Tag Archives: Beckett

my Liver Kid

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It’s 10:30pm. It’s been a busy night on the hospital unit. Cranky RSV kiddos everywhere. Beckett’s been fast asleep for the past few hours. Love my boy. I am sitting outside his room and have been attempting to write a blog post and am starting to get frustrated with the results. It’s evident that my writers block is going to continue. At the end of the station, Ashley, Beckett’s nurse, stands up and walks towards his door. My attention is now focused on her. She is opening his door. I pull my headphones out and am close behind her.

I enter the room. Ashley is untangling him from his chords. He is clearly not happy. I spot his bink and immediately grab it and put it under the faucet. He loves his binky wet before he takes it. I think it has to do with his diuretics drying his mouth out. He takes it and starts rubbing his eyes. All good signs that he will be back asleep soon. Once he is comfortably situated Ashley makes a move for the door. I begin to follow and Beckett starts screaming.

“Ok. Ok, Son. I am not going anywhere.”

I return to his crib side and he lifts his hand up. We look each other in the eyes. He doesn’t want to be alone. I lean in. His tiny little hand cups my cheek. His fingers begin tickling my face. He slowly moves his hand up my face to my hair. He is now grabbing and twirling my hair. His eyes close and his breathing returns to a regular pace.

(null) (1) copyI decide to stay a few minutes and soak in what just happened. As I step back from his bed, his eyes open. I’m still here. He is still calm. I walk over to the other side of his crib. He rolls over to follow me. I see the blinds are still open on his door so I walk over to close them. He rolls back over and watches me. Once I am done, I return back to the other side of his crib to sit on the couch. He rolls again and follows my every move. My heart melts a little knowing that I am enough for him. After a few minutes, he grabs his blanket and pulls it over his face. That’s the sign, he is ready to go back to sleep.

I am either sheltered or may be biased (and I very well could be both of those things), but I have never met anyone like my Beckett. He captivates me. Though he cannot talk he has been blessed with a gift to communicate deeper than language with those he interacts with. I felt terrible tonight as I recognized our blog posts and updates are dominated by his disease and the emotional pain that Kim and I carry from being parents of a liver kid. Yes he is sick, but he is such a good kid. Such a fighter and will be a far better man than I can ever hope to be. I am scared of him receiving a transplant but I am comforted by knowing he has a mission to do great things in his life. Even with pumps, tubes, and steady fluctuations of health, this boy continues to be the strength that his parents and sisters need. How can someone so little make such a big impact? Makes me wonder a bit what I am doing with my life. Makes me ponder Christ’s teaching to become like a child. Makes me grateful to be his father. #loveyaBeckett

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Our New Normal

We have now been home for a week. And we are starting to settle into our new normal. It goes a little like this:

7:15- Beckett stirs in his bed. Addie also comes in the room. “Hi Beckett!” I smile and lay in bed for a few more minutes while my oldest sweetie talks to her little brother.

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7:30- Beep! Beep! Beep! Beckett’s TPN and lipids are done. We have to unhook the tubes, saline flush his picc line and then flush it with heparin to prevent clots. We finish by placing a sterile alcohol cap on the end. We pick him up and cuddle on him now that he is tube free.

8:00- Rae starts to stir and Shawn prepares all of Beckett’s meds. 6 in the morning. A vitamin supplement, two diuretics, an antibiotic, a blood pressure med and a med to help keep his bile thin. He puts all the meds into Beckett’s feeding tube. Thank goodness for the feeding tube so we don’t have to fight him to choke them all down.

From 8:15-9:00 we get ready, head downstairs, let the dog out, feed Beckett, eat breakfast, sometimes get the girls dressed, and Shawn heads to work.

9:00/9:15- Tuesdays and Thursdays Addie goes to preschool. Oh how lucky I am to have a neighbor who takes her and picks her up. I don’t know how I’d do it. Beckett gets tired and I take him upstairs. Thankfully, he is starting to get back to his old self and has been putting himself to sleep.

9:15-11:00- The girls and I play, I clean, they play and make messes, we work on potty training Rae, I stop fights, we snuggle.

11:00- Beckett wakes. He is hungry again. He takes 2.5 ounces. It’s amazing. He used to only take 1 ounce every 4 hours. So this is huge for him. He now gets excited to see the bottle. We are making progress!!

Noon- I feed the girls and myself. Usually something easy like sandwiches or soup but sometimes I feel ambitious and make spaghetti or stir fry.

12:30- Nap time/Quiet time. Oh I love this time. It’s crazy getting the girls situated in their beds. And we just switched Rae to a big girl bed so it’ll be interesting to see if this time exists anymore. Once the girls are down Becks and I get a little time to ourselves before I put him in bed.

1:00- Beckett goes down for another nap. I head downstairs and clean up the kitchen. Straighten up the house a little and then I get to sit down. I either nap a little or I watch a show.

2:00- Addie’s done. She comes down to get a snack and watch a show while her siblings sleep. I clean some more or read a little.

3:00- Beckett and Rae get up. (Oh please Rae! Please take a nap in your big girl bed today!!) I feed Beckett again.

3:00-5:00- This is the time I usually get a lot of phone calls. The liver clinic will call, or home health. We change his meds every few days based on his labs. And home health is constantly talking to me about bringing me deliveries of NG tube supplies, or picc line supplies or the pharmacist calls to discuss his TPN and lipids. I also get calls from the home health nurses checking in and seeing if his picc dressing needs to be changed. Then I get calls from the delivery drivers letting me know when they will be coming by. The girls and Beckett just play and make messes. I love hearing the laughter and coos.

4:30/5:00- I put Becks down for a mini nap. And then I finally start thinking about dinner. Sometimes I make something nice. Sometimes I’m super prepared and throw something in the crockpot around 3. Other times we just make grilled cheese. Or grab take out.

5:30-7:30-  Shawn gets home from work, we eat, we clean up, we play, we dance, we feed Beckett. Then we like to watch a movie together and eat popcorn or ice cream.

7:30- The utter chaos starts. I head to the fridge and pull out Becks TPN, lipids and vitamins. I head upstairs to get it all ready and Shawn starts working with the girls to get them ready for bed. I’ve gotten pretty quick with setting up the TPN and lipids. I have to set the pumps up, prime the tubing, infuse the vitamins into the TPN bag, connect all the tubing, and change the end of his picc line. All while keeping everything sterile and clean. If I touch things, I have to start all over again. IMG_7622It’s quite the process. Meanwhile Shawn is battling the girls, getting jammies on, getting them to go potty, cleaning their rooms. Finally we reach a point where we all gather together, sing songs and say prayers. Then we put all three kids down. And then battle them to actually go to sleep. Becks is the easiest. He crashes and lately has been sleeping much better. The girls are a different story. Addie gets out several times, to tell us she loves us, to go potty, to get a drink. Then she goes right to sleep. With the introduction of the big girl bed, we are working on Rae staying in bed. We put up a baby gate so she can’t leave the room. Last night she yelled for Addie to save her. She also likes to strip naked at night. So it’s a work in progress.

Usually by 9:00, it’s quieter and we get a chance to relax a little. Talk about our days, watch some shows together. Then we head to bed around 10;30 and pray that all the kids sleep fairly well so that we get some rest.

My life is chaotic. My life is messy. My kids probably watch more tv than they should. We don’t always eat healthy. I get stressed and short tempered sometimes. My house is cluttered a lot. Things get neglected. I forget a lot. And guess what?

I ABSOLUTELY LOVE IT.

I love that we are all together. No one is in the hospital. Beckett is rolling over and has become a tummy sleeper (which is terrifying with all the cords). He is laughing. My girls are BEST friends. They love each other so much and are closer than I ever thought possible. They giggle and play pretend. They get to be kids and make messes. Shawn and I get to spend time together. We aren’t trying to keep our marriage strong from two different places. We are in the same house, the same room. We are happy. We are finally feeling a break from all the massive stress and fear. We are closer than ever. As much as I wish that Beckett didn’t have to go through this, that my girls wouldn’t tell people that their brother has a broken liver, that I hadn’t had to cry and worry as much as I have, I would never NEVER trade my life now. I love our new normal.

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Light

“We see no reason not to move forward and list Beckett.”

Oh the words that I’ve known were coming. It came out of the blue though. We have been in limbo for quite some time. Beckett’s liver labs and bilirubin levels keep going down and yet we’ve been in the hospital almost weekly dealing with massive amounts of belly fluid (ascites). Nothing works and yet they kept telling us that he was fine. It was so hard. How can he be fine when we are here all the time getting his belly drained? So when we found that there was a potential clot in his portal vein the doctors made the decision to move forward with listing Becks for transplant.

I saw the light. Finally. Instead of drifting around aimlessly, I finally felt like we could see the lighthouse. Our little boat had direction. We could now navigate through the big waves and stormy seas because there was the light. Even though I knew the light was still far away, I could see it! And then our week exploded.

We met with countless doctors, kidney doctors, surgeons, infectious disease doctors. Beckett had a cat scan, more ultrasounds and he had an incredible amount of blood drawn. We knew that we would still need to meet with social workers, financial aid people, and our liver team for a day of education. Holly, our liver transplant coordinator, brought by an entire binder of information for us. In the meantime, we were trying to get Beckett’s ascites under control. They drained his belly twice. They left the drain in. We tried IV diuretics. We tried multiple new diuretics. He started getting fevers. He wasn’t eating much. But as stressed as I felt, I could still see that light. He was being listed. The end was coming. Eventually.

We solved some of the problems. The drain was taken out and the fevers went away. We started TPN (total parenteral nutrition) and lipids (fats) which is a boost of nutrients, proteins etc to give him the calories and nutrition he needs so that he starts gaining good weight. We started him on a blood pressure med and several new diuretics in “industrial sized doses”. And suddenly his belly stopped growing as quickly. We were finding answers. Because of the cat scan we found that his portal vein was not clotted but instead it is incredibly narrow causing the same effect.

“Because we have things under control and his vein is not clotted, we are going to hold off with the listing.”

Just like that the light was snuffed out. We were adrift in the ocean, being tossed about, lost. No direction. This has happened before. We find a solution. It works for a couple days and then we are right back in the hospital. I don’t think I can do this. There is no ending. Will we spend days in the hospital? Months? Years? How do I raise my children when we have no security? When our lives are constantly tossed to and fro?

I was devastated. Don’t get me wrong. I was thrilled that he was doing well. But I have a hard time trusting that these solutions will work when they never have previously. It’s not that I want him to have a transplant at 6 months. I would love for him to be big and strong before he needs it. But I don’t know how to survive for a long time when we spend so much time in the hospital trying to get him to be ok and he’s not even listed. Mentally those hospital stays are easier when I know that transplant is coming. Now I just feel plunged into the darkness and the despair.

Then my baby boy laughed for the first time and a light appeared. He rolled over for the first time. Another light. His belly stayed small for 4 consecutive days. It did not slowly grow bigger, but it stayed small and soft. Light. We had friends and family reach out and bless our family. More lights. We came home and I watched my children together. Saying sweet things. Watched as Beckett couldn’t stop staring and touching Addie. Watched his smile. More lights appeared. In my mind I looked around and realized that I am in a dark field looking to the sky. And it is full of stars. As my world gets darker and scarier, more lights appear in my sky. Some are little, others are large. But they are my hope. That this will end. That things will get better and brighter.

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Life’s Battlefield

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I was given two weeks off by my employer for the holiday season. Due to Beckett’s health, I have spent three whole days outside of the hospital. The family/home situation has been a little tricky and so Kim has spent a majority of the hospital time at home with Adalyn and Raemee. It has been such a blessing for them to have their mother around. I think it has helped them feel ok about their brother being gone.

While being alone with Beckett I have experienced some of the best moments of my life. Quickly followed by some of the hardest. I have learned things about my son that I probably never would have paid much attention to. His development in some areas are prohibited and yet he is shining in others. He has found his imagehands and his mouth during these past two weeks. He keeps me on my toes as he grabs all the wires and tubes attached to his body. My favorite is when I put my face close to his, he will reach up from his hospital bed and start to run his fingers and palms over the skin of my face. He does it so gently, inspecting every little part of me, and then will occasionally stop at my nose and squeeze. It makes me laugh every time and turns my insides gooey. I love the feel of his soft skin and scrawny fingers as he explores my facial features.

As I look over him peacefully sleeping, I am overwhelmed with feelings. Feelings of all kinds. Feelings I have never felt before. I have so many wishes. Wishes for Beckett. Wishes for our family. I am conflicted. I feel in over my head. I feel more love than I thought was ever possible to feel. I have to go back to work tomorrow and it pains me to leave my lil buddy’s side. Since our first child Adalyn was born I have bonded deeply with my girls. Yet, there is something different about Beckett. It is almost like, I can’t take his battle away from him, but being by his side makes me feel like I am fighting it with him. I want to spend every possible minute with him. The reality of Beckett’s possible future haunts me and I don’t know how to properly manage my feelings with what I have to do and am personally responsible for. Which is go to work and bring home the bacon.

imageI keep telling myself that if I don’t go to work, Beckett has no chance for survival. His battle would be over without our insurance and income. Does that mean our battle fields are changing? Can I still a member of Beckett’s army but can no longer fight by his side? He stays and fights in the hospital and I take the fight to the office? The weight is setting in and I realize that I have to bite the bullet. There is strategy in battle and a war is never won on a single battlefield. Some battlefields however may be the turning point of a war. Losing on the financial battlefield would absolutely be the turning point for Becks and our family. As I leave my general’s side, I know that this is the fight that must be fought. It’s a fight against my emotions. It’s a fight for survival. It’s a fight because I love ya Beckett! I’ll be back fighting by your side just in time for the weekend.

 

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Life is Everything but Routine

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

“Just another routine stay right Dr. Book?”

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

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

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

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

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

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

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

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

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

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

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

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Nacho Thoughts

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

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

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

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

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

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

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

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

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I Am Not Forgotten

I hesitate to post this. I hesitate to share the reality of my life sometimes. Because it’s not always pretty. I hesitate because I worry what people will think of the way I react to situations. But it’s my truth and sometimes I just can’t keep the thoughts in. So here it goes.

We’ve been home for two days. And they’ve been rough. Within hours of being home, we managed to clog Beckett’s feeding tube. The medicine was just too gritty but being newcomers to it all, we didn’t even think about it. We tried to flush the tube. No luck. Pretty soon we were both so frustrated. What do we do? Do we pull it out? Do we call someone? Meanwhile, it’s 9:30 and our girls are running around crazy. Beckett is starving and crying. We feel frantic. Do something. We start blaming each other and our words get harsh. We get mad at the girls. Finally they are in their rooms. We pull his tube out. Completely clogged. I spend five minutes unclogging it. Now what? We need to start his overnight feeds. Frustration is mounting. I finally just put the tube in. We get the feeds going. Relief for about 30 minutes until Beckett becomes restless and starts having a hard time. His belly is not adjusting well to the overnight feeds. We get him to sleep and crash ourselves. He wakes in the middle of the night and pukes. I rinse out everything and clean him up. Shawn helps get him situated. We are exhausted.

Morning comes and we get going and Shawn goes to work. I’m on my own. I don’t sit down all day. Our next night is not better. After a day of running around and feeling tired, we get home late from a family Christmas party and it starts all over again. We are at our wits end. We get his feeds going and get the girls to bed and it looks like we might actually get some much needed alone time together. But Beckett won’t fall asleep. He is writhing in his bed crying. He is so tired. We try everything. More food. Binky. Lavender lotion, Rocking, Sshhing. Gas Drops. Nothing will help him. We strip him down and lay him on our bed, trying to calm him. Two hours later, he finally settles down. We fall asleep, angry and exhausted. Beckett wakes up at 5. He has blown out of his diaper. All over our bed. We take the sheets off and clean them up. All the sudden he starts vomiting. More time spent rinsing and cleaning and soothing this sick baby who is struggling. More angry words at each other. We are stressed. A couple more hours of sleep. Once we wake, Shawn gives Beckett his meds and he throws up again. I cry. I can’t do this. Shawn has to leave to work again.

The girls need me. Beckett needs me. But I’m angry. And exhausted. I’m confused and my mother heart aches for this sweet baby who is suffering. The girls argue a bit and I lose it. I completely broke down sobbing and yelling. Yelling at the girls for fighting. Yelling at God. He gave this trial to the wrong person. Trials are supposed to bring you down to ultimately help you grow and become a better person, more Christlike, with more empathy. But this trial is not doing that. It is breaking me and turning me into someone I do not want to be. So I was angry. And then the guilt set in. How can I treat my children this way? Why am I not stronger? Why am I such a brat to my husband who is just trying to help? Guilt leads to depression. Why do I feel so alone? Why am I forgotten? Why is God not helping me? Why can’t anyone see and understand this pain and hurt I feel EVERY day? It’s Christmas time and it’s supposed to be magical and wonderful. It’s not. It is stressful and frustrating and scary. I look at the world going on around me and all the joy and I feel so forgotten and lost. I plead with my Father, please help me. Please do not let me drown. Please do not let me shrink. Please save me.

After hitting rock bottom, I start taking care of the things that need to be done for the day. My head pounds and my eyes ache. My doorbell rings. It’s a dear friend. She takes one look at my eyes welling up with tears and asks if she can come in. All she came to do was drop some coloring books off for the girls but oh how I needed her. We talk for hours. In that time span several other friends reach out to see if I’m ok. Later on I talk on the phone to another good friend. Another friend reaches out to see if the girls can come play. All of these women say things that I need to hear. They validate my feelings. They address my deepest fears without me saying anything. They love me. I am not forgotten.

My hard days are just beginning. It feels terrifying to know what we have in front of us. I feel like I will not be able to handle it when I have a hard time with these minor things. I know many tears will be shed. But my Father in Heaven showed me something today. He will not take my hard days away. But He has not forgotten me and he will prompt others to reach out so that I always feel His love. And those little texts, or calls or drop by’s show me that I am not forgotten.

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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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My 2014 Twenty & 14 Grateful List

In the spirit of Thanksgiving I decided to take a step back and make a list of the top Twenty and 14 things that I am grateful for. I have decided to leave them in random order because putting a numerical or symbolic meaning next to each of them is ridiculous.

  1. Beckett is on a medication that helps him pee the extra fluid in his abdomen out and he doesn’t need to have to carry his yellow accessory (drain) with him.
  2. Beckett’s poop has dark colors. Light/white poop is a sign of liver failure. The color of poop has never meant so much to me.
  3. That  “Number 1” and “Number 2” on my Twenty & 14 Grateful List both have double meanings. Do you get it? Number 1 and number 2. Seriously can’t stop laughing right now.
  4. We will be spending Thanksgiving at home and not at the hospital. Kim and I were worried for a while that this years feast would be taking place in the Primary Children’s cafeteria. May God bless those families who will be there in our place.
  5. Adalyn June. Addie is our oldest child. She is the symbol of love in our family. There is nothing that she wouldn’t do for her brother or sister. The sacrifices she has made during Beckett’s battle have been just as hard as any sacrifice that Kimmie and I have made and it doesn’t go unnoticed. There isn’t a day that passes that I don’t thank God for this princess being my first born. Love you June!
  6. Dr. Weston Spencer at Alpine Pediatrics in American Fork. The man gave us a chance by recognizing Beckett’s rare disease immediately and running the right blood tests. I will be forever grateful for him!
  7. The best neighbors. Seriously the best. We thought we were loved and cared for before but we had no idea what a neighborhood could do. Now it’s our turn to pay it forward.
  8. Subway sandwiches. You can’t beat the Spicy Italian. Lettuce, tomatoes, pickles, olives, mayo, mustard, and black pepper over pepperoni, salami, and some sort of processed white cheese.
  9. Our “primary” nurses. You know who you are. These nurses aren’t just employees of a hospital. They are family. We are so grateful for their willingness to accept our request. They take care of our son and watch over Kim and I. The weight they carry is just as heavy as ours as they counsel with our doctors. With tears in my eyes, we love you and are so grateful to have you angels apart of our battle.
  10. B E C K E T T. When Kim informed me that she was pregnant with Beckett, it took me several months to get on board with the idea of having another child. I wasn’t ready and was perfectly happy with my two sweeties. Becks, one day you will read this and I want you to know that you mean more to me than life itself. I would give everything I have up for you to live the life that you deserve son and to carry your BA torch. I am proud of you and will fight every day with you in battle.
  11. High by Young Rising Sons. I came across this song when Kim was in the last weeks of her pregnancy with Beckett and it became the theme song of her pregnancy. It has now turned into the theme song of Beckett’s life. Touches my core every time I give it a listen.
  12. Technology. How blessed are we to live at a time when medicine practices have never been better? Not to mention that when my family needs the prayers of others I can Tweet, Facebook, and Instagram a request to hundreds of people. There is nothing I can’t do from a smartphone/tablet. Working has never been easier in this time of needing to balance life and work.
  13. Family. What a beautiful thing family is. There is no better way to understand how our Heavenly Father feels than being a parent. I am grateful for my parents, in-laws, and the many other individuals who have acted as parents in my life. I am grateful for my siblings and the strength that we draw from each other.
  14. Domo, Inc. This company takes care of their own and I am proud to be a Domosapien. By the way, we’re hiring.
  15. Raemee Kay. This peach leaves me speechless on a daily basis. From the beginning she has been my stress ball. She is the most physically dirty kid I have ever known. She is the instigator of mischief and she is more gifted than most. There is not a thing my Mimi girl can’t do. I am willing to bet that she can make anyone smile. Rae, don’t change because you are perfect sweetheart. Saying I love you is an understatement.
  16. Snow capped mountains. Let’s be honest with ourselves for a minute and admit that it’s breathtaking and a scenic view doesn’t get much better than snow capped mountains. If you want to argue with me than take a look at this picture by my friend Br1dger and sit back down.
  17. Our home. It’s cozy. It’s warm. It’s located in a city that I swore I would never live and now love. It’s perfectly located for our little world where we live our life.
  18. My Father in Heaven. We have had some words lately. Despite my frustrations and pains he has always listened to me. However many times I fall he sends me help. He loves me and shows me so I don’t forget it.
  19. Freshly shaved legs. You’d think I’d be meaning Kimmie’s legs. Don’t get me wrong, those are hot, but I am talking about my own. Oh, daddy. There is nothing like getting in bed or putting on a pair of pants over freshly shaved legs. Try it for yourself if you don’t believe me.
  20. Kimmie. She is my world and my strength. She is my best friend and my eternal love. She is compassionate and forgiving. Kim has a way with our kids that amazes me. Since day 1 she has been my living example of the Savior and has continued to be my example since then. I would be lost without her and am so grateful she is my companion in this life and the lives to come.

And

  1. Sound of water. Now I am not talking about from your sink. I mean from a river, stream, or waterfall. The sound of constant crashing and flexible adjustments that water makes as it gets tossed, turned, and dropped by running it’s course. I find the sound soothing and peaceful. I think there is a deeper definition of “going with the flow” that we often glaze over.
  2. Organ donors. These individuals are true life savers. These selfless individuals understand what life is about and want everyone to live life to the fullest. If you’re not a donor, you should be. A wise woman that I greatly respect once said, “if your child needed an organ to save his/her life, would you take it? If yes, then it’s reasonably expected that you’d be willing to donate.” Click here to register today.
  3. My sister. This woman keeps going. She inspires me. I hope to be more selfless like her.
  4. Nacho cheese. So freaking good! Right?!?
  5. Cycling. It’s freedom on two wheels. It’s my pain playground. It’s the time where I channel my heart, mind, and muscle to move as one. On the bike I learn the power that my body has and how all of the moving pieces inside God’s beautiful creation come together to take me to my desired destination.
  6. Our Liver Family. These liver families have brought Kim and I so much peace and have helped fortify Kim and I. It’s a family that focuses on love and support rather than judgement. The circumstances of our association are not ideal but we are better people now that we are rubbing shoulders with them.
  7. Sunshine. Ahhh! Let’s face it, there are no words to describe it’s beauty.
  8. Car sunroofs. What a brilliant idea! It’s a perfect place to let the fresh air flow into the car while letting the sunshine in from above. It doesn’t matter where you are when your sunroof is open you feel like you are vacation. You feel cool and on top of the world. Everyone deserves to feel that way. If your car doesn’t have a sunroof. Sell it. Get a car that does and soak up the rays.
  9. Life Trees. You’re probably like “Whhhat?!?!” A life tree is a tree that has equal or more years of life than you do. They are tall, strong and have deep stubborn roots. However, no matter how big they are, no matter how strong, nor how deep their roots run, they find new ways and areas to grow.
  10. Dreyers Mint and Peppermint ice cream. #numnum
  11. Mexican food. Doesn’t matter what it is. Taco Bell, Del Taco, Taco Time, El Azteca, Maria Bonita, Mama Chu’s, La Costa or Red Iguana. I’ll eat it. Tacos, burritos, quesadillas, taquitos, tamales, enchiladas, or tostadas. I’ll eat ’em.
  12. Our liver team. Dr. Book, Barbie, Holly, Brook just to name a few know exactly what they are doing. It’s not their first rodeo and we feel so blessed to be with one of the greatest doctors and teams in the country.
  13. Jesus Christ, my Savior. When it comes to the sacrifice of The Redeemer of mankind, I have always focused on the repentance aspect and being cleansed from my sins. I am learning now what people mean when they say “by His grace we are saved.” His grace saves me when I am feeling discouraged, tired, and scared. I am saved by the strength that he provides me. I am saved because he gives me hope.
  14. You. If you are reading this it means you care. I am grateful for your support. I know you want to help our family. One day, I will ask you to. Today isn’t that day and it’s not the right time. Until then, please stay curious. Please stay involved. Please keep praying that Beckett gets stronger and don’t ever hesitate to ask Kim and I for anything.

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My Little Beckett

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Oh how I love this little boy. My little Beckett. He amazes me everyday. He is perfection.

Because of everything going on, part of me feels like I’m being robbed of his infancy because I’m so concerned with what is happening medically. But at the same time I feel like I notice things more and little developments are more important to me. The day he found his hands will forever be etched in my memory. IMG_7146We were in the hospital for the third time and I remember worrying that he wouldn’t develop at the same pace as other babies his age. I knew he would spend a lot of time in the hospital in a bed and that fear overtook me. Then he started grabbing his hands and staring at them. It was my own little miracle. My vision of his future. He would be ok.

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This boy can melt my heart with one smile. He can melt anyone’s heart with his smile. We had so many nurses call him a flirt because he gives up smiles so easily.

He can speak to my soul when I look in his wise eyes. And he gets whatever he wants when he puts on his pouty face. IMG_7183

I soak it all in. I soak in his expressions. I soak in his eyebrows telling a story. I soak in his snuggles and little grins. Each time he reaches out and grabs my face, my mother heart bursts. IMG_7166

 

 

 

 

 

I love watching him sleep.
He is so peaceful and perfect. I often wonder what he is dreaming about. I wonder who is watching over him. Being home with him the past few weeks and not being in the hospital has really made me enjoy our boring mundane life. I can almost forget that there is anything wrong with him. I can almost pretend that he is perfectly healthy.

When I was pregnant with him, I just knew that there was something different about him. I knew he was a boy. I knew he was special. Then he was born and I felt instantly connected to him in a way that I can’t describe. It was very different than with my girls. At first I attributed it to the fact that he was a boy. That mother/son bond. But now I KNOW that isn’t the case. He is my gift. He is my treasure. He is my angel sent from heaven. His is a life that I will learn from daily. And we will not let his disease defeat us.

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