by | January 4, 2015 · 9:04 am

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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by | January 1, 2015 · 10:17 am

“Look Not Behind Thee…”

It’s quiet. It’s peaceful. The Christmas tree lights are on. My babies are asleep in their beds, occasionally coughing. I text Shawn at the hospital. Happy New Year’s Eve. What a year this has been. What joy we’ve felt. What peace. And then what heartache, anger and frustration. I start to feel myself sinking. Sinking into sadness at the direction my life is taking.

I need the Spirit. I need my soul to be taught. I say a small prayer and act on the first thought that comes into my mind. I find a video about New Years. And my soul soars.

We had a hard year. We’ve been terrified. We’ve learned many medical terms that I wish I didn’t know. We know how to take care of NG tubes and PICC lines. We have watched our baby endure surgery, blood draws, and watched as his belly fills up with fluid only to get to the point where he is struggling to breathe and needs the fluid to be drained. 8 times now. 8 times in two months. We are watching him waste away. Watching as his spine sticks out more and more. Watching as his arms and legs and bum get skinnier and more saggy with just his skin. It’s hard. It breaks my heart.

We haven’t said anything yet but when we came into the hospital this last Monday, we found that his portal vein is clogged. This is the reason we can’t get his fluid buildup under control. His surgery worked. It worked! But there is this weird disconnect where his liver is able to drain the bile but the blood can’t circulate the way it needs to because of the clog in the portal vein and the scarring of his liver. This means that the fluid leaks out of the veins into his belly. There is no fix except through a transplant. So the decision was made to list Beckett for a transplant. We were relieved. Finally a reason for why he is still so sick. Finally a direction to go. And then reality hit. A transplant. He is not even five months old. He’s so little. He’s so scrawny. Now we’re moving to major surgery. And lots of waiting for an available liver that matches him. Knowing that he is going to get so much worse before he gets better. We could lose him. We haven’t had enough time with him. So much fear and anxiety.

I’ve had many moments of wanting to go back. Wanting to go back to the time when life was easy and perfect. When we didn’t know about liver disease. When I didn’t know heartache the way I know it now.

But I’ve made a choice. I am not Lot’s wife. (Genesis 19:17,26). I will not look back. “She doubted the Lord’s ability to give her something better than she already had. Apparently, she thought that nothing that lay ahead could possibly be as good as what she was leaving behind” (Jeffrey R. Holland ‘The Best is Yet to Be’).

As I watched the New Year’s video last night about Lot’s wife, I had a glimpse of my future. I saw vacations with my whole family. I saw laughter. I saw late night conversations. I saw a little boy running around with joy on his face. I saw a future missionary for our church. I’m never looking back. I’m never wishing away this life I have now. I’m never wishing away the person I am becoming nor the people I’ve met who have helped me and changed me. I know that this year is going to be hard and painful as we potentially will watch our son receive a transplant. We will have many scary days. Lots of time in the hospital. And yet, I know that the Lord has such amazing plans for my family, whatever form they come in.

Today is the first day of 2015, the first day of the rest of my life. The first day of the rest of all our lives. Stop looking back. Focus on the future. Because it’s bright. And shiny. And wonderful. And God loves us. He loves me. And He loves my son. IMG_7496

 

 

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by | December 24, 2014 · 2:03 pm

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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by | December 22, 2014 · 1:05 am

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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by | December 16, 2014 · 6:26 pm

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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by | December 13, 2014 · 2:15 am

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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by | December 2, 2014 · 9:02 pm

Doubt

Ever since I was a little girl, all I ever wanted to be was a mom. Growing up, I loved to watch my siblings and eventually I started babysitting other families. I loved it. I may not have been the best babysitter but I learned a lot. And I was so excited and ready for my own family.

After Shawn and I were married it didn’t take us long to decide that we were ready for kids. And then Addie joined our family and my dreams came true. I was a mom.

Being a mom came easy to me. Sure there were hard days and frustrating times, but it felt like I was made to be a mom. I had natural instinct about what was going on with her.

Then came Raemee. Everyone said two kids was hard. But I figured it out and it didn’t seem so bad. And then Beckett. Everyone said three kids was rough. It didn’t take long for us to fall into a routine. Being a mom was easy. I was able to make decisions and I knew what to do for my kids.

So why do I question everything I do as a mom now that Beckett has this disease? Why do I doubt every decision? Why does every little thing scare me?

My confidence has shattered. My ego has cracked. I find myself scared to make any decision, fearing I’m messing up. I kick myself all the time that I didn’t pay close enough attention to his skin color before he was diagnosed. I’m angry at myself that I couldn’t see just how distended he was before he needed his belly drained. I don’t trust myself.

I am like that fourteen year old again, not doing a very good job but wanting so desperately to be enough. To be good enough. To be trusted to do the right thing.

I remember a couple months before Beckett was born visiting my best friend in the hospital where her newborn daughter was having a hard time and was in the NICU. I remember how scared I was for her and how strong she was. I remember saying to her, “I could never do this. I could never be the mom to a sick kid.” And then just a few short months later here I am.

There is no manual. There is no guidebook. There is nothing but myself, and my fervent desire to be a good mom, a great mom. I have to let go of my failures. I have to learn. I have to trust. Trust myself, that I am good enough. That I can do this. I can be a mom and a dang good one. Because I’m trying and because I care.

And there are others who trust me too. I can see it. Our doctors trust me. My husband trusts me. My girls trust me. And my beautiful baby boy trusts me. But most of all, my God trusts me. So I will trust in Him and let go. Let go of the fear and the pain and the doubt. I will piece back together my confidence. It’ll take time. It’ll be hard. And I’ll cry a lot. But I was born to do this.

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by | November 29, 2014 · 10:20 am

Biliary Atresia Awareness

IMG_7088December 1st is Biliary Atresia Awareness Day. A day I never thought I’d know.

We are blessed to be part of a very loving liver family. They have welcomed us in without question. They have cried with us and celebrated with us. Each has their own story to tell; each story is unique and equally amazing. Some are in the middle of their journey and others, like us, are at the beginning. I wish that I could tell everyone of all the wonderful people we’ve met and the incredible stories we’ve heard and the amazing miracles we’ve seen. But there just aren’t words.

So to honor our little warrior Beckett and all those who are currently living with Biliary Atresia or have a child with BA or have experienced loss because of BA, we ask that on Monday December 1st, you wear either yellow for liver disease or green for organ donation. Post a picture. Hashtag #loveyabeckett and #biliaryatresia and #organdonation. Help us spread the word. Help us raise awareness!

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by | November 27, 2014 · 9:07 am

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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by | November 25, 2014 · 3:07 pm

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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