. I told him that I thought he was doing well. He was happy, managing pain well, and peeing and pooping great. But I then told him about my concern with the green poop that had some white in it. He said, “His poop is green?” I nodded. He then looked to his colleagues and got this look on his face of slight excitement. “Well that’s encouraging!” Then he fist bumped me. Yep. A man of few words who makes more money in a week than I do in a year fist bumped me. It was pretty awesome.

We got everything ready, got our discharge papers and packed our stuff to get ready to leave. We spoke with our nurse before we left. We had Tammy again and it was so great. She knew us and knew Becks. She also was wonderful because she would talk to us. She would be frank and didn’t sugar coat anything but the way she talked to us wasn’t depressing. She told us to always have an overnight bag packed when we have appointments because a lot of times, they do the labs and then the numbers don’t look great so they admit them to the hospital. She also told us exactly what to look for and keep track of and when to call the doctor. I felt so much better after talking to her. I felt like I could possibly handle things once we got home. She told me to trust myself. This was hard for me because I feel like I completely missed the fact that Beckett was so yellow. Or at least I ignored it for awhile. I didn’t want to think anything was wrong. And now I’m paranoid that I’ll miss something else. She was very encouraging. She got me back into a good place and we grabbed our belongings and packed him up and left for home.

And now we wait. We wait for a few weeks to find out if the surgery even worked. We wait to see if his poops stay good colors. We wait for the day that his labs come back horrible and we move to a transplant. We wait. Waiting. I’ve never been good at waiting. But for now I have no choice. So I will enjoy the wait. I will enjoy the good moments while waiting. And I’ll pray that we will be waiting a really long time.

Written by: Kimber

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Kasai Recovery – Day 4

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The next morning, after the surgery team talked with our nurse, they gave the go ahead to just start breastfeeding. I was shocked. I thought that we would slowly move up the ounces in a bottle before they let me nurse him. But I was so happy! So we tried. After 3 days of not nursing, it took him a minute to get the hang of it but once he did, you could tell he was so happy. He nursed for about 10-15 minutes and then was done. I made sure he burped and then we just watched him for the next couple hours. He was happier. I was so glad he had a full belly. Since he did so great, they were talking about sending us home.

 The next feed came. I fed him for 10-15 minutes and when we were done, he was still acting so hungry. So I let him nurse for another 5ish minutes. He finished, I burped him and we laid him in bed and were talking to our nurse about our fears of going home when all the sudden, he started puking! He vomited at least 2-3 oz. It was insane. And terrifying. I literally was shaking. Well after that, our nurse informed us that we would no longer be going home. I was sad and at the same time relieved that we had one more day with the doctors and nurses checking on him.

 So we bathed this sweet boy, got him cleaned up and decided to only feed him for 10-15 minutes and make sure he was thoroughly burped. We did that for the rest of the day and into the night and he did awesome. Did some normal spits but no more puking! I figured I would just up his feeds a minute at a time over the next couple days.

Throughout the day, he continued to poop great. Sometimes we were a bit nervous about the color, yes, I’m obsessive, but most of the time we were just thrilled. And this day was awesome because he was happy and talkative. Oh how I love to hear his coos. He talks way more than the girls did and I just eat it up!!

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